Ileostomy



Definition

An ileostomy is a surgical procedure in which the small intestine is attached to the abdominal wall in order to bypass the large intestine; digestive waste then exits the body through an artificial opening called a stoma (from the Greek word for "mouth").


Purpose

In general, an ostomy is the surgical creation of an opening from an internal structure to the outside of the body. An ileostomy, therefore, creates a temporary or permanent opening between the ileum (the portion of the small intestine that empties to the large intestine) and the abdominal wall. The colon and/or rectum may be removed or bypassed. A temporary ileostomy may be recommended for patients undergoing bowel surgery (e.g., removal of a segment of bowel), to provide the intestines with sufficient time to heal without the stress of normal digestion.

Chronic ulcerative colitis is an example of a medical condition that is treated with the removal of the large intestine. Ulcerative colitis occurs when the body's immune system attacks the cells in the lining of the large intestine, resulting in inflammation and tissue damage. Patients with ulcerative colitis often experience pain, frequent bowel movements, bloody stools, and loss of appetite. An ileostomy is a treatment option for patients who do not respond to medical or dietary therapies for ulcerative colitis.

Other conditions that may be treated with an ileostomy include:

Demographics

The United Ostomy Association estimates that approximately 75,000 ostomy surgeries are performed each year in the United States, and that 750,000 Americans have an ostomy. Ulcerative colitis and Crohn's disease affect approximately one million Americans. There is a greater incidence of the diseases among Caucasians under the age of 30 or between the ages of 50 and 70.


Description

For some patients, an ileostomy is preceded by removal of the colon (colonectomy) or the colon and rectum (protocolectomy). After the patient is placed under general anesthesia, an incision approximately 8 in (20 cm) long is made down the patient's midline, through the abdominal skin, muscle, and other subcutaneous tissues. Once the abdominal cavity has been opened, the colon and rectum are isolated and removed. The anal canal is stitched closed.

An ileostomy can be placed in different sites on the abdomen (A). Once the incision is made, the ileum is pulled through the incision (B), and a rod is placed under the loop. The loop is cut open, one side is stitched to the abdomen (C). The portion of intestine is flipped open to expose the interior surface (D), and the opposite side is stitched in place (E). (Illustration by GGS Inc.)
An ileostomy can be placed in different sites on the abdomen (A). Once the incision is made, the ileum is pulled through the incision (B), and a rod is placed under the loop. The loop is cut open, one side is stitched to the abdomen (C). The portion of intestine is flipped open to expose the interior surface (D), and the opposite side is stitched in place (E). (
Illustration by GGS Inc.
)
Other patients undergoing ileostomy will have only a temporary bypass of the colon and rectum; examples are patients undergoing small bowel resection or the creation of an ileoanal anastomosis . An ileoanal anastomosis is a procedure in which the surgeon forms a pouch out of tissue from the ileum and connects it directly to the anal canal.

There are two basic types of permanent ileostomy: conventional and continent. A conventional ileostomy, also called a Brooke ileostomy, involves a separate, smaller incision through the abdominal wall skin (usually on the lower right side) to which the cut end of the ileum is sutured. The ileum may protrude from the skin, often as far as 2 in (5 cm). Patients with this type of stoma are considered fecal-incontinent, meaning they can no longer control the emptying of wastes from the body. After a conventional ileostomy, the patient is fitted with a plastic bag worn over the stoma and attached to the abdominal skin with adhesive. The ileostomy bag collects waste as it exits from the body.

An alternative to conventional ileostomy is the continent ileostomy. Also called a Kock ileostomy, this procedure allows a patient to control when waste exits the stoma. Portions of the small intestine are used to form a pouch and valve; these are directly attached to the abdominal wall skin to form a stoma. Waste collects internally in the pouch and is expelled by insertion of a soft, flexible tube through the stoma several times a day.


Diagnosis/Preparation

The patient meets with the operating physician prior to surgery to discuss the details of the surgery and receive instructions on pre- and post-operative care. Directly preceding surgery, an intravenous (IV) line is placed to administer fluid and medications, and the patient is given a bowel prep to cleanse the bowel and prepare it for surgery. The location where the stoma will be placed is marked, away from bones, abdominal folds, and scars.


Aftercare

Following surgery, the patient is instructed in the care of the stoma, placement of the ileostomy bag, and necessary changes to diet and lifestyle. Because the large intestine (a site of fluid absorption) is no longer a part of the patient's digestive system, fecal matter exiting the stoma has a high water content. The patient must therefore be diligent about his or her fluid intake to minimize the risk of dehydration. Visits with an enterostomal therapist (ET) or a support group for individuals with ostomies may be recommended to help the patient adjust to living with a stoma. Once the ileostomy has healed, a normal diet can usually be resumed, and the patient can return to normal activities.

Risks

Risks associated with the ileostomy procedure include excessive bleeding, infection, and complications due to general anesthesia. After surgery, some patients experience stomal obstruction (blockage), inflammation of the ileum, stomal prolapse (protrusion of the ileum through the stoma), or irritation of the skin around the stoma.


Normal results

The physical quality of life of most patients is not affected by an ileostomy, and with proper care most patients can avoid major medical complications. Patients with a permanent ileostomy, however, may suffer emotional aftereffects and benefit from psychotherapy.


Morbidity and mortality rates

Among patients who have undergone a Brooke ileostomy, medical literature reports a 19–70% risk of complications. Small bowel obstruction occurs in 15% of patients; 30% have problems with the stoma; 20–25% require further surgery to repair the stoma; and 30% experience postsurgical infections. The rate of complications is also high among patients who have had a continent ileostomy (15–60%). The most common complications associated with this procedure are small bowel obstruction (7%), wound complications (35%), and failure to restore continence (50%). The mortality rate of both procedures is less than 1%.


Alternatives

Patients with mild to moderate ulcerative colitis may be able to manage their disease with medications. Medications that are given to treat ulcerative colitis include enemas containing hydrocortisone or mesalamine; oral sulfasalazine or olsalazine; oral corticosteroids ; or cyclosporine and other drugs that affect the immune system.

A surgical alternative to ileostomy is the ileal pouch-anal anastomosis, or ileoanal anastomosis. This procedure, used more frequently than permanent ileostomy in the treatment of ulcerative colitis, is similar to a continent ileostomy in that an ileal pouch is formed. The pouch, however, is not attached to a stoma but to the anal canal. This procedure allows the patient to retain fecal continence. An ileoanal anastomosis usually requires the placement of a temporary ileostomy for two to three months to give the connected tissues time to heal.


Resources

books

"Inflammatory Bowel Diseases: Ulcerative Colitis." In The Merck Manual of Diagnosis and Therapy , edited by Mark H. Beers, MD, and Robert Berkow, MD. Whitehouse Station, NJ: Merck Research Laboratories, 1999.

Pemberton, John H., and Sidney F. Phillips. "Ileostomy and Its Alternatives" (Chapter 105). In Sleisenger and Fordtran's Gastrointestinal and Liver Disease , 7th ed. Philadelphia: Elsevier Science, 2002.

Rolandelli, Rolando H., and Joel J. Roslyn. "Colon and Rectum," (Chapter 46), In Sabiston Textbook of Surgery . Philadelphia: W. B. Saunders Company, 2001.


periodicals

Allison, Stephen, and Marvin L. Corman. "Intestinal Stomas in Crohn's Disease." Surgical Clinics of North America 81, no. 1 (February 1, 2001): 185-95.

organizations

Crohn's and Colitis Foundation of America. 386 Park Ave. S., 17th Floor, New York, NY 10016. (800) 932-2423. http://www.ccfa.org .

United Ostomy Association, Inc. 19772 MacArthur Blvd., Suite 200, Irvine, CA 92612-2405. (800) 826-0826. http://www.uoa.org .

other

Hurst, Roger D. "Surgical Treatment of Ulcerative Colitis." [cited May 1, 2003]. http://www.ccfa.org/medcentral/library/surgery/ucsurg.htm .


Stephanie Dionne Sherk

WHO PERFORMS THE PROCEDURE AND WHERE IS IT PERFORMED?


Ileostomies are usually performed in a hospital operating room . The surgery may be performed by a general surgeon, a colorectal surgeon (a medical doctor who focuses on diseases of the colon, rectum, and anus), or gastrointestinal surgeon (a medical doctor who focuses on diseases of the gastrointestinal system).

QUESTIONS TO ASK THE DOCTOR


Also read article about Ileostomy from Wikipedia

User Contributions:

1
jaman graham
my brother has an ileostomy he has draning coming from his rectum he has seen his surgeon concerning this, he says it is normal he has had this ilestomy now for 1 year . the drainage is so much it is like he thru his rectum. the consitency is like starch. this has been every day for 6weeks now. it is about 75cc he puts. out.please tell me if this normal. thank-you jan graham home # 6612846651.
2
RIta
Is it normal for a person who has a temporary ileostomy to have gas and small stool movements from the rectum? My friend had an ileostomy two weeks ago and has had these for the last couple of days.
3
Leslie Bates
I've had an ileostomy for 40 years come this November. From time to time, I've had skin irritation around the stoma, of course under the bag. I usually can treat itwith Karaya powder which I use every day. However, over the last month I've noticed the skin irritation may be worse. Actually, the irritation bleeds a little. I dragged out a heat lamp and put that on for a few minutes before and after my shower. The irritation is not getting any worse, but is at a standstill. My diet hasn't changed. I did quit smoking in January, 2007, but went on the comit product. That didn't create any problems, as other lozenge products did. Since as of late I'm convinced it is the comit, but am down to two lozenges a day. I really shouldn't even be taking this anymore, but I started smoking around 17 years of age. I got sick at 12 years old and by the time the ileostomy was performed I was 15 years old. Anyway, if anyone can suggest another way to clear up the irritation, I would appreciate hearing something. My next bet is to ask my supplies provider.

Regards,

Leslie Bates
llvanbates@sbcglobal.net
January 9, 2009
4
Sheryl A. Ray
I Had My Ostomy Since 1971! For 39 Years! I fell Alot Better Ever! You Can Do any Thing You Want!
5
Rebecca
I have recently become involved with a gentleman that had an ileostomy 30 years ago. We have not been intimate as yet but he has been very honest about his condition. I am not sure I can handle the intimate part as I don't know or can figure out if that will be a problem. Can sexual satisfaction be reached?
6
dr tahir ali
hi
i m vary to study your article
its nice work regarding to a medical reserch,
plz send me more article
7
Nancy
I have an ileostomy and I have sore skin around the site and can't find any solution for my
problems. Also, I need suggestions on what food to eat to help my condition.
Thank you.
8
michelle
Nancy, I also have a new Ileostomy and I have skin breakdown around my pea sized stoma. I can tell
that the best thing in the world to use to clear it up is "Athsma-court" (inhaler). You will need a perscription from your Dr. but it is almost an instant healing. Just spray it on the very broke down skin and within a 24hr. period it will be healed.
I had surgery on the January 13 this year.
I have had four small soft bowel movements in the past week.
Is that something I should talk to my doctor about?
I just had the procedure done 4 weeks ago and I have cramping again and blood mixed in with my stool. I called today and the doctor said this is normal. I have my doubts but I will wait and see what happens.
11
Gretchen
My cousin has an ileostomy and has had severe dhydration problems.He can't eat or drink and ends back in the hospital on IV's. Does anyone have any suggestions how he can keep himself hydrated?
Hi Grethchen. the only reason for dehydration in this case would be taking up less fluids. i have a temporary ileostomy done on me and i eat normally n drink water a lot or take fluids instead. sometimes it makes the discharge high in water content which is a bit irritable as i have to drain my bag more frequently, but there is no reason to escape from it. i face no problem other than draining my bag about 8 times a day. hope this helps as to what i have percieved from your question is that your cousin eat and drink less because he/she may have problem with the discharge coming out frequently. if this is not the reason then surely refer some other experienced doctor.

Regards,

MOIN
i had an ileostomy about 3 months ago i have had a lot of leakage problems and sometimes very raw and painful for the last week i have had severe redness and bloody arround stoma it is so painful it is unbearable does any one have any sugestions i need help!
I have had an ileostomy for almost 3 years. clean good around the stoma, you must use adhesive remover if it is not clean around the stoma good then their is going to be a leakage problem. and after the bag and etc is applied stay still for a well until the paste has time to make contact and dry. I cannot sleep in the bed I sleep in a recliner to help prevent leakage. a recliner is like a hospital bed. Measure your stoma maybe your wearing the wrong size? Their is no end to this at least not for me. their is always leaks, itch, or bags break and etc. must be prepared at all times. this business of living a normal life well I don't know who said that?
BUT I have to agree on one thing that I am blessed with, I am not sick like I was before the surgery. So I am happy with my results from Mayo Clinic. And yes I would do it again. Good Luck
I have been intimate lover with a woman with an ileostomy evey thing works just fine. I find her sexy and we have a full sexual connection no less then any other. She is beautiful n every way.
I had an ileostomy done in sept of 09'. I am now facing a decision as to fully remove the rectal stump that is left. I have a pelvic abcess that is draining from the rectum and a large amount of Crohn's disease in the rectum. My GI thinks I need it but my surgeon thinks that I may have more problems with pain and healing if I get it done. With the Crohn's disease active it is taking a toll on my well being, like constant fatigue, eurythema nodosum, and pain.
I am wondering if anyone has had this type of surgery done and what comments they would have for me to make a decision.
GOOD ARTICLE
THE PROCEDURE IS QUIET INTERESTING AND LIFE SAVING AS WELL
18
Brittany
I had to have an emergency colectomy Feb 2010 due to toxic mega colon from U.C. Im 21 and was 7 weeks pregnant. I have had some tough times wiht my ileostomy and have been hospitalized 9 times since my initial release for dehydration to left over sludge in my abdomin...My ileo itches, hurts, and is just plain annoying. Because my stomach is growing with the pregnancy everyone can see my bag and I get very embarressed but, I have a WONDERFUL family and boyfriend who mentaly/emotionaly support me. My boyfriend has never looked at me with disgust or been turned off. We are actually more sexually active now than ever before. My daughter and I have a chance at life thanx to the surgery. Im no longer in such pain as I was with the U.C...Its hard but well worth it :)
I just had surgery and had all my large colon removed and got a Ileostomy. It has been two weeks and i be having lots of pain in my stomach with burning feeling. Can anyone tell me how long does this pain last and how can i stop the burning feeling that going on?
My sister is supposed to go in for an ileostomy but doc said she has too much gas and that is why her tummy is swollen.Now she has to go in hospital and get her tummy down..is it advisable to have the ileostomy right after that?
Hello, # some part of digested foods are absorbed in the ileum so, how does the patient undergoing this procedure get his normal nutrient which is absorbed by this intestinal portion? Doesn't have any effect on patients normal food process?
Please I want to understand it and email to me the clear answer.
Thanks!!
hi, my husband ,(69)has had surgery 3 weeks ago, has already been hospitalised one week because of dehydration, i wonder, how he is ever going to put back on some of the 11 kilos he lost in the process??!! he finds it difficult to eat, has from earlier surgery (25 years ago) only one third of his stomach lef. twhat nutrition can i give him , supplements etc. without causing diarrheoa.?? he is always very tired and utterly exhausted. he loves his beer and i wonder if this could give him a problem? he is supposed to have the ileostomy for 1 to 1/2 month. many thanks
i was put in hospital sept. 2008and came out march 2010 i don.t rember much of that time i have bleeding from rectum burning inside of my body iratition around the ileostomy and two more herinas and my dr. says live with pain so how do you have a normal life i can't find anyone to help me all sugestions welcome
My dad had a colon resection and it didnt go well do to vascular disease. He had to have and emergency surgery 6daya later and now has an ileostomy. He is still in icu they say he'll be there atleast another week maybe even 2. I am concerned because he is diabetic, what are his risks with the ileostomy for infection? I am also concerned about his diet now.. and how he will need to make an aggressive life change. He has had history of depression and I am worried how all of this will effect him. Please send me what ever support anyone can. I am doing research now so I can arm myself to be an advocate and support to him when he recovers. Thank you
my father had a permanent ilostomy bag fitted just over 10 months ago and just lately has had leakage from his rectum,is this normal?
Hello, I have a question.

My father recently had an Ileostomy and after 3 weeks in the hospital he was allowed to go home, under the care of my mother. While in the hospital there were many times where he did not have appetite and the protein in his blood was very low, so they fed him intravenously. After this he started eating. Just yesterday he came home he was okay and then today he did not have an appetite again. I am just hoping that he can regain his appetite. Is this normal? And how long does it really take to get into a routine life style without all the complications of surgery? By the way my dad is 71, but he worked until just a few days before his operation which was on July 12. Thank you in advance for your response to my questions.


Shahin
hi, my baby had an ileostomy when she was 5 days, she had sever skin irritation but alhamdullelh we control it, now she's 3 months, the day after tomorrow shes post for stoma clousure, i'm worry if she will grow up like her twin? and what about her food intake?
Can you eat normal food and drink after this procedure? Can you swim adn play golf. How long until you feel human again?
is there any medicine available to cure ileostomy skin ulcer. Is it advisible to apply and place the bag over that. Is it true ileostmy patients are likely may affect with herenia.
I am helping an older lady with an illeostomy. She seems to fight dehydration, and fatique. I think the fatique is related to the fact that she doesn't have a big appetitie.

She also has a history of cardiac issues. She was very active in her earlier years. My question is what extra foods can help her maintain her energy levels. I recently made her a strawberry/bannana milk/ice cream smoothy. She told me her stomach did "flip flops". Does this mean she can't digest lactose? Your response is greatly appreciated.
Hi, My mom had an ileostomy 7 years ago. She started having trouble with blockages about 1 year ago. Never before, but at least 6 times in the last year. The docs do not know why she is having these blockages. CT scans and x-rays do not show anything. Does anyone else have this problem? Any ideas on what may be causing the blockages? Thanks so much for your input.
32
Jackie
I've read all of the questions and comments. I am very discouraged that very few have been answered. What is the purpose of this site if questions aren't answered???

I will have ileostomy surgery soon. This is such a horror to me that I can't contemplate life afterward. I've suffered for 22 years with Crohn's disease and there is no treatment left for me. Just the thought of having to care for a stoma makes me want to vomit. The smell, the mess, the sores and blockages. This is a normal life? Who's saying that? Is it the doctor or the patient? After reading everyone's concerns (and my heart and soul go out to every one of you) I can see that I'm going to be dealing with an unnatural, disgusting and unacceptable procedure.

I currently have a good friend with a colostomy. He is skeletal, he smells all the time, and is always having trouble with his stoma.

After reading these comments, I have decided that I'd rather live with the pain of my disease than go through this horrendous, dibilitating and undignified procedure. I just can't do this.
33
Elizabeth
Jackie, it's not an unacceptable procedure. It's a viable option if you're tired of being on sterroids and being in pain, and being in and out of the hospital and unable to enjoy your day to day life...always looking for the nearest bathroom and unable to enjoy foods without certain pain and discomfort.

I've now had my ileo for only three weeks, and it's been an adjustment for sure. Yesterday, was the first day i didn't cry about it. But, as I start to feel better I can begin moving on with my life. I'm almost hurt you could call this horrendous, dibilitating, and undignified. If you think that the 750,000 Americans who currently have ostomy's are horrendous, that's truly unfortunate because surgery is not a loss. It's a way to regain a life...and not everyone has problems with blockages, odour, care etc...it's somewhat painful, but it's not as bad as the cramps I use to have!

I wish you all the best in making your decision. I hope you don't have to live sick forever because of your fear. We're doing the best we can with what's available to us. I have a temporary ileo, and will be having a second surgery to open my "J-pouch" in a few months time. I'll be able to go to the bathroom normally (rectum), but will not have the full function of a colon. So 6-8x a day, about the same as emptying your bag. Maybe this is an option for you? Then you only have to have the stoma for a few months? Talk to your surgeon team or GI for some info on this...it's quite common now :)
34
Sherri
My mom has had an ileostomy for 4 months. She has been in and out of the hospital ever since. Due to dehydration, unstable magnesium and potasium levels. She will make it home for 2-4 days and back in the hospital. The doctors have her taking opium drops,(which Im not thrilled about) to thicken her flow and for stomach function. They have also tried high doses of immodium and changed her diet. But nothing is working. My mom has went from 138lbs. to 104 lbs since June. If anyone has any advise, it is welcomed. Everything the doctors are doing is not working.
Rebecca, I have had an ileostomy for 8 years. I too was concerned about sexual relations with my wife. More than anything, her attitude gave me the confidence I needed. However, there are cloth belts that should be worn prior to sex. The ileostomy is held horizontally across the stomach and is convieniently out the way. We both enjoy a full sex life. It is not even a consideration any more. i use the same belt when i play tennis. I don't even think about my ileostomy any more. Nor will you.
what do i do if a ileostomy bleeds?
i need to nok as soon as possible please help
It is normal to pass lots of fluid threw an illostomy. I mean just think about it. It is a whole in the liquid part of the bowel.

Its normal for skin irritation too. I use a stoma heasive powder on my daughter..as well as some past.. than i take the middle of the bag im cutting out to fit around the stomas and cover the skin in between and than put duo derm over that..and some more past..so not much is sticking out..it works wonders.. :) i also take off her bag from time to time and let her stomas air out :) it helps a lot.

illostomys do bleed its irritation :) its completely normal.
I am Jill. I'm 49 .
I am having surgery on Nov. 17,2010. I am scared because the doctor told me today that I am not only having the left colon removed but they are also stating out the right colon and the small bowel. Does anyone out there willing to go over this procedure with me and e-mail or talk to me for a couple? please e-mail me at jillpooh@comcast.net Thank you inadvance for your help. Jill Myron
My fiance has had a permanent ileostomy since June 2010 due to colorectal cancer and only has about 25% of his small intestines left. He had to have a second procedure in July 2010 which left the stoma at the surface of the skin, maybe even a 1/2 inch below the surface of the skin. So his stoma doesn't stick out like a typical stoma would due to the complications of the second surgery. He has had to have an outpatient procedure in September to cut the skin back from the over the stoma because the skin is healing over. He is using appliances with convexity but it is now December and he is going to have to have the same procedure he had in September done again. Unfortunately, it is to risky to cut him open again and revise the stoma due to the severity of his cancer. If anyone has any ideas if there is an appliance out there that has very deep convexity or so called tricks of the trade that they would like to share, we are open for suggestions.
And to the men out there who have ileostomys and you were that man's man(the handy man of every trade) before your surgery what have you done to keep up your spirits and return to a semi-normal quality of life, including sexually. My fiance has not attempted or even tried to initiate any type of sexual encounter. How did you get passt that?
I love my fiance and do not see him as disgusting or smelly. I have been with through all this and care for him deeply. An ileostomy is a complete change in your life but it is managable and it beats the alternative of death.
My husband recieved his surgery in September after developing a blood clot and causing Toxic Mega Colon. He lost most of the colon and about 2 feet of the lower intestines. We have been
having a difficult time keeping the bag from leaking. The area is too close to his open
incision and over laps. Even the nurses are having a hard time and yet they expect me to be
able to handle this when he returns home. I am freaked out on taking care of it. He is also
coming home with a Trach as well as a g/j feeding tube. I do have a paper on what can and shouldn't be eaten by a person with an ileostomy. Mainly stay away from anything with skins unless peeled. No seeds or skins, nuts and anything that contains high fiber including most vegetables and multi grains. So in other words anything truly healthy is basically out of the question as well as high fat foods. But since my husband can't orally eat and will be on a feeding pump guess we don't need to deal with that. He is 53 and so far as lost 25 lbs Can't afford to loose anymore wasn't overweight to begin with. My biggest concern is he is constantly
elimanating and makes changing the bag difficult because it comes out so fast. And he has to have a reserve bag attached to the initial bag because it fills so quickly. How will we ever go out in public for any length of time? You can't carry around a huge folly bag? I am pretty discouraged and scared. Thx for the vent.
My husband recieved his surgery in September after developing a blood clot and causing Toxic Mega Colon. He lost most of the colon and about 2 feet of the lower intestines. We have been
having a difficult time keeping the bag from leaking. The area is too close to his open
incision and over laps. Even the nurses are having a hard time and yet they expect me to be
able to handle this when he returns home. I am freaked out on taking care of it. He is also
coming home with a Trach as well as a g/j feeding tube. I do have a paper on what can and shouldn't be eaten by a person with an ileostomy. Mainly stay away from anything with skins unless peeled. No seeds or skins, nuts and anything that contains high fiber including most vegetables and multi grains. So in other words anything truly healthy is basically out of the question as well as high fat foods. But since my husband can't orally eat and will be on a feeding pump guess we don't need to deal with that. He is 53 and so far as lost 25 lbs Can't afford to loose anymore wasn't overweight to begin with. My biggest concern is he is constantly
elimanating and makes changing the bag difficult because it comes out so fast. And he has to have a reserve bag attached to the initial bag because it fills so quickly. How will we ever go out in public for any length of time? You can't carry around a huge folly bag? I am pretty discouraged and scared. Thx for the vent.
42
tammy
Someone told me to use peppermint oil in the ostomy bag to reduce odor. It works wonders, I was gagging everytime I needed to empty.
A combination of M9 drops and peppermint oil was a life saver!
My wife has a ileostomy and her bottom feels heavy like her bum is falling out. She has fluid sometimes bloody and pink color. She has drained the site sometimes draining 60 cc,her dcotor says its normal. It has been approximately two months since her surgery.
Hi, My 11 year olds son has had an ileostomy since he was 4 1/2 years old. He is having a lot of problems with liquid and odor coming from his rear end. We have been through most of the issues that everyone is having here. I just don't know what to do about the odor. He is in school, so I go in the middle of the day of it for him to clean up. He just asked me how is he going to go to college or work a real job if he can't do it without having to change his clothes every few hours so he won't smell. Does anyone know how we can solve this? Or at least what does everyone else do? Thanks, please email me, Cindy
45
Jay
I am a 22 year old guy from London UK, diagnosed with IBD two years ago. Mine is Ulcerative Colitis, through out my time at university the symptoms of urgency and constant rushing to the gents bothered me and basically made life very difficult. After trying diets and being on different medication i.e. Asacol Mesalazine, Steriods etc, nothing has worked for me. I have finally come to the reality that surgery is my only option. I have been scheduled to have my operation on March 10th, Initially my surgeon suggested that I can have J-pouch surgery which i was keen on as there was no way I considered a bag forever, however i am so eager to complete my studies first that i thought about carrying the stoma bag for a few years before doing surgery again, also I try to be realistic and think about (What if) the stoma was going to be with me for life? At least I would know what to expect and it wouldn't be a shock if i couldn't live with J-pouch for any reason.

There are a few things I'm worried about which I'll be very grateful if you could advice me on as you've had the ileostomy before. They are the following:

1) Odour- I'm very concerned about this issue. While wearing the bag can people smell the faeces that has filled it?? Although they say that the bags are odour proof I've read on the net within forums and blogs that smell may linger around ostmates. Please is this true? Because this is something I couldn't handle.

2) Leakage- Secondly what causes leakage? Does the bag leak itself and is this something I'll have to deal with quite often?

3) Skin irritation- What causes skin irritation? Is it the stools itself leaking? as i've heard that the bag itself may cause reaction with your skin.

4) Weight- Also since I've had UC i find it extremely difficult to put on weight as I cannot absorb food properly. I would love to gain my weight back. Having the bag does this mean that I will still have a lot of problems with weight loss? I just need to look proper healthy again.

5) Noisy wind- Another final major concern is the noise that I'll have to deal with, is it so loud that other's can hear it? Also how can i prevent this?

Sorry for bombarding any one with so many questions but as you know this operation is a major thing. Some times I just can't believe it's happening to me, my emotions these days are just ones of fright, i mean they say that taking out the colon will rid you of pain urgency etc which i hope will, but does one really and truly feel better after the op? Please help me on this one. To people with ileostomies, Would you say the op is a better way out of this constant pain?
my neighbor has just had an ileostomy.She has ovarian cancer and her large intestine had lesions. Her main problem since surgery is that she is losing too much fluid. She has been put on an opium drip 10 hrs each day to try to slow down the small intestine. Does anyone have any other treatment beside this opium. She tried going off it and using imodium but she went right back to losing too much fluid.
for sore skin i wash with white dial rinse and use baby ointment only the white one with zink. just keep rubbing it in. good luck
for sore skin i wash with white dial rinse and use baby ointment only the white one with zink. just keep rubbing it in. good luck
49
gem
Pat:
How does the wafer stay on if you use an ointment? I've been having leakage problem lately (5x yesterday). The shape and protrusion of the stoma changed so I'm not getting a good seal. My skin is raw. I use the powder but finding it that it prevents the wafer to stick properly, and I leak. I'm so frustrated. How does the raw skin heal when you have to put the wafer over it. I wish I could air it out...So, how does the wafer stay if you use an ointment? What else do you use to keep it in place?

Thank you.
Jay,

So sorry to hear about your health problems. To answer some of your questions, I'm no expert since I only have temporary ileostomy (going on 8 weeks now).

Odor: there isn't any odor if the contents are in the bag. Just make sure you clean the opening of the bag good after emptying because that could be a source of odor. The opening of the bag will get dirty, so wash with water really good. Sometimes, based on what you've eaten, it is very hard to clean thoroughly.
Leakage: this is caused by many things...folds on the skin, bad seal, change in the shape of stoma, improper size at the opening of the bag to the stoma itself, etc. The leak comes from the contents seeping through the wafer, and coming out on the side. You will know immediately if it does. It feels warm. It usually doesn't smell. Always carry a new bag with the whole precut already, paper towels, stomahesive, or anything else you use. I had problems once the shape of my stoma changed (it changes and becomes smaller), and it seems to have retracted into my body so it doesn't stick out as much. You can use a bag with convexity for this so the stoma protrudes more from your abdomen.
Skin irritation: caused by the leakage. Stool is so Irritating to the skin. The tape the surrounds the bag is sometimes irritating as well. They have powders, creams, etc.
Weight: you will lose weight. It just happens. No matter how much I ate, I can't seem to gain weight.

Good luck. Hope this info helps...:)
51
Caryn
Hi Jay
I got my ileostomy at the age of 16 in 1998.
Feel free to e-mail me to discuss my experiences if you like.
Carynkeppler@gmail.com
I have now had two ileostomy's, the first one resulted in me being incontinent with no control of m bowel! I then had an obstruction in the bowel, which the surgeon thought was in my imagination, but he was proven wrong! I then had to have a major urgent 6 hour operation in December 23rd 2009 after he found an obtruction in the bowel. He told me that he would not reverse the ileostomy for a year which he advised would be January 2011! When I consulted with him in January he said I was too frail and he was not prepared to reverse the stoma, and at this time referred me to a dietician! I am still waiting the outcome of this which is now 2 weeks since I saw her! I have been advised by individuals that he may not reverse this at all! Is this the case? My problem now is that my GP has taken full blood tests and I have B12 anaemia, which involves me having injections for 5 weeks and one every 3 months thereafter for life! It is called pernicious anaemia and I would like very much to hear from someone as to what they think will happen! What dangers are at risk when having a reversal and why tell someone you would reverse the ileostomy in a year then change his mind? Please help me! I cannot digest red meat, have an intolerance to wheat and yeast and need some feedback! The ileostomy has a a high output and I have not had a night's sleep in 4 year's! I have suffered a nervous breakdown soon after my last operation and have physical disabilities too! Please help me
Had my ileostomy in Dec.had a lot of leak problems till started using the cohesive wafer underneath.Prep skin with powder, and barrier wipes.Apply wafer after warming with blowdrier to shape. Then apply heat to bottom of unit after cutting. Rub to adhere both. Stick tape,apply bag.I have had it stay for 7 days no problem.
I have had my ileostomy for 1 1/2 years and have repeatedly had severe burns (several times third degree)around my stoma site. Currently it is completely around it and about 1 1/2" out. I have tried EVERYTHING that anyone has suggested-zinc oxide baby ointment, pepto bismol, mylanta, nystatin, hemmoride ointment, Rx burn meds, air dry, the powders and sprays designed for ostomies, paste, convex wafers...and the list goes on, I cannot really remember everything that I have tried. It is very convex, sinks in about 1/2" or a little more. the side closet to my scar is almost even with the skin and the other side only sticks out about 3/8". The lower side is also almost next to the skin-not anywhere near being centered like the pictures I see of stomas. The Dr. says that all of this is caused by my weight and until I loose weight he cannot create a J-Pouch. I even called a plastic surgeon to see if he could do liposiction to create a flat surface for the wafer to adhere to. He probably could, but Medicare will not cover it.
Does anyone have anything that will actually heal the burn around my stoma. I am currently sitting with my stoma over a trash can and wiping the drainage with paper towels. HELP!
I have emailed you twice and still my personal comment is available to everyone who google's me! This is very inappropriate and upsetting to know that a personal, private question is available to the world and it's friends. PLEASE REMOVE THIS IMMEDIATELY

THANK YOU
I have had an ileostomy for almost 3 years. Things have settled down some, but now I'm having problems with anal leakage. My husband says it's impossiblew beccause the rectum and anus aren't there any more. However, the discharge in my underwear is evidence, I know when it happens because I can feel it, usually with exertions, such as using the slideboard or bending over in my chair to pick something off the floor. I should add that due to diabetes, poor circulation, kidney failure, dialysis and having below-the-knee amputations, I have quite a few issues besides the ileostomy. Anyhow, my question is how is it possible to have anal discharge if there is no anus?
How does a person with only one arm take care of the ileostomy [emptying the pouch, cleaning the opening, changing the bag, etc.?]
58
Erica
This is for (26) Shahin Ghomeshi. I am 40 and have had an ileostomy for 12 years. I have a very hard time keeping hydrated. The hospital and Dr. in the small town I live in do not understand that oral hydration basically floods your stomach and doesn't allow for proper hydration to occur. Which also means, medicine, and nutrients are not getting absorbed as well. I just started finding articles on why I can drink so much, especially Pedialyte and get no relief, yet IV's hydrate me. I read so much about it I can't understand why the hospital won't even listen to what I'm trying to convey. They see my urine is clear, and that to them means I'm hydrated. Wrong, it means my fluid is not allowing vital things taken orally to stay in me. I also receive Protonix in my IV when they decide to give it (I pretty much have to present myself as on my last breath, which is ridiculous concidering all they need to do is verify what I'm explaining. I do need about 7 - 10 days of IV fluids and Protonix before I feel better, but then I'm ready to take on the world, and mostly the kitchen. I get extremely hungry, my pain meds work better, I feel alive again. I hope this helps you out, and I hope you have better luck than I do getting them to understand the basics, like "diluting oneself to the point of things passing too quickly" Makes sense to me and my family and several other people in the med. field, just not my Dr or the hospital. Sincerely, Erica
Hi, I work in mental health and one of my clients has a stoma bag. She had a surgery 5 months ago and has been complaining that the food she eats goes immediately through to the bag. I was just wondering if the food digests faster than usual.
my aunt had a procedure done to her several weeks back (april 29, 2011). the surgeon informed us prior to the surgery that the she will have colostomy. several weeks after the operation my aunt's condition turned worse. the doctor, after several minutes of probing informed us that they did not do a colostomy and they did not touch my aunt's colon because it turned out that she has stage 4 cancer. they did a loop ileostomy on her. after the operation until today no faeces has ever come out of her ileostomy. instead 3-5 mins after eating the food she eats can be seen being expelled into the colostomy bag. one time i gave her spaghetti. 3 minutes after eating i saw the chewed up spaghetti being spewed out into the bag through her ileostomy. her doctor said it was a normal occurence for a person with loop ileostomy.

please help me and my aunt. i need information on loop ileostomy. is it really normal for food to leave her body 5 minutes after eating? or did they make a mistake somewhere. i cant help but feel something is wrong. please help!!
my husband has had an illeostomy for 4 years and i look after it for him. once i clean the skin properly i spray with skin prep and let it dry completely. i then put on a seal{putty like round{ called eakin seal. it is very expensive but works. there is no burns around the stoma. i then add the flange(sticky) and attach the bag. for security i tape around with opsite. BINGO,, no more inflamed skin. all these things are available where you get your supplies. hope this helps..good luck
62
Steve
Does anyone know if a person with an ileostomy can be considered as 'disabled' and as such receive benifits (in the U.K.)
Jackie, Get checked for Celiacs Disease before you have an ileostomy. If the tests show up negative, that doesn't mean you don't have it, so just eliminate all gluten from your diet and see what happens.

Make it a Great Day!
Diana
MY HUSBAND BACK IN 2007 MY HUSBAND HAD TO WEAR A OSTOMY BAG FOR 9 MONTHS AND IT WAS REVERSED. HE HAD RUNNY STOLES ALSO. IT WAS SO BAD AT ONE TIME THEY HOOKED HIM UP BY A HOSE INTO A CONTAINER. IS NOW TAKING MEDICATION FOR DIARRHEA THEY PUT HIM ON LMOTAL IT HAS HELPED SOME BUT NOT THAT MUCH. EVEN AFTER 2007 IN TAKING THIS MEDICATION HE STILL HAS DIARRHEA. HE ALSO HAS THE STRONGEST ODER TO HIS BOWEL MOVEMETNS. I'VE VOICED MY CONCERSN WITH HIS DOCTORS AND THEY DON'T SEEMED TOO WORRIED. I SEE MOST AS I RESEARCH BOWEL REDUCTIONS MOST ARE DO TO Crohn's disease, MY HUSBAND'S WAS DO (THEY THINK) BY A CLOT. THEY WENT TO RELEASE HIM AFTER I WAS TRAINED TO TAKE CARE OF HIM AT HOME. THE DOCTOR SAID LET ME RUN ONE TEST ON YOU. IT CAME BACK THAT HE HAD A CLOT IN HIS LEG AND ONE GOING DIRECTLY TO HIS HEART. THEY LATER FOUND OUT THAT HE HAD A CLOTTING DISORDER FACTOR 2, AND SO DOES HIS SISTER. THEY NEVER FOUND THIS UNTIL 2007 EVEN WITH HIS TRANSPLANTS IN 1990 AN 2003.
IF one already has a temp.Ileostomy and wants a perm.Ileostomy,how and what do they do to
make this happen?Do they reenter through the stomach? What surg.cuts do they do?Please mail to
email address.Thankyou .
66
louise
Does anyone know about being hypothyroid (adequately treated) and then becoming extemely HYPOTHROID (TSH elevated to 25.9) after ileostomy surgery? will the dose of Syntroid have
to be changed?
8 michelle = my husbands skin was inflamed around the stoma over and over till one nurse suggested cleaning the area with wet cotton balls (as this helped her baby's skin recover) IT WORKED.
My husband had a ileostomy 15 years ago. He had a stroke 2 years ago. Since that time he has had problems with blockage in the stoma . He vomits every 30 min. for about 10 times. Then when he is able to start drinking liquids it will unstop. Is there any medicine to take to keep this from happening? Or anything he can do? Can you ream the stoma out? Would appreciate any information. He is 82 and when this happens it takes about 2 weeks for him to get back on his feel unless I take him to the hospital and they give him I.V.'s. Then he's up in a couple of days. But it happens so often he won't go to the hospital.
My husband had his colon removed on 10-27-2011 and and as of 11/21/2011 he is still in the hospital. The latest complication is fluid (not blood) coming from the wound and a small amount of fluid/blood coming from the rectum. This fluid and blood has been draining for 6 days now and although the doctors are saying that if his vitals/blood count/temp, etc are stable they are leaving the pump in the wound and the fluids will eventually slow down/stop. They are saying that if they go back in and clean it out with surgery, due to his fragile state, it would be very risky. Has anyone experienced this and have any advice?

Thank you.
Cathy
70
prashant
i have gone 1 year ago my instentine surgery , now i am feeling some blockage to pass the stool , and also i am suffering from hitus harnia. can you please told me is hitus harnia may be the cause of blockage in passing stool or it is seprate , if it is seprate problem then what can be the cause and treatment please suggest.
I HAVE HAD A TOTAL ILLOSTOMY SINCE JUNE, 1984,I FOUND OUT WAYS TO TAKE CARE OF MY OSTOMY AND MYSELF, I TAKE A SHOWER EVERY 2 DAYS, BUT THE WAY I DO IT IS SIMPLE, I HAD A FAMILY INHERATED DEASESE Calles familiar paloposus or gardners syndrome, i have a flat stoma and dod i have a problem with it untill i learned how to manage it, 13 years ago i almost died from a strangulation hernia around the stoma, i dehydrated, my kidneys failed, i was in the hospital for 6 days that time, i am so careful about dehydration and blockages now, i learned what to eat and not to eat, and up to what time to eat my mom had an illostomy and my grandmother had a colostomy which later was turned into an illostomy, i also get polpos in my digestive track including my pancress bio duct, was taken out with lazer sirgery and a tube down my throath, i am high risk for surgery, i have sleep apnea, copd and emphezemia
72
lyn
Could someone please help me with dietary advice, since ive had my stoma ive gained loads of weight, my stoma nurse told me to stay away from veg, fruit and salad, so how can i lose weight, what can i eat to help aid weight loss, and also what foods to avoid please help im desperate. Thanks in advance. Lyn
73
Brian
I had a total colectomy on Friday, November 4th; total colon and rectum removal, anus sewn shut. I was released from the hospital Tuesday, November 8th. Since then, my only issue has been the stitches where the "hand-assisted" incision was made. The "desolvable" stitches are like steel wire, and one still sticks out, catching on my clothing. Unfortunately, this is crazy uncomfortable. However, everything else seems to be working fine. It has now been a little over 6 weeks since the surgery, and I seem to be doing fine. I've gained about 5 lbs back since the surgery, which I need to continue pounding the food down as I'm still too skinny. I also had the unfortune of getting the stomach flu 2 weeks after surgery, so I was unable to go back to work until week 3. The pain slowly goes away, it does. Sex isn't really an issue either, as long as you have an understanding partner...our first time being intimate was the sixth day after surgery! My stitches where along my backside have fully healed, it's just them stitches from the hand hole. The worse is the top one gets covered by the wafer, and after having to change my appliance 3 times in one day has now broken open. Kind of a pain. Life is now MUCH better. I don't have to make sure I know where the bathroom is everywhere I go; I can now go to the zoo with my son, I can go to concerts again, I can go to the fair, anywhere where normally restrooms are few and far between. Why? I poop in a pouch! Simple as cake. Also, there is no odor. None. Well, there is when you empty your pouch, but who doesn't funk up the bathroom when they go # 2 anyway? It doesn't have odor unless you open the pouch to "burp" it (let air out) or when you empty it. Those little odor-free drops work wonders; add a couple drops each morning after you empty, and no stank.
74
Martin
I was diagnosed with Stage 2 rectal cancer back in June. After radiation and chemo treatment I had a large tumor removed and given a temp ileostomy on the 8th Nov. Thankfully after the surgery the cancer was downgraded to Stage 1, but the ileostomy has caused me more problems than all the other parts of my treatment put together. During Chemo I lost about 5lbs...since the ileostomy, I have lost about 25lbs...and from a guy who started off at 150lbs, that is a large percentage.

Personally, the ileostomy is a hell for me - yes I survived cancer, which I am eternally grateful, but the battle of weight loss, outputting on average 5 litres of waste a day, always feeling dehydrated, weak and tired, really gets you down.

The first couple of weeks after getting home, I had trouble keeping the skin around the area free from sores and redness, but the use of a skin barrier cream around the area of the ileostomy has helped no end. Still can't get use to the smell when I take the wafer off though.

I'm due for a reversal on 17 Jan. I know, that can have it's own complications and I may be jumping from the frying pan straight into the fire...but I can't wait. I honestly feel, that any longer, the ileostomy would have a major detrimental impact on my health as it stands at the moment.

My greatest advice is, try to keep hydrated. Through all this I have realised just how important hydration is to maintain health.
75
Patsy
Things my hubby & I have learned about Ileostomy care:
1. Always use Flexwear Wafers, they hold better & more comfortable. He uses the two piece drainable kind so we don't have to change bags every time he has a bowel movement. 2 piece drainable kind lasts 5 days usually, best if changed every 4 days.
2. Take hot shower to help loosen up the wafer from the skin when ready to change. Pick a time when you don't have bowel movements, if possible. Hubby prefers doing it in the mornings. Your skin would LOVE to aired out so if you can, just give your skin a few minutes to air before putting new bag on!
3. Use Cavilon No Sting Barrier spray or wipes. Spray works better. After shower, dry skin, spray Cavilon everywhere the wafer goes & especially right around the stoma, then fan it dry. Reapply the spray for double protection, fan dry.
4. Make sure you warm up the wafer with your hands before you remove the plastic & apply the paste. After applying the wafer to your skin, make sure you warm the wafer for at least 45 seconds to 1 minute with your hands, all the way around the wafer. This helps it stick better! Most forget to do this & has leakage problems.
5. We put Stomahesive Protective Powder right around the stoma after the wafer is applied to help keep it from getting infection. Then place the bag on the wafer and you're done!
6.. When you drain your bag, take a small glass of water & pour into bag from the drainable end to help clean the bag out. Hubby actually leans back a little to help clean the bag even better.He keeps a bottle of water with him wherever he goes so he can do this anywhere.
7. Keep an emergency bag kit, complete with wafer, bag, paste, spray, etc. ready to go in case you have to leave in a hurry to go somewhere.
8. Have your doctor keep track of your B12 level thru blood work. All Ileostomy patients will eventually lack B12 & have complications from it eventually. Hubby takes a multi-vitamin with B12 & will be getting B12 shots from his doctor starting next week. Best to take the liquid B12 or crush up the pill vitamins because the colon's gone & can't absorb the vitamin. Hubby was feeling drained, tired, no energy & it was all due to the B12 level being too low.
9. Drink LOTS of water!
10. If odor in the bag is too much, you can always add 2-3 drops of the Ostomy Appliance Deodorant to the bag & it really works!
76
kate
Does anyone have Lyme Disease, or has anyone HAD lyme disease??? If so, did anyone have more of a problem with appliance failures than usual?
Also, has anyone had an appliance problem (failure) caused by taking antibiotics?
Is anyone allergic to adhesive, and if so, what kind of, or brand of appliance do you use?
Has anyone had trouble with health insurance reimbursements from Medicare?
Thanks.
kate
77
helen
Vitamin e works so well on skin around a sore stoma. Do not use wipes with alcohol. Others work very well. Please note that not all ostomy nurses are helpful or knowledgeable, especially about sore skin around stoma. Thank you.
78
Annabelle
Hi Sherri,
In Oct 6, 2010 you wrote about your mum having trouble regulating her magnesium levels following an ileostomy. This sounds exactly like what my Dad is going through at the moment. What was the outcome for your Mum, were they able to regulate it. Any help/advice would be welcome. Hope everything is now going well for you both. Thanks A.
79
Sherry
I have an ileostomy that is to be reversed in a few months. I am terrified of the surgery and would like some feedback. Please if u have horror stories I do not want to hear them. I am scared enough. I am strong though and will be glad to get rid of this "pouch" !
80
Kansasfan
Having a take down is a breeze!! The only thing you need to watch is your scar!! I'm watching my daughter go through her 3rd ileostomy surgery due to her having so many hernia's! You are blessed that you are having a takedown!! We tried that, obliously it didn't work!! Everyone one else, please keep fluid, ANY fluid next to you at all times!! Drink drink drink!! It's so Important!! A little drink every hour will make a huge difference!! God Bless you all!!
81
Rachel
Hi ive had my ileostomy since 2006 had no problem until recently, started to get pain after eating on the upper left side of my abdomen, anyone got any ideas please.
I have had a Brooke ileostomy since 1980 for UC. I had two endoscopies showing irritation and GERD from a common hiatal hernia. I have had persistent chest pain for years and my cardiologist is at a loss. No visable blockages, however one doctor told me I had a possible heart attack.
The chest pain appears after eating, especially if I lie down too soon. I struggle to drain the stoma by putting pressure on my abdomen in an effort to feel better. My mouth is dry at night, even after drinking a whole glass of water. I have HBP an CKD stage 3 at 68 years old. Very fatigued. And to complicate the issue I have the Hep C antibody probably from the transfusion I had after surgery at that early time(1980), I was told I have a negative PCR for the hep c virus. Also have diabetes for about twenty years, now on novalog 70/30 and fearful of gaining weight. Extreme fatigue and stomach distention also.
I feel that my chest pain and related back pain is due to delayed emptying, or some kind of obstruction causing the fundus of my stomach to push against my heart. Tried grape juice, and now prune juice. Is there another surgery that can help me? I feel like death warmed over.
One more thing IF you have UC and are considering surgery I believe that in 1970 by serendipity I caused my own remission by demanding a painkiller in the hospital while on hyperalimentation prednisone and azulphidine ( at that time the only meds used). They sent me a psychiatrist who unbeknown to me gave me haldol, my pain STOPPED and my UC exacerbation went away to the amazemement of my doctors. I did not connect the Haldol to the remission until after an emergency ileostomy for UC ten years later because I eventually went off the prednisone which was making me crazy. I remember I was on Haldol for only ten days and it worked. Doctors look at me as if I am crazy or smile condesendingly when I tell the story. I knew the stigma of Haldol and was actually insulted at the time (doctors warned a pain killer could cause paralytic ileus and toxic megacolon, however as I only took it for about eight days back in 1970 I had NO side effects, no withdrawal. Today I would gladly eat a plateful of Haldol, Thorazine or whatever it takes to avoid this surgery that has ruined my life physically and mentally. I suggest you bypass your gastro, or go comcomitantly to a shrink of your choosing for a short regimen of Haldol (skip the other drugs given to bi-polars) just to see if it helps quiet the bowel. Your gastro guy does not have to know you are trying this. Haldol if used for a short regimen is less toxic than the steroid prednisone with the side effect of making you moon faced and irritable. I wish some doctors would consider before suggesting surgery to try this anti-pychotic, only available to pychiatrists.
83
Tania
I have had my ileostoma for 8 weeks now and I am still having pain around my stoma and shooting pains through my stoma. I've been to the the surgeon twice about it and still not getting answers. Any one alse going through this also.
I'm trying to tell my story briefly on here and it keeps saying "No bad language is allowed" and I did not write anything bad.
85
Janet
In 2002 I had the take down surgery done and swore at that time that I would never go back to an Illeostomy. Well I just got released yesterday from receiving a permanent Illeostomy. I guess sometimes what's meant to be is meant to be. However there is so much more pain with this second surgery then the 1st it is unbeleivable and I cannot figure out why.
There is one thing that is happening that I do not beleive as normal at all and cannot find anything on it. I am having large amounts of very bad smelling, red fluid coming out of the vaginal area. Can anyone tell me if they have had this before?
Thank you to anyone who may have some insight.
86
Debbie
I have had an ileostomy for nearly 40 years. After fybromyalga and cancer I have had serious problems getting the appliance to adhere to my skin. I change only when there is serious buring leakage which is often 4 to6 times a day. I have used every product I know of and then tried not using anything but soap and water. My skin is red and weeping. My stoma is flush and breaks the seal sometimes within minutes of a change. I don't feel comfortable going anywhere. I use kayra powder when there is weeping but the pain is unbearable to the point of wanting to pass out. Depression is starting to set in. Need help, new ideas and prayers.
I have had my 'ostomy since 1980 and it has been a disaster. My doctor says if it is possible to have a problem with an 'ostomy, I've had it. I read about people with sores on the skin. I too have had these, a couple of times the area of broken, bleeding weeping skin has exceeded a square foot (yes, the nurses measured) and hospitalization was required. Twice I have been through stretches when the appliance needed changing as often as six times per day.

A couple of things: consider yeast, in which case you need Mycostatin powder. It can be tough to get; make friends with a pharmacist or wound nurse. Powder goes right on the sores, with the twin benefit of treating the yeast and drying the skin.

Best I have found though is Betaderm cream for any area not covered by the appliance. Under the appliance you need Betaderm liquid. Use it when you change. Apply liquid generously to sores, allow to air dry and then put appliance in place. Betaderm is normally a scalp treatment so you have to insist with doctor. You need a prescription. Do not discount the value of a dermatologist.
88
sara
hello, im very concerned
my mother has a illistomy and is in alot of pain has had 31 surgeries in 41 years and only aboaut now 10 inches left of the small intestine.. thats it and im very worried she had her stoma dilated and they cant find anything when he stuck his finger in to feel and it was scar tissue but he broke it up and he has done alot of the surgeries on my mother. the problem she had another cat scan to see if he missed anything and cant find anything no hernia and she is in worse pain then before she is to go to grand rapids hospital to a group of dr's at ferguson hospital but found out her insurance company wont cover that dr. they are not accepting her insurance. im so concerned the first sergion wanted to do a scope but now told her it is too risky now we are all very concerned.. dont know what or where to turn now... she is in alot of pain and she never complaines over all these years and so now when she tells me she is in alot of pain i know she is... pain killers helping only for short times, she states its like a knife jabbing in side and i see her face twinge and she tries to not show it killing her.. but she is getting worn out. i try searching on line nothigin i foudn this site.. i am lost
sara beth
89
angela
Good Day. My mother had ileostomy and TAHBSO 3 mos ago; removal and closure was done. I would like to ask, if normal bowel movement like 1x or every other day will happen to her? And sometimes, once she push hard during defecating. There's a blood spot coming from her vagina.
I have had my loop ileostomy for a long time it was due to cancer.You are given a loop ileostomy when they plan on reversing it,the doc thought it better to leave it alone.I have skin breakdown right next to my stoma it shots a stream of blood out the side it scared me when it first happened I had a bag full of blood.I went to the hospital where they stitched it and coderized it.I have had it happen quite often since. I spray the skin with ultravin nose spray it stops the bleeding.I also heard if you spray flo vent on your skin where it is irritated it will help heal it.You have to be careful with it because it can also cause skin breakdown.You need a precription from your doc.Yes it is for asthma.You can also put Gel Capsules in your ostomy bag to thicken the stool.I hope some of this is helpfulI still get leakage once in a while.
91
Gary
some quite negative comments about an ileostomy. I've had one since the age of 20. Had Crohns in my teens and spent many months led in a hospital bed. I tried every drug known before the surgery but nothing really worked. Was on high doses of steroid to keep me going. Lost several stone in weight and felt awful most of the time. I am glad I had the surgery because my life is actually a LIFE now. Don't get me wrong, an ileostomy is not ideal and if there was a miracle and it could go I would happily get rid, but it has made my life 100% better. It hasn't stopped me doing anything I want. They don't smell unless you are simply not a clean person. Yes, they can leak but this is a rare occurrence. You need to just learn how to put a bag on and try lots of different ones until you find one that suits you. I actually wish I had the surgery sooner. Now 15-20 years on I have osteonecrosis due to the large amount of steroids I was on. The drugs may help out but they have dreadful long term side affects and it is mainly due to this I would recommend anyone suffering with Crohns to have the surgery. You can live with a bag and live very well. Without the bag I was always looking for the loo. I was ALWAYS tired. I was taking loads of drugs all day long. I was in pain. NOW, I take nothing except for the bone pain caused by the long term steroids.
92
Kaye
I have had an Ileostomy for 6 months. Yesterday I started having gas the normal way and today I had a small bowel movement and all day I feel like I'm going to have diahhrea.
93
Paula
I had an ileostomy June 13, 2012 I am trying to learn to cope as all of you are I'm sure..it is time for the Doctors to do the surgery that makes it permanent..removal of the rectum(?) I am told it is a long surgery..My question is that I don't understand is why is this Surgery necessary? I have been living ok since June..what happens if I didn't have the surgery? Does anyone have the answers? The Doctors have only said that the rectum is diseased too-oh I have suffered with Ulcerative Colitis..NO Cancer thank goodness..I am feeling better since before the surgery was down to 96 lbs and am up to 125 lbs..now..but just am really scared of this second surgery...since they said it was a long surgery...I had some problems during the 1st surgery but I guess not extreme...although I stopped breathing for a short time -they said I had had a panic attack on the table...was all...well I have suffered with panic attacks a long time but never under anesthesia..-anyhow just scared..and hate the thought of permanent bag but what must be must be..would like any e-mails or comments or encouragement..Bless ya all ...this isn't fun-the only thing that keeps me going is the fact that it could be worse and others are worse off than I am..Thank you.
94
Barry
After dealing with crohns and uc for over 20 years, I feel the time has come for surgery. I can't tolerate the Predisone any longer and all the meds are not keeping it under control. My fear is the 'unknowing' of how my life will be afterwards. After reading all the comments, I see what kind of problems can arise and it makes me second guess this surgery. I'm tired all the time, my stomach is always hurting and I'm scared to go anywhere due to not having a restroom with in 30 seconds of where ever I may be. I don't eat or drink while working because I have no access to a rest room (outside work) and have to hit the woods. My quality of life sucks... period. For those who were going through the same thing I am now, would you go back or are you happy with the surgery? My heart goes out to all of you, I know what you've been through. Thanks!
95
Kim
I had my ileostomy Sept 2012. I am doing everything suggested and still their is major bag leakage. My latest problem now is the scar opened up and copious amounts of this thick greenish yellowish mucus/pus oozed out?? The surgery was over five months ago! I am miserable.
Well I was so sick that I got down to 96 pounds-and like Barry had to know where all the bathrooms were at..so I didn't leave home much either...I don't know I had my ilestomy in June and physically feel so much better...and am stronger and have gained weight up to around 130lbs...it's quite a life-style change...but ..I myself just turned 60 -and am getting ready to go in for the rest of the removal part...I was not a good candidate for re-connection..so will have the bag for the rest of my life -but I can say I have gotten use to it..I guess anyhow...if I was younger I don't know what i would have done -but at this time in my life and my life style -I think it's going to work ok for me..I've mastered the leaks by using alot of adhesive...sometimes at nite I turn on my side and I leak a little but that's not often..it's frustrating..I usually have a towel I sleep on just in case..it may depend on what and where you get your bags-I know in the beginning I had leaking alot..and finally found out they were faulty bags thanks to a home health nurse that came out at first..so..Kim may want to check that out..none of this is fun..but it beats feeling so weak you can't do anything. I have no answers I have been lucky so far but am scared to death about my surgery the 6th of March..am hoping it's not as rough as the first go around...it's around a 5 hour surgery and that part scares me..that and damn Prep you have to do the day before...but hopefully all will go well...So I wish you all good luck too...with whatever decisions you decide to make...HUGS to ya's..Paula
97
dawn
Hi i've had a ileostomy for 2yrs now after my small bowel perforated. At first it was awful, I kept dehydrating, the bags leaked constantly as i had a very high output. I also had major problems with my sodium and potasium levels but all these problems have been resolved by my medical consultant who took the time to listen. She put me on St Marks solution to prevent me dehydrating and keep my sodium and potasium levels normal. I now inject myself twice a day with Octreotide which slows down the output which means less leaks and less time emptying my bag. I also find that using Cavilon spray around my ileostomy prevents it from getting sore. I hope this is of some help.
98
Ron
I have had to have a second site stoma put in after 30 years, it was an emergency, I believe they waited too long to get me on the table and my ileum was dying. It was touch and go before it started working. One year later I have a belly button hernia, pain and distension at old stoma sight. I have to use a convex appliance now, I found two that work my favorite is convatec sur-fit Natura I use 7/8-11/4 or 22-33 mm. I use adapt which I apply inside the appliance and work it with my finger on most of the inside surface which allows for better stool passage. I rinse my appliances frequently, actually remove them when I am at home and dry them on a hanger. I also use Secuti T paste after applying skin barrier and allowing it to dry. The secret is running hot water into a cup with the tube inside to soften the paste before applying. I then smooth it with a wet finger, let dry about five minutes before applying the face plate.
Another secret is my back up pouch security. For the curved Hollister clip with the hook (a favorite) I found that I can secure it like fort knox with a simple O ring (one cm in diameter) that you can find in a specialty hardware. For the Velcro closure I found a simple metal paper bonding clip (the kind with the wire handles used to bind folders), I get an assortment at the dollar store and use the smallest binder clip to give extra security to the Velcro, whether its the lock and roll variety, or whatever. It works! I use the larger diameter holister convex appliance to give my skin a break at home but I find the larger diameter of the faceplate makes it too easy to pull off, or fall off if I am having trouble draining it.
I am not happy with the extreme belly distension and the pressures I feel even when lying down with my new stoma, and I still have a sticking pain (like an open cut) at the site of my old stoma. I also can no longer massage and push my intestine to drain out what is left, or even to get it to move, it has its own mind. I also suffer from total body itching and depression. Does anyone else have this problem?
99
Bonnie
After reading many of the comments above, I, first feel very fortunate, and secondly feel very sad for the people who are suffering from the complications of having an ileostomy. The literature states that as many as 70% of those who have this surgery will have complicaitons. But in reading this one needs to realize this ranges from the slightest to the most severe. When I talk to my patients who have had this surgery I tell them that there is a wide range of possiblities and EVERYONE is different. I have had my ileostomy for over 30 years, I was 26 years old and afflicted with Ulcerative Colits. I was one of the most fortunate people I know in that I have had almost no issues or problems. I have had 2 children since my surgery, I work as a nurse, and I work out regulary. I eat almost anything I want, I just have to be careful to drink a lot of fluid when I eat raw veggies, nuts or popcorn. I write all this to encourage that person who may be looking at having this surgery or who is a brand new ostomate. If you are reading all the above comments, realize these are not true for everyone and that it is possible to live a full, complete and healthy live with an ileostomy.
100
Mike
I concur with Bonnie's comments. I also had an ileostomy and it has been 20 years with no complications. It did take a few years to regain my drive but with working full time, and a young family to provide for, I managed well. I am now in my early 50s, and outside of my work life I do strength training, 40 KM cycling runs, and play in a rock band. Yes some days I wish I did not have the inconvenience of the appliance but I just look to moving forward daily and living each moment as fully as I can!
101
Pat
What can be done when the surgeon,while giving you an ileostomy, stitches the stoma in the wrong place? My stoma tube is blank and contains NO faeces. The discharge comes out of a stitch hole below the stoma. This causes great problems
with leakage and damaged skin. Is it possible for the stoma to be corrected? Thank you.
102
Rico
Thank You Bonnie #99 & Mike #100!!! I'm having surgery in July and just started looking around to get an idea of what to expect...and most of these comments have been very depressing and will I probably not return to this site. My heart goes out to all those who are suffering, but I will hold onto your 2 comments for strength and positive energy!!! Thank You Bonnie & Mike!!!
I will soon be 69 years old and have lived with my ileostomy for 23 years. Except for herniation of the stoma after one year, I have had very few problems other than rare accidents caused by a flat stoma. I eat anything I want to eat. I find that by drinking water instead of other liquids at meals as well as some in between I have no problems with hydration. Some of you talk about skin breakdown under the appliance- I learned early on that Stomahesive powder or Kerya sprayed directly on the wound stops the oozing and helps healing. I was amazed to find that these wounds heal under the appliance!

Having an ostomy is not fun, but it is more of an occasional inconvenience than anything. You can do this!
104
Jacque
My husband just had a revision of his loop ileostomy to and end ileostomy on June 24th, he is still in the hospital due to severe bloating/gas/and has a very distended stomach, the tests are all normal and his bowls are working but Dr's are at a loss on why he cannot eat without geting sever stomach cramps/bloating/ gas - there is no blockage but he cannot eat or drink - any ideas on how to fix this?
105
Sonny
Hi my name is Sonny, I am 42 years old, In January 2013 I had a sub total colectomy which was the removal of the majority of my large bowel leaving me with about 30cm of large bowel, this was due to a large number of polyps growing in my bowel. The surgery was successful, it has been 6 months now and I am really beginning to gain a lot more control over my bowel movements. 3 weeks ago I went for a colonoscopy to find that 3 polyps have regrown on the join of my bowel which are inflamed within 6 months of my initial surgery, not a good sign. Today I have seen the surgeon and they believe the best bet for me is the j-pouch, ileostomy surgery, scary yes, but the thought of not having a bag for the rest of my life is a bonus. I too will have the first surgery connecting a Ileostomy Bag until my small bowel repairs then a second operation to reconnect my small bowel to my anus. I was reading a comment from the nurse above "Bonnie" and it gives me foresight that my life can get back on track after some time which is very reassuring for me. Thankyou everyone for sharing your thoughts. So far from my original surgery I have had 1 blockage the first month out of hospital which made me more aware of the foods I was intaking, besides the usual side effects, diarreah, dehydrated mainly, I cant believe how good my body has returned. Im still a bit iffy when going out, but eating foods right for me usually makes me confident when going out, you just need to be conscious of what your body is telling you. Fingers crossed for me that all will be well, and for everyone else out there in the same boat.
106
jean
it was good to see that its ot only me suffering from being sore around the stoma but am in tears sometimes with it tried everything and still suffering
107
CLARE
when was this article written? I need to cite some information from this article and need a year
108
Angela
I have just recently gotten a temporary ileostomy due to blockage in my large bowel(due to Crohn's). My doctor thought it was not as invasive as going in and cutting out intestine. There was no cutting of small or lg. intestine, so I want to keep positive mind set. Once the inflammation has decreased he will reverse the ostomy. So far, I have not had problems with the bag. If you have not tried miconazole(found near creams for yeast infections) try it around stoma. The ostomy nurse said this would work. I have gained weight since getting the ostomy. One thing the ostomy nurse advised me to do is to drink fluids every time I drain the bag to help w/hydration.
109
Ann
Dear Jackie(32), My mom had her bladder removed in 1994 just before the birth of my daughter. Unlike you perhaps, she had no real choice. The surgery let her continue living. It is true that she has had to deal with it every day since then. But! The good news is that she knows my daughter and her other grandchildren. She normally deals with the pouch very well (still living in her own house at 86). Her biggest problem is when it leaks (normally when travelling or when it's hot). Changing the pouch more often might help, but she doesn't want to. She doesn't want to fly because she doesn't want the attention at security (although she could ask for a private screening). Most of the time she just lives her normal life. There are a few foods she avoids (spicey, garlic, broccoli), but mostly she eats what she wants and adds cranberry juice. She did require a 2nd surgery 11 years after the 1st one due to scar tissue interfereing with flow, but she has done really well since that. We love her and are really glad she is here. I am very grateful to the doctors and nurses who cared for her and let me have my mom for all these "bonus" years. I can't evaluate your medical situation, but I'm confident that you also have people who love you and want whatever is best for you. I hope you feel better soon. God Bless!
110
Roberta Blanton
Hello, I am going to have a ileostomy next week and I want to know is their a lot of pain associated with this operation and what to expect?
111
Cindy
I had an ileostomy from h--- 7 months ago. I have been in the hospital more than I have been home. I have severe pain in the right rib area that goes around my back. I have a poor appetite due to the pain that follows. I drink alot of water to help with the dehydration. Pain pills are a joke. I have had all the test and they come back neg. Yep-even the physc. evaluation. The one thing that keeps me going is my 4 children, 12 grands, and 13 greats. I can only a few household chores{no complaint there-lol} I weighed 153 before the surgery, now I can't get above 116-122. GOD is having me go thru this, don't know why,but you don't question the boss. This surgery has really taken the wind out of my sails. Gone from active to barely existing. Is anyone else going thru this and if so how do you cope? HAPPY NEW YEAR TO ALL-CINDY HUMPHRIES
112
anil
My 1month baby had an ileostimy and he gets dehydrated can i directly inject ors through the stoma in the colon to to absorb water and nutrients which are present in ors. Does it wirks please help me
Thanks
113
suzy
my husband had surgery a few years bk and lately experiences blood in his urine ..very rad blood...he had is bladder removed totally due to radiation burns after prostrate surgery several years bk..this bleeding seems to be happening more often..i am concerned..his health has been good .he is 61years old and i am questioning if this happens often?..no blood occured until about aweek ago ..i am concerned more then he is..can you direct me on info
114
Esther
I would like to know how to handle a 9 hr flight without having to change the bag.
115
Jen
Hi my daughter aged 3?had an ileostomy in June since having it we noticed that she still sometimes still opens her Bowles from her bottom but more recently she has had it happen several times a day and is like a mucus consistency and yellowish in colour could anybody say if this is normal or weather they have experienced this either as it is all new to us and is slightly worrying thanks
116
Gayle
I have had a eliostomy bag since 07, I started noticing urine in my bag a few years ago, but my Dr said that it couldn't be, but it was aslways prominent after I had my morning coffee, or after I drank juice. I let it go up until now, I am see a urologist for another problem, and he has had me on Uribel, which tuns your urine blue, well guess what, I was right, there is blue liquid coming in to my bag, is that normal.
117
abe
I've had a permanent ileostomy for over 11 years. It's been a life saver for me. Married over 50 years & no problem with sexual function, can still work, play golf, etc. Only issues have been occasional bowel obstructions which require hospitalization which has happened maybe 6 or 7 times.The other issue is skin irritation around the stoma causing some itching and discomfort. Changing the adhesive skin barrier every two days helps that even though I sometimes go as many as 4 days, but do not recommend it. If I am working in hot conditions & sweat a lot, daily bag changes are best to prevent leaks or a blow out, which is really embarrassing. Considering all the suffering I had with Crohn's disease before surgery, I wish I had not waited so long.
118
Stickle1
GOOD NEWS! for a change. I read with much saddness all the troubles so many of you have with your ostomys. I am here to tell you that I have had a permanent ileostomy for 54 years [anyone beat that age?]and have had next to no problem with it. I recall that for the first 3 to 6 months after the operation I felt my world would come to an end but time has proved to be a great healer of both mind & body. Remember this op' has probably saved your life. Over the years I have gained much experience and suggest you put alot of effort into finding the right appliance that most suits your life style. I would not go back to 'normal' now even if I could just flick a switch to do so. Thanks to NHS for 'free' supplys in the UK.
119
Jash Patel
i have cancer tumor and multiple polyps in large colon and that lead to total colostomy. I had gone under chemotherapy too after surgery and my PET scan report is normal I had ileostomy done in January,2014 and since than manage external pouch on my stoma. Initially I used two piece wafer pouch, need to change after 10-12 days/having metal plate with gum stick around stoma. Being metallic plate,it leaked and come out and need urgent replacement/cleaning. also skin under the plate get redish /infected, need some antibiotic powder spray before placing new pouch. later on I tried single piece system have plastic plate with adhesive with 10 days life. There also found problem of leakage around joints/secondly these system do not have any belt to support on stoma. Now I am using PE pouch which is tied on adjustable elastic belt and bag mouth with 45-50 mm opening can be placed on stoma.I apply rashfree cream on face of bag and surrounding stoma to avaoid any leakage. Belt tension need to adjust, this bag is washable and get hardened in 12-15 days need replacement/ elastic belt can last may be 3-4 months. The problem i find with the plastic bag is that I need to frequently drain( may be 6-8 times a day)being it is hanging on belt. Also there are leakage problem in night when body position change/ also some times bag move up or down of stoma and create problem. Sticky bag nozzle some times create presure on stoma and block stoma.
I had occassion of stool blockage in last 3 months 3-4 occassion and probably it is due to fibre/leafy food.Took assistance from hospital.subjected to abdomen x ray/sonography.. both are ok...
My overall health is ok, but i am scared to travel long distance / afraid to take any job assignment. I am 65 years , well expereinced oil and gas operation/commissioning person.
Please suggest me how to handle this pouch system in better way? Is there any case where small intestine again join to rectum canal or transplant of rectum and j pouch to get rid of external pouch? is any one know such case?
my wishes to all who are facing problems alike and also to all those having better life and inspire us and give hope to improve our life... thanks
120
Concerned
My Mom was 73 and had an Ileostomy. She had another surgery shortly after the first they said they could not do the temporary procedure cause of certain issues. Shortly after second surgery she had a stroke. They looked in and said her rectum was perforated and would probably go through some bad times , a week later she passed and the dr said that she was having stool and blood leaking out of her rectum .

is this a normal issue or did the first surgery go bad and they went again to cover up a mistake...
121
Robbie
I am having a ileostomy in a couple of weeks. I had a colostomy 3 yrs ago. After the ostomy I had a great deal of trouble with my bag staying on. My intestines collapsed and I had emergency surgery. The lifted my intestine with a slee which resulted in my stoma going flush with my skin. That made it more difficult to keep the bag on. However, my supplier told me I needed a convex bag. That saved my life. For those of you having problems with your bag, you might try the convex.
Also, a trick to make the bag stick, I use my blow dryer's heat around the stoma. Once it is place I heat it again then I fold a pillow and lay flat for a few minutes. If I see a bubble or crimp I place a small round bandaid 1/2 way on the bag and 1/2 on my skin. I also use a moldable ring, which is similar to putty, and it lifts the bag away from my skin.
After reading your posts I am terrified about my ileostomy. I have a couple of questions maybe someone can answer. Has anyone had their rectum removed at the same time? If so, how did that go? Did anyone have drainage tubes? Do you have significant weight loss? How long was your recovery? Were you able to go home following your stay in the hospital and how long was your stay? I am 69 and live alone and am hoping I will be able to return home after I leave the hospital.
God Bless each of you as you continue with your journey. Here's a prayer hoping you can find some relief and peace. My ostomy supplier has been Edgepark who provides Colaplast products. They did everything within their means to accommodate me following my colostomy and I feel comfortable they will do the same with my ileostomy if I decide to move forward.
122
neil
ive had my ileostomy for 5 yrs. now, I have endured all your situations seems in this short period, heres thing, I will answer anything I can, its something only us with this know, I run to the bathroom, after each meal fast, I am tired of it, but I know its my life, but if I can help or you can help me with how to stop my constant bathroom empty ostomy trips, I would love advice, thing is, were like a family who need one another, please email me and lets all try to help one another, god bless you all, from my heart because tomorrow I go see another surgeon because I go bathroom so much I lost 52 lbs in 5 mnths, help me please where doctors cannot
123
John
I have had my ileostomy for 8 weeks and after 2 blockages and lots of pain especially in the rectum. I am hoping that everything is now settling down, the one thing that is for me more distressing than anything else is the fact that every night I wake up every hour or so because my mouth is so unbelievably dry that I have to have a drink. I have added salt with my food salt with my food and drink at least 4 pints of water/liquid a day so it can't be dehydration, anyone had the same problem, if so how did you get over it.
124
Vonyetta
I have had Crohns Disease since I was 12 years old and I am now 39 with a permanent ileostomy since 2008. I have still since had several surgeries (20) that has now left me with only a little over 100 cm of small intestine left, no colon at all. I have to say that this has not been an easy road by far and now I am on TPN and tube feedings. I am supposed to have my tube changed out tomorrow for a more smaller, less painful and more discreet tube. I will post later tomorrow to let everyone know how that went. I have read a lot of the comments above from people suffering from some of the same things I suffer from like dehydration, stoma irritation (which can be extremely painful), blockages, fatigue, pain, etc. Well here are some of the things that have helped me. When it comes to dehydration, drink things that are high in electrolytes like gatorade and powerade. Try these and limit your water intake during the day cause water goes right through you and you will find you are emptying your bag 100 times a day. Limit water intake at night and drink gatorade and this should slow down the times you get up in the middle of the night to empty your bag. Also things like peanut butter, applesauce, bananas, and yogurt help slow down output as well. When you are fatigued, make sure you are getting your electrolyte levels checked frequently to make sure you are not lacking in magnesium, potassium, calcium, and potassium. These levels are very important due to lack of being able to absorb these things in the food you eat due to not having enough intestines to do so. As far as stoma irritation, make sure you use stoma powder with every bag change, skin barrier protection, and the eakon seal rings that work really well with stomas that have not prolapsed. Now, if you do have a stoma that has prolapsed, meaning it no longer sticks out above the skin, it will be very hard to pouch properly and skin irritation is going to be impossible to avoid, you may want to consider talking to a wound care specialist for ideas or your GI doctor about possible revision of your stoma. I have had 3 so far and now I have a regular healthy stoma. When you think you may have a blockage, be persistent in asking your doctor to do a MRI Enterography because a CT Scan and regular X-ray is not gonna show nothing, please trust me, I had an obstruction for almost 4 years and the CT scans and x-rays always showed nothing. It wasn't until I changed doctors and hospitals and had the proper tests done that should what was wrong and had to have surgery immediately, which resulted in the loss of my colon. When it comes to the pain, I do see a pain management doctor and when the pills aren't really working that great due to my absorbtion issues, a little heat from a heating pad helps relax the muscles so there are less spasms and it just feels good and relaxing. Like I said earlier I have been on TPN off an on all my life, which is IV nutrition giving through a port in your chest or pic line. It is too think to be given through regular IV and it contains all the nutrients you need when you are not absorbing properly through food alone. I am now on it 3 times a week and it runs at night while I am asleep, but I used to be on it everyday, sometimes for 24 hours. The tube feeding is new because after my last surgery last June more of my small bowel was cut away due to adhesions (scar tissue) that had grew from previous surgeries and I had more blockages due to those adhesions. The good thing is that I can still eat and I have maintained a healthy weight. Again, this has been a long journey and it continues but knowing about my illness and learning what to do to make it a little better keeps me going. They are now even doing whole colon and small bowel transplants and they are perfecting them everyday so there is hope. It will not be all roses all the time but with support and education, it can work. Good luck to you all and God bless :-)
125
roaz
I am a new ostomate as of April 2015. All went well and I feel blessed. No, life is not "normal" with a permanent ileostomy, but I am alive, well and am learning to cope with a bag of poop on my stomach, for now. I don't like it and it is at times is emotionally overwhelming and physically cumbersome to say the least. I live in AZ and was not informed prior to surgery about a procedure called the B.C.I.R.. CHECK IT OUT . It is a continent ileostomy. It allows us control again. No exterior bag/wafer/prep/powder/ is needed. The procedure has been greatly improved from the original Koch pouch days. I am preparing to undergo a second major abdominal surgery within a year to have my life back and this is the scary part. Our bodies were not made for surgery and with all the infections you can catch from a hospital this is another heavy decision.But, no more worrying about changing/emptying/leaks in public or ordering supplies and paying $150 to $200 co pay every 3 months. The % of possible complications are less than with a permanent Brooke ileostomy. The mental and emotional freedom for the rest of my life will be worth another major surgery that will only take a few months to heal. Please, if you are struggling with U.C., or your ileostomy and currently wearing an external appliance, please consider the B.C.I.R. (Bennett Continent Internal Reservoir.)There are several Dr.s that perform this surgery in the U.S., but please be sure to research their education and success with this procedure. Good Luck to us all.
Hi every 1 I would ask any 1 question I have what I call a double stoma 1to pee in and other for my stool I have got a problem with the one I pee in I had my bladder removed 5 years ago and now I'm having a big problem I get a pain in my down below as I have the feeling I need to go for a pee and getting a dealt strong pain in my man hood down below I have been told i have a water infection but have no bladder its driving me crazy ? Please can any 1help
127
Carolyn Mullins
I have had ilieostomy for 2 yrs. I have started severe burning in my insides which goes into my back. Even my palms and inside of my legs burn. It is horrible. I become nauseous weak and break out in a cold sweat This happens mostly after meals and when I first wake up. thank You. Help.
128
Carolyn Mullins
I have had ilieostomy for 2 yrs. I have started severe burning in my insides which goes into my back. Even my palms and inside of my legs burn. It is horrible. I become nauseous weak and break out in a cold sweat This happens mostly after meals and when I first wake up. thank You. Help.
129
GinaG
I have had an ileostomy for about 32 years. It was about a year before I was fully recovered (soreness and all). Over the last 3 or 4 years I've realized changes to my body - dryer skin ( I have escema), weigh loss & developed periphial neuoropathy). I've been seeing my internal medicine doctor who advised me I was pre-diabetic. I really don't believe she understand that I really need the sodium, carbs & all in my diet because I loose so much thru the stoma. I recently discovered electrolyte water at Walgreen's, and drink several swallows daily; I also drink straight swallows of club soda daily. These drinks seem to give me a great boost of energy, and I don't seem to have the mood swings I've been experiencing lately. I haven't seen the doctor since December. I can't tolerate too much raw fruit or veggies. I'm 65 years old. I am also producing an excessive amount of hair (face, breast, shoulders, back, etc.). Anyone out there had these experiences? Thanks
130
Tonia Lillard
I just had my Illieostomy reversed. I had it for 6 months. I kept dehydrating, ending up in hosp. for fluids. I used imodium and Metamucil 4 times a day to try to control the runny bm. Nothing worked. I also had alot of pain around stoma I found that if I woud change out patch about every 4 days I would not hurt so bad. I used the little round dounuts after using the spray and power and then putting paste aroung the outher edge of dounuts then apply the patch. after doing that get a rubber glove, fill it with hot water and tie the end and place it on to of the whole thing for 5 minutes. this helps seal it good. only had 4 breakthroughs doing this. Use the odor stuff you can get at supply store. It works. they also have an extra "U" shaped sticky things you can put around outside of bag for more protection. Ihope this information helps!
131
Nadine Johnson
Hello,
I have some concerns about weight gain since I've recovered from my Illieostomy surgeries. I under went 3 of these surgeries because after my closures my intestines kept rupturing open again. Now I only have 50% of my intestines and now I cannot stop gaining weight. Due to numerous surgeries for this situation my abdomen always hurts and I cannot handle doing any strenuous activity such as, cleaning the house, going up & down the steps to do laundry, long walks, lifting more than 10 -12 pounds, exercising. Standing on my feet of more than 30 minutes. I've also had numerous other abdomen surgeries before these for serve endometriosis. What can I do to loose weight? Please help me.
132
James
How many weeks statistically or approximately can an 80 year old woman who had several inches of Ileus removed survive without food but only intravenious, who is otherwise in very good health?
133
Jerry
Having had my rectum removed and colon resected to anus, I now have a temporary loop ileostomy. For the two months so far it has caused much pain, leakage, and burned skin around the stoma. I read that a solution of one part apple cider vinegar and three parts water was very soothing to the broken down skin. It actually wasn't very soothing the first time I used it but the next day my skin was much better. I believe the raw skin had a yeast infection as it is always wet. Can't tell you exactly why it worked, but it was a fast relief. Now after showering I soak a piece of gauze in the vinegar solution and apply it on any skin that is red. This is a home type remedy that some will not try, I can only say that it has brought me great relief.

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