I was wondering if there were any women out there that have had a colectomy, ileostomy and/or a j -pouch, and if so what your life is like with it.
Next week I am having a colectomy and an ileostomy. Later, I may or may not be able to have a j-pouch. I know of males that have had them, and heard their stories, but I feel women will have different experiences.
I am 3 years past my surgery. Please make sure that this is your last resort!!!!! Not a thing in my life is as promised by my surgeons. I spent twice as long each hospital stay as they promised. I got a severe infection that ravaged my abdomin and required a wound vac. My stomach now looks like a caved in mess. I still have urgency and 8 - 10 BMs a day. And now I just found out that I have a vaginal-pouch fistula. This is a hole between the pouch and the vaginal wall. I was never told this was a possibility yet 4-17% of women who have this surgery end up with them. The "plug" that is used to fix the problem is only 20-80% effective with smaller fistulas (like mine) on the low end of that spectrum. If the plug does not take, I have to have the illiestomy put back in the j-pouch reconnected. I have been told that I will probably have a failed pouch and have to live with a bag for the rest of my life. I am only 38 years old and I have not had a normal sex life with my husband since the surgery, probably because every doctor I have seen in the last 3 years missed this fistula. I am not saying don't get the surgery, but now you have some questions to ask when the doctor checks if you have any. I would have never thought to ask if a hole would form and poop was going to come out of my vagina and cause three years of misery. Find out what your risks are for pouch failure and fistulas before going through with the surgery.
I wish you the best of luck and please come back on and let us know what you decided and how it went. I will keep you in my prayers. There needs to be more support for women with UC and j-pouches. I felt like I was the only one in the world until you posted this.
Everyone has a different experience and ensuring your surgeon is very skilled at this operation is key. Major hospital centres are the best - I had mine at Mt. Sinai.
My bowel perforated after 10 years of ulcerative colits (I was 32 and this was 16 years ago. I had emergency surgery and the surgeon had heard of the J-Pouch so called Mt. Sinai to ensure he left things so I could have the operation. I wore an ileostomy for a year in order to heal and due to them being unsure after the pathology as to whether it was Crohn's or UC. If I stayed healthy for a year then I could have the operation. And I was. Living with an ileostomy takes some time to get used to but it is very manageable. Learn what foods cause you gas or increased output and you may need immodium some times to keep the output down. I learned to always have supplies with me in case of a leak. It was heaven to feel so healthy again.
I had my surgery which left me with another temporary ileostomy. I was home a few days from hospital and had to go back due to an infection in my ovaries from the operatin. Drains and antibiotics and I quickly recovered. After 3 - 4 months I had the ileostomy taken down. I took a few months to get used to the pouch. I played with my diet and learned to be very thorough when wiping my bottom as the acid from your stomach does not get absorbed without a large bowel and if your stool is left touching your body it burns. Especially in the early days (and sometimes later) you will want to utilize creams like zinc oxide to soothe the area. You will need to try and hold your stool for as long as possible to get your body to stretch the pouch. You will have some urgency initially. Oats and rice are your best friends as they help to bulk up the stool. Slowly introduce high fiber foods as they can create urgency.
I eat anything I want now and know that certain foods will affect my pouch but go into it knowing so. It's been 16 years and I am very pleased with the result. Research, read and learn as much as possible as you can. Use immodium when you need it. I take it before I travel on a plane to ensure I don't have to go much. Good luck with your surgery.
Thank you for your posting. I was starting to believe I was the only girl, too. This is a last resort. If you see my previous postings on this site, I have gone threw hell trying to get my UC under control for 2 years. Tried differents meds with either bad side effects or no results, and different diets, unsuccessfully. Trust me, I would not be doing this if I had other options. I am glad you brought up the fistula thing because I actually had problems with them when I was born, and had to have them repaired multiple times as a child. My operaiton is Tues, but I think I will call him today, and make sure it wont be an issue. Thank you agian.
I had my surgery on Tues, and had asked the dr about fitulas before I went under. When I woke up he said he did not find any, but he did find a hunia, and repaired i for me. I was suprised because I had no idea I had one, I had no symptoms of it. So far everything is going well. He says the stoma looks good and is working, and the insession is healing well, too. I have started to graduate on my food to low reidue foods. They say I might be out Monday and I am no longer needing the pain meds. It still hurts some to move, but is tolorable. Thank you again for your posting, and if you have any other advise, I am open to it.
I have had a ileostomy for about 22 yrs now.But the last two months i have been having alot of trouble with leakage.Its been driving me crazy i try not to eat when im working.Because when i do its starts leaking just on one side the right side.The stoma opening looks like it may have trun more to one side.Right where the opeing is is where it does the leaking and the skin under is very red and stays wet.If anyone can help are give me advice I would love to hear.Are you can contract me at ***@****
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