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Anyone had a loop ileostomy converted to one single end ?
In 2012 I had cervical cancer with a mass so large, it could not be surgically removed. Instead, ureteral stents were placed for backed up kidneys, which I wore for a year. Then chemo and radiation was administered for about six weeks. After that treatment was completed, I went to a hospital in a different county for a three day stay for brachy therapy, another radiation treatment. I was grateful that my life was saved, but my colon was never the same after cancer treatment. A few months later, I began having chronic bloody diarrhea. The only help offered to me was a course of sulfasalazine. I was diagnosed with proctitis, colitis, enteritis, and large oozing ulcers. Rectal bleeding continued. Two years later I developed severe anemia. I ended up in the hospital for a three day stay with three 450 cc bags of blood and one bag of iron. So again, my life was saved, and I will always be grateful to my internist for rushing me to the hospital. So seven years later, Fall 2022 a recto/vaginal fistula developed. My guess is that my largest rectal ulcer ate its way into my vagina. The result of that is too terrible to describe. Needless to say, I was very happy to have an ileostomy. So now you know my story. Living with an ileostomy is a breeze compared to what I have been through. Now I replace my base and bag every three days. I have deep red irritation and red bumps from leakage. Stoma nurses have been of no help. I believe that I have this issue because my lower small stoma is almost flat. Cutting out the base to the correct size for a good fitting is challenging. I would love very much to have one single stoma. So I have a question for someone out there. Has anyone had this procedure done? To convert a loop ileostomy to one single end ileostomy? I have been to two proctologists who stated that they could not do it. I keep thinking that it’s just a matter of a surgeon with more experience. Am I wrong? Has anyone had this particular surgery done?
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Sorry...no answers from me...loop colostomy...but an admiration for your incredible courage and all best wishes for your future.
Sansa, a few questions if I may. Are you using convex barriers? When your skin is angry do you put a little stoma powder on the area. Lightly wipe off any residue. Then spray on a no-sting barrier spray. It will dry quickly. Are you cutting holes in the barriers? Pre-cut barriers are a lot more convenient. I know how vexing it can be when your skin doesn't want to cooperate. I change mine every three days too. I'm not knowledgeable about single-end vs loop ileostomies. You've been through enough, I hope this gets resolved quickly.
I do all of the above. I recently started applying Coloplast Brava Moldable Ring to my base. This has helped more than everything I have tried. I do indeed use powder, Coloplast Brava Powder followed by Cavilon No Sting Barrier Film, the best there is I feel. When I cut my base it’s hit or miss on the fit. I am actually cutting for two stomas, a large one on top, and a small almost flat one on the bottom. I just wish I had one stoma. I think that would be easier to manage.
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1 ReactionI also use pre-cut barriers and they come in various sizes. I only have a single stoma but I use closed end disposable convex pouches after much trial and error. My skin is much better since i no longer have to deal with leakage sitting on skin. I use 3 or 4 bags a day depending on my diet and i thoroughly clean and wash the area each time It takes me 5 to 7 minutes to change my pouch so it is not really time consuming at all. My prayers are with you for all your suffering and I hope you find an answer
yes- those moldable rings were a positive game-changer for me too. After reading the description of your stoma (stomi?) I can see how you are getting into trouble. Keep knocking on doors. Wishing you success in your search!
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1 ReactionMy daughter got a loop ileo, at 8 months old. I was told this would make connection easier, if/when, it was reversed. They were close enough that I could pouch them
Together, with a larger baseplate. I did ask her surgeon if we could
Drop the mucous fistula during a stoma revision, as it’s very unlikely my daughter will ever have a reversal, and he did. Much easier managing the one stoma.
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1 ReactionI think you need to talk to an experienced colorectal surgeon. If there is no possibility of reconnecting your colon, and you have a rectal-vaginal fistula, then removing your colon and having a straight ileostomy may be a good option.
I went from a loop ileostomy after a colectomy to a j-pouch (no ileostomy), to a straight ileostomy after the surgical removal of my j-pouch. I also had a ileo-vaginal fistula for years...
Susan_f. Hi Susan, I'm going to ask for a quick detour from loop ileostomies to j-pouch abandonment. Diagnosed with Ulcerative Colitis (later changed to Crohn's) I had a colectomy, j-pouch for 30+ years, and now an ileostomy. All is well and functioning properly. My question to you, Susan - was your j-pouch actually removed or just disconnected and abandoned? The colo-rectal surgeon who unhooked mine mentioned to my wife, "he will probably want to get rid of the pouch some day." None of my doctors have brought it up. Apologies for the interruption everyone! Happy New Year!
How many of you rinse your bag with warm water before you empty it? Makes cleaning much easier. Then I use diaper wipes to clean around the barrier, q-tips to clean just inside the barrier and the rim of the barrier. I wash the bag and dry on white bath cloth (I keep stacks ready to use), use ostomy pouch lubricating deodorant in pouch and ready for next time. I have a bidet which has been wonderful since I have warm water all the time. Here is a fun one: I use doggie bags which come on a roll of 300 to dispose of the things to throw away, much easier than the bags which come with the supplies, I then put the doggie bags in a diaper genie and the used bath cloths in another diaper genie (will hold about 30 before I need to empty and wash). By the way if you have a bidet sitting on the toilet backwards put you in great place to use this procedure - everything at your fingertips. That said I will add that I have a metal shower hanger shelf on each side of my bidet so everything I need is at my fingertips. I have had a colostomy for 8 years and am always looking for ideas to do it better!
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1 ReactionI just went straight to an end ileostomy. However, we did discuss leaving an option for a reversal to a j-pouch. My CR surgeon told me if I didn't do the j-pouch within a couple of years, he would go back in and take out the remnants.