For discussion of intestinal and urinary diversions that avoid wearing an external waste collecting device.
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I need help my stoma is closing again . Everyday it is worse and worse. I went today and tried the pacifier idea but I could not get it to fit even using Lidocain lube. I even had a friend try and make it fit. I have been using a smaller tube (24) and then follow with the larger (30) to intubate. It is VERY painful ripping the stoma open everytime I need to empty the pouch. I am looking for any ideas on how to fix this. Last year I was placing my 28 foley in at night hooking it to leg bag. I HATED that and would like to not have to do it. Having to wear bag reminds me of something that I don't want and is the reason I have the BCIR.
This year will be my pouch's tenth birthday. I had a revision to my pouch last year which was the first big issue I had ever had and several months after that surgery the stoma started healing over and I ended up having it revised at the end of June. I love my pouch and will do anything it takes to take care of it. I just don't understand why the stoma is doing this after all of the years. I am wondering if it has something to do with heat? It seems odd that I have had issues when the weather breaks and it gets hot. I am looking for any advice and thank you ahead of time.
I think this is something you need to check with your surgeon about. I have not heard of anything like this being weather related. Has your weight changed ? Or any change in meds that might cause "physical" changes in your body ?
I have a urinary internal pouch and when ever I am having trobles cathing myself, in the past my uro has me put in a Foley and leave it in there for about a week to help to keep the stoma open. I dont know whether this is something that your surgeon will reccomend, but for my situation it has usually helped me. I agree that you need to talk to your doctor. Judith
You do need to speak to your surgeon about the closing. I had the same issues with my stoma starting few years back. It was pretty similar to your situation I needed some surgery and then afterward the stoma started healing over itself. It is pretty painful and bleeds, and generally very distressing. I had a revison attempt where my surgeon placed a flap of skin inside the stoma to stop it from closing, which was effective for about a year. Then I had an attempt at sort of removing the scar tissue from around the stoma which worked for about six months. The final revision I have now, the surgeon did a day surgery type of thing and moved the stoma over a few inches from it's original placement and I haven't had any problems with it since it was done about 3 1/2 years ago. All of my issues where caused by hypertrophic scarring around the stoma, the skin was pretty well used due to repeated surgery and eventually is just started trying to close. I have had my system since I was 8 and that was the frst time the hypertrophic healing had ever happened (even though I've had multiple stomas for other reason). Leaving a foley in for extended periods of time wasn't an option for me either, and using a smaller catheter meant I had a lot more trouble and nuisance with getting rid of mucus, so I opted for revision. I don't believe it has anything to do with weather, and I wasn't on any meds. Hope it helps
Thank you for the great advice . It always helps to know that you are not alone. I think that I may be like your case and need to have the stoma moved a little. The Doctor here in my local area feels that it is a scar tissue issue that is causing it to close, but I am still waiting to here if they are willing to fix it here or not.
hi,
I'm having the same issue, I had 2 skin flab/stoma revisions with the kock pouch in '06. I'm still deciding what to do, may get a BCIR eventually. I thought I might hear some ideas at the UOAA convention this summer.
After about 5-8 years of having the indian pouch, I had scar-tissue tightening around the stoma, which made it difficult and painful to catheterize. Sometimes it would be difficult to insert the catheter because the eyelets would get stuck. Frequently (daily) I would bleed after urination. Sometimes I would have bits of scar-tissue come off when I pulled the catheter out. I probably could (should) have seen my surgeon, but didn't have the time (I was an undergraduate). Having said that, I've not had any problems with this since around 2001 or so (I didn't really notice when it stopped).
I don't know why it started or why is stopped when it did. You probably should talk with a Dr. but don't let it worry you too much, it seems like a common problem.
Regarding your comment about weather changes.... I notice that my body (and "bladder") has very different behavior if it is dehydrated. You might want to make certain that you're taking care of yourself during the heat (independent of having your urinary issued).
Hi, I had my RC surgery March 2, 2007 just four months ago, everything seemed to be going fine and the last four days I started not feeling well and some pinching feeling in my stoma.
Today I had a difficult time inserting the catherer. I lubricated with KY jelly and got it in. I called doctor's office and the nurse said to keep the catherer inserted for a few days and cap it off.
I am grateful to be able to read your help and advice to the previous writer it helps to know that I am not alone in this ordeal. Thanks for being here to help. Sincerely, Ellen
Hi cook, I've had my indiana pouch about 4+ yrs and my stoma started to close. My surgeon talk to his plastic surgeon golf buddie and they came up with a "star" cut augmentation. The reason it closes is that the "circle" cut scar tissue closes on itself. The starcut actually opens the opening. worked for me. The surgery takes less than 3/4 hr and can be done in the Dr.s office
Chuck
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. Everyday it is worse and worse. I went today and tried the pacifier idea but I could not get it to fit even using Lidocain lube. I even had a friend try and make it fit. I have been using a smaller tube (24) and then follow with the larger (30) to intubate. It is VERY painful ripping the stoma open everytime I need to empty the pouch. I am looking for any ideas on how to fix this. Last year I was placing my 28 foley in at night hooking it to leg bag. I HATED that and would like to not have to do it. Having to wear bag reminds me of something that I don't want and is the reason I have the BCIR.
. It always helps to know that you are not alone. I think that I may be like your case and need to have the stoma moved a little. The Doctor here in my local area feels that it is a scar tissue issue that is causing it to close, but I am still waiting to here if they are willing to fix it here or not.