Longest stoma lifespan & causes?

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drfields24
Jul 03, 2017 3:04 am

Hello everyone, I would like to ask a question. What is the longest time before you had to have a new stoma placed, and I'm curious as to what caused it? Maybe it could help me learn not to make the same mistake. Thank you a bunch in advance for sharing.

elberix
Jul 04, 2017 4:57 am

Dear Dr. Fields24, I'm not sure I understand your question but I'll share my experience and hope it helps. Last year, I underwent surgery for an abdominal fistula (internal infection). My surgeon found a connection from the fistula to my stoma (I had an ileostomy done in 2010). So, my doctor had to remove the fistula and the old stoma and made a new ileostomy to get rid of the infection completely. My new stoma is better than my previous one. It is nice and straight and is smaller at the base, which helps keep the wafer on even if it starts leaking.

From what I've lived through since my initial ileostomy, there's a likelihood that problems will arise in the abdomen. One of these is adhesions, tendons that grow in the abdomen to strengthen the area around my incision but may choke my small intestine. Another common problem is infections around the stoma.

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Immarsh
Jul 04, 2017 12:23 pm

Hi, my name is Marsha, and I have had my same stoma (ileostomy) for over 50 years.

It's gotten smaller and has retracted into my belly somewhat, which can occasionally cause leaks.

I saw an excellent surgeon a few years ago, and according to him, his advice was to keep the same stoma for as long as it continues to work well because I'm not the best candidate for a revision.

I had two pregnancies in my early twenties, but my weight gain over the years has left my belly flabby. I was also on steroids (4 years for UC) which changed my skin texture and left me with belly stretch marks. I'm very short, and a new stoma couldn't be placed on the right side, below my waist (where my stoma is now), and my left side has the incision and a lot of flabby skin. So my best advice to you for future issues is to keep in shape, keep your weight down, exercise (toning), and be kind to your existing stoma. As others may advise you, internal issues can cause problems (adhesions, hernias, etc.), but you have no control over that. Best regards, Marsha

Civey
Jul 04, 2017 12:34 pm

Hi,

I had my initial stoma in 2008 and revision in 2015 due to the initial one retracting. Which led to constant leaking and skin irritation. The surgeon gave me no reason for the retraction, I just think that it's part of having a stoma, although I did gain a lot of weight after surgery. The new stoma is doing well so far. I think that there are numerous reasons for revision, so it's difficult to pinpoint why one has to have one. Sorry that I couldn't say more definitively why but it's just the nature of the beast. Good luck. Charlie.

kbd
Jul 04, 2017 1:10 pm

First one 2011 and second one 2017, a little over 6 years. Crohn's flare-up had caused a peristomal ulcer being fed by a fistula. Depending on what caused your stoma to begin with, I'm not sure a lot can be done. I do think wearing an ostomy belt is a good idea to help prevent a hernia. If you have Crohn's or UC, take your meds and watch your diet.

 

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ivastoma
Jul 04, 2017 3:07 pm

My question to KBD... What meds, if any, were you on after the first ileostomy? I had surgery Jan 2015 (Crohn's) and am on Remicade every 8 weeks. Also, what belt do you wear?

kbd
Jul 04, 2017 9:10 pm

I only had occasional flare-ups, so I took prednisone and cipro. But then I had a very bad flare-up last spring that caused the peri-stomal ulcer and fistula, which led to my second surgery. My first surgery was a colostomy, with half of my bowel removed. This time, the rest of my bowel was removed.

My belly sticks out a bit, so I wear a 4" Nu-Hope belt most of the day when I'm going anywhere or will be lifting anything remotely heavy. Sometimes in the afternoon and in the evening, I will just wear a 1" belt when my ostomy is not as active. If you have a flat stomach, a 1" ostomy belt would probably be fine.

chet8625
Jul 05, 2017 11:34 am

Ileal conduit done in June 1967... 50 years ago last month. Same stoma, no issues.

aartist
Jul 05, 2017 2:25 pm

I have had my stoma for 45 years and never had a problem with it, so there has been no need to change it. I pray the same for you.

Best of luck.

Tom Schneider.