Permanent Stoma

Chris,

Welcome to the forum.

I am sorry that you are struggling with this disease.

Having a stoma does not guarantee remission from any of the Crohns disease symptoms. I have a severe aggressive form of Crohns with a colostomy. I still have fistula, abscesses, skin issues, eye issues, extreme fatigue, nausea, and arthritis...just to name a few. Others are more fortunate than I am.

I can say that with my colostomy I am not having 5-8 accidents every day...so that part is better. There are days when I (for a very brief period that day) feel almost normal but then the other symptoms kick in or I have to go clean out my fistula for the 5th or 6th time that day and reality kicks in.

Please just keep in mind that everyone is different. Hope for the best but prepare for the worse.

Clo

At this stage it doesn't really sound like you have anything left to lose. If you're still undecided, you could always talk with a surgeon about the pros and cons of a temporary stoma instead of a permanent one - sometimes fistulas will heal of their own accord once stool is diverted away from the affected area. Trouble is, you've guessed it, the Crohn's tends to come roaring back upon reconnection.

I think if I was in your shoes I'd go for a permanent stoma. I had a stoma for two years and I was definitely better - in fact it was the first time I'd been in remission since diagnosis. Got reconnected, and the disease came straight back. I don't have fistulas or abscesses to deal with, which is fairly unusual for Crohn's colitis, but it's been severe in every other aspect. Think if I started getting abscesses as well, I'd be booking surgery to get everything removed, butt sewn up, and a permanent stoma created.

@Clo - You still have your rectum though, don't you? If you removed it wouldn't that stop the fistulas and abscesses? I'm genuinely not sure.

I definitely would say it is worth a consult with a surgeon to discuss the options for your situation. Everyone as you can see is different.

If you are interested in a permanent stoma I would definitely ask about an ileostomy vs colostomy for your situation. Some cases one is recommended over the other. However in my situation I noticed a bigger improvement when my entire colon was removed. When I had my resection and part of my colon remained I still had some issues like nausea, skin sores, exhaustion. Although I still felt greatly improved with the temp ostomy, once my entire colon was removed those extraintestinal symptoms went away.

I feel you, as a fellow Chronie with multiple fistulas and with a temporary ileo (in place before gracilis repair surgery).

In the past two months, I have seen several new doctors for second and third opinions (both medical and surgical). Some place my odds of getting reconnected much lower than I ever expected and suggest I just jump to the proctectomy/colostomy.

While I realize that may be the end (no pun intended) result, I still want to know that I tried other medical (and possibly surgical) options since I am relatively young and stubborn. In fact, today my doctor and I regrouped and have decided I am going to try a new biologic and add an immunosuppressant to the game (after fun imaging/exploration to assess paths and inflammation).

Ultimately, it's your body (even if it often doesn't feel like it) and you need to do what feels right for you. I definitely recommend consulting with at least one other doctor if you can, and then making your own decision as to next steps. It's a big physical and mental decision to make that change and I strongly believe you have to be ready on both fronts!

Best of luck!

Good luck with the laser surgery. I hope it helps.

Throwing a quick thought out there...

I was once offered hyperbaric chamber therapy. Have you given any consideration to that?