Has anyone had to have a temporary stoma after having problems with their j-pouch? I’ve had my j-pouch for 4 years and about 2 years ago I started experiencing ongoing mild to moderate lower, right side abdominal pain with episodes of severe pain in the same spot once every few months. I’ve been told the cause may be constipation and/or adhesions causing partial obstructions and/or IBS. My doctor is now suggesting that I consider a temporary stoma. I’m wondering if anyone has been through this and what the experience was like. My temporary loop ileostomy between my first and third surgeries was awful. It leaked constantly and I had to change my bag every 1-2 days. I’m worried it would be like that all over again. Also, I’m wondering if after the temporary period was over if I would just go back to dealing with the same original issue I’m dealing with now. Thoughts?

Original Post

Some people definitely have been in the same situation and had luck with the temporary break and having a stoma again.

I have not, but I have the same concerns if I am presented with option. My stoma site was getting very angry and the bags were getting harder to keep on for any length.

Good luck either way, sorry I can't be more helpful, hopefully someone else can chime in.

If you do need to go back to a temporary ostomy, I hope you find relief. If needed, ask your surgeon to make sure your temporary stoma is not retracted, if possible. Mine was retracted and so deeply set under the skin surface that leakage and the resulting burnt skin was agony and the constant bag changes was stressful. They can put a temporary rod under the stoma to stop it "slipping" back inside, and remove it when the stoma seems set. Unfortunately I didn't have a rod in place because we didn't know it would retract. Good luck. 

Winterberry,

Thank you. I will definitely bring up this concern before seriously considering surgery. I had three surgeries to get to where I am now. 1. Total colectomy with end ileostomy - this one was great! 2. J-pouch with temporary loop ileostomy - this one was awful! 3. Ileostomy takedown. The stoma from the second surgery had the rod but was still very flat which made it really hard to attach a bag and prevent leaks. This is what I’m worried about. I would want to know what the surgeon was going to do to try to prevent this. I’ll bring all this up with my doctor and surgeon if we get to that point. 

I'm sorry to report that I too had difficulties with a temporary diverting loop ostomy. I think it's the loop that is the problem...something to do with tension. Mine retracted to the point that it disappeared. They did a revision which helped with the retractions (and ongoing obstructions)  but then I experienced ridiculous prolapsing. Again, I think the loop is the problem vs an end ostomy. My first ostomy (between the colectomy and take down) was problem free and I think it must have been a loop as well so who knows? I hope for a good outcome for you. 

JHendrix,

Thanks for replying. I agree, the loop seems to be problematic. Did you end up going back to using your j-pouch after a temporary diversion? How did that go? Did your original problems come back or get better? 

I am happily back with the j pouch. I had the diverting ostomy to try to give a fistula a chance to heal. It didn't but I have chosen to live with it. If it becomes unmanageable I would likely go to an end ileostomy.  

It's so hard to know if it's worth the risk to try isn't it? But I felt I had to at least give it a shot. What is your doctor's  explanation for how a temporary ostomy might address your issue? 

Sending you my best wishes...

JHendrix,

Thank you for your input. I’ve only been communicating with my doctor over email since August and will probably have to wait until I see him in person to get a better explanation.

My appointment in August led to several tests, most had normal results, ruling out inflammation, Crohn’s disease, pouchitis, strictures, etc. The last test I had done indicated that I have IBS. I had an appointment scheduled to follow up with my doctor about all of this but I’ve had to reschedule several times, first due to snow and not being able to get there and now due to COVID-19 concerns. I’m hoping I can do my next appointment by telemedicine so I don’t have to reschedule again. The hospital said they are working on setting it up and I’m waiting for someone to get back to me to let me know if this is an option.

My doctor’s emails have been very brief. He basically said that a temporary stoma might allow me to eat better and improve my quality of life. Personally, I think there are still a lot of things we should try before heading down the surgery path so I’m hoping something will work. I really don’t want to have any more surgery! 

Last edited by SJAN810

Did you discuss getting a perm ileo instead of a temp one?  I had a permanent ileostomy while being diverted from my j-pouch.  My surgeon spent 3 hours while in there lysing my adheasions/scar tissue.  She did all this laparoscopic.  I really didn't want a temp one as I had horrible problems too.  Later on I did need to have my j-pouch removed as my pouch problems didn't go away. But shoot you don't have any of the problems I had.  I take that back I had IPS too.  I would ask if s/he is going to work on the obstruction/adhesions while in there. 

I suggest you get a permanent ileostomy while you need it.  Permanent doesn't mean you can never go back to using your j-pouch. I trusted everyone on here that told me the perm ileo was night and day different from the temp one and they were right.

I hope all works out 

TE Marie,

Thanks for responding! Sorry to hear you have dealt with similar issues. I'm wondering what you mean by a permanent ileostomy? How is it permanent if the plan is to temporarily divert from the j-pouch and go back to using the j-pouch? What's the difference between this one and the temporary one? I'm confused. Is it an end ileostomy where they disconnect the end of the small bowel from the j-pouch to use for the stoma and then reconnect it later? 

Thanks!

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