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Hey all,

I am very happy to be rid of my failed jpouch and am coming on 6 weeks out from pouch removal with ileostomy.

I am pleased with my recovery except for one thing:
I feel a ton of pressure and pain behind my ostomy and at times I feel like it empties with difficulty (although I do have consistent gas and solid output). Sometimes I see an area near my stoma "inflate" and if I press on it, it causes a lot of pain and I may or may not push gas out of my stoma.

I had a very hard postop (15 days in hospital) and my stoma was initially very swollen. Nonetheless, my surgeon was very confident in her work and I seem to have avoided major complications. She said she saw very few adhesions while working inside my body.

I'm wondering how normal this issue is post-op, and at what point should I be concerned that this isn't just a normal healing process? Is there anything I can do other than painkillers and gas-x to ease this?

Thanks.

Replies sorted oldest to newest

Sounds normal. It's the same thing that happened with me.  

I was in 11 days post op. 

My out put has never been solid. Semi solid maybe.  But you may want to find a way to make it more liquid and easier to pass.  

It was still sensitive around the whole area at six weeks. But at eight weeks I went back to work. 

I'm close to a year and a half now and it's smooth sailing. 

Sounds like you did the right thing.  I know I did getting rid if it. 

As for pushing gas out. Well.  I can push out other stuff at times.  Sometimes just bending over pushes stuff out. I noticed that in the shower as time went on. 

Gas doesn't bother me. I have it. But if it bothers you watch what you eat.  I'm gonna eat. So if gas is a byproduct I'll deal with it.   

You're  sore because alot was done in there. I was sore for a few months but it dissipates. 

Welcome to a new or back to life. It's not perfect but it beats the hell out of fighting a pouch that won't agree to work with you. 

I don't know if any of this is any help to you. But give it time.  You seem happy.  It definitely gets better.  I'm proof it does.  I forget about it most of the time now.  Never in my mind did I think that I would.  But I am very happy with it.  Not in love with it but as I have said before. I love what it has done. Ended my struggles.  

I wish you the best. 

Richard. 

Mysticobra

Richard,

Thanks for the reply. I definitely made the right choice, my jpouch was a failure.

Your posts are great and very encouraging. Trying to get in touch with my surgeon just to touch base and make sure what I'm experiencing is normal and ask when I should expect more normal function. The what seem like gas pains make me want to lie down and/or throw up often.

SolomonSeal

You are welcome. 

I never really had gas pains. 

Just regular old pain from being cut on and stuff. 

After that was done I was lucky. Everything pretty well fell in line. I just have skin issues and not what you would expect. It's from my disease. Autoimmune. If it's not one thing it's another. Lol. But. I can deal with that compared to what was going on before. 

I hope you get it figured out. Or it goes away. Because once things settled with me it was all clear down there.  I finally got the problem fixed. And that's what we are all looking for. Not more problems. 

Richard. 

Mysticobra

I no longer have an ileostomy, but I did have one for over 2. 5 years so I am very familiar with the pluses and minuses of having one. Recovery from my first surgery was very slow as I had ileus, obstruction, and swelling. My output was initially also very thick (likely due to the prolonged ileus). Like you, I was also very aware of peristalsis and could see my stomach move around the stoma (I still feel things around the old stoma site even now years later, though I have confirmed adhesions and they are the likely culprit). If blockage, infection or stricture have been ruled out in your case, this seems like par for the course. Swelling after this kind of surgery is normal, and it is not uncommon for the stoma to shrink even to half the size it was post op in the first 8-12 weeks after surgery. You may have to adjust your ostomy system accordingly as the stoma continues to shrink down.  The good thing, as others have mentioned, is that you do have motility and you are passing stool, so an obstruction is less likely. The pain you are feeling may be due to residual swelling or pain at the surgical site, but if it persists, you should get rechecked just to make sure there isn't something else going on, for example, stricture, infected suture, etc. 

One final thing, what is your diet like? This early on after getting an ileostomy, you should still be following a low residue diet. It's not recommended to have foods with a lot of roughage; these have to be added back into your diet gradually, usually after the first 8-12 weeks when most of the swelling has typically subsided. If everything else checks out, and you have not yet modified your diet, that could be some of the cause for your pain. Google "low residue diet" and try following that for a few days to see if things improve.

Best of luck!

Spooky
Last edited by Spooky

I know this is a very old post but sometimes I go back to make sure the narrative is completed. What ended up being the case was that the hole in the "fascial" layer for my stoma was not wide enough, so I basically left my jpouch removal surgery with a partial obstruction. An MRI showed how narrow it was and this probably all explained my tough post-op. It was not normal, in fact the tissue was inflamed from being so tight.

I went back for re-operation about 2-3 months after the jpouch removal. They fixed the stoma aperture and things got immediately much better. That was a horrendous 2-3 months and I was naturally upset that the I left the first time with a problematic stoma, but I was glad that in the end I came out OK.

The last three years my health has been incredible, since then. The stoma functions quite well, although I still wonder if the aperature is still a little narrow, such that either minor trauma to the stoma or GI infection makes me feel kind of obstructed. Overall I eat and exercise completely freely and take no medications. Of course stoma life has its challenges but they are much better to have than anything related to IBD or pouch problems.

There are definitely no easy answers, but here is another story of a pouch-to-stoma transition that was ultimately good.

SolomonSeal

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