Somehow 'lost confidence' in my pouch

Hey everyone!

I have my pouch well over three years now. In that time I was able to play football (I refuse to call it 'soccer' ). Not without interruptions as I have some anal pain from time to time. I don't know what causes this anal pain (you can check my profile, I have already asked about this problem) but after a while it goes away. So when I have this pain I take a break from football, when it's over again and everything feels fine I join back in.

The problem now is that I somehow don't get this feeling back that 'everything feels fine' again. As of now, I don't feel confident enough to do sports. It's been quite restless for about 3-4 months now. The breaks I had to take before were not longer than a month normally.

But right now it always feels somewhat 'sore' down there. Not in a manner that it is really hurting but more like in a 'it's not all good'-manner. I know, this description is very bad but I can't find the words to properly describe it. Maybe you have experienced the same and know what I mean

I wouldn't say that there are no problems and that I might make this up in my head, it definitely feels different from 'normal'. When I stand up from sitting I feel no real pain but a slight discomfort, when I'm on the toilet I try to not press so hard as it feels worse than normal, contracting my sphincter very tough feels sore as well.

All in all the situation as it is right now made me somewhat lose my confidence in my pouch as I don't feel like it's really getting better and I can start playing football again or not having to take that much care of myself when doing daily 'sporty' activity like having to jog to the bus, jumping down the last two steps instead of taking every single step etc... I don't do body exercises (fitness exercises) because of that either as it just doesn't feel right down there and I don't want to risk anything by doing sports that might cause damage.

I somehow feel like and old man altough I'm only 23 years old

Has anyone experienced the same and has some tips for me?

Best regards

ElSur

1/22/176:45 AM

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TE MarieMember

I think my you should see your GI. You might have cuffitis, pouchitis or some other problem. Because you feel different it may be due to there being a problem that may need medication. It's sad that you have to give up playing the game you love because of your j-pouch. Hopefully things can improve.

1/24/1712:59 AM

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Scott FMember

I'm with Marie. When a J-pouch is healthy it doesn't stop you from enjoying whatever life has to offer. It's best to find out what's wrong and deal with it, if possible.

1/24/1710:35 AM

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ElSurMember

Right now I'm not sure about my GI. The one I trust and I regulary went to moved to another hospital which is about 4h away. So that's not a very good option right now :/

In my hometown I haven't found anyone yet who I like being treated by

I'm quite sure I don't have pouchitis. I've had it before and symptoms were quite different.

I'm not sure about cuffitis, that might be worth considering. I'm about to start a treatment against it. If I'm informed correctly you do so by giving mesalazine, no? Typical UC treatments often are cortisone (prednisolone or budesonide). May I try them first? IIRC mesalazine didn't show that much improvement when I was treated for UC.

1/26/171:19 PM

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Scott FMember

It's best to get a proper diagnosis before treatment, although in some cases treatment can be the best way to confirm a diagnosis. I wouldn't usually put cuffitis in that category.

The fact that mesalamine failed to control your UC isn't good news, but it's also not a guarantee of failure for cuffitis. You can essentially bathe the rectal cuff in mesalamine, which you were never able to do to your colon. The side effects of mesalamine tend to be much less troublesome than steroids, which is why it's usually tried first.

1/26/171:46 PM

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TE MarieMember

There is several other treatments. My Internist looked up the textbook treatment and prescribed for me once. Anucort, hydrocortizone is a good inexpensive suppository and Canessa is the expensive Mesalamine one. There are also enemas. I could never get it fully under control even using both types of suppositories daily. I am not the normal case as my j-pouch ended up failing.

1/26/177:44 PM

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JJAMember

Anal pain was often my first and primary symptom of pouchitis, later followed by night time incontinence (but I have a bad sphincter, so with a good sphincter the anal pain alone could have persisted for much longer before nighttime incontinence would have set in). Lots and lots of treatment options, but agree you need to get a proper diagnosis first.

Dont let treatable symptoms get in the way of living the life you want to live!

1/26/179:10 PM

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