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Reply to "Trying to decide between a permanent ostomy or a j-pouch"

I wish I could add to everyone's positivity and say having the J pouch was great, but after 13 months post takedown, the jury is still out. I had the additional misfortune of having a small fistula in the anal area that upon verification (MRI) that it would be OK to proceed with the surgery without complications, my surgeon opted to 'flay' it open so as to not become a chronic problem down the line. I'm assuming that was the right thing to do - he's very experienced in J Pouch surgeries (Mt. Sinai/NYC) but as my GI says, 'it definitely altered the landscape in there ). After my initial surgery (3 step) not feeling sick everyday anymore (mine was severe UC that ended up being classified after the pathology came back as Indeterminate Colitis) was fantastic, I must admit I felt like a new person the day I woke up from the 1st step surgery. And not having to run to the bathroom constantly is great; I can hold it as long as I want, it just starts to make me uncomfortable in the abdominal area along with an increasing headache, which is not fun, but it beats not making it to the bathroom in time. And not being on those absolutely terrible drugs (Humira/Ramicade) is a great thing also. Having said that...

The first 2 1/2 months after my 3rd step were the most painful and depressing of my life. Butt burn that literally made me cry day after day - that's hard for a guy to admit (and hoping that doesn't come off as sexist) - it was really bad. Took a while to calm down, but had 2 fissures to deal with also (1 has healed, the other still plagues me). But here it is a year later and I still have constant painful BM's (yes, the fissure has a large part to do with that, currently treating it with Nitro, hoping that works, but the pain isn't just in that fissure area). Some movements are pain free, I'll admit, but they are few and far between, and keeping BM's on the softer side rather than the harder side help, but mostly they are irritating/painful. Still using either Calmoseptine (that will become your best friend should you go for the J) or Aquaphor. To make matters worse, I still have constant leakage/seepage. Not a lot, mostly just brown colored liquid, but enough to stain to where I have to constantly wear a pad or something to absorb and not stain my underwear. I think that constant seepage adds to the problem everyday; I try to do kegels but most often stop as its just irritating flexing those muscles when your butt does not feel good.

It's changed my life dramatically, and not in a great way. I can't really go places for long periods of time due to the need to get to the bathroom after a few hours (or face the headache/gas thing), and if I do try to go long periods I end up in the bathroom for a bit of an extended period of time as I never seem to be able to fully evacuate, and like to use toilet paper that is wet, so having access to running water at that particular time is a challenge also. Or carry wet wipes, but the bathroom visit is still a long one, and that can be embarrassing anywhere but home. Also, if I stand for long periods it seems to increase the seepage, not to mention any heavy lifting, which also seems to increase it. I might be writing a more positive report were it not for the seepage, as it seems to exacerbate things. But I'm honestly trying to keep being positive that the fissure will eventually heal and the seepage will eventually stop, which would make me oh so happy. Having said that, it really has made me question my decision as I'm pretty depressed. My social life is down the tubes and my relationship with my girlfriend has suffered greatly - she has been living it with me for 5 years now, I couldn't ask more of anyone, she has been great, but it's worn her down to the point that I've basically backed out of things as I don't want to see her unhappy, she deserves better.

Looking back, were I mentally strong enough, I think I would have stopped at the bag. Felt great, almost normal, but had a really really really hard time with having that bag hanging off my abdomen. Mine was high, above the navel, so I don't think that helped. But I couldn't wait to get rid of it. Little did I know that getting rid of it just resulted in trading one set of problems for another.

Anyway, sorry for the length of the post, but just wanted to give you some things to think about as you go along your journey. Perhaps my story will improve - or perhaps I'm just one of the few whose J pouch is just not going to work out. Either way I wish you nothing but the best - it's a big decision. Be positive despite my story as yours may be have the opposite ending, in which case you will be very happy with a J pouch.

Scott

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