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10 replies

Not quite sure..

T timyounggMember
Hello everyone, my name is Tim and I'm new to the forum. Had a complete colectomy in June of 2009 and had the takedown in July of 2009. Things were going well, had 2 obstructions but have been good for a few years.
The reason why I am posting is because in the past few months I have been wishing that I never had the surgery in the first place. Since January or February I have been having accidents every night..I've had them in the past following my surgeries and on occasion afterwards but since the start of 2015 Things have just been downhill. I figured that it was just how things would be with the pouch. At the start of last week, I've been having crazy urgency to go but not much is coming out, or I feel like I have a lot more that should be coming out. Even have to push to get some out which isn't normal for me. It is 1230 pm right now and I have gone 7 times since I have woken up at 8 today. I have a feeling it's chronic pouchitis as I have had pouchitis a few times..just not sure what to do. I know things could be a lot worse but I was just looking for some advice or input. Thanks!
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C CeeeeCeeeeMember

Love the title of your posting!  "Not quite sure...."  As far as I'm concerned, this could be the mantra of the medical profession.  When it comes to my J-pouch experiences, my doctor(s) give it their best shot......sort of a process of elimination!  If things aren't resolved with their first effort, they move on to the next, etc.  So  we are not the only ones who are "Not quite sure"!  I've learned to practice patience and to slow down my expectations for quick resolutions to J-pouch challenges.  Fortunately,  my docs do seem to find solutions eventually!  I still hope for this to happen sooner rather than later!  Best wishes to you! 

T timyounggMember
I have definitely learned to have patience and to be forgiving with what happens with the pouch..however sometimes I just can't help it and think too much! The only reason I say chronic pouchitis is because I have had it 5 or 6 times in the last 2 years. We diagnose and treat, then it's back 2 months later after the treatment. I should've mentioned that, my apologies. Also, I will be seeing my doctor next Thursday.
Scott FScott FMember

Let's call that frequent pouchitis rather than chronic pouchitis. I wish I got two months off between treatments!

 

There are a couple of things you can do that might reduce your pouchitis frequency. VSL #3 DS seems to have exactly that effect (preventing/delaying pouchitis) in clinical trials. The other thing that helps *some* people is significant reduction of carbs (starches and sugars) in your diet. Good luck!

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