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Well most know my story.  Still having problems well over a year after having my pouch connected after only wearing a bag for less than three weeks.  It was an emergency and they decided to hook it up while in there. 
Ups  and downs all year and now... Well I remember having this type of pain since my teens but has really come on more often since the removal of my colon.  Sharp stabbing pains above my pouch.  Had an mri two weeks ago that showed something was there.  They can't tell so I had my followup yesterday and they scheduled me for a scope next Thursday to see what it is.  They are thinking it was chron's all along and not UC.  I know.  Hard to diagnose one or the other.  Just an educated guess when the ulcers are only showing up in the colon.
I have a question for Jan or anyone who may know.
Will I eventually lose my pouch?
I know removing the colon will not get rid of chron's.  But can a person with chron's live on with a pouch?
I have a feeling deep down that is what it is... You just know.
Thanks All.
Richard.
P S.... The pain I experience happen when I am in a seated position all day.  I drive a forklift... Hi lo....whatever the term is in your area.  It starts getting bad at the six hour point and unbearable by the time my shift is done.  On the weekends it is mild pain as I am not seated for long periods.
Last edited by Mysticobra
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Well, I guess that is the $64K question, eh? Of course, nobody can predict whether you will or won't lose your pouch. Lots of ifs. IF this is Crohn's, then yes, your risk of pouch failure goes up, like from 5-20% to 50%+. But, that does not mean pouch failure is a given. IF this is Crohn's, then pouch removal is a last resort because the primary goal is to preserve small bowel whenever possible. As you know, pouch removal would not cure Crohn's either. Assuming you do have active Crohn's, this might mean you need maintenance treatment (antibiotics, mesalamine, Imuran, and/or biologics). 

 

Crohn's is a tough diagnosis to make. Hopefully they get on the right track sooner rather than later!

 

Jan

Last edited by Jan Dollar
Thank you Jan... All hope is not lost.
I get scoped next Thursday the 5th of February.
I will post the results.  I think I know the answer.
If she suggests biologics I am going to try remicade.
I was on it at the sickest point and it worked like a charm.  I was taken off it because of hernia surgery and it didn't work after that.  This has been about 8-10 years ago.
I don't or won't know if it will work again.  Come to find out two years ago I should have never stopped the infusions.  But nothing I could do at that point.
I... Without talking to my dr/surgeon.... Plan on keeping the Pouch as long as I can.  I guess until it gets invaded by ulcers.  Then I will not.... Pun intended... Fart around and have it removed.
I appreciate your straight talk.  No use gamming it up.  It is what it is. 
One more question.
Can a stricture form above my pouch?
When I has my second and third surgery I was opened up and sure things were pulled out to find what was wrong both times. I was just wondering if one could form above the Pouch because of that.  I know weird question.  I am weird.. Or think weird thoughts of what could be in there without really much knowledge of it.
Thank you.
Richard.

A pouch inlet stricture is fairly common, but anal stricture is more common. Above the pouch, the most common stricture site is at the ostomy site. Sort of makes sense, right? If there is a random stricture unrelated to surgery, then that is another indicator of Crohn's (I don't mean obstruction due to adhesions outside of the bowel, but a stricture within the bowel wall). A pouch scope may or may not be able to rule Crohn's in or out. There is a lot of gut beyond the scope.

 

As to resuming Remicade after stopping it, there is some controversy regarding that. Conventional wisdom as been that you cannot resume it due to antibody formation, but some people have been able to resume it at a later date without allergic reactions. A new study, though, shows that Humira is just as effective as increasing the dose or shortening the dosing interval of Remicade when it starts to lose efficacy. Good news with Humira is that you do it yourself, no time sitting around getting IV infusions. It stings though.

 

I cannot tell if you are weird or not. You better ask your family

 

Jan

Well not weird... Just ask weird questions!
Well I am hoping  for scar tissue but my ostomy  was on my left side and the pain is on my right.  It's always tender when pushed on a bit. 
I have been on Humira and Symponi... Not at the same time.  Been a few years.  Humira is actually easier for me to inject than the regular needle.  I tend to go to deep or not deep enough.
But that all is down the road a bit and will decide on later depending on the results.
Thank you Jan.
I will update next week after the scope.
Richard.

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