?pouch removal

L

im going through the same thing fur different reasons.  Do you have chronic pouchitis? Have you tried prescription lomotil or Imodium or Metamucil  to help form stool?  Metamucil always seems to help my stool become more formed. Also, have you tried probiotics? 

Well.  You will still have liquid stool but it doesn't hurt. Not like with the experience I had with a pouch.  Diarrhea hurt pretty bad with a pouch.  Burning and such.  That's all gone. It's about the best luck your going to have with diarrhea.   I got my life back with an permanent ileo. 

Richard. 

I would want to see if anything else could be done to obtain acceptable results with your pouch before undergoing surgery to remove it.  Consider getting a second opinion from a doctor who has experience in treating j pouch problems.  If the decision is made to remove your pouch, there are three options available: an ileostomy, a k pouch and a BCIR.  The last two are internal pouches constructed from a short section of your small intestine and do not require having an external bag.  There is a lot of information available on the internet for both of those procedures.  I have a BCIR that has given me a very good quality of life, but others have had good results with an ileostomy.  It’s a personal decision that is best made after doing your research and discussing it with your doctor.

Bill

I think u should get 2nd opinion.  When I was going thru my surgeries to get J-pouch, I had to have ostomy bag for a month.  My diarrhea was so severe that I had have to additional bag by my bed at night to empty into.  I have J-pouch now for 3 yrs.   I have struggled, but with diet where 90% of my food I make from scratch which is gluten free, organic, ngmo, I take only 2 pills of  lomotil,  a range o vitamins, P.T, light exercise program; I am much better.  On a good day I maybe have 5 bowel movements.  A far cry from 15-20.

 I did want to mention recently I a bout of diarreha.  I found out I had siob (small intestine overgrowth bacteria.  My dr put me on a antibiotic.  It really didn't help.  I see her Monday and want to go over this.  I looked up diet for this and is similar to my diet, also, oregano pills a natural antibiotic.  So many things to twek and change to see if u can get better.  

I know my surgeon in Phila.  said he wouldn't do surgery on me anymore, it's beyond his experience and I would have to go to Cleveland.  I don't even want to have surgery again or bag  I fear diarrhea overload from last time.  I think I will continue on this path until theirs no other option.   Good luck with your decision.  

I'm going through the same issue now but for different  reasons . I have a  a stricture  that makes emptying my pouch extremely painful and as a result I have now developed several painful anal fissures. I'm having an exam Monday to see if surgeon can help salvage my pouch.  My pouch has never worked well from day one six years ago. Constant  struggles and lots of pain and  endless sleepless nights  

I would try altering your diet if have not already done so and go dairy  and gluten free.  The   paleo diet helps many and possibly strong  probiotics and Metamucil .  There  must be something that  can done to firm your stools so you do not have constant  diarrhea.  With  all the issues I have been struggling w for years,  I would not  accept a suggestion to remove my jpouch due to diarrhea  alone ESP  if you are not in pain and can control your output etc   Jpouch stools tend to be more liquid often also. Good luck  

I had a scope today, he did biopsies for to check for pouchitis. My anal canal is really tight/in spasms and there is a large ulcerated area on anastomosis. I have to go get it biposied another day under GA.

Winter Wish,

Has doc prescribed you anything like Canasa? How are you feeling? I know how hard it is to have bad anal pain. I have those spasms too which is what has brought on the anal fissures also.  

Didn't get any prescription yet, waiting for biopsy result. I have had anal fissures before, really awful pain! 

Oh winter.  It's just awful. I have pouchitis now w the fissures and the stricture. I'm praying for the best but preparing for the worst news after Monday's  procedure. 

I hate cipro as much as I hated prednisone in the UC day,  but  it is the only thing thar works to relieve some of my suffering when I am this sick. 

Botox helped with my fissures before. I had a pouch advancement before to remove rectal cuff (cuffitis). Let me know how you get on

Winter,

How do you have the ulcer if no longer have a cuff?  Or is cuff still ggete but a much  smaller size?

 I'm so sorry you are going through this. I have started canasa suppositories too. It seems to be helping  the fissures as I have same issue w extremely tight anal canal.  Since it's so expensive I cut it in half and use twice daily to keep medicine in that area for as long as possibke continuously.   Hope they can help you   That med may work for you and it's pretty benign.  Please let us know how you make out. 

Was recovery rough for advancement surgery? 

I too had advancement surgery. I was still pretty sick so for me it was tough but I heard of others who fared better. 

Winter, I almost lost my pouch but was given a choice and am doing really well on Entyvio you might want to look at the bio drugs before you do major surgery. I was really scared but my body needs them and my pouch has never been better

good luck I too would seek another opinion GI and surgeon

I just asked GI for prescription for enteragam.  It is a medical food.  It is supposed to help pouchitis  and diarrhea caused by bacterial overgrowth. It may be an option for you Winterwish?  I do think it is expensive  and not covered by insurance at this time . My GI had to look it up on the internet after I suggested it. GI's are human,  very busy and not always aware of potential breakthroughs.  She never heard of it before.  

That's interesting! Will ask if it is available on this side of the Atlantic! 

Many thanks

Linda

Good luck it did nothing for me but my GI said sone of her pouch patients do well on it

I was up late last night reading a book called the Plant paradox, it's an interesting read..

Had an EUA and Botox last week. There is a lot of spasm, sobotox is to help with that. Surgeon said there was a chronic ulceration at/near anastmosis that is traumatic and might not heal? He didn't recommend anything for it. I'm in a lot of pain��