Pouch Not Working

Hi Narbus, 

Sorry to hear what you are going through and I certainly know those symptoms.

Get yourself to a Dr that specializes in motility issues for an opinion before doing anymore surgery. It’s difficult to find them , and you are correct, not many of us out there with these symptoms.

I’m not sure If my situation would be different now if I had seen motility people earlier, but from what I’m told now, looks like there was a good chance my life would be a lot easier.

I’m thankful to all that have given me care, just looks like we missed a part due to a rare condition.

Best of luck to you and please give it some thought🤔 Keep positive as you can and proactive!

Jan

That sounds tough, Narbus. Have you tried increasing your water intake substantially throughout the day? The water has to go somewhere, and there is likely to be an amount that your small intestine can’t absorb, leaving it to soften the stool. Another thing that might help is soluble fiber, though you might want to use it with extra water at first, to be cautious.

Hi Narbus, 

Your story sounds awful.  But you sound like you are very strong.  I have an unconventional idea.  Maybe you have some pelvic floor problem and physical therapy could help.  There are specialized physical therapists that work on pelvic floor muscles.  I had horrible bladder pain for years and I underwent a few months of exercise and internal manipulation (was a little embarrassing), and it helped a ton.  I was very skeptical at first.  I had the physical therapy for an illness called Interstitial Cystitis, but it helped my bowel function also.  It may be a shot in the dark, but it can’t hurt to try before surgery.  Best of luck.  Doug 

JanW2 posted:

Hi Narbus, 

Sorry to hear what you are going through and I certainly know those symptoms.

Get yourself to a Dr that specializes in motility issues for an opinion before doing anymore surgery. It’s difficult to find them , and you are correct, not many of us out there with these symptoms.

I’m not sure If my situation would be different now if I had seen motility people earlier, but from what I’m told now, looks like there was a good chance my life would be a lot easier.

I’m thankful to all that have given me care, just looks like we missed a part due to a rare condition.

Best of luck to you and please give it some thought🤔 Keep positive as you can and proactive!

Jan

 

 

Thanks Jan. Very good advice.  I found a Dr at Yale where I had my surgery. I will see if I can get an appointment. 

Doug K posted:

Hi Narbus, 

Your story sounds awful.  But you sound like you are very strong.  I have an unconventional idea.  Maybe you have some pelvic floor problem and physical therapy could help.  There are specialized physical therapists that work on pelvic floor muscles.  I had horrible bladder pain for years and I underwent a few months of exercise and internal manipulation (was a little embarrassing), and it helped a ton.  I was very skeptical at first.  I had the physical therapy for an illness called Interstitial Cystitis, but it helped my bowel function also.  It may be a shot in the dark, but it can’t hurt to try before surgery.  Best of luck.  Doug 

Thanks Doug I will look into. I really do suspect I have a problem in that area. It seems like sometimes I actually have to push on my stomach to move the poop out of me. Happy to hear the therapy helped you. 

Scott F posted:

That sounds tough, Narbus. Have you tried increasing your water intake substantially throughout the day? The water has to go somewhere, and there is likely to be an amount that your small intestine can’t absorb, leaving it to soften the stool. Another thing that might help is soluble fiber, though you might want to use it with extra water at first, to be cautious.

Thank Scott.  I drink water like crazy. My surgeon thinks I have an issue in upper GI tract where my body produces thick stool. Says is not really curable. When I had colitus I had the same issue. Very seldom did I ever have diarrhea. I will def try some psyllium husk and see if it helps.