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Reply to "Am I really going to have to go on a long term low residue diet?"

I'm posting to this thread again to let you know what I've found out and to see how you are all doing.

Subzero - The ART therapy worked well but I was afraid to let her work on the area that is around my stoma scaring.  I just don't know where the adhesion ends and my j-pouch starts.  My PCP checked my abdomen, she also prescribes my pain medication. She could tell that my adhesions were better.  I didn't tell her about the ART therapy until after she noticed.

 

I found out in February that I have more than adhesion problems.  I had a balloon dilation performed on one of the "owl" eyes during a pouchoscope.  It was at the efferent limb of my j-pouch, or the short side of the "J".  It didn't work for very long. So the problem that I thought was at the top of my pouch was almost at the bottom.

 

I started taking an antibiotic Xifaxan, instead of Flagyl, rotating with Augmentin changing every two weeks.  I couldn't tolerate flagyl anymore.  I made a mess of things by NOT using VSL#3DS for several months in hopes that the antibiotics would get the inflammation down.  I recently did a solid week of no antibiotics but 2-4 times a day of VSL#3DS probiotics instead. I'm again using probiotics when I'm taking antibiotics again.  I messed up my system by stopping them and have a yeast infection now too.  I'm treating that with traditional internal an external medication.  I am miserable.

 

I've been limping along since Feb., taking my j-pouch antibiotics and trying to get my hypothyroidism under control.  FYI - Thyroid problems affect our pouches and mine is really out of control. I'm working on that with a new Endocrinologist. I'd just worked with my PCP's before.

 

My GI wants to do another pouchoscope himself, rather than looking at the pictures after another GI does it.  He's the head of the IBD Clinic at Mayo's and teaches etc. - so I can't get in until the last week of July  He thinks I might need a surgeon to dilate it under sedation - after he does the scope/dilation.  

 

I am limping along here and feel tethered to my bidet.  I have to use the "turbo" function to give myself enemas multiple times daily.  We went away for 2 nights twice since February.  I take along fleet enemas. The instructions say to only use that solution once every 24 hours.  I use warm water the rest of the time as once a day isn't enough.  

 

I'm still basically eating PlantFusion protein fruit/veggies smoothies, english muffins w/peanut butter and Greek yogurt daily.  Sometimes I eat some chicken and mashed or baked potatoes or sandwiches. I don't eat beef at all.  I tried a McDonaleds quarter pounder a few weeks ago and remember why I haven't had their food for several years.

 

I hope you are all doing well. I keep thinking I just need to give up the fight.  I have chronic cuffitis and pouchitis.  The cuffitis is under control with daily canasa or anucort suppositories but if I stop using them it comes right back.  I have IPS as well.  This makes since because I had IBS along with my UC. My pouch is large and for all I know could be prolapsing too. I'm in chronic pain from this and take Norco pain and Bentyl antispasmodics daily along with managing my other health problems and different kinds of chronic pain from them.  The pain medications don't take away all of the pain but dull it.  I have some really bad days.

 

I'm disabled and haven't been able to work for 5 years.  I should change my screen name to Debbie Downer.

 

Last edited by TE Marie
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