I also had my j pouch surgery at Mayo.  Mine was in 1981 by Dr. Robert Beart and I later participated in a clinical study conducted by Dr. Pemberton.  It appears that your problems do not relate primarily to your j pouch, but it is wise to have it scoped as part of your examination.  The great thing about Mayo Clinic, and also Cleveland Clinic, is that you can be seen by a number of specialists who work together in conducting your examination and in making recommendations for follow-up care.  Hopefully others can address the other issues you mentioned since I have not experienced these problems myself.  Be sure to let us know how your October exam turns out and I hope they can provide a good resolution for you.

Thank you Billy!  So great to hear of your story and I am so happy you are still doing well.  If it were not for my Arthropathy / Arthritis pain / Fibro pain, I would be doing well.  The pouch is mangageable with probiotics and occassional antibiotics like Xifaxan.   Have you been back to Mayo for follow up and do you need to be on antibiotic therapy at all or occassionally...?  If so how often?  I do remember Dr. Bearts name... even though I was so young.  Dr. Pemberton is wonderful and I am praying Mayo can help me as well.  

Hi Mike,

My story is lengthy.  I returned to Mayo two times for a second opinion on high grade dysplasia in the anal canal.  The first time followed removal of a small malignant polyp.  The condition returned 7 years later and Dr. Pemberton recommended removal of the j pouch and creation of an ileostomy.  I was strongly against having an ileostomy with its associated quality of life issues and followed up my research on the k pouch and BCIR which do not require an external bag.  I opted for the BCIR and the results have been excellent.  I never had to use antibiotics with the j pouch, but did for several months after my BCIR surgery.  Since then, I have not needed any antibiotics.

Bill

 Thats amazing Bill.   God... You have been through a lot.    How long ago was your conversion?   Dr Pemberton did the surgery?     Where you happy with Dr. Pemberton ?   Are you happy with the results and the quality of life ?   

I had my BCIR surgery in April, 2013 and my surgeon was Dr. Ernest Rehnke in St. Petersburg, FL.  After my consultation with Dr. Pemberton, I learned that they no longer do the k pouch at Mayo and have never done the BCIR.  Cleveland Clinic does the k pouch surgery.  Although I was disappointed with Dr. Pemberton’s recommendation for an ileo vs. a k pouch or BCIR (he said I was too old to get one, which is BS), he did a very good examination that confirmed that there was no cancer present. 

My BCIR surgery went very well and I am completely satisfied with the results.  With this procedure, I am able to do almost any activity I want, eat most of the foods I want, get a full night’s sleep and not have to worry about any leakage or odor as I would likely have had with the bag.  Please feel free to send me a PM if you would like to talk.

Bill

Hi Jersey,

I am so sorry. There are no words. But I do have some questions.

Firstly, what in your opinion is the primary issue, the weight loss, the muscle loss or the pain?

I know that they are intimately related but which one is the #1 concern?

For the pain, I have found the only way to deal with it (but not cure it by any means) is to submerge myself in water. At home I spend a lot of time in the bath but while on vacation I spend 2-4hrs in the pool. Hot or cold, pool or sea, doesn't matter...I need to keep my body in water...I do not just float but exercise a lot using a Noodle to help me with the exercises. I have found that almost any physical activity outside of the water causes increased pain. 

Even walking or bending so my refuge is water.

Heat and cold alternately help too as well as a Jacuzzi if you can find one.

I try to avoid heavy meds unless I am in a flare (had a major one in Jan-March, was walking with canes)...They put me on tramadol that didn't even touch the pain, codine deadened my brain but didn't help...there is nothing stronger that they give unless I want to get bumbed up to morphine and I refused that.

I do not know what helped the flare but I am not using canes any longer. 

The only way that I can imagine you putting on muscle is either water exercises with floating weights (resistance) or using those electro stimulation machines which do help a lot...they are now rather cheap to buy and are the same quality as the ones used at the  PTs office.

Good luck and let us know how the growth hormone works.

Sharon