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J Pouch Surgery at the Cleveland Clinic Questions

Chandler was diagnosed with UC and Celiac in 2012.

He was started on Asacol and 6mp along with Prednisone. He became very ill and was hospitalized in a local hospital. The hospital could not fix meals for him that were not cross contaminated with Gluten which made him sicker, so his mother and I would cook his food and bring it to the hospital . My wife tried to tell the GI Doctor that the 6MP and Asacol were causing the Pancreatitis.

It was decided that Chandler was too complicated and we were sent to Cincinnati Children’s Hospital. We spent 2 weeks at Cincinnati Children’s hospital and all we came away with other than a bill is what we already knew and what my wife had explained to the Doctors from the beginning, that Chandler has Celiac Ulcerative Colitis and is dangerously allergic to 6mp and Asacol.

Remicade was tried and showed no promise so Humira was tried. Chandler reacted to the Humira so treatment with it was halted.

Chandler maintains his symptoms with low dosage of Prednisone {5mg or less per day} and 3-4 Imodium. He has good days and bad days. A good day for him is no accidents and under 10 trips to the bath room. I won’t describe the bad days. Chandler is tired most of the time. He takes a regiment of vitamins and his diet is controlled and healthy. Chandler is frustrated to say the least and has told us that he is ready to get his life back. We have met a few people who have successfully went through the J Pouch surgery and now We are scheduling a consult at Cleveland Clinic but today we found out the Doctor that we selected is no longer there. With Dr Remzi no longer there we are looking for recommendations for another surgeon at Cleveland Clinic.

Can anyone give us some insight based on previous experiences?

written by “Dad”




j-pouch

3 Responses to J Pouch Surgery at the Cleveland Clinic Questions

  1. Lucy August 21, 2016 at 7:41 am #

    I had a total colectomy 2years ago. I don’t have a pouch. They were able to connect my small intestine to my bum. But I did go to Cleveland clinic for a second opinion. In my case it was a big waste of time and expense. They were not encouraging in my case to get the colectomy. What this doctor did was set up a regimen I should be doing. What she basically did was tweak what was my then regimen which was so minor it was basically doing nothing. But she acted so very sure of herself. When I got to my home Doctor he looked at her recommendations and said but you are already doing that. Just go ahead with the surgery. Which I did. Best decision ever. That is not to say however that you have to go into such a drastic operation knowing you are majorly altering your body and every action has a reaction or consequence. I now go to the bathroom 10-20 times a day. It is easy and effortless and There is no pain. But I have nutritional deficiencies and anemia now which needs to be monitored. Just become as versed as you can and then make your best decision and find a doctor to carry out what you know as true to be right for yourself. Good luck to you.

  2. Mike from Ohio
    Mike August 24, 2016 at 12:13 pm #

    I had the J Pouch Surgery 3 years ago at the Cleveland Clinic and had Dr. Stocchi as my surgeon. He did a great job and for three years now things have been good. I tried all the medications you listed before the surgery and I am now medication free and only go to the bathroom a few times a day and maybe once at night as long as I follow a god diet plan. I have no regrets and acually go back in October to have a routine scope done just to make sure everything looks good inside the pouch. I have no problem recommending the surgery.

  3. Son August 30, 2016 at 4:46 am #

    Hi Dad,
    Before you choose a surgical operation I would highly recommend to try pollen named Qing DAI combined with 5ASA really does wonders and managed to improve their huge high percentages, including in the event that needed surgery. There are also two studies:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645393/
    https://www.karger.com/Article/Pdf/444217

    For me personally it was very helpful, when no other remedy I tried not help.
    You can get the stuff at cheap prices through a Ali Express ( type qing dai or indigo naturalis).

    Good luck!

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