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C3Life Blog: Coping with the return to IBD medicine after surgery

April 10, 2012

Last week I wrote about my recent diagnosis of autoimmune-associated pouchitis. For those unfamiliar with this diagnosis, I suggest reading that blog first before this one. Basically, I’ve had chronic pouchitis (an infection of my J-pouch that causes symptoms similar to inflammatory bowel disease) for months, and am now treating it with IBD medicine.

People with Crohn’s disease often continue taking IBD meds after their colectomy: even if their disease was primarily in their colon, it can appear elsewhere in the digestive tract. IBD meds are necessary to keep the disease in remission.

However, people with ulcerative colitis often don’t need to take IBD meds after their colectomy. Ulcerative colitis only happens in the colon, and if the colon is removed, the disease is removed along with it. Thus, IBD meds are not necessary.

And yet, I was diagnosed with ulcerative colitis—not Crohn’s disease—and I am back on IBD meds, even though my colon is missing.

Several people have asked me how I feel about this. In this entry I hope to provide some perspective on coping with such an unexpected diagnosis.

Read more

Keep fighting,
~Dennis

2 comments

  1. I’ve seen your youtube videos and it’s almost like I see myself in them. The main difference is I’ve had my pouch since 2001. There are many things that I learned in that time but the main thing is watch what you eat. We are no longer the same person and our bodies are trying to adjust. The small bowl isn’t meant to hold waste or function like a colon. You need to make sure you give your bowl the proper food that helps it deal with this adjustment, and I’m not talking about bland food. The main thing I would suggest is you get as much information as you can about food and how it effects the body. There are many books out there about this topic and they all offer a wealth of information on how to heal the body with diet. And it is possible to correct auto-immune disorders with the food you put into your body. I would also suggest looking into meditation and yoga to relieve stress. I’m not against medication but I feel it is only a tool to get things under control, you can’t live on medication, and continue to poison yourself with bad food and pills, the disease will simply adjust to the meds comeback stronger. You have to change your lifestyle, your way of eating and looking at food, make sure its natural, organic, not processed. And don’t just blindly try food and see how you feel after, research what it does and how it will effect the body before you ingest it. Finally, make a weekly menu for yourself and try to have 5 to 6 meals a day. I wish you the best of luck!


  2. I myself had my colon removed, and now I have developed proctitis. I was told having my colon removed would eliminate my colitis, but that did not happen. I was not aware that a very little part of my colon was still left inside me which is what is inflamed. I have a Jpouch and even if I had a external bag, that small piece would still be inside of me just tied off. My Dr said that it would never have been removed due to the difficult area it is in. I am pretty disappointed right now, I hope one day it will go into remission, but I really am not sure if it ever will. Don’t get me wrong, my quality of life is way better than it ever was, so don’t let me discourage anyone from surgery. I just needed to vent, it sometimes makes me feel better.



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