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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Surgery Saved My Life

Introduction:

I am 68 years old. I have a permanent ileostomy due to severe UC. I also have a daughter who suffered with UC for 12 years before having a colectomy with j-pouch.

How Colitis Surgery Saved My Life

I suffered with undiagnosed UC for eight years. I had many colonoscopies with biopsies and no diagnosis. In July of 2009 I was misdiagnosed with Crohn’s. My GI put me on Asacol, which caused a reverse reaction and I got much worse. I took 6MP, which did nothing. Took several infusions of Remicade, which helped with the first infusion and then quit working. Did a four day stint in the hospital in November due to dehydration and anemia.

By May of 2010 I was terribly sick, 20-25 diarrhea runs to the bathroom a day, severe blood loss, dehydration and severe pain. I was hospitalized May 7, 2010. Eleven days later I had my colon, rectum and anus removed and a permanent ileostomy. I did not have to make the decision to have surgery, my doctors insisted that it was NECESSARY! My surgeon told me that the inside of my colon was completely gone.

Pathology revealed that it was absolutely UC. However, it also showed that I had Kaposi’s Sarcoma, which is a cancer found in those with severely suppressed immune systems, as AIDS patients. Mine was the result of 6MP and Remicade. Because my lymph nodes were clear and the colon was removed and the cancer had not perforated the colon, I did not have to take chemo or radiation. My surgery was done just in time!

I was down to 98 lbs. after surgery.

Today I am pain free,

back up to my pre-UC weight of 123,

feel wonderful and have my life back!

My daughter has had her j-pouch for eight years and has done wonderfully. She conceived a baby after her surgery. She now has a four year old and will have another little one in May! :) Neither of us would go back to our pre-surgery life, which was NO life! Neither of us was EVER in remission.

The ileostomy required a period of experimenting with various products but now I get seven days wear between changes.

I certainly prefer being a “bag lady” than living with UC!

Colitis Medications Used:

Asacol produced worse symptoms
Prednisone worked but destroyed my bones
6MP did nothing
Remicade only worked for one infusion

written by Louise

submitted in the Colitis Venting Area




surgery

5 Responses to Surgery Saved My Life

  1. Blake January 3, 2012 at 10:34 pm #

    Very good story Louise! I just had my colon removed a month ago and will eventually get the J Pouch. I’m glad the surgery saved your life and you have a good attitude about it, the bag really isn’t that bad when you think about the alternative of death. I hear that most people find it hard to cope with this surgery when they did not elect to do it. I made a choice because I was being urged by my doctor and surgeon and I was really never gonna get better at the rate I was going. I’m glad I did it. I hope you’re enjoying being a grandmother!

    Blake

    • Jeremy W. March 7, 2013 at 1:38 am #

      How is our J pouch working for you now? I’m seeing a surgeon next week to talk about the J pouch surgery for me. I have UC, for two years now. I am 30 years old. I’ve tried a lot of drugs over the last two years and nothing really puts me “in remission” it seems like surgery is the next option.

      • Jeremy W. March 7, 2013 at 1:39 am #

        They are talking about doing the whole surgery in one operation. Sounds risking but my doc is confident. You heard anything about doing this?

  2. yvette moore January 4, 2012 at 12:42 pm #

    just had my surgery last week 3-29-11. Still having lots of pain so for can’t say thinks are just great yet i am can’t take anything medication for pain “Allergies” i know things will be alright….I get my staples out on wednesday 3-11-12. which would be a plus. The J Pouch is great – – – i thought i was going to have the problem with that but no problems.

    Good Luck and God Bless

  3. bbalanzd January 23, 2012 at 2:35 pm #

    Hi Louise,
    Great story! I had my permanent ileostomy just coming up to 1 year ago. At age 49 I had no previous flares with UC but then got hit with a whammy. No choice for me but surgery and I’m OK with that as I have no pain, no meds and full function. Would be interested in knowing what products you use though. I started off with Hollister New Image and was getting 7 days and then after 5 months something changed and I struggled to get 4 days. I have experimented with ConvaTec, Coloplast, and Cymed micro skin. I went back to my original routine with Hollister – convex and adapt paste and am now able to get 5 days but need some mechanical help from the belt or the comfizz underwear. I found that heating up the paste beforehand seemed to make a difference. Any thoughts?

    bbalanzd

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