Had surgery in April of 09 and don't want another. Help!
Mon, May 10, 2010 6:07 PM
I had no clue I had Crohn's until last March. My abdomen became extremely painful and swollen, to the point where I ended up in the emergency room. Follow up with my primary resulted in a referral to my current GI doctor (who has Crohn's) to get checked out.
He confirmed the Crohn's, an advanced case. Over the course of the next month, I took massive Prednisone, along with Lialda, then Pentasa. At some point after I started taking Pentasa, I thought things were improving. But on April 6th, the pain was so bad I ended up back in the emergency room and was admitted. They put me on IV steroids and other things for 4 days with no improvement. April 11th I had a small bowel resection removing the last 14" of my small intestine. One week later, the resection failed. An emergency illeostomy was done. I died on the operating table temporarily, spent 2 days in intensive care, followed by 3 weeks hospital recovery. I went home for a few weeks and was readmitted for extreme dehydration, down to 107 lbs. from 187. I had an illeostomy reversal October 21st, which went perfectly. Started on Humira in late January.
10 days ago, I had another flare severe enough to put me back in the emergency room. I immediately went to a liquid diet and saw my doctor last Thursday. He showed immediate concern when I told him what was going on and put me back on Prednisone. I have an appointment to see him Thursday. I have been on soft foods since the flare started. Still not flare free yet but much better.
Gonna do another scope and discuss options. I want to make sure all medicine combinations are exhausted before I even consider another surgery because my entire small intestine will most likely be removed. He is talking about bumping my Humira injections to once a week. Also pondering switching me to Remicade infusions.
Any and all feedback would be a great help. Thanks.
Joined Mar 21, 2009
Sat, May 29, 2010 10:38 PM
Reply posted for LordWard.
Dear LordWard,
I am sharing my testimony in hopes that it will help your situation.
Char
My 20-year old (at the time) stepson was diagnosed with Ulcerative Colitis in 2007. After months of different medical treatments, and little if any relief, in August 2008, he was admitted to the hospital with what the doctors described as being among the top 5% of worst cases they had ever seen. After 3 weeks in the hospital, and on the brink of death, the only two options he was given by the doctors were Remicade or proctocolectomy (removal of the colon and rectum).
After being told repeatedly by doctors that diet has no effect whatsoever on UC (a part of the digestive system, nonetheless), my husband refused to accept that claim and finally found a way to get his son healed without medication or surgery.
The book is "Self Healing Colitis & Crohn's"
Do a Google search, you will see the colitis-crohn's website, go there and read to your heart's relief!
We spent the next 2 weeks weaning my step-son off of the medications and drips (he had to hide his medications at times because the doctors refused to work with him in this regimen). He followed the proposed regimen of this system and at the end of those two weeks, he was finally released from his 5-week stay in the hospital when his visits to the bathroom went from 20 per day to 2 per day!!!!
One week later, and on zero medications, the results of his next rectal scope showed that his colon had completely healed other than one polyp which showed a brand new surface coming up behind it.
Unfortunately, my stepson has since come away from the diet because he does not like fruit and vegetables. He has thus, unfortunately, had a number of hospital visits since, numerous temporary relief medications and is presently awaiting the start of the Remicade regimen in spite of the horrendous side effects.
Joined May 20, 2010
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