Having my colon out...happy stories, anyone??
Tue, April 26, 2011 1:03 PM
Hi all my friends with Crohns,
3 weeks I went in for a routing colonoscopy and fissure repair. When I awoke, I was told I have no healthy colon left nor rectum. I have seen 3 surgeons and they all agree, it is time to take it out. The difficult part for me is that my quality of life has not been bad. I teach school, travel, and generally feel ok. I guess, though in truth, I have had pain, which is why I went in to get the repair.
So, now I am facing an illeostomy. I NEVER thought I would ever hear those words. My doctor said he thought I would have had one at 30 and I a now 43. So, I am lucky. I fell fairly good now, am not working, and am just hanging out before my surgery which is next Friday.
So if there is anyone out there with advice, common experiences, etc. I would love to hear from you. There is no support group here in Fresno, so it is very frustrating!
thanks,
Hilary
Joined Apr 8, 2011
Sat, April 30, 2011 8:53 PM
Reply posted for wildcat.
Thank you for reminding me about that book. I have it and have read it and know him through a family friend. Good Advise.
Joined Apr 8, 2011
Thu, April 28, 2011 2:28 PM
Reply posted for Hilarylev.
There is a great book by former NFL kicker Rolf Benirschke called Great Comebacks. It is the true story of how he survived UC and having an ostomy at age 24 (while in the NFL). There are about 10 other similar stories in the book (including Marvin Bush-President Bush's brother). I think anyone facing this type of surgery should read it. It really goes to show you how having the right attitude helps one to overcome the unimaginable
Joined Jul 6, 2009
Tue, April 26, 2011 9:32 PM
Reply posted for mikebartosch.
Mike, I hope you get this. I would love to talk to you and get more information about the book you are reading etc. Please feel free to email me at hilarylev@gmail.com.
I have been on many meds, but am on none now in preparation for my surgery.
Take care, Hilary
Joined Apr 8, 2011
Tue, April 26, 2011 8:43 PM
Reply posted for Hilarylev.
I am a male UC patient in my mid 50s. By the way, I also live in the Fresno area (only since January of 2010). I am on remicade, mercaptopurine, Lialda and still have to occasionally go back on Prednisone.
The rest of my body is relatively healthy. And I lead a pretty active life. But the doctor is urging me to have an illeostomy. I hate the thought of it. But I am reading a book about it. And there IS a support group in Fresno operated out of St. Agnes hospital. But I have learned that most of the participants are in their 70s and 80s. I am going to attend just to see what it's like.
Let me know if you'd like to chat more about the fears and anxieties associated with the potential of an illeostomy. It concerns me a lot, as well.
Joined Mar 29, 2011
Tue, April 26, 2011 6:33 PM
Reply posted for Hilarylev.
My son was 21 when he got his ileostomy. It was a "temporary" thing to allow his rectum to heal. He had such a poor quality of life leading up to it that we didnt know what to expect. It's been 16 months and he has decided to "do nothing" for another year or so. He has his life back, knows what to expect, and feels at this point he just wants to keep living his life. Now, that to me, says a lot....He will be the first to tell you, you can do anything with a stoma. Attitude means more than anything. Good luck!
Joined Jul 6, 2009
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