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Around what fraction of ppl with Crohn's disease eventually need an ostomy?

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Posted 7/15/2007 2:47 AM (GMT 0)
I have Crohn's and for 10 years now I've felt completely fine other than some bloody stools and dirarreah.

Is it likely I'll be able to continue on this way until i die of old age or something else, or do most ppl with Crohn's eventually require an ostomy?

Posted 7/15/2007 12:10 PM (GMT 0)
Well I can only account my own story, Diagnosed in 1992 with crohns, like you had bloody stools, cramping eating certain meals, had a re-section surgery in 98, in between taking various meds, Pentasa, Azulfadine, and Prednisone. I took Lomotil for the urgency issues. After my '98 surgery I started getting Remicade Infusions and felt fantasic with a capital F, felt never better actually "crohns free", check ups good, colonoscopies good, until this years memorial day, I discovered I had a fistula going to my female anatomy. At the ER they did a catscan which sadly revealed more that just the fistula, my entire colon was just raging with active disease, none of which I felt. My surgeon gave me 3 options:

J-pouch which in his option highly didnt recommend

temporary ileostomy (letting my colon heal and then be reversed)
OR

Permanent ileostomy ( and his quote "You'll probably never need another Crohn's related surgery again"

I chose the permanent, Colon cancer runs in my family, Diabetes in both grandmothers and now my mom too.
In my option about Crohns, There is such a wide spectrum of what you can expect I really wouldnt be expecting it for yourself, cross that bridge if you have too, Stay on the bright side of it--Be positive
Posted 7/15/2007 8:20 PM (GMT 0)
I have had Crohn's since I've 14. I am now 48. For the last 10 years I had gotten very sick and an ostomy was always a consideration. I did everything to avoid it and had several surgeries for perforations, anal fistulas, abcesses - the whole nine yards. I had accidents, cramps and lots of bleeding. I still did NOT want the surgery though, until after 5 months of what they THOUGHT was a nasty fissure that would not heal (treatments with antibiotics, nitropaste and botox) they did biopsies and I had rectal cancer. By then I was down to 72 pounds and went through radiation and partial chemo. My doctor said he would not give me anymore chemo because I could not afford to lose anymore weight from being sicker and within a couple of days - poof! Had no choice. They removed my anus and rectum too. This was less than 3 months ago. Am I happy? Yes and no. I know it saved my life but it was a hell of a way to say congratu-fricking-lations. They only did a colostomy so I still have some crohn's issues to deal with too.
Posted 7/16/2007 8:49 PM (GMT 0)
if you have not had surgery yet, don't worry about it until you need it.....however, what you can do is stay on top of your disease by following up with your doc regularly.

because, in my opinion, you will be more likely to need a surgery if you ignore your symptoms and your doctor's advice, so keep going to the doc, fight the good fight and worry about what movie comes out next week, not what illness or symptom you may develop or surgery you may need.

life is far too short

if you have a foot in the past, and a foot in the future....you are crapting on today!

there you go, that's my short answer!
Posted 7/16/2007 8:51 PM (GMT 0)
how weird, this page automatically edited out my Sh@tting word and substituted crapting! how weird!
Posted 7/18/2007 10:59 PM (GMT 0)
I went 20 years without needing surgery. My ileum decided to perforate which caused a resection, then I got toxic megacolon causing me to have a temporary ileostomy. I had that reversed 4 weeks ago now.
Posted 7/19/2007 12:20 AM (GMT 0)
I think I would of had one but for the skill of the surgeon who did my operations. He was fresh out from the States to NZ, the other Surgeon who assisted him, another American , told me on his ward round one day he was a slick operator. So even he was impressed with what he did. I feel like I'm on borrowed time though and my life certainly isn't normal with what I daren't eat since my resections.
gemini kiwi
Posted 7/19/2007 4:09 AM (GMT 0)
I don't know the percentage of Crohn's patients, but I did read a while back that in North America one person in 75 has an ostomy.
Posted 7/25/2007 5:34 PM (GMT 0)
I looked it up on Cleveland Clinic's website, and it said that one million people in North America have an ostomy. Then I checked to see what the population of North America is, and it's 335 million. So, it must be around 1 in 335 people in North America have an ostomy. And, it also said that 70,000 new ostomy surgeries are performed each year.

I don't know the percentage of Crohn's patients who end up needing an ostomy, but I did find out that the risk of developing colon cancer in Crohn's patients increases dramatically after having the disease 8-10 years. I had Crohn's for 7 years before having my colon and rectum removed, and that was one of the biggest factors involved in my decision to have surgery.

Hope that helps!
Posted 7/25/2007 9:43 PM (GMT 0)
glad bag, that is odd about the editing, especially since crapting isn't even a word!
Anyway I don't know about chrons either but with UC patients its 40%.
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