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To have my large bowel removed or not....

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Crohn's Disease
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Posted 6/3/2011 6:59 PM (GMT 0)
Hi ... looking to get some feedback from anyone who has had their large bowel removed.... would you do it again? How was the experience... any first hand experience would be hugely appreciated.

I am out of approved medication options in Canada. I am currently enrolled in a drug trial for MLN0002. They tell me (2 different gastros) that my options are the drug trial or removal of my large bowel. i'm 39 and just don't know if I can go the surgery route yet... BUT, if it would help, I may have to strongly consider it. I'm just trying to plan ahead so that if this drug trial doesn't work, I'm not scrambling to do my research and pressured to make a quick decsion....

Feedback? Thoughts? Suggestions? Recommendations?

Posted 6/3/2011 8:09 PM (GMT 0)
Crohn's affects my large bowel (colon aka; crohn's colitis) as well, if it were me I would try any drug under the sun first if I was at risk of losing my colon....I know that for some of with with crohn's colitis it can get bad enough that we have no other choice so I'd leave it as my very last choice...especially since once you get your colon removed, with it being CD it will more than likely at some point start affecting other parts of your GI tract.
Good luck and I hope everything works out for you in your favor (((HUGS)))
Posted 6/3/2011 10:34 PM (GMT 0)
Before going the surgery route, you ought to give the SCD diet a try if all else fails. You wouldn't have anything to lose at that point.
Posted 6/3/2011 11:25 PM (GMT 0)
I did every drug and 3 trial drugs in Canada. Was going for stem cell transplant when they found cancer cells to make me ineligible. Had the surgery. Life has been so much better since.
I don't have to run for bathrooms.
I can go for a run or bike and not stop every two minutes.
I can work again.
My stomach doesn't hurt all the time.
I'm not tired and hurgery all the time.
I don't have big circles under my eyes.
Or have dry,brittle hair.
I am stronger
Remember more
My eyes aren't getting worse by the month
I don't ache in all my joints
I don't have to take pills at all times of the day
Don't wear pampers any more!!
Don't live half my life in a bathroom

OK..I could go on, you get the drift. There are certainly changes that have had to be made. I could get crohn's again. Not trying to look that far ahead. Just enjoying life now. Doing things with my children and grandchildren and friends.

I fought so hard not to get the surgery that I gave away 2 years, when I could have been better. Live and learn. The diet could change your life and you might have your answer. Life changes could be the answer and help you feel better. There are definetly many ways to go. Try ever angle you can. Suffer as long as you need to. Just keep the option open. Read the Ostomy site here. I hung out there for months reading, until my back was against the wall.

It's all perfect for me. But is the best decision I have made about this disease since I got it.

Hope all works out for you.
Posted 6/4/2011 1:59 AM (GMT 0)
I agree with PB4 and Laughing Willow because this DD never seems to stop. I worry if they take my colon and the disease come back either at the anastomosis or elsewhere, then what? I was in a near similar position as you because my doctors were recommending a total colectomy. I started experimenting with organics, diet and supplements to compliment traditional pharmaceuticals and so far I am maintaining. Is your disease spread throughout the colon? If it is in the lower half, have you tried enemas such as Rowasa? Treating from both ends seems to really help when the disease is confined to the last half of the colon. If you are having major bleeding issues, have you tried Bee Propolis or Slippery Elm? Have you tried the SCD? I do SCD when thing get real bad for me but in between, I simply stay away from bread products and only eat organics. I wish you the very best and hope you will find something that helps!
Posted 6/6/2011 3:57 PM (GMT 0)
Thanks for the feedback. I did go look up the SCD Diet and bought the book on the weekend. It seems like alot of work but if it helps, I'm game! I had a horrible Sat and Sunday.... then last night when things settled, I tried a simple menu of legal foods and low and behold, today I feel great AND I've only been to the loo twice so far today, and it's noon! Hmmm.... I'm gonna give it a go.... thanks SO much for that info. I'd not heard about it before......
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