Thread: Crohn's Disease
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Old 07-13-2011, 02:39 AM
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lefthanded lefthanded is offline
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Location: Seattle area
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lefthanded lefthanded is offline
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lefthanded's Avatar
 
Join Date: Apr 2008
Location: Seattle area
Posts: 695
15 yr Member
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Are you in Washington State or Washington D.C.? I live in WA State and I am a medical marijuana user. My gastroenterologist is my recommending doctor. MMJ has been legal in WA since 1998. Of course, that does not mean it is a simple matter to obtain your meds, and lately everyone everywhere has been going bonkers over the Feds.

I developed Crohn's after having my entire colon and rectum removed and my J-pouch constructed. My takedown was postponed about 6 months while I underwent three Remicade infusions, which worked to close some fistuals developing in my new ileal pouch! I now have a working j-pouch, but I suffer spasms of the inner sphincter, and fissures. I have also developed inflammation of the spine, which my neurologist is calling transverse myelitis. And if that were not enough, I have episcleritis (inflammation of the outer layer of the eye) and other eye issues. Arg-g-g-g-h!

Life couldn't be more fun (sarcasm) and I have days I wish my body would stop this war with itself. I take Pentasa, but have tapered to only 1000mg/day (down from 4000), loperamide, norco (pain), ativan (pain and spasms) and I use an ointment compounded of lidocaine and diltiazem when I manually dilate my stricture. I also use two or three different probiotic products, including VSL-#3.

Over the last 8-9 years I have found that I have to eliminate things from my diet that never caused me problems before: chocolate (irritates the bum), whole grains, foods with lots of residue or fiber, berries with tiny seeds, nuts, raw veggies, and foods with whole spices in them. I do eat a rotating diet of poultry, fish, red meat (including bison) and pasta. All my veggies have to be well steamed. I don't drink alcohol, and rarely drink soda. Right now I am even on more restrictive a diet as I am babying two hernias, trying to put off what will be a very touchy surgery, due to the immense build-up of scar tissue and adhesions in my gut.

Many of the meds I have been prescribed you can take away . . . but don't touch my medical marijuana. It works without fail to, at the very least, relax me. And since so much of what I suffer is spasm related, that is important!

I wish you well. If you can learn to manage your Crohn's, and to listen to your body and not to the tons of advice others will have for you based on their own experience, or their cousin's, or best friend's, you will be better off.
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