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Crohn's Disease
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Posted 11/11/2012 10:57 PM (GMT 0)
Hi, i was diagnosed with crohn's disease five months ago! since then my consultant has put me on steroids but had to go on my third different type as the first lot werent working. Ive been taking azathioprine for three months now and still dont feel any better. What do you think about azathioprine? My consultant says if i dont get better soon i will have to have my ileum out! Which right now im very tempted as i cant cope with the pain and neither codeine nor tramadol make any diiference! Is this normal? Whats it like after the op? Any help greatly appreciated!
Posted 11/11/2012 11:04 PM (GMT 0)
there is biologics you can try. I mean, you were diagnosed 5 months ago and you already wanna take out parts... It's a bit soon, I think.
Posted 11/12/2012 12:19 AM (GMT 0)
First off, Azathioprine is a very good maintenance drug for Crohn's. The problem is, that it can take up to 6 months to reach it's peak effectiveness.

Also, finding the optimum dosage is also a bit of a challenge. They have to do a metabolite test to find this out, (blood test).

As far as surgery goes, I would recommend that you get further diagnostics done first. Have you had an MRE or Small bowel follow through?

These will tell you how much damage you have in your TI. You can't really make a decision on surgery until you have these tests done.

 

Post Edited (73monte) : 11/11/2012 5:24:25 PM (GMT-7)

Posted 11/12/2012 1:38 AM (GMT 0)
I wasn't a fan of azathioprine - it didn't really get me in remission, even combined with mesalamine. Then it gave me pancreatitis that took several months to clear up (although this is a really rare side effect). I've really loved Remicade; ask your GI about trying biologics first before jumping to surgery. The problem with Crohn's is that it's all throughout the whole digestive tract, not like UC which is just in the large intestine. So surgery might remove things, but it's only a temporary fix sometimes.
Posted 11/12/2012 9:44 AM (GMT 0)
i was on aza when i was first diagnosed think by the time i was diagnosed i was pretty sick,the pain was crippling on the floor in a ball trying not to vomit,i couldnt eat anything going through was extremely painful.i had a resection and where they remove my illium and 40cm of colon and intestine,the recovery was...hard.I had a bag my intestine kept getting blocked so i spent bout 3 days vomiting no stop large amounts of bile until they put a nasal gastric tube in.The surgery was worth it as the pain was gone but i would wait until i was really sick b4 doing it again.Im currently on methotrixate as my gi thought the aza stoped working have terrible side effects on the metho and im wanting to go back onto aza it had been working fine for 5 yrs
Posted 11/12/2012 8:23 PM (GMT 0)
Hi again and thanks for all your responses! my diet is pretty basic, i cant face breakfast any more, my pain seems to be worse first thing so the thought of brekkie makes me feel sick! My lunch consists of a tuna sandwich on white bread as this is the only thing that doesnt make me worse. My tea is very basic chicken and mashed potato. Ive started to have soup to try n get some veg. Its very boring! Life is pretty stressful atm, work full time n moving house! Sounds like i should give aza a bit longer! Im hoping to have another baby sometime in future! Can i stay on aza, if it works? Thanks
Posted 11/13/2012 4:02 AM (GMT 0)
Hi Han. By the time I was diagnosed, I had a lot of scar tissue and medication, including Azathioprine, didn't seem to help. I had a resection and have been on Azathioprine for the last 4+ years and it seems to have kept me in remission. I agree with the recommendations for more diagnostic testing. Have you had a small bowel follow through? If you had a stricture, that would show up on the test. You still wouldn't know if the stricture is due to inflammation or scar tissue, but at least you'd have an idea what things look like.
Posted 11/13/2012 3:20 PM (GMT 0)
Hey Han. Imuran itself almost hospitalized me. It does take 6 months to take effect. 6months and about a week I started to get lung infections, they got so bad that after 3 months o.f anti'. I mean back to back to back of antibiotics. Of which I get uncontrollable d. My dr said you have to stop or you will be poisoned. Funny how some people, no problems, others it's the worst. Plus imuran did nothing for me. I have esoph cd that moves up to my throat and cankers in my mouth everywhere, including my tongue. There is not any med that helps me except 5mg of pred, plus my tincture I use. So I'm in remission, but thru meds only. I'll take it. Because I have no diet restrictions. My issues that I will have the rest of my life are post surgical complications, when you have 9ft of ti and secum valve removed, you will have issues. Mine are bloating really easy,in which Itake 1/2 of 10mg norco, breaks up gas within 5min's. And I start expelling all that gas. I also eat papaya's to rid the odor of gas and bm's. That alone helped change my life. So at least I can go out in public. I'm also on Ssdi. Because of these post op issues. So any of you trying to apply to Ssdi, I was approved in 5 months.
Posted 11/15/2012 3:52 PM (GMT 0)
Hi Han, Imuran gave me liver issues. Methotrexate didn't do much. I would get a second opinion before going the surgery route. Sounds like you have other drugs maybe you could try.
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