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Immunosupressents-Thoughts?

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Crohn's Disease
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Posted 4/29/2008 3:05 PM (GMT 0)
Hi,

I had surgery 10 years ago due to fistulas.  Basically was doing great until 3 months ago developed an obstruction.  I was given bowel rest and put on Entocort which has helped.

I saw my doctor yesterday and he wants to do a small bowel x-ray as well as a colonoscopy to see what is really going on inside.  Also wants me off of the Entocort as he said it is not effective for long term use.  He mentioned 6 MP to help either treat my Crohn's or keep in remission.

What are people's thoughts on this?  I worry about supressing my immune system and developing other diseases.  I had a good 10 years without any medication.  Is this extreme or does it make sense?

Thanks for your thoughts.

Lenny

Posted 4/29/2008 4:06 PM (GMT 0)
I think it makes sense. You've been dealing with your disease longer than I have but i'm on 150mg of Imuran and my doc wants me on for at least 5 years, along with my 4000mg of Pentasa as a maintenance dose, to prevent relapse. From what I've read of other's post, what your doc is telling you sounds about right. I also haven't had any side-effects with the Imuran, so that's good.
Posted 4/29/2008 4:06 PM (GMT 0)
i don't think it's extreme. i felt the same way you did when my gi and i talked about it. when i picked up my script back in november i was practically in tears leaving the pharmacy. but overall, it has helped me quite a bit. i used to have pain for hours, sometimes from the evening continuing to the next morning. now i can go a week or so without any pain. still a lot of d but it has helped my 12-15 times a day down to 6-8 times a day. i had a flu shot in the fall, i had a cold in march and one this past month. the second one i could have avoided if i just told my boyfriend to GO HOME! i feel a bit tired but i think that's more so from the disease itself.

good luck in whatever you decide to do!
Posted 4/29/2008 4:53 PM (GMT 0)

Thanks to both for the replies.  I worry about long term implications with not allowing the body to fight off serious issues like cancer.  I read that there is an increase with case of lymphoma for people taking these types of meds.

Ultimately, I do trust my doctor and will more likely than not take his advice.

Posted 4/29/2008 5:19 PM (GMT 0)
i have thought of the long term side effects as well. and it's downright scary when you read these long term effects. keep in mind, the actual chances of us being effected from things like lyphoma are minimal. since i have been taking it and feeling better i don't even worry about what could happen in the long run. but, the choice is yours! take care!
Posted 4/30/2008 12:01 AM (GMT 0)
Hi Leny: You say you've done great without medication until three months ago when you had an obstruction. Obstructions usually occur at the end of a long process that includes repeated episodes of inflammatory activity, coupled with healing that produces scar tissue. It is the inflammation and scar tissue that almost always are responsible for an obstruction. So is it possible that while you "felt" well, inside, over the last decade, the disease was simmering away?

If that is why you have now experienced an obstruction, then you have to decide which is worse -- the potential side-effects (very rare) of taking immno-suppressants, which might slow or stop that inflammatory process, or the likelihood that you are heading towards surgery if you do nothing to get the inflammatory process that caused your obstruction under control.
Posted 4/30/2008 12:33 AM (GMT 0)
If you're not comfortable then I'd seek a second or third opinion on this.

:)
Posted 4/30/2008 2:07 AM (GMT 0)

Hi!  I am on long-term immunosuppressants for auto-immune hepatitis (I also have crohn's, but only need asacol for that)  At first I was scared of every germ, but now I just wash my hands during the day, and I am much less obsessed with infections.  I have even gotten two colds without dire results!!!!!!  You should take the treatments, as an obstruction is a sign of on-going inflammation, so this has to be stopped.  Good luck!

Posted 4/30/2008 3:31 AM (GMT 0)
Great points! Thank you to all. Yes, I guess there was activity inside my body and I didn't even realize it. I guess going 10 years is pretty good, but I must realize that this is a long battle that I should tackle head on.
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