back from the gi ...

i was written a script for 6mp and sent off to have blood work done. should have blood work back in about a week to make sure i can go on 6mp. he also ordered an endoscopy and that will be done on thurdsay. he wants to make sure i am not having pain from something else going on in my belly. my next follow up is on dec 7th. if the 6mp does not kick in over the next few months i will be talking to a surgeon. at this point i don't care what i have to do to have one freakin pain free day. and i told him that! he thinks i am too young to start with the surgeries because it can come back at any time. but he told me i will need surgery, he wants to prolong the time before i do have to have a resection. i don't understand that. he even said, "you will probably feel a whole lot better after surgery". and that made me feel SO much better about trying a new med that is going to take months to kick in. he was pressing on my belly and said he can feel the thickened part of my ileum. what does that mean? that all the steroids i have been on haven't made a lick of difference? i am so not trying to be negative right now. anyone got some positive 6mp stories they want to share?

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I understand your frustration, but I also can appreciate your physician's point of view. Sure you will probably feel better after your surgery and hopefully you will have many, many painfree years, but ... what if you, like me, suffer a full relapse less than six weeks after your resection? We know the crohn's is going to come back and it can happen that quickly. So your GI would not be doing his/her job if he didn't try to manage your disease medically for as long as possible and if 6-MP can open up the diseased segment of your bowel and get the inflammation under control you will likely gain at least another couple of years before having to undergo the knife.

Ultimately, whether or not to take a surgical route is going to be your decision. If you are determined, you can ask your GI for a referral to a surgeon, and it will be arranged. But you have a lot of life left and you don't want to run out of life before you run out of bowel -- that's what your GI is concerned about and he is following best practice in doing so. Maybe you will decide that the best standard of practice isn't working for you, and that's ok. Only we ultimately know how much we can tolerate. So if you have really decided that enough is enough, then communicate that and ask for a referral.

But you may find, if you are prepared to give the 6-MP a few months to work, that things will settle down and be at least tolerable.

stephanie....on the postive side, your doc is considering all options for your care. I had surgery right away, but not by choice...that was followed by years of limited to no care. I was lucky. They are finding more and more now that surgery is not likely the best first plan of attack. I was lucky that they "got all" of the infected area in the surgery and that I did not get another affected area for a long time. Now I am in the same boat as far as meds 6mp/Imuran is next for me...see my GI 11/8 to finally surrender to the "big meds".

Waiting is hard, but if the meds work and surgery is postponed for a long time wouldn't that be good too!
Best of luck!

There seems to be two schools of thought: early surgery improves quality of life and USUALLY delays recurrence, start on 6MP or Imuran IMMEDIATELY after surgery - the other school of thought being saving as much bowel for as long as possible. After all we don't have an infinite amount of bowel to play around with.

They are trying, at least in Europe, to determine and catergorize different subsets of Crohn's disease: stricturing, fistulizing, etc. and relating that to the best surgical candidates for long term remission and those who most need to hold on to as much bowel for as long as they can.

I'm thinking it was PB4 who has posted some links to articles about this categorizing of Crohn's disease.

And, by the way, I've had wonderful results w/6MP's "sister" product, Imuran, for 9 years now. Its kept me in symptomatic remission and/or full remission all that while so far. knock, Knock, KNOCK!!!

Stephanie,

You and I often seem to have similar things going on. I saw the GI today too. Had a long talk about Remicade vs. 6 MP. Started 6 MP today. (Did bloodwork but he told me to start anyway...interesting that you have to "wait" for your results first.)

I'm not having as much pain as you are -- so surgery is still not being discussed in the short term. But, I am having trouble getting out of this "flare" (D, C, mild to moderate pain, bloating, etc.) and much to my dismay, am sticking to the current 20 mg dose of steroids. His plan is to wait two months and then consider Remicade which sort of surprised me since I thought you had to be much "sicker" to consider Remicade. He said that more and more doctors are going to Remicade before 6MP now, and using it as an early treatment, but he still wants to be conservative, which is fine with me.

Good luck with all your decisions -- I truly hope you feel better soon,

Jeanne