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Crohn's Disease
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Posted 4/15/2010 4:41 AM (GMT 0)
Sami's blood work has shown consistent high lipase levels. Her dr said that the 6-MP could be damaging her pancreas. Her dose has now been lowered and hopefully because it is lowered, it doesn't create issues with having another flare up. Anyways, if her next lab work shows no improvement (in a month), they will be taking her off of it and she would then have to take a weekly injection of methotexrate. If she starts having any severe abdominal pain, vomitting, fever, etc before the next lab work, then she will be taken off immediately.

Has anyone had that side effect from 6-MP?

I was really hoping that using it as a maintenance drug since her total colectomy, we wouldn't have any more major issues.
Posted 4/15/2010 6:14 PM (GMT 0)
I'm sorry to say, but yes I have. Initially caused 2 severe attacks of pancreatitis, which left my pancreas damaged,
so I now have chronic pancreatitis.

It's good to know that in your daughters case, they are aware. In mine they were not. Had they've been, I may not
have suffered the damage.

I wish your daughter lots of luck.
Posted 4/16/2010 12:43 PM (GMT 0)
bump
Posted 4/16/2010 1:26 PM (GMT 0)
I'm another one with chronic pancreatitis and I have to say I would prefer the crohn's symptoms. But I was never on 6 mp. A bout of test, ERCP, EDU , and one I cant recall right now, all done at the same time is what caused my pancreas trouble . If I had not been so sick and so far away from where the test were done I would surely have planted a foot where the sun dont shine on the doctor that did this to me. Think thats why they sent me home, 150 miles away while I was still asleep. I am now on Remicade and take methotrexate one time per week. I take the pill form and so far all is well. Doc does blood work monthly and so far so good. Perhaps a change is what is needed for Sami ...Hopes and prayers for you too...
Posted 4/16/2010 3:26 PM (GMT 0)
Thanks for the replies! :-) Sami used to be on Remicade and methotexrate, but because her disease was so far gone, Remicade didn't work and surgery was our only option. She had been on prednisone for over a year too. I *think* that because her disease went undiagnosed for years (starting showing symptoms at 4, diagnosed at 10) is why it was so bad. The orginal diagnosing Dr said, it appears to her, that Sami has had it for quite awhile considering the damage she saw during the scopes. But we had been told by various dr's that it was all in her head.

Sorry I digress. She never had any pancreas issues until her total colectomy and she ended up with pancreatitis. I'm thinking that a combination of that and the meds are damaging the pancreas. I was told by a friend that once you start having pancreas issues, that you will have issues off and on for life. I don't know how true that is.
Posted 4/16/2010 4:37 PM (GMT 0)
In my case I will have problems with my pancreas for the rest of my life, but hope fully Sami will not.
As I said in my last post, the doc/s are aware, so that's a good thing. She can also be given pancreatic
enzymes that would aid the pancreas in digestion, and allow it to rest awhile. I feel for you... Pancreatic
problems are nasty, and as Sniper says out of the two diseases I know which one I handle better, and
that would be Crohns. My pancreatic problems seems out of my hands, as it were...

God Bless.
Posted 4/17/2010 3:52 AM (GMT 0)
I dont know about for life but Doc gave me meds to shut my pancreas down for two years. I took a med called Creon, which is pig pancreas. It gave me the enzymes my body was no longer producing. I took it before each meal and did fine. When they weaned me off the meds and the creon I did very well. Guess the rest did me good.
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