Hello everyone. Would you mind giving me your thoughts on my situation? I will try to keep this as brief as possible but also give you guys enough info to give a meaningful opinion. Here is a timeline to make this easier:
Sept 07 - Stopped 6MP after being on it for 6 years. Feeling great. Want to father child though.
April 08 - Wife not pregnant. Not feeling so great. GI says 6MP is ok to take when conceiving, start 6MP again. 100mg. Wish I hadn't quit the 6MP...
May 08 - Acute upper GI bleed. Hemoglobin drops to 9.4. Lose 10 pounds. Now 135 pounds. Blood transfusion, 25mg prednisone and 100mg 6MP.
September 08 - Not feeling too bad, but not great. Maybe I'm getting better....Wife gets pregnant.
Oct 08 - Have weaned off prednisone. Hemoglobin up to 12. Weight down to 130. Lots of stomach gurgling, something going on. Had some diarrhea, couple days laid up on couch. Not feeling so great after 6 months of 6MP, decide to switch to MTX, 25mg.
Nov 08 - Acute upper GI bleed. Hgb drops to 9.4, weight drops to 124. Blood transfusion #2. Stay with MTX, 25mg prednisone. Wish I hadn't quit the 6MP again....
Feb 09 - Weight up to 130 lbs, but Hgb back down, to 8.4 this time. Not an acute bleed (stool is brown), so must be slow bleed somewhere? Stuck on 7 to 10mg prednisone. Heading for blood transfusion #3. Still on MTX.
GI says try either Humira or do surgery. Rationale for surgery is that he thinks a small area is bleeding (I've had a SBFT and MRI of intestine in the past 7 months). Perhaps it's better to just take out the bleeding part rather than throw a bunch of systemic drugs at the body. This flare is 10 months long now and now I'm stuck on pred. If I do have the surgery I would go back on 6MP for maintenance.
Surgery would be of ileum and a strictured part of the descending colon (which he thinks is about
5cm). I'm not sure how much they would take of the ilium, doesn't sound like a lot but who knows once they take a look, right?
Here is one more thing to consider, I don't know if it makes me a better or worse candidate for surgery. I've never had diarrhea, I tend towards constipation but mostly have 1 normal bm/day (unusual, I know). I've never had alot of pain, when I do have pain it is gas pain (don't get me wrong it can be VERY painful and keeps me from sleeping, I look pregnant sometimes) but I've never had much cramping. I guess this is also why the GI thinks we're looking at a small area. My problems have always been weight loss and bleeding until the 6MP got me stable and now again since last April.
The Humira concerns me. Infections, joint pain, extreme fatigue, lupus (temporary/permanent!), MS, psoriasis (this is in my family, Humira is used to treat psoriasis but it also causes it? strange), blood disorders, etc. I know the really bad side effects are "rare" but they don't seem to be too rare on this board or when I look at askapatient.com.
My appt with the surgeon is in one week, Thurs the 19th. I will then decide. I REALLY, really need some input guys, thanks!
32 y/o male. Dx'ed in 1999. No surgeries.
Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).
Tried SCD, didn't work, now avoiding gluten and dairy.
Post Edited (Rider Fan) : 2/19/2009 2:05:32 PM (GMT-7)