I saw my GI today and in the past month I began doing the humira weekly again (I was on it weekly pre op but post op he had me go every other week). I have gained 3 pounds and the joint pain and swelling is almost non existant with exception to some pain around my menstrual cycle. My abdominal pain has decreased greatly as well I informed him I have bad gas cramping and pains mainly in the evening unless I have a BM not too long after eating dinner. If I dont have my BM till the next morning I am very uncomfortable til them. He claimed that it sounds like IBS more than the CD now with my symptoms. I still have D and loose stool but more is partially formed and majority of it sinks in the bowl now rather than being so inpenatrible that even the TP wouldnt get wet till I flushed and I would have a mountain of TP right under me. I now go anywhere from 2 - 7 times a day but I had salad today and have only gone 2 times since then! I had a grapfruit the other day too and that day I only went 1 time after eating it....granted it was one of those I think its gas...oh shoot I crapped myself moments but I went to the loo and finished the BM and that was it for the night.
My doc mentioned bentyl or one of the other meds to help with the cramping I have. I forgot to ask more about that...he re ran my sed rate and CRP so on Wednesday I will call the office for those results and ask about the bentyl then. I take anywhere from 0 - 2 dilaudid a day most days it is 0 or 1 at bedtime for the bad cramping if I didnt have a BM after dinner. I have been off the fentanyl now since 4-4 and initially the D was more than when I was on it but now it is equal or better on most days and I find myself waking up earlier in the day now by an hour or 2. That may have something to do with being able to drive again too plus I think waking up earlier in the day makes my appetite better as far as eating 3 times a day rather than 2.
I was also informed I dont have to go back for 6 months unless problems arise. At the time when I go back we will set up a colonoscopy (back in 12-07 he said since the CD was just in the fistula area I wouldnt need another scope before pregnancy) since I had issues with the CD from late february til march he prefers I get a scope to make sure the CD is being controlled prior to pregnancy. I was off the humira for almost 2 months because of having surgery and then a wound infection.
He said there still isnt as much research on pregnancy with humira as opposed to the research that has been dose with remicade but now humira has been given a class b risk in pregnancy...thats better than imuran, methotrexate etc. It has the same rating as remicade he said nothing really has category A so soon because that means more testing on those who are preganant which takes longer to get those tests in and most meds are not category A anyhow since any med is considered a risk to the unborn child. He initially planned on having me reamin on humira for the 1st 2 trimesters then off for the final however in recent events as far as the dramatic change mu CD has had in just 1 month of every week rather than every other he feels it safer to keep me on humira for the whole pregnancy. When I see him next we are going to discuss humira more as far as pregnancy. I still plan on using my colorectal surgeons wife who is a high risk OBGYN for my OBGYN but I need to make sure she preactices at a certain hospital that my GI refers I use since they have a dept just for those with IBD at the woman and infants hospital here
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987