Posted Today 9:48 AM (GMT -6)
I started Remicade almost 5 weeks ago (17th July). The initial thing that it did for me was slowing down the bleeding I was having, which I was grateful for. However, it has done nothing else, and the bleeding has returned, I noticed it first last Friday and today it was pretty bad. I'm having between 3-10 BMs a day, somethings (rarely) only one, but always loose, watery, urgent. Friday was a particularly bad day, couldn't leave my bathroom and was up & down all night; and these kind of days are becoming more & more frequent. And the pain is getting unbearable right now, I'm constantly in agony and nothing seems to help. I beyond tired & the joint pain is returning, along with many other aches & pains.
Obviously, I know, I'm still new on the Remicade, I'm not ruling it out right now, I will give it a couple more doses to see if it will work - I'm still trying to be hopeful that it will kick in! But I'm starting to think of the "what if" now, as it has given me zero relief this far...
I see my GI on Friday, and I'm going to bring up some things to him; getting a prescription for a mega dose of probiotics; trying a mesalazine enema (the suppositories did nothing, but I've seen many people have good results on the enema so I'm willing to try it too); going on a liquid only/bowel rest diet.
So I just wanted to see if you guys on here have any other ideas of what I could try, so I can bring it up with him on Friday?
My mum asked me a couple of days ago, if I thought he might bring up surgery and how I would feel about that. Truth is, it really scares me and I'd obviously much rather have a functioning colon. At the same time though, I'm only young and I need my life back, this has gone on long enough for me... I don't know if he will, he's never mentioned it before, this was just our thoughts one day. I just feel like it might be getting closer to having to think about it.
Any imput/ideas welcome! Thanks guys!
Female, 25, Ireland
Diagnosed by colonoscopy July '13 (mild symptoms since end '11)
Colonoscopy May '14 - moderate-severe pancolitis
Sigmoidoscopy July '14 - inflammation worsening
Flaring since Dec '13
Current: 3200mg Asacolon; Remicade 17/07/'14
Previous: cortisol enemas, Asacolon supp, Prednisolone (8 weeks), Zoton, Imuran, 6MP (pancreatitis), methotrexate, Humira (7 weeks).