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Remicade not helping?

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Ulcerative Colitis
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Posted 6/8/2013 7:55 PM (GMT 0)
Hi everyone, long time reader but first time poster here. I am currently in a one year long flare, and would appreciate some input.

The backstory quickly:
I was diagnosed with UC in 2008, after flaring for about 2 months (diarrhea and small amount of blood). After my colonoscopy I was admitted to the hospital, and managed to get the flare under control with Asacol and Prednisone. While tapering the Prednisone, I started Azathioprin. This put me into what I consider remission; the only symptom was that my BMs could be somewhat loose at times, but no bleeding or urgency.

This lasted until June 2012, when I started bleeding and having diarrhea again. At the time, I was studying abroad, so the situation was somewhat difficult. I continued taking the Asacol and Azathioprin, but with no success. When I came back home, my doctor and I decided to switch the Asacol for Pentasa (since I was passing the whole Asacol pills), and start Remicade.

Monday this week, I had my third Remicade infusion, however I am still having diarrhea (about 10 BMs/day), bleeding and URGENCY. This brings me to my questions (excuse me if it's too graphic):

1) Sometimes when I have a BM, at the end, if I look down between my legs there is what looks like a string of blood hanging from my rectum. It looks like pure blood, but I think that it's mucus mixed with blood. When I wipe, it looks like a small blob of red jelly. Has anyone else experienced this, and is it normal when flaring? This is only my second big flare, and during my first one I never experienced this. Is this indicative of bleeding anywhere particular in the colon? This is probably what bothers me the most with my current flare...

2) As mentioned, I just had my third Remicade infusion, but it doesn't seem like I'm improving at all, which makes me terribly frustrated. How long can it take for the Remicade to kick in?

3) I haven't had a colonoscopy in a while so I'm not sure what the extent of the inflammation is currently. However, since I am having diarrhea, is it safe to assume that it is not only the lower part that is affected?

4) I'm currently not taking any rectal meds. I used to take mesalamine suppositories, but they didn't help much. I'm thinking about asking my doctor for some enemas or foam. I read some good things about Cortifoam; any thoughts on this?
Posted 6/8/2013 8:05 PM (GMT 0)
It can take up to five or even six infusions for some people to see an improvement. There doesn't seem to be any rhyme or reason to it. Some people notice a difference immediately after the first infusion and some it just takes longer. Make sure you are telling your dr. exactly what is going on with your symptoms. Keep thinking positive thoughts.
Posted 6/8/2013 8:23 PM (GMT 0)
I think it took me until my 4th infusion then it was like a light switch went on and I was in Remission for most of 4+ years. I also had to up the dosage to double dosages about 2 yrs into Remicade treatments.

I have recently switched to Humira (which was not working that great for me) and the doctor prescribed Uceris which I've been on for the last 7 days. The Uceris is definitely helping me (not to remission yet but much closer) with much fewer side effects than Predisone.
Posted 6/8/2013 8:54 PM (GMT 0)
Some people don't see improvement for several infusions. It still might work for you.

As for a couple of your questions:

1) This has happened to me with some of my worst flares. It's one of those things that feels like ... completely horrifying.

4) I never used suppositories (LONG STORY), but I did use both mesalamine and hydrocortisone enemas, and Cortifoam. Your doctor might have some ideas about which would be best to prescribe for you.

I'd probably say cortifoam of hydrocortisone enemas. Hydrocortisone helps a LOT with bleeding, and the second flare I had went into complete remission because of hydrocortisone enemas (it was just that last boost I needed for my Asacol to work). The enemas are great--LOTS of medicine, can reach the whole sigmoid colon--but they can be difficult to retain when you have a lot of inflammation. In that case, Cortifoam is nice because you can barely feel it. However, it's not as much medicine and it doesn't reach as far.

I am considering asking my doctor for hydrocortisone enemas, even though he's done a great job respecting my decision NOT to use steroids often. I still have Cortifoam left, but the enemas were always a LOT more helpful for me. I only had Cortifoam instead of enemas because 1) it's so much easier to carry home from the pharmacy, and 2) I was also on mesalamine enemas and you can take Cortifoam AND enemas on the same night.
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