What would you suggest in this case?

Hello everyone,

I've found this site while looking for information about mezavan, and I've read interesting questions and answers but I'd like to explain my case here, just in case you see it's different.

My father is the one who's suffering from CU, but he doesn't speak english (also I'm sorry if there's something wrong in what I write here).

He was diagnosed 2 years ago and he was doing just fine with salofalk foam.
However, he had one of the... how's it said? well, the bad episodes this illness has, only he did not now that he should treat that differently and urgently, so he just went to the doctor when we has feeling really ill, months later.

The doctor said the episode was very severe, and first tried to heal it with prednisone.
It helped a bit, but after 6 days the number of stools increased, so he had to add cyclosporine.
It seemed my father was kind of recovering and went back home, but -due to the inmunodepression caused by cyclosporine, probably-, he went back to the hospital only days later, and it was found he had a citomegalovirus (CMV) infection. He was treated with Valcyte, and he kept on with prednisone, cyclosporine and a new added tacrólimus. Again, after some days at home, he had to go back to the hospital and they started with Remicade (added to everything I said before except tacrólimus -he never had that again-). Again, it seemed it worked. At my question about the virus, the doctor said it was gone, since the blood analysis were negative. However, yet again, he had to go back to the hospital (3rd time, he was very depressed and still is...) with some fever, and the doctor was already talking to the surgeon, so we were really frightened at this point, (and we still are, for this was just a week ago).

I insisted about the virus, and the doctor said he would do a biopsy to check if the virus was still in the colon, but he thought it would be negative. A day later, the fever reached 39 ºC (102,2 ºF if my calculation is right), and the doctor decided to give my dad antibiotics. The fever left, and my father started to feel better. The virus test was negative, but they had done the colonoscopy 4 days AFTER he had started with antibiotics, so I suppose it was not very reliable, and then the doctor accepted to give my father his second dose of Remicade (instead of going directly to surgery). A day BEFORE he had the Remicade dose, however, already the stools were without blood and even rather solid. My father at that time was decreasing the dose of prednisone (5mg, just like now), and only had pills for the virus and to counter the effects of prednisone (calcium and septrim), (apart from antibiotics and kilor for his anaemia) and in just 5 days from here he improved a lot. Definitely no blood in his stools, which were about 4 times per day, and mostly solid. They made another colonoscopy and blood analysis and they were very surprised, so surprised that they let him go (this Friday), and programmed for him the next remicade dose, for 20th june.

Now he's at home, and they gave him everything he was having at the hospital except for the antibiotics (he doesn't have them) and the mezavan (he does have them). He started on Friday's evening with mezavan and has had diarrhea ever since. Not a lot, but it's still there and getting worse. He has been thinking and he claims everytime he went home they gave him mezavan but he didn't have that at the hospital. Since he had to go back everytime and mezavan is the only change, he is determined to quit it.

I have read here that it didn't go very well to some of you either.

On Tuesday we're going to the doctor because he needs more valcyte, and we plan to quit mezavan until that day (to see what happens) and ask the doctor about it, maybe suggesting the salofalk, either in pills or enema or whatever (I hope he doesn't get angry).

I'm just saying this here just in case you think it's insane to do that due to the possibility of it being the virus of whatever other reason you may think. I think since mezavan is "just" an anti-inflammatory it shoudn't be so bad if he quits it for a couple of days.

By the way, he started 2 years ago with just 20 cm of colon sick, while now he's treated as suffering "pancolitis". Also, each time that he gets worse his voice weakens a lot, though we don't now if it ¡s due to the anaemia he also gets everytime.

Finally, the doctor also said the diet had nothing to do with it, but my father noticed, for instance, that lettuce and milk didn't suit him very well, and doesn't eat them anymore, he's frightened practically of anything... specially of going back to the hospital and face again the surgery. So, anything about the diet, amount of water or whatever he could do that would help him will also be appreciated :)

Sorry for the long post, I wanted you to now the situation as best as possible to give me your opinion.

EDIT 29/05/2013

The doctor just said "if you think mezavan hurts you, don't have it", but he didn't replace it by anything, even when we asked and insisted twice.

Now it's 4 days without mezavan. During the first 3 days my father was clearly improving, but today he's getting worse, going to the bathroom more times than in previous days.

-Could it be due to Kilor? Would you test it by quitting that as well? How many days? I'm afraid of doing that and let my father exposed or simply weaker.

-Do you think another mezavan-like drug would stop it? He's still not bleeding nor has he fever.

-Do you think the things he eat may have something to do with it? Since we were told he could eat anything, he doesn't pay attention to fats or other hard-to-digest stuff...

I think we should talk to the doctor tomorrow or on Friday at the most, and ask him, but I think he doesn't really know what to try and it should be us who insist in trying things... anyhow I wanted to read your opinions before.

Thank you very much!

Hi there and sorry your father is in this terrible situation...
The Antibiotics could Not have killed the cytomegalovirus as they only work against bacteria, not viruses.
First: if the mezavant is upsetting him then he should quit it. This is my opinion, im not a doctor. But from my experience being on this forum i have noticed that this disease is so individual and everybody reacts differently to drugs. One of the members here went into a full blown flare (when she had only proctitis at first) and the only change was that she went on Lialda. For me, any mesalazine rectal medication makes me bleed or worsens any existing bleeding, so against all my GI orders i decided to avoid it and only then did i start to get better.

Second: it sounds like your father only started to feel better AFTER the antibiotics, or maybe the remicade kicked in. So it's hard to tell whether it was the remicade or the antibiotics. But im mentioning this because there are some people here on this forum who achieved remission after a course of antibiotics. Especially the steroid refractory. How long was your dad on the antibiotics? I hope that they did a proper and full course and not just one or two days?

Keep us updated, hope he continues to get better...

One day without mezavan and still some diarrhea, I suppose is too soon to notice anything...

Also, I've realized my father sniffles a lot... He has always been sniffling since he put a step in the hospital due to this disease... does it mean anything?

The more I read about this disease, the more I see it's basically a trial and error thing, and there are a lot of combinations... for instance the doctor never tried combinning oral pills and enemas, or a lower dose of mezavan, and I've read it's appropiate for mild episodes (or during remission), which is what my father seemed to have after the antibiotics and remicade... You know, I have this feeling that the doctor kind of rushed through the options of the pyramid and we are at the final step when he could have tried something else in the middle (and something safer), for my father didn't bleed so bad the second and third time; now that I've read other cases I think it wasn't so urgent. And he didn't want to try anything else if Remicade fails... do you think I should insist in all this things I have read?

Thank you!

I've updated our state, in case you can give us any more help or suggestions.

Thank you!