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Ulcerative Colitis
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Posted 7/2/2014 5:20 AM (GMT 0)
I joined these forums earlier this year looking for some info about Remicade. I've since spoken with a few different doctors (my primary GI wanted to send me to someone else for a second opinion) - and they suggested that before I try any of the biologics, that I try a combination of a 6MP drug (mercaptopurine) and apriso while tapering off prednisone.

It was really strange - the week or so after taking the medication, I started noticing encouraging results (eg semi-solid stools, 5-10 daily bathroom trips) - but in the past few weeks everything has been runny/urgent and I find myself going to the bathroom 15-20 times a day again. To make things even more difficult, I've had arguably the worst case of hemorrhoids I've ever had (not even sitz baths really help now) and this morning I've gotten these painful cramps in my leg. I know these meds can take sometimes a couple of months to go into effect and I realize the cramping might be because of lack of potassium/effects of prednisone but it is still pretty frustrating. A little part of me is wondering if my diet can have a severe effect on the flare-up one way or the other - I've never been lactose intolerant or had gluten allergies etc (and don't know if this is really a rabbit hole) but either way I'm not really sure were to start - I've been advised by both doctors to minimize fiber intake, which I have been doing but I'm wondering if that is really helping or not - your thoughts/advice would be appreciated!
Posted 7/2/2014 5:58 AM (GMT 0)
Hey, unfortunately I can't give you any advice on remicade but I was on another biologic called humia. For me, it did not help at all. After two months of injections, I was put on an increased dosage which made me pretty sick. Ended up in the hospital for a week. Anyway, I have a very similar story as you. It seems as I taper of prednisone, I always get worse. about 13-20 loose BM's a day. I have tried all different diets, but the only thing that remotely helps is really just not eating or eating very little. I do not suggest that at all though. Personally, I avoid lactose and sugar where I can but doesn't make much of an improvement.
Posted 7/2/2014 12:32 PM (GMT 0)
I can't have much fiber either. No raw veggies and limited fruit.

Have you ever been put on rectal meds? That may help with the urgency issues you are having.
Posted 7/2/2014 1:10 PM (GMT 0)
Diet can make a difference, but the best diet is just to avoid foods that bother you. Since everyone is different it is left up to you to figure out which ones. Name brand diets often don't work because they are not unique to your particular case. UC damages the colon, which in turn makes certain things harder to digest while it is in a damaged state. What your life was like before UC (IE:allergies) doesn't really matter because a damaged colon can make you lactose intolerant or gluten intolerant, while it is damaged. Once your colon is healed you may be able to eat these things again. But, I don't want to give you the impression that these things are guaranteed. Even when I was at my worst I was not lactose intolerant or gluten intolerant. Another piece of advice I can give you is don't just assume that eating something healthy like fruits and veggies is good for your UC. They could actually be making you worse.
Posted 7/3/2014 4:08 AM (GMT 0)

sherbear46 said...
I can't have much fiber either. No raw veggies and limited fruit.

Have you ever been put on rectal meds? That may help with the urgency issues you are having.

No I've never tried rectal meds - are these taken rectally? I'd be very afraid of that right now as it is super sensitive down there and basically torture every time I have to go :(

As far as veggies go I've found that I can tolerate melons, and steamed (and very soft) carrots but that is about it
Posted 7/3/2014 4:13 AM (GMT 0)

xspartanx said...
Hey, unfortunately I can't give you any advice on remicade but I was on another biologic called humia. For me, it did not help at all. After two months of injections, I was put on an increased dosage which made me pretty sick. Ended up in the hospital for a week. Anyway, I have a very similar story as you. It seems as I taper of prednisone, I always get worse. about 13-20 loose BM's a day. I have tried all different diets, but the only thing that remotely helps is really just not eating or eating very little. I do not suggest that at all though. Personally, I avoid lactose and sugar where I can but doesn't make much of an improvement.

Is humira the biologic that you inject yourself? That was another one they were talking about potentially putting me on.

Earlier this year when it was really bad (before I had to go up to 60mg of pred to stop the unbelievable amount of bloody BMs) I did not eat or ate very little and this provided some temporary relief, but it really catches up to you. :(
Posted 7/3/2014 4:51 AM (GMT 0)

garylouisville said...
Another piece of advice I can give you is don't just assume that eating something healthy like fruits and veggies is good for your UC. They could actually be making you worse.

Thanks - I have fallen in that trap a few times, and I def have watched that more now - but invariably I end up always running into "surprise" foods - something I didn't know would have an effect (for instance when eating out)
Posted 7/3/2014 8:49 AM (GMT 0)
What dose of prednisone are you on and how long have you been taking it? Could the times of improvement be more related to a higher dose of pred than the apriso/6mp? I noticed for myself, 5ASAs worked quickly. 6mp was very slow. I think I would try another 5ASA before giving up on them, some people respond better to one than another, different brands work a little differently. Also, is the inflammation throughout or in a particular area? If it's low down, you definitely need to add rectal meds. Prednisone gave me joint pain but not until I had been on it for a while. Once you're off, things should go back to normal. Too bad you couldn't get uceris instead of prednisone, it has a lot less side effects - it may be an option for helping you to taper off pred... but you will still need something for maintenance.
Posted 7/3/2014 1:13 PM (GMT 0)
I've been on Remi for 3-4 years and still experience flares every year or year and a half. At this point we may switch to entyvio or raise the Remi dose.

Diet definitely contributes to my flare. Through experience I know certain things are going to induce many more bm's the next day. Some things that personally effect me are red wine (I drink white now), more than 3 beers, milk (cheese seems to be okay), soda, salsa, any type of fast food, and some Italian food heavy in tomato sauce.

When I'm suffering a strong flare, I'll drink "ensure" as a meal replacement once a day, then have chicken soup or egg drop wonton for another meal and just pieces of buttered toast as well. Simple things.

Post Edited (Max_Power) : 7/3/2014 7:17:01 AM (GMT-6)

Posted 7/3/2014 3:19 PM (GMT 0)

notsosicklygirl said...
What dose of prednisone are you on and how long have you been taking it? Could the times of improvement be more related to a higher dose of pred than the apriso/6mp? I noticed for myself, 5ASAs worked quickly. 6mp was very slow. I think I would try another 5ASA before giving up on them, some people respond better to one than another, different brands work a little differently. Also, is the inflammation throughout or in a particular area? If it's low down, you definitely need to add rectal meds. Prednisone gave me joint pain but not until I had been on it for a while. Once you're off, things should go back to normal. Too bad you couldn't get uceris instead of prednisone, it has a lot less side effects - it may be an option for helping you to taper off pred... but you will still need something for maintenance.

I've not had much luck with 5ASA meds - when I was first diagnosed with UC I was on Azacol, and I was getting mouth ulcers and really bad stomach pains; doc switched to Lialda and that worked for a while and then for some reason it just stopped working - I've noticed with Apriso (what I'm on now) - it was bad at first but then I nocied I wasn't going to the bathroom as often; however that seems to have ended. I know they are all meslazine but it seems weird they don't all seem to work the same way. Regarding prednisone - at the height I was at 60mg (for about 3 months) and that stopped the really severe stuff (blood, etc) - so I started tapering - I'm currently on 20mg continuing to taper. I've actually not heard of uceris - I think I'll ask my dr about that next week when I see him - thanks!
Posted 7/3/2014 3:21 PM (GMT 0)

Max_Power said...

When I'm suffering a strong flare, I'll drink "ensure" as a meal replacement once a day, then have chicken soup or egg drop wonton for another meal and just pieces of buttered toast as well. Simple things.

I was using carnation instant breakfast as a meal replacement - but I was reading about Ensure and it seems like it is a little better - I'm going to try that out. In addition to chicken soup and toast, white rice works really well for me.
Posted 7/4/2014 3:24 AM (GMT 0)
White rice is also great. Limit it to one ensure a day, I like chocolate. I noticed drinking 2+ a day gave me loose movements and mine are pretty much always formed otherwise.
Posted 8/3/2014 3:31 AM (GMT 0)
I just wanted to write back - after increasing my dose of Mercaptopurine to 125g (and tapering off of prednisione) - I think (hope) I am going into remission, bms aren't exactly back to normal (or baseline as the dr put it) like it was pre-UC but there seems to be much more solid and much less water and I'm going less than 5 times a day and that is a HUGE relief.

The tip about ensure was really helpful as well and I continue to drink that for breakfast
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