Visit the Microscopic Colitis Foundation Website
Hello,
I thought I was on the full road to recovery. I completed 8 weeks of entocort treatment 3 weeks ago. I felt wonderful! I started having stomach pains and loose stools the first week I was off entocort. I am gluten free, not eating beans either. The last two weeks I have been so sick! I have always hurt on my right side under my ribs, every single time I get sick the pain begins there for about 6 - 12 hours and I have several watery stools. I finally called my dr (his np) today. She was very hesitant to give me entocort again. I begged her, I told her I didn't think I was on it long enough. She is now letting me take it for 12 weeks, but after that no more. She mentioned bentyl??? I did notice today I had almonds--could that bother me? Any advice would be so helpful. I just started a new job, I can't be running to the potty in a panic all the time, or bent over in pain. Today I had lay down on the floor and roll, it was awful.
Thanks!
Bev
Entocort again....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Bev,
I'm so sorry that you are having a flare and in such pain.
Eight weeks is not nearly long enough to be on Entocort and have your gut heal enough to be in remission. I'm glad that your doctor extended your prescription, but it will probably take longer than an additional four weeks, mainly because you are still trying to determine your intolerances. Only a few of us are intolerant to one or two foods. Most of us are intolerant to casein (dairy) in addition to gluten and about half of us are intolerant to soy.
In addition to our food intolerances, we also find it necessary to eliminate "irritants" which would be fine to eat with a healed gut, but irritate an inflamed gut. Irritants include high fiber foods, lettuce, fresh fruits and vegetables (we need them to be soft until we're healed). Nuts generally fall into the irritant category because they are not soft. Perhaps a nut butter would not be as irritating.
You might find it helpful to keep a food-elimination diary so that you can see a relationship between what you eat and the type and frequency of BMs that you have.
Gloria
I'm so sorry that you are having a flare and in such pain.
Eight weeks is not nearly long enough to be on Entocort and have your gut heal enough to be in remission. I'm glad that your doctor extended your prescription, but it will probably take longer than an additional four weeks, mainly because you are still trying to determine your intolerances. Only a few of us are intolerant to one or two foods. Most of us are intolerant to casein (dairy) in addition to gluten and about half of us are intolerant to soy.
In addition to our food intolerances, we also find it necessary to eliminate "irritants" which would be fine to eat with a healed gut, but irritate an inflamed gut. Irritants include high fiber foods, lettuce, fresh fruits and vegetables (we need them to be soft until we're healed). Nuts generally fall into the irritant category because they are not soft. Perhaps a nut butter would not be as irritating.
You might find it helpful to keep a food-elimination diary so that you can see a relationship between what you eat and the type and frequency of BMs that you have.
Gloria
You never know what you can do until you have to do it.
Bev,
I agree with everything that Gloria said. A relapse after 8 weeks of Entocort treatment is ended, is typical, and totally predictable, according to our experience, on this board. I'm not sure that I understand your statement about the length of your current treatment. Is your doctor allowing you to use Entocort for 4 more weeks, or 12 more weeks? If it's only 4 more weeks, you might want to consider immediately ordering an additional supply from one of the reliable offshore suppliers of cheap budesonide, since it can take several weeks for an order to arrive here in the States. The other choice would be to try to locate a doctor with a more realistic approach to treating MC. That can be easier said than done, of course.
Bentyl is pretty much useless for someone with MC - that's an IBS treatment. It will not help to suppress the inflammation that causes MC.
Tex
I agree with everything that Gloria said. A relapse after 8 weeks of Entocort treatment is ended, is typical, and totally predictable, according to our experience, on this board. I'm not sure that I understand your statement about the length of your current treatment. Is your doctor allowing you to use Entocort for 4 more weeks, or 12 more weeks? If it's only 4 more weeks, you might want to consider immediately ordering an additional supply from one of the reliable offshore suppliers of cheap budesonide, since it can take several weeks for an order to arrive here in the States. The other choice would be to try to locate a doctor with a more realistic approach to treating MC. That can be easier said than done, of course.
Bentyl is pretty much useless for someone with MC - that's an IBS treatment. It will not help to suppress the inflammation that causes MC.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Helovesme
12 more weeks
Thank you for the responses. Yes, she said 12 more weeks. 3 capsules..the 2 for 4 weeks, 2 for 4 weeks, 1 for 4 weeks. I am thinking I should take only two...so I can make it last longer...what do you think? I have been taking the entocort again since 6/29--slowly getting better. She was quite stubborn about not wanting me to take this again. I really had to beg her.
Thanks!
Bev
Thanks!
Bev
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Bev, I just went through roughly the same thing this past week. I was put on 8 weeks of Entocort in May, and was tapering down starting last weekend from 9mg to 6mg a day. After day 4, my system went nuts pain, D and no appetite. I was put on Entocort 9mg again for an additional 2 months. Its day 3 of the returned higher dose and things are just settling down.
I can't speak to the taper schedule as of yet, but it seems that must people here do require a number of months on the 9mg dose before starting a slow taper schedule.
As far as taking a lower dose to make it last longer, I would imagine that's up to your systems response to that dose. If tolerated, and it keeps your flare under control that should be fine. But if there are continuing issues you should stick to the higher dose for the prescribed time.
Good luck Bev, I will be following your posts on this as it seems like we are on the same path.
--Joe
I can't speak to the taper schedule as of yet, but it seems that must people here do require a number of months on the 9mg dose before starting a slow taper schedule.
As far as taking a lower dose to make it last longer, I would imagine that's up to your systems response to that dose. If tolerated, and it keeps your flare under control that should be fine. But if there are continuing issues you should stick to the higher dose for the prescribed time.
Good luck Bev, I will be following your posts on this as it seems like we are on the same path.
--Joe
Joe