Visit the Microscopic Colitis Foundation Website
spoke too soon
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
spoke too soon
yesterday I mailed and said I had reduced the endocort a little and was doing fine then yesteday evening out of the blue my nemesis returned, rushed to the bathroom but had an accident none the less, today no D but bad cramping pains and some nausia, I had only reduced my endocort by one tablet every other day for 6 days so it was 9mg one day 6mg the next so I dont think my symptoms are from that, 24 hours before I had a meal of potato and LEEK with a sauce which had a lot of pepper in it (no Gluten) also chicken with soy but I dont think I have problems with soy, so perhaps it was leeks, feel awful, its been SO nice to feel well that I started forgetting to eat a bland diet, depressed and cross with myself and the pains in my gut are telling me off as well, do you think it was the slight reduction in endocort or what I ate, what should I eat now to help things settle,we leave in 2 weeks and I have so much to do in the time I so didnt need to make myself ill again, Beni
Hi Beni - so sorry to hear that the D returned with such a vengeance. I know that for me I can't handle anything in the allium family - onions, garlic, leeks, etc. You may want to try keeping the soy and the allium out for awhile until you're firmly back in the healing zone.
Yes, and the cross with yourself part - I understand that! It just shows us how slowly and cautiously we have to proceed, even if all the outer evidence seems to point to healing. I keep telling myself that the reappearance of Norman doesn't mean I'm in the clear. We'll probably need to stick with bland diets for months until we feel brave enough to try a new food.
Be kind to yourself . . . you didn't make yourself ill. You just triggered a mini flare with something you ate last night.
Hang in there,
Elizabeth
Yes, and the cross with yourself part - I understand that! It just shows us how slowly and cautiously we have to proceed, even if all the outer evidence seems to point to healing. I keep telling myself that the reappearance of Norman doesn't mean I'm in the clear. We'll probably need to stick with bland diets for months until we feel brave enough to try a new food.
Be kind to yourself . . . you didn't make yourself ill. You just triggered a mini flare with something you ate last night.
Hang in there,
Elizabeth
Hi Beni,
Sorry you had a setback. I agree with Elizabeth and Sara. When I was recovering, I had to avoid onions, leeks, etc., and I also had to avoid pepper, (especially black pepper - IOW, pepper made from peppercorns), because it would cause abdominal pain, cramps, etc. Bland food is our friend, until our intestines have had plenty of time to heal.
Almost everyone assumes that once they are in remission, they feel so well that they can be a lot more liberal with their diet, but that's not true, because the damage to the intestines needs to heal, and it can take a long time to heal, (especially when Entocort or prednisone is used, because corticosteroids slow down the healing process). It usually takes over a year for a significant level of healing to occur, and it usually takes at least 2 or 3 years for healing to be complete.
Hopefully, you'll recover quickly, in time to prepare for your trip.
Tex
Sorry you had a setback. I agree with Elizabeth and Sara. When I was recovering, I had to avoid onions, leeks, etc., and I also had to avoid pepper, (especially black pepper - IOW, pepper made from peppercorns), because it would cause abdominal pain, cramps, etc. Bland food is our friend, until our intestines have had plenty of time to heal.
Almost everyone assumes that once they are in remission, they feel so well that they can be a lot more liberal with their diet, but that's not true, because the damage to the intestines needs to heal, and it can take a long time to heal, (especially when Entocort or prednisone is used, because corticosteroids slow down the healing process). It usually takes over a year for a significant level of healing to occur, and it usually takes at least 2 or 3 years for healing to be complete.
Hopefully, you'll recover quickly, in time to prepare for your trip.
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.
I think it's both. You are getting feedback due to the reduction in Entocort. Normally I would say this is a good sign; the dosage of Entocort is reduced enough to educate you on what additional foods are a problem.Beni wrote:do you think it was the slight reduction in endocort or what I ate
I was in the same situation as you last year when I was still taking 3 Entocort a day and was going to be leaving on a one-week trip to Hawaii. I decided to stay on the full dosage and waited to reduce after I returned. That way, I didn't need to be as concerned about any slip-ups or potential accidents. I would recommend that you wait to reduce until you return from your trip. You'll be much more able to deal with the learning process of what's bothering you.
Gloria
You never know what you can do until you have to do it.
spoke too soon
thanks for the advise, you are right I should stay on 9mg till my trip is over but we are away for 7 weeks and then home for 2 then traveling through spain for 3 weeks, none of this can be cancelled unless I was so ill I couldnt, as things stand untill I reduced the dose a little and stupidly ate the wrong things I felt fit enough to go but I have been on this 9mg for months now and am keen to reduce, really dont know what to do,thanks to all who have replied Beni
Beni,
Few things can ruin one's enjoyment of a trip, (and the enjoyment of one's traveling companions), faster than a full flare of microscopic colitis. I believe that if I were in your shoes, at the very least, I would take a good supply of Entocort with me. There are few things more miserable, and more stressful, than having active MC, far from home, with no way to treat it.
Tex
Few things can ruin one's enjoyment of a trip, (and the enjoyment of one's traveling companions), faster than a full flare of microscopic colitis. I believe that if I were in your shoes, at the very least, I would take a good supply of Entocort with me. There are few things more miserable, and more stressful, than having active MC, far from home, with no way to treat it.
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.
Beni,
I have been on Entocort since last March. Started at 9mg, then 6, now have been taking 3mg. per day, I feel with good results. I have not felt any adverse effects from it, if that's your concern. I've tried switching off with Colazal--not good. I did, at one point, stop Entocort too suddenly b/c a prescription ran out and I was away from home; I won't make that mistake again. My doc had a little talk with me the other day about the importance of gradual weaning off. After the holidays I might try that, going to 3mg every other day and then stretching it out.
i agree with Gloria; if I have plans, particularly if they involve plane or long distance car travel, or important events, my personal policy has become not to risk changing anything in advance of it. And, I found I had to really work hard not to let myself get stressed out by the preparations for travel, or by the "what-ifs," knowing that stress is a big trigger for me. Imodium is also my best friend in those situations.
Good luck with your travels!
I have been on Entocort since last March. Started at 9mg, then 6, now have been taking 3mg. per day, I feel with good results. I have not felt any adverse effects from it, if that's your concern. I've tried switching off with Colazal--not good. I did, at one point, stop Entocort too suddenly b/c a prescription ran out and I was away from home; I won't make that mistake again. My doc had a little talk with me the other day about the importance of gradual weaning off. After the holidays I might try that, going to 3mg every other day and then stretching it out.
i agree with Gloria; if I have plans, particularly if they involve plane or long distance car travel, or important events, my personal policy has become not to risk changing anything in advance of it. And, I found I had to really work hard not to let myself get stressed out by the preparations for travel, or by the "what-ifs," knowing that stress is a big trigger for me. Imodium is also my best friend in those situations.
Good luck with your travels!
Suze