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This is my mystery with no reason I can figure out....
Two weeks ago I was starting to get really constipated... so... DUH.. I stopped the entocort... one pill a day was what I had taken for over a year.
Most of you know I didn't go with diet for maintenance of CC.. I went with entocort 6 years ago. Although I was careful about what I ate at first.. limited dairy, soy, gluten. Over time I was less observant about what I ate.. just not too much of anything that was questionable, diet wise.
Over the past two weeks I have indulged in my seasonal addiction of egg nog. Not just any egg nog... but one from a dairy .. I have gone through a gallon of the stuff. Every other year.. I would pay for the egg nog by living in the bathroom for a day or two after a few glasses. This year nothing.. Same with other previous forbidden items..like donuts.
To ease the constipation I have gone on a ... eat everything you shouldn't binge... back to Norman... and no D problems.
This could all be a fluke and probably is... but I do wonder if the fact that I have taken the entocort for 6 years and ate whatever I wanted had anything to do with this.. did I build up some kind of immunity to the forbidden foods? Who knows!
I went the entocort route since I am old and didn't want to live on a limited diet at my age.. not to mention the cost now that we are both on Social Security.
Maybe I will jinx my new condition by writing about it.. but it sure is baffling..
grannyh
Norman and I stopped entocort what happened?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
GrannyH,
Well Congratulations! You are living what most of us can only dream about - remission with no strings attached.
It's certainly not impossible that your genes may have changed, or it may just be an episode of spontaneous remission.
After all, your genes changed before you first developed the disease. How long will it last? Who knows? Hopefully forever, but as we know, with this disease, we should never look a gift horse in the mouth, so enjoy it, and never look back. Eat, drink, and be merry.
Please keep us updated, and if/when the status should change, please let us know, since you are now the sole participant in an extremely interesting experiment.
Best of luck to you on this new phase of your life.
Tex
Well Congratulations! You are living what most of us can only dream about - remission with no strings attached.
It's certainly not impossible that your genes may have changed, or it may just be an episode of spontaneous remission.
After all, your genes changed before you first developed the disease. How long will it last? Who knows? Hopefully forever, but as we know, with this disease, we should never look a gift horse in the mouth, so enjoy it, and never look back. Eat, drink, and be merry.Please keep us updated, and if/when the status should change, please let us know, since you are now the sole participant in an extremely interesting experiment.
Best of luck to you on this new phase of your life.
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.
Yay Grannyh! I'm doing a happy dance for you! Wow, I hope this is permanent for you and what it could possibly mean for all of us. You've been an inspiration to me on this board and have helped me get through some rough places. Enjoy the remission! Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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Linda in BC
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Granny, that is exciting news! Wouldn't it be wonderful if being on Entocort for 6 years could bring us remission! I am a little bit like you in that, since I've been on Entocort, I can get away with a small amount of what is on my no-no list and all I notice is a softening of things the next day, so that I know I have eaten something I shouldn't but I don't go into a flare and things straighten up the following day. I don't mess with gluten or dairy though. But, for example, last night my DH made an excellent curry chicken casserole, and he put a few peas in it. I ate it, saying "Well, lets see if I can eat peas yet", (because since I started the Entocort my ability to eat veggies has increased) but I could tell a difference this morning. My reaction to peas is not a " veggie/ fibre" problem, I am afraid. I think it is an actual legume intolerance. Anyhow, your experience makes me hopeful that if I am on Entocort long enough, my gut could really heal enough to be able to, as you say, eat a small amount of a few intolerances occasionally. I figure since I was able to drop down to one Entocort per day right away (within a week) I will be able to sustain the one a day for longer with no side effects than if I had had to take 9 mg. for a long while.
I hope you will be able to enjoy the holiday season imbibing in your (and my) favourite... eggnog (from a dairy!!even more mmmmmm!
)
Linda
I hope you will be able to enjoy the holiday season imbibing in your (and my) favourite... eggnog (from a dairy!!even more mmmmmm!
)Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Hi Grannyh,
What amazing news!!!!! I'm soooo happy for you and hope it lasts. I wouldn't worry about having jinxed yourself, since you can go back on the medication that you know works any time you have to. Lots of luck - keeping my fingers crossed for you :).
Love,
Kari
What amazing news!!!!! I'm soooo happy for you and hope it lasts. I wouldn't worry about having jinxed yourself, since you can go back on the medication that you know works any time you have to. Lots of luck - keeping my fingers crossed for you :).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I did ask the GI doctor several years ago if one went off entocort for any length of time.. in a remission.. if it would work the second time around.. he didn't know.. Hubby and I both need to go back to him soon.. will see if he has anything new about that.. since it has been two years since last visit.
grannyh
grannyh
I went into remission too and then....
Great story, and I went into remission using Entocort as well .....was in remission for 4 years until May, when the D came back slowly. The issue grew into a full fledged flare, and I am now fighting for my life again. I weighed 118 and now down to 108. I am so depressed as I thought I had this MC conquered.
Now back on Entocort, and I have to buy it in Canada, due to the outrageous price. I had some bllod test that was sent to Prometeous Labs and it came back as positive for Ulcerative colitis? Weird, don't know if this happens with MC or not. Scheduled for colonoscopy on Dec 20.
Also, there are other items I can't eat now, like potatoes, well really, the only things I can eat are ham, yam, fish, shrimp, and vegetables. No salad either. This disease is so depressing.
The only thing I hang onto, is that I went into remission before, and I am determined to do it again. I wish I had more energy.
Karen
Now back on Entocort, and I have to buy it in Canada, due to the outrageous price. I had some bllod test that was sent to Prometeous Labs and it came back as positive for Ulcerative colitis? Weird, don't know if this happens with MC or not. Scheduled for colonoscopy on Dec 20.
Also, there are other items I can't eat now, like potatoes, well really, the only things I can eat are ham, yam, fish, shrimp, and vegetables. No salad either. This disease is so depressing.
The only thing I hang onto, is that I went into remission before, and I am determined to do it again. I wish I had more energy.
Karen
I was on Entocort for a year, maybe a little longer, and like you, after a while,was only taking one pill a day. I went into remission just like you and I could eat all my favorite things again/ I had to be careful though, you do not want to over-do-it. I would eat a pizza once but not do it again the next day, ya' know what I mean.
Yep, no Entocort and 4 years in remission, now sick again. Taking 3 Entocort a day, but colon feels raw. I just asked for some Pred to take with it for a while, until the inflammation settles down.
I know what caused it. I have High blood pressure and the Dr put me on a drug called HCT (hydroclorothyazide). I took 1/2 (one-half) a pill, and the D started all
over again.
The good news is that I am determined to go into remission again. I know the key is to avoid offending foods and drugs, and take Entocort, until you find out, like yourself, it's ok to eat again. I am so happy for you.
Karen
Yep, no Entocort and 4 years in remission, now sick again. Taking 3 Entocort a day, but colon feels raw. I just asked for some Pred to take with it for a while, until the inflammation settles down.
I know what caused it. I have High blood pressure and the Dr put me on a drug called HCT (hydroclorothyazide). I took 1/2 (one-half) a pill, and the D started all
over again.
The good news is that I am determined to go into remission again. I know the key is to avoid offending foods and drugs, and take Entocort, until you find out, like yourself, it's ok to eat again. I am so happy for you.
Karen
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Linda in BC
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- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia