Christmas worked out great for us. Our Christmas eve dinner at home was duck turkey, my grandmother's Canadian meat stuffing, a mix of winter squash and sweet potato, and cranberry sauce yum. The leftovers were great for a Christmas picnic. We brought our own food and made the rounds, visiting relatives in Massachusetts. It all turned out well. A friend invited us to dinner last night and served a boiled dinner - corned beef, cabbage, carrots, potatoes. All went well.
I'm on course to complete four weeks on 2 mg of Entocort on 12/31/13. Even with the small reduction from 3 mg to
2 mg, I had to alter my diet a little bit and then work back up and I did have some withdrawal discomfort.
I finished making twenty eight 1.5 mg Entocort capsules, which I will begin using on 1/1/14. The 1.5 mg capsules are the easiest dose to make because you are simply pouring 1 Entocort 3 mg capsule divided into two clear capsules. With this dose, I don't need my hubby's help to pour them evenly. I can manipulate the 3 mg capsule and the two clear capsules alone. As I mentioned earlier, an entire set-up for filling capsules can be purchased in health food stores or on line for around $20. I don't have one so I can't provide details.
I will decide after seeing my results on 1.5 mg of Entocort if I should reduce to 1 mg after 28 days.
My current Entocort story:
9 mg for 2 months
6 mg for 2 months
3 mg for 2 months
2 mg for 28 days
1.5 mg for a likely minimum of 28 days (length of time to be determined by results)
Weaning off Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Marie, thanks for your kind words. I decided to wean slowly from Entocort after hearing stories of people with MC who come off too quickly and face difficulties with returning D. Some people go from 3 mg daily to 3 mg every other day. I don't feel that I would tolerate every other day dosing well. When I reduce Entocort, I feel stress more easily and have some body pain for a period of time then I level off and I'm fine. I think that every other day dosing could be a roller coaster ride for me so I chose to make partial doses myself. It's going well so far.
Happy 2014 to you too.
DJ
Happy 2014 to you too.
DJ
Surviving the holidays without getting sick is a major accomplishment. 
That sounds like a good, well-organized plan, and it should work out well.
Tex
That sounds like a good, well-organized plan, and it should work out well.
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.
tex wrote:Surviving the holidays without getting sick is a major accomplishment.
Tex
Hi Tex, Figuring out how to be out and about is a major accomplishment for all of us for sure! It requires creating a "new normal" and that takes time and planning. I guess we are all working on the same goal. One of my goals is to reinstitute the family picnic. I'm going retro.
Thank you for helping me through 2013 and for giving me hope for a better 2014
(I would have sent you the larger Emoticon bouquet but it was out of my price range) 
That's definitely an admirable goal. Civilization lost a lot when it evolved away from the family picnic, IMO. It may just be coincidence, but it appears that the trend closely coincided with the initiation of a long and persistent decay in moral and ethical values, and personal integrity in general. Without family values, we have few meaningful guidelines to rely upon, and there is no better place to learn family values than on family picnics, and camping trips, IMO.DJ wrote:One of my goals is to reinstitute the family picnic. I'm going retro.
As always, you're most welcome, and I hope that 2014 will usher in better times and improved health for all of us. I hear you on the cost of extravagant emoticons, but not to worry — I grew up before the world became so commercialized, and consumer-oriented, so I still realize that it's the thought that counts.
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.
Eight days at 1.5 mg and things are surprisingly stable. I'm moderately increasing my fruits and veggies on some days but not every day without difficulty. I have been eating bananas for a while now and I've increased from 1/2 to 1 at a time. I ate most of a large, peeled over-ripe pear without much problem and I've eaten slices of raw tomatoes, one tender lettuce leaf at a time, and a bit of diced onions without much problem. Beyond that, I'm increasing well cooked veggie portions a little at a time. I'm finding food alternatives and maintaining strict elimination of the foods I'm sensitive to. I'll likely step up my slow weaning process.
Now it's time for me to address getting away from working on the road and traveling for a week at a time without notice. It's so difficult to eat safely without planning time and with the possiblility of having a hotel room without a kitchenette. I will look for a transfer of duties.
I will see my gastro tomorrow after not seeing her since September.
Now it's time for me to address getting away from working on the road and traveling for a week at a time without notice. It's so difficult to eat safely without planning time and with the possiblility of having a hotel room without a kitchenette. I will look for a transfer of duties.
I will see my gastro tomorrow after not seeing her since September.
If you can eat a raw leaf of iceberg lettuce without a reaction, your healing is progressing well. It took me several years after reaching remission before I got up the nerve to try lettuce again.
Tex
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.
Yes Tex, In my case, "slow and steady wins the race" - I hope! I started putting small amounts of well-cooked kale in my soups too. Earlier on, I tried a fork-full of my husband's well-cooked kale dish with poor results so this must be progress. The foods I now eat are entirely different than what I ate prior to MC and I will try to begin modifying my high calorie diet. I'm getting fat and I come from a long line of diabetics. I need to get a grip or I'll join the ranks.
It must be difficult for people in the extreme D and weight loss phase to hear that I'm getting fat so let me add that I've worn five different sizes of clothes in one year! Prior to the Great Flood of MC, I went to Weight Watchers and attained my goal of losing 10 pounds. I hit a weight within a normal BMI that I can never get below. Then came MC and my weight dropped very quickly and frighteningly. Very soon after I began a meat diet and removed the foods I already knew I was sensitive to through a previous elimination diet, I began gaining weight. So in a year my clothing size has been 12, 10, 8 (with 8's too big for a while), 10, 12. The last time I was a size 8 was at 15.
Now I must modify my "very close friendship" with bacon and potato chips. I must see them less often and I will miss them terribly.
It must be difficult for people in the extreme D and weight loss phase to hear that I'm getting fat so let me add that I've worn five different sizes of clothes in one year! Prior to the Great Flood of MC, I went to Weight Watchers and attained my goal of losing 10 pounds. I hit a weight within a normal BMI that I can never get below. Then came MC and my weight dropped very quickly and frighteningly. Very soon after I began a meat diet and removed the foods I already knew I was sensitive to through a previous elimination diet, I began gaining weight. So in a year my clothing size has been 12, 10, 8 (with 8's too big for a while), 10, 12. The last time I was a size 8 was at 15.
Now I must modify my "very close friendship" with bacon and potato chips. I must see them less often and I will miss them terribly.
I've had in my mind that legumes (other than soy and peanuts) might be ok soon. Rather than waiting for the opportunity to try the legumes considered by our group to be most likely to work for an MC'er with legume issues, I tried kidney beans.
I was on a day trip with a packed picnic and I stayed out longer than expected. Not having enough safe food available on a trip is not a good thing. I read the ingredients for Wendy's chili an though it would be ok if I picked out some of the kidney beans and poured it over a baked potato with the skin removed.
Wrong!
My issue is not only my large intestine. It's my whole GI system. The next day I had a coughing and gagging spell (from my gut issues) in WalMart that sent me running to the bathroom to avoid vomiting on the floor. I just gagged a lot and didn't vomit. My face was drenched with tears, not from crying but from a functional reaction to an extreme cough that wrenches my entire body. That's what I used to do before controlling my diet and adding an antihistamine. When I stay on track, my upper GI issues are not perfect but are improved by leaps and bounds.
I was going to bump my Entocort down to 1 mg today. I'll wait 2 more days now. Goodbye kidney beans.
[/b]
I was on a day trip with a packed picnic and I stayed out longer than expected. Not having enough safe food available on a trip is not a good thing. I read the ingredients for Wendy's chili an though it would be ok if I picked out some of the kidney beans and poured it over a baked potato with the skin removed.
Wrong!
My issue is not only my large intestine. It's my whole GI system. The next day I had a coughing and gagging spell (from my gut issues) in WalMart that sent me running to the bathroom to avoid vomiting on the floor. I just gagged a lot and didn't vomit. My face was drenched with tears, not from crying but from a functional reaction to an extreme cough that wrenches my entire body. That's what I used to do before controlling my diet and adding an antihistamine. When I stay on track, my upper GI issues are not perfect but are improved by leaps and bounds.
I was going to bump my Entocort down to 1 mg today. I'll wait 2 more days now. Goodbye kidney beans.
[/b]
Hi DJ,
Soy and legumes are particularly problematic for me. I found that all of the "gums" cause me great distress. These gums such as xanthan gum and carrageenan are found in many gluten-free products and almond milk. I have to be very careful to avoid all of these. I make my own almond milk now. It's really yummy. I don't know if you will need to avoid them as well as you reduce your Entocort, but you may. I'm glad you're going slowly.
Good luck!!
Kathy
Soy and legumes are particularly problematic for me. I found that all of the "gums" cause me great distress. These gums such as xanthan gum and carrageenan are found in many gluten-free products and almond milk. I have to be very careful to avoid all of these. I make my own almond milk now. It's really yummy. I don't know if you will need to avoid them as well as you reduce your Entocort, but you may. I'm glad you're going slowly.
Good luck!!
Kathy
Thanks, Tex. I still make poor choices once in a while but I get the message much faster now!
Hi Kathy, I can't use almonds in any form but I'm having great luck with Silk coconut milk and many other coconut products. I'm resisting the temptation to make my own coconut milk - I'm trying to learn to simplify things. Keeping things simple is not one of my strengths. My guess is that I can hold up for about two months before I fall off the wagon and make my own coconut milk.
I am "sneaking" off Entocort on my tiptoes. Not only am I trying to avoid a relapse, the process of reducing Entocort throws me off center a bit in general. I'm making tiny reductions now and scheduling the reductions around my required travel.
Tomorrow I will go from 1.5 mg to 1 mg. I took my leftover 1.5 mg capsules and divided them in half again. As soon as I'm comfortable on 1 mg, I'll drop to .75 mg. I'm hoping that with such a small reduction I won't feel the difference. At that point, I think I could just stop but I plan to reduce one more time by dividing my 1 mg capsules in half and taking .5 mg for at least a few days.
Then, when I'm off Entocort completely, I plan to celebrate with a SIX FOOT SUB FROM SUBWAY. Hahahahaha! That's a lot like painstakingly building a beautiful boat, taking it out on a lake, and cutting a big hole in the bottom.
Hi Kathy, I can't use almonds in any form but I'm having great luck with Silk coconut milk and many other coconut products. I'm resisting the temptation to make my own coconut milk - I'm trying to learn to simplify things. Keeping things simple is not one of my strengths. My guess is that I can hold up for about two months before I fall off the wagon and make my own coconut milk.
I am "sneaking" off Entocort on my tiptoes. Not only am I trying to avoid a relapse, the process of reducing Entocort throws me off center a bit in general. I'm making tiny reductions now and scheduling the reductions around my required travel.
Tomorrow I will go from 1.5 mg to 1 mg. I took my leftover 1.5 mg capsules and divided them in half again. As soon as I'm comfortable on 1 mg, I'll drop to .75 mg. I'm hoping that with such a small reduction I won't feel the difference. At that point, I think I could just stop but I plan to reduce one more time by dividing my 1 mg capsules in half and taking .5 mg for at least a few days.
Then, when I'm off Entocort completely, I plan to celebrate with a SIX FOOT SUB FROM SUBWAY. Hahahahaha! That's a lot like painstakingly building a beautiful boat, taking it out on a lake, and cutting a big hole in the bottom.
I'm reading posts from people who go off Entocort and have some level of relapse. Once off, I don't think going back on is the first answer. Keeping a journal documenting more detective work on diet is a long-lasting choice. Being sure to add only one food at a time allows for good detection. If you have added several new foods at one time and had a poor outcome, go back to safe foods and add one food at a time.
I know this sounds crazy but I am very sensitive to reductions in Entocort. I may have loose BMs, bloating, mood changes, headaches, insomnia..... Each reduction is different but I have symptoms each time. My response to that is to wean off through "micro-dose". When I go off Entocort in March, my final dose will be under 1/2 mg. With all I've been reading on this Board and the recent study from Germany, I'm hoping that my method prevents relapse. I will remain on Claritin for a months after stopping Entocort, then I'll see how thing are without Claritin.
As I micro-dose, then stop Entocort, I'm working hard to remember to go easy on new foods and to test them one at a time. From what I can see, MC'ers sometimes think there is a beginning and and end to this and that doesn't seem to be the case for most of us who became sick enough to seek out help on this Board. I have gained so much from what our group has shared. You are all
life-changers.
I know this sounds crazy but I am very sensitive to reductions in Entocort. I may have loose BMs, bloating, mood changes, headaches, insomnia..... Each reduction is different but I have symptoms each time. My response to that is to wean off through "micro-dose". When I go off Entocort in March, my final dose will be under 1/2 mg. With all I've been reading on this Board and the recent study from Germany, I'm hoping that my method prevents relapse. I will remain on Claritin for a months after stopping Entocort, then I'll see how thing are without Claritin.
As I micro-dose, then stop Entocort, I'm working hard to remember to go easy on new foods and to test them one at a time. From what I can see, MC'ers sometimes think there is a beginning and and end to this and that doesn't seem to be the case for most of us who became sick enough to seek out help on this Board. I have gained so much from what our group has shared. You are all
life-changers.
Good morning. I know that my micro-dosing Entocort may seem extreme for some but I am very sensitive to the drug and I have gained great benefits that I want to maintain. I am taking the teeniest micro-dose now and I will take my last dose in less than a week.
As I've mentioned before on this Board, since I began my very careful diet and Entocort, my body pain (except a neck issue from a car accident) has dramatically lessened. With each reduction of Entocort, I feel "off" for a few days then my balance returns. As I have reduced Entocort, I have found a few more sensitivities but I've also healed to a degree along the way. I can tolerate more cooked fruits and veggies now.
Much to my surprise, with almost no Entocort in my system, my drastic reduction in body pain is still there, and with a very careful diet, my gut is behaving better than it did before the "Great Flood of MC".
I am still working on fatigue/exhaustion. That has been a life-changer. I've heard from others that the exhaustion also improves with time. I'll just keep healing and see where it takes me. On the plus side, the drastic reduction in body pain has allowed me to sleep much better.
All in all, it's good. I've altered my diet enough that it's working and I'm moving in a positive direction.
As I've mentioned before on this Board, since I began my very careful diet and Entocort, my body pain (except a neck issue from a car accident) has dramatically lessened. With each reduction of Entocort, I feel "off" for a few days then my balance returns. As I have reduced Entocort, I have found a few more sensitivities but I've also healed to a degree along the way. I can tolerate more cooked fruits and veggies now.
Much to my surprise, with almost no Entocort in my system, my drastic reduction in body pain is still there, and with a very careful diet, my gut is behaving better than it did before the "Great Flood of MC".
I am still working on fatigue/exhaustion. That has been a life-changer. I've heard from others that the exhaustion also improves with time. I'll just keep healing and see where it takes me. On the plus side, the drastic reduction in body pain has allowed me to sleep much better.
All in all, it's good. I've altered my diet enough that it's working and I'm moving in a positive direction.