An update on my situation

[wmonique2]

Hi Charlotte,

They have all chimed in and I am not sure I can add anything to this collective response, just want to wish you the best and hope that you start feeling better soon. Every time I've tried to get off meds, I paid a price with a hellacious flare.


Best,

Monique

[JeanIrene]

Charlotte, I will keep you in my prayers and hope you get better soon.

Jean

[tex]

Most of budesinide's steroid is released into the intestines and not directly into the blood stream. Hmmm. Perhaps Tex has some input on this.

According to one research article, up to 19 % of budesonide is absorbed into the bloodstream, so you are correct that it is not as prone to causing bone damage as prednisone, but in the long run, some degree of damage will surely occur. The rate at which damage accrues depends on many factors determined by one's lifestyle, so it's difficult to make any accurate predictions. My thoughts are that by avoiding gluten and doing regular weight-bearing exercise, it might be possible to counteract much (possibly all) of the negative effects of a low-dose maintenance treatment with budesonide.

All of the warnings about potential osteoporosis risks associated with long-term budesonide treatments are based on a label recommendation of 6 mg per day. Anyone taking only 3 mg every other day is only exposed to one-fourth the labeled amount, and anyone taking only 3 mg every third day is only exposed to one-sixth the labeled dose. Surely that should significantly reduce the risk of damage (or looking at it another way, it should significantly reduce the amount of accumulated damage over the long term).

Tex

[Sheila]

Thanks for putting the budesinide/osteoporosis conundrum into perspective, Tex. In a perfect world, stopping budesinide would be easy once inflammation was under control. As we all know, nothing about MC is easy or predictable. I'm hoping that dropping to 3 mg every third day will work for me. I think my GI doc will go along with continuing the RX indefinitely as long as the side effects are minimal.

Charlotte and Gloria's struggles getting off budesinide are what caused me to rethink stopping the drug. The last 3 years have been so stressful, I want some peace in my life. Dealing with WD and all of the rest of it is just depressing. I hope both Charlotte and Gloria will succeed, get well and stay that way.

Sheila W

[Gloria]

Hi Charlotte,

I'm so sorry that you have relapsed. As you know, I'm all too familiar with relapsing after going off Entocort. I don't have many suggestions, just that nut butters aren't my friends. Neither are vegetables or fruits. I only eat two varieties of vegetables and one fruit, and worry about my nutrition. Sometimes foods that are fine for others are harmful for those of us with many sensitivities. I've recently become suspicious of Pop Corners, a snack which has helped me through the long afternoons without any other acceptable snacks. It may be the sunflower oil in them.

I wish there were easy answers, but for some of us, it's much more complicated. If you can maintain on one Entocort every two or three days, you're at a very minimal dose, as Tex explained. Imodium is safe and you might be able to reduce the Entocort in combination with Imodium.

Good luck! Keep us posted about your progress.

Gloria

[wonderwoman]

I had my TSH checked this morning and they called with the results. It is 2.41 so it is within normal range.
Now I will order three month refill of Levothyroxine .75

[wonderwoman]

Tex wrote

If I were in your situation, before I went back to using budesonide, I believe I would try a very simple, bland, elimination diet for at least a few weeks or so, because while your current diet appears to be generally safe, you are eating so many foods that it's virtually impossible to say which one (or ones) might be causing your inflammation. In fact, you might have to try more than one elimination diet, because it's possible that the few "safe" foods that you select for the first trial might not actually be safe, and that has tripped up more than one member here.

For example, I would probably try a week of nothing but turkey soup and maybe squash or carrots, to see what happens. I realize that will be tough to do, but you might see encouraging results within a few days, and as soon as you can get your digestive system settled down, then you can experiment with adding foods back in, one at a time, until you find the one/s that were causing the problem.

Sunday noon March 24th I posted this under "Problems with Imodium"

I didn't try Pepto Bismal with this flair because I had absolutely no luck with it back in 2010 while we were traveling and on our cruise. I got home and went on Budesonide. This time when things started to deteriorate I was taking small doses of Imodium which helped initially. I recently switched to Pepto Bismol and have not seen any difference. I am now going to eat only turkey/carrot soup for a week to see what happens.

I switched from Imodium to Pepto Bismol March 19th and kept increasing the dosage until I was taking 8 a day and still having WD even though I was on a very restrictive diet.

At Tex’s suggestion, on Sunday March 24th I made a huge pot of turkey soup with a lot of carrots and froze it in small containers to take out on a daily basis. That was all I ate from Sunday night until Saturday afternoon and the WD continued. I continued with the PB until March 28th when I thought I might be reacting to the PB because the WD was getting worse. On the 28th I went back to Imodium and took 4 a day for 3 days. One half to one Imodium was all I needed in the past and this time even 4 Imodium would not stop the WD. Saturday afternoon I questioned weather I was reacting to the turkey or carrots because that was all I had eaten all week. I said I’ve had it and took 3 Budesonide. Sunday morning I took another 3. Easter Sunday all I ate was ham, asparagus, and sweet potato. The Budesonide stopped the D immediately and I didn’t have a BM on Sunday. This morning I forced out three hard marbles. Then about an hour later I had a nice large NORMAN. First one in a long time. I haven't taken any Budesonide this morning yet but will probably only take two.

With my Paleo diet and all the foods I needed to eliminate because of Enterolab testing, I have no idea what I can eat this week. Chicken, Rice and bananas are out. Squash, sweet potato, zucchini and maybe fish and pork. And with the Budesonide, it's harder to tell if you are reacting to a food.

I hope I am not reacting to turkey because I would hate to give that up. I will not eat turkey or carrots for awhile. I really enjoyed the turkey soup. It was very tasty and didn’t have to wonder what am I going to eat today.

Any suggestions will be appreciated.

[Sheila]

Charlotte, so sorry the WD continued throughout your turkey and carrot week.

When I had MRT testing done I was surprised to find that carrots, chicken and other staples of my diet were "red" foods. The MRT diet stressed the need to rotate foods every three days and not to eat the same thing daily. I've found it almost impossible to do this because leftovers become pretty useless after three days and I don't eat enough of a variety to switch everything for every meal, every three days. So, do we build up a reaction to foods we tend to overeat? If you eat turkey and carrots every day, for every meal for a week or more do you sensitize your body and then react to these foods? If that is the case, dealing with MC is that much harder to live with. Right after I had the MRT tests I made a chart of meals to eat in a three day rotation. I am not disciplined enough to stick with such a restrictive and tedious diet. I was throwing out perfectly good food, spending a lot more money on food, cooking way too much and eating stuff I really didn't like.

I'm still on 1 budesinide every other day and will try every third day when I get up my nerve.

I hope you can figure out a way to keep Norman and minimize the budesinide. I'm interested to hear what Tex thinks about how eating the same foods repetitively might effect our MC.

Sheila W

[tex]

I'm interested to hear what Tex thinks about how eating the same foods repetitively might effect our MC.

This topic is briefly mentioned in the book, and obviously this is just my own opinion, but I agree with Dr. Fine that we are either sensitive to foods (and produce antibodies to them) or we are not sensitive to them (and we don't produce antibodies). I eat the same foods virtually every day. IMO, rotating foods can postpone a reaction if we have not already built up an antibody level above a reaction threshold, but once we surpass that threshold, we will react every time.

My oat challenge is a good illustration of that principle. Before I started, I hadn't eaten any oats in at least 5 or 6 years, so I surely didn't have any significant number of antibodies in circulation. During the challenge, I ate gluten-free oats twice a week (which meets the criteria for a 3-day or better rotation program). IOW, I alternated between skipping 3 days and 4 days between exposures to oats. I had no problems for approximately 6 weeks, but after 6 weeks the D started and continued off and on for about 6 weeks after I stopped eating oats. So obviously, even using a rotation diet, I built up a sensitivity to oats in 6 weeks. But once the elevated antibody level was in place, if I ate any oats at anytime after that, I had bigtime D in about 3 or 4 hours, every time. I will never intentionally eat oats again.

Therefore, IMO, the rotation diet will only work successfully for foods for which we have not demonstrated a sensitivity toward (nor any potential sensitivity), or foods that we may be sensitive to but we have not been exposed to for many years, and even in that situation, the honeymoon will not last forever, because as soon as we build up enough antibodies in circulation, rotation is no longer successful.

That's just my opinion, FWIW.

Tex

[Sheila]

Thanks, Tex. I'm sure I read that in the book but it didn't stick in my brain, probably because I had it in my mind that I had to avoid eating the same things repetitively, per MRT diet rules. When I look at the list of foods that tested in the red or yellow zone, they were mostly foods that I ate frequently. Of course, there were foods that I've never eaten and some I never heard of on the list as well. Because I'm taking budesinide, I don't notice much of a reaction to a cup of coffee or occasional slip with another food on the MRT list.

I think you are probably right, Tex and I'm not going to worry about eating pork or beef too many times in a row. I make a fruit smoothie in the morning and there aren't enough fruits in the market to change them all out every three days. As long as I avoid my major intolerances per Entero lab and the red items on the MRT test, I think that is reasonable.

It is probably time to reread your book in order to refresh my memory. Thanks for taking the time to answer my question.

Sheila W

[Gloria]

There is another reason for the rotation diet, and that is that it makes it a little easier to determine which foods are causing problems. When we eat the same foods every day, it's anybody's guess which food is problematic.

Charlotte,
I completely sympathize with you. I usually don't comment about the Paleo diet because I think that it's a good diet for people who can eat a wide variety of fish, meats, fruits, vegetables, and eggs. There are a few of us, however, who are able to eat so few fruits and vegetables, and no eggs or fish, for whom the Paleo diet would be a starvation diet with few calories and nutrients.

For most of us, there comes a time where we need to determine the plan that works best for us. As Gabes frequently writes "There is no right way or wrong way, there is your way." That's especially true for those of us with recalcitrant cases. If you began eating Paleo because you determined that you reacted to all grains, legumes and root vegetables, then you should continue to avoid them. If, however, you didn't have any problems to some of those foods, then I see no reason why you can't resume eating them. There are many foods in the Paleo diet which cause a reaction in members. It's a guideline, but, as with any other diet, we can't assume that all of the foods acceptable in the Paleo diet are acceptable to our bodies.

Your diet of turkey soup with carrots would give me D because carrots and all root vegetables cause problems for me. However, I can eat turkey soup with cauliflower and corn grits or corn noodles. It may be that you are reacting to root vegetables.

I'm impressed that three Entocort pills stopped the D immediately. You are very fortunate that Entocort still helps you so quickly. If I were you, I would determine the minimal dosage of Entocort that allows you to eat normally and still have Normans. Then use that as a maintenance dosage. You can take a small dosage of Imodium to supplement the Entocort, which might allow a smaller dosage. Several members are on small maintenance dosages of Entocort. You've never mentioned Entocort's cost as a problem, so I'm assuming that your insurance coverage is adequate.

You realize, of course, that I'm not writing as someone who has been successful at obtaining remission. Instead, I'm writing from the perspective of someone who has tried valiantly to achieve it, but has had to accept that it will not be possible without the help of medication. We each have to make our own decisions and do the best we can for our situation.


Gloria

[tex]

Gloria,

Excellent post. I agree 100 % with everything you wrote.

Tex

[wonderwoman]

Sheila,

My MRT testing only showed
two red items, Capsaicin (the active component of chili peppers) and Ginger --- I don’t use either one
There were only a few yellows and they were things I never use or no longer eat such as mushrooms, celery and walnuts. I gave up coffee for several months. Now I have two cups of decaf in the morning.

Carrots and turkey are very low green on MRT

Gloria,

I was thinking it was more likely the turkey, not thinking about carrots being a root vegetable and that could be the problem. Anyway, no turkey or carrots for awhile.

At Enterolab, Chicken had the highest score of the meats. I’m wondering, how closely are chicken and turkey related.

I felt I was on a rotation diet during my recent flair. However Tex felt I had too many items in my diet so now I have reduced the number of vegetables I am eating and am trying lamb and ground bison.

I have never eaten lamb and was turned off by the thought of eating it. I bought a boneless lamb shank and roasted it and then divided it into small packages and froze it. The center was very good and tender. Problem is sometimes when you reheat meat it gets tough. Some of the outside was rather grizzly so I put it in the food processor and then twice that day I mixed a small amount in with my sweet potatoes.

I also bought ground bison and made meatballs with it using grated sweet potato and spices. I never had bison before. They turned out very good too.

For fish I have salmon and talapia. I also eat pork. Have small packages of ham left over from Easter.

Vegetables are sweet potato, squash, asparagus, broccoli, and cauliflower. I have small bags frozen that I take out for two meals during the day.

I switched to Silk coconut milk even though it contains Carrageenan because I reacted to almonds at Enterolab.

I make tapioca pudding using one egg, but that’s the only eggs I eat.

Also have a spoon of Sunflower butter in the evening.

No nuts or fruit for now. Also no corn, rice, chicken or beef. Stopped Quinoa until I get more healed and then will try it again. I really miss the quinoa for breakfast.

I really miss eggs and chicken.

Sat & Sun. I took three Budesonide and Mon, Tues & Wed I took two each day. I am pleased to announce I had a large NORMAN first thing in the morning on Monday, Tuesday, and Wednesday. I will continue with two Budesonide for a while before reducing and supplementing with Imodium if needed.

[Gloria]

Charlotte,

It sounds like you have devised a well thought-out plan. It's terrific that Norman returned so quickly. Keeping my

Gloria

[wonderwoman]

Just about the time I begin to get my situation under control, my husband falls at Walmart and shattered his shoulder joint, Because of the amount of swelling they sent him home last night with strong pain medication and his arm in a sling. He sees the orthopedic surgeon on Monday afternoon. With the type of fracture he has, 99% of the cases need surgery. He spent the night in the recliner and gets up only to use the toilet. I will not be able to come and go like I am used to as he requires so much attention.

The good news is the stress of the situation has not changed my bowel habits. YET! Had one norman again yesterday and haven't gone today yet. Still taking two Entocort.