Weaning Off Entocort

[starfire]

Ant, my pills came. I am taking 2 of the 250mg tablets (hopefully) 3 times a day. I'm not great at remembering to take pills in the middle of the day. I try to get them down really fast because I don't the smell or the taste.

Perhaps I should have waited until I stop taking the antibiotic since I might give that the credit for improvement when I shouldn't. HaHa

Love, Shirley

[ant]

Great they arrived,

Early days for me. I have now stayed on 2 Entocorts per day for a week, plus the Boswellia. My BMs have got softer but not D and today they were firm. But I am feeling mildly bloated - not had that feeling for months - and the BMs are floating which indicates malabsorption.... But all of that could be due to what I have eaten (more vegetables than usual) .... we will have to see.

All the best, Ant

[Polly]

Good morning!

I am very interested in everyone's experience with Boswellia. Have not tried it myself, but on my last GI visit, my Hopkins-trained doc mentioned it. She had heard that it might help in MC but also had no idea of the appropriate dose. So, please keep posting about your results.

Just a word of caution. Be sure to call the manufacturer and find out what, if any, other ingredients are in the Bowellia preparation. This is often a problem with herbal products, especially for those of us with multiple intolerances. Even though Pepto Bismol is supposed to be helpful in MC, both Gloria and I cannot tolerate it. Who knows - maybe it's that neon pink dye? Point being the MIs have to be extremely cautious about what goes into the mouth! Also, since herbals are not regulated, keep in mind that the amount of active ingredient in any preparation can vary widely from what is claimed on the label - this has been shown again and again in studies.

Wouldn't it be terrific if Boswellia became another tool we could add to our MC treatment box? Let's keep our fingers crossed...............

Love,

Polly

[ant]

Good Evening!

The Boswellia Serrata I am taken is made by Swanson's. It says on the front there are 30 capsules - 200mg.

Then on the side it says amount per serving (1 Capsule):
"Boswellia Serrata = 300mg
------------------------------
Boswellin (registered trademark) Boswellia 200mg
Serrata Extract (standardized to 70% total organic acids, 20% boswellic acid) (resin)"

"Other Ingredients:
Gelatin, may contain one or more of the following: microcrystaline cellulose (plant fiber), magnesium stearate, silica".

So now I am not sure if it is 200mg or 300mg a capsule. Anyway took 3X2 today and yesterday (Entocort still 6mg per day in the mornings). MBs firm but floating and slight bloating feeling continues today. Will keep posting on this.

I am trying out a new Doctor (General Practitioner not the GI), who I feel is a little more alternative than my current one. She too one look at the Salofalk that my GI wants me to switch to and said "no way its got Aspartame in it. Stay on the Entocort and try and cut down and stick with the Boswellia".

She also suggested 'Slippery Elm', but I am not sure since it coats and soothes the stomach and intestines and thus may cause even less nutrients to get through. It also "contains antioxidants that help relieve inflammation" so I am not ruling it right out.

Tomorrow she plans to give me Vitamin C intravenously since according to the blood test I am very low on it. Hope that's I good idea

Best, Ant

[starfire]

I had been thinking about posting about this since yesterday.

I have been taking 2 tablets 3 times a day for about 3 days. I have not had much of a bowel movement for 2 days. Prior to that I had been having watery D every day for several days blaming it on the antibiotic (Doxycycline) and I have today and tomorrow before the bottle is finished.

I had ordered the Boswellia Serrata from Vitamin Shoppe. 250mg. Recommended dose 1 3 times a day. I decided to increase it due to past posts on this site.
***********
The label says the Boswellia is standardized to 65% - 70%
Other ingredients: dicalcium phosphate, microcrystalline cellulose, stearic acid, silicon dioxide, hydroxypropyl methycelluluse, hydroxipropyl cellulose, propylene glycol

Claims NO yeast, corn, wheat, sugar, salt, starch, soy, dairy, citrus, fish or animal derivatives, preservatives, artificial colors or flavors.
*********

I do realize that although wheat is in the NO list, gluten isn't. As I was looking at the differend brands to purchase, this was the only one I saw that listed a NO list so I chose it even though it's possible that it could contain gluten.

I didn't change anything in my diet to stop the D other than the Boswellia. I was shocked that it went away so fast. In fact, now I'm starting to wonder if I should cut back on the dosage.

Trial and Error........

Love, Shirley

[Dee]

Hi Shirley!
I think I'd give the Boswellia at least a week trial before doing any dose changes..
If it works that fast & well would be wonderful.
Are you still on any others meds for MC????

Love
Dee

[starfire]

Quite a change from this morning. Watery D again this afternoon. Don't know why it held off for 2 days.

Yes, I'm still on 1 Asacol a day. I take it in the morning.

I guess I became overly optomistic and posted this morning.

Love, Shirley

[ant]

Dear Shirley

So sorry your D is back I you can turn that around soon. It would be too much, I suppose, to expect Boswellia to be a "magic pill" and sort out all the complications of MC a couple of days.

Best wishes, Ant

P.S. Unfortunately I have just run out and cannot get anymore for couple of weeks! Silly of me but when I bought the pack I assumed a much lower dose.

[starfire]

Well, I certainly didn't expect to cure all my woes in a matter of woes. I was just quite surprised when the D went away for a couple of days. That had not been my experience the other times I was stuck on that antibiotic.

I am looking forward to being done with them so at least I'll know I'm not taking something that throws me "off" while trying to come completely off the Asacol. I'm not sure when I'll try to let go of that last pill. It makes me nervous. Ha

I hadn't counted on taking such a large dose either, but I did buy 3 bottles (I think it was) in order to try and give it a fair trial. Looks like I'll have to get some more before those run out at this rate.

Love, Shirley

[Gloria]

The last post I made on this thread was 10 months ago. January 14 I had been on 3 mg Entocort/day for one month w/o problems. I reduced to 3 mg. every other day Jan 23. I began having problems a week later and went back to one pill a day. I also had drastically reduced sugar and carbohydrates because I thought I might have a yeast problem. I began drinking unsweetened lemon/lime or cranberry juice to ward off frequent urinary tract infections. I had my last Norman on Feb. 12, and once again began deteriorating rapidly and was back to where I was when I first was Dx’d. I hadn’t gone off Entocort completely, and was still taking 1 pill per day when I relapsed.

I began scrutinizing my diet again. I noticed a connection between my mouth sores and the lemon/lime and cranberry juices. I stopped taking them and the mouth sores temporarily went away, but the D persisted. I was determined to resolve this flare without increasing Entocort because I seemed to be in a vicious cycle of reducing it, flaring, and increasing it. I eliminated different foods, but nothing was helping. I began an elimination diet, eating mainly chicken, rice and broccoli for two weeks. I still had problems and seemed to get worse instead of better. I surrendered and went back to the full dosage of Entocort in March. I expected to see Normans after a few days, but this time was very different. Norman would not be a steady visitor until June, and he didn’t stay long after that.

I was in deep despair because nothing seemed to be working, in spite of my efforts. I asked Mary Beth if she could help find a dietitian who could arrange for MRT testing. She gave me the name of a dietitian near my home and I had the testing done. I was surprised at how easy it was to arrange for the blood work, and it only cost $10 for it to be drawn. The test must be done using a provider; my dietitian charged $650 for her services and the testing. I received the results in 2 days, on March 31.

I was almost as surprised to see my MRT results as I was to see the Enterolab results. The most comprehensive test covers 150 different foods and chemicals. They categorize the results in bar graph form as: non-reactive (green, or safe), moderately reactive (yellow), and reactive (red).

My reactive foods were: goat’s milk, grapefruit, CRANBERRY, cucumber, codfish, CHICKEN, and green peas.

My moderately reactive foods were: four different food dyes, cottage cheese, CINNAMON, VANILLA, OREGANO, cherry, pear, cantaloupe, WHITE POTATO, beet, eggplant, oat, TUNA, scallop, tilapia, egg, BEEF, peanut, lima bean, and pecans. I ate the foods in caps regularly, but had recently been suspicious about beef and potatoes.

I was surprised that some fruits, dairy and legumes tested as non-reactive, but Mary Beth explained that the test doesn’t test for fructose malabsorption and all lectin responses. I feel that the test is a complement to Enterolab testing, but not a replacement for it.

The dietitian helped me set up a rotation diet where I rotate eating non-reactive foods every three days. I still use this rotation as a tool to keep from developing more intolerances. She encouraged me to include my low-reactive fish, vegetables, and grains. I told her I wouldn’t try fruits, legumes or dairy, even though the MRT testing showed them to be non-reactive. She agreed with me.

I began having trouble the day I started eating the new foods. By the sixth day on the rotation diet, I knew I was reacting to some of the foods and I was even more frustrated. I was eating corn polenta, creamed amaranth, and creamed buckwheat for breakfast. Lunch was turkey, crab meat, and salmon with asparagus, tomatoes, squash and mushrooms and dinner was similar to lunch. The dietitian encouraged me to stay with the diet, but I knew I wasn’t getting better. Once my weight began dropping suddenly (some days I was only eating 750-900 calories), she told me that I needed to get more calories and recommended that I start eating similar to the way I ate before I began the diet. I reviewed what the MRT testing said about their results and I quote it here:

“Degrees of reactivity may not in all cases correlate with presence or level of clinical sensitivity to the food. Strongly positive results have been found to correlate with food reactivity. It is appropriate to eliminate foods with Reactive Scores. Moderately reactive scores should be evaluated by the physician or dietitian based upon patient history and frequency of consumption. After an appropriate period of elimination, reintroduce them one at a time under physician and/or dietitian supervision. If negative foods have been consumed regularly before drawing the blood for the test, there is high probability that they are ‘safe’ and are not likely to provoke symptoms. If test positive foods are eliminated from the diet, these non-reactive foods could reasonably remain in the permitted diet during the elimination phase. The clinician or dietitian should remain alert to the possibility that any of these foods might provoke symptoms.”

I told the dietitian that, according to the LEAP program (administrators of the test), one can’t assume that non-reactive foods are safe, yet that was what she was instructing me to eat. She pretty much left me on my own after that. Mary Beth didn't abandon me and I'll be forever grateful to her. She was non-judgmental and sympathetic, which I greatly appreciated. She mentioned that she thought I had a mast cell problem and gave me a link to a website describing the high-histamine foods. When I looked at the list, I realized that I had reactions to most of the foods on the list. Not only that, but it appeared that my mouth sores were also a symptom of a mast cell problem. I eliminated almost all of the foods on the list from my diet. Fish is a high-histamine food and was likely a big contributor to my getting worse on the LEAP diet.

My opinion of the MRT testing: the test results needs to be viewed in the same light as Enterolab results. Enterolab test results are highly reliable in revealing which foods are not safe. The MRT test results are also highly reliable in revealing which foods are not safe. My mistake (and the dietitian’s) was to assume that the non-reactive foods were safe. They may or may not be. They should be tested before they are assumed safe. I recall that Mary Beth had a more positive experience with the non-reactive foods than I did.

I continued to eat some vegetables that tested OK on the MRT testing: mushrooms, tomatoes, yellow squash, asparagus, zucchini, cauliflower, and broccoli. I also ate some vegetables that weren’t covered in the test, such as turnips, parsnips and kohlrabi. I reacted badly to all vegetables except asparagus, cauliflower and Brussels sprouts. I was in my fifth week on the diet, still taking 3 Entocort pills a day, and was still not seeing Norman. It was a pretty discouraging time. I felt like I was at the end of the trail and had tried everything. The next week, I had Norman two days in a row. I had hope again! I got a mouth sore that Saturday and realized I hadn’t eaten any tomatoes all week until Saturday. Tomatoes had to go. In June, my visits from Norman stopped again. What now?? I began to realize that my salad dressing was a problem because every time I ate it, I got mouth sores. I had replaced the apple cider vinegar with rice vinegar, then with ascorbic acid. Each substitute would work for a few days, only to have the mouth sores return. I finally looked for another recipe. The new recipe had olive oil, tahini, and vinegar. I substituted mustard powder for the vinegar and it worked for a time. Olives are high in histamines, so I replaced the olive oil with walnut oil. I realized that tahini, a sesame seed paste, had to go. I was in utter despair because I had run out of substitutions. I used the spread on my turkey sandwich, which is the only thing I can eat on airplane flights and when I’m away from home. Plus, I used it on my lamb tortillas so they weren’t so dry. Later, I decided to substitute the tahini with almond pulp, leftover from making almond milk. I was amazed that it worked! And its consistency is even better than the previous spread. I’m making mayonnaise without eggs, vinegar, soy or olive oil! It’s a small miracle to me.

My next breakthrough came when I decided I needed to test chocolate. I was estatic when the MRT test results listed it as a non-reactive food. By the middle of June, I was still not seeing Norman, and chocolate was on the high-histamine food list. This was (and is) the hardest food for me to give up. Within two days, Norman returned. There was no denying the obvious. I had given chocolate up other times, but was still eating other reactive foods, so I never noticed a difference. If you've read this entire thread, you'll remember that I once wrote that I drew the line at tomatoes and chocolate. Now, they were both gone. It was a sad day.

My diet became extremely limited. Acceptable meats were turkey, pork and lamb. Vegetables were asparagus, cauliflower and Brussels sprouts. Grains/starches were quinoa, amaranth, rice, corn and arrowroot. I was eating no snacks, fruits, starchy vegetables or fish. These are the only foods I eat now, with the addition of avocado, almond milk, cane sugar, maple syrup and occasional nut butter. I’m also testing coconut.

My weight had dropped to 93 by July, so I decided to test tapioca so that I could rotate puddings for the calories. I began rotating muffins for the same reason. It’s difficult to rotate grains and starches, and I needed a third starch. My tapioca test seemed OK, so I began eating and using tapioca. I was having flat, solid BMs for a few weeks and feeling that I was finally getting better. I reduced one Entocort pill every one, then two days, and took three pills on the third day. I suddenly started getting itchy head and neck bumps. I was eating rice nearly every day and attributed the sores to rice. I stopped eating rice and tapioca and the bumps went away. One day I tested rice and they returned, so I gave up rice altogether. Rice was a mainstay in my diet and I couldn’t do without the calories. I replaced rice with millet and buckwheat. I also replaced rice milk with almond milk. Norman disappeared and once again, I became discouraged.

I went back to 9 mg Entocort a day and saw no improvement for 35 days. It was the end of August and I had been on 9 mg Entocort a day since March, or 150 days, with the exception of the 30 days when I reduced it slightly. I would have given up, but we really have only two choices: keep trying or live with the D. There’s nothing in-between.

I again looked closely at my food diary and realized that I had also eaten a muffin containing tapioca starch on the day I tested rice. I gave up tapioca completely – it is an ingredient in Ener-g egg replacer – and tested rice again. I was still having problems, so I looked again at my food diary and did a shotgun elimination: millet, arrowroot, corn, sugar, almond milk, buckwheat, quinoa, and amaranth. I reintroduced the eliminated foods one at a time. My weight dropped to 91.5 lbs. and my body fat was 11%. I had lost 33 lbs. since I was Dx’d. It was now September 1.

I began having improved BMs by September 7 and began testing the foods I gave up. I realized right away that buckwheat was a problem and have eliminated it entirely. My food diary revealed that I began having problems after eating millet, so I eliminated it entirely. Both foods were listed as non-reactive (safe) on the MRT testing. I was able to reintroduce arrowroot, corn, sugar and almond milk without problems.

I’ve been having Normans since September, and some days have even gone 36 hours or more without a BM. When I flew to Hawaii, I went 48 hours without a BM. I began reducing Entocort by one pill every other day last week. I am seeing slight deterioration, a little cloudiness when I flush some days; other days are OK. I am already suspicious of avocado, the only "fruit" I eat. It may have to go. My weight is 94-95 lbs. on a 2,000-calorie daily diet. I’m hoping I can get at least to 104 lbs., which is what I weighed when I got married 42 years ago.

The teacher in me wants to summarize, and this thread is already very long. I would advise you to never assume that you’ve found all of your intolerances if you aren’t symptom-free. My experience is that if I’m having problems, it’s because I’m eating something that’s bothering me. I’ve never noticed any problems due to stress, but others here have. I believe it can play a part in MC, but it would be a mistake to think it’s entirely responsible for symptoms. Unfortunately, Entocort no longer works rapidly for me and absolutely needs to be taken in conjunction with diet for it to be effective. I may never be able to wean off Entocort completely. I’m hoping that I can at least reduce to a smaller maintenance dose.

Gloria

[Gabes-Apg]

Gloria

i am glad you didnt summarise your post, as the details of your journey is very important.

Thanks for sharing and i agree about if you are reacting, check the foods what works now may not work in 4 weeks time...


Your trip to Hawaii was a wonderful celebration for your dietary journey.

take care

[tex]

Gloria,

What an awesome addition to your "Journal". If that's not an inspiring story of detective work, I don't know what it would take.

FWIW, I definitely agree with you about the need to look for additional sensitivities when symptoms arise. Everything happens for a reason, and when things go wrong with our digestive system, we have to find the reason, if we are to resolve the problem. Just as some of us are more vulnerable to food sensitivities than others, I have a hunch that some of us may be more vulnerable to the effects of stress, than others, for reasons that are probably too complex for us to understand. I believe you are quite correct, though, that in your case, the dominant factor is virtually always food sensitivity.

Thanks for a great writeup.

Tex

[JoAnn]

Gloria, you are an amazing woman! I admire your tenacity and determination to "whip" this thing no matter what it takes. Also, thank you for taking the time to share all this with us as it helps everyone look at their own efforts. You've inspired me to be a better record keeper regarding my food intake. Love JoAnn

[wonderwoman]

Gloria, I just had to comment on your post. I too am glad you did not condense it. You certainly went through a lot but your persistence has paid off. I don't think I could have done what you did. Keep up the good work.

[Ginny]

Gloria, as I have said many times you are my hero and you are right about one thing.................we have no other choice but to keep fighting and trying to figure out all the intolerances. I am just about to start a thread on "woe is me" with my latest encounters. Glad I read your thread, it truly does help us that seem to have a more difficult path to walk. I continue to pray for your healing. Love, Ginny