It has been awhile so will give you just a brief update. In Jan I saw my GI (one that is on the recommended list) and was ready to discuss immune suppressants. He probably took 15 min. telling me all the issues and there was still only a 50-60% chance of it working. (My husband is not for this, but in the end it might be my only hope) The doc would prefer that I stay on 9mg of Entocort forever. However, he would consider Imuran, but would need another colonoscopy. In the following 2 wks I began to feel better. I attribute this to a product called Immutol. I have had nausea for 3 yrs and didn't know how it felt to feel good again. Then out of nowhere the bowels improved and it lasted the usual 3-4 weeks before deteriorating. I had loss so much weight prior, that I had to add back in some non-grains. So my improvement was not from eliminating any more foods.
Then early this spring, I was bit by a copperhead. Amazingly my immune system did very well. I bring this up because there has been some discussion on under vs. over reactive immune system and I really wonder what it all means. I feel that I have a very over reactive system. One note here; while I was in the emergency I told two different people not to give me an antibiotic with dairy, corn, soy and gluten, and of course, when I went to fill it, it had lactose! I did without. Don't trust anyone!
My system continues to react to the few foods I eat and am now down to only 1 for sure meat, turkey. This continues to be a downward cycle with no end. I am not only taking the 9mg of Entocort but also am now up to 2 Imodium a day and may have to increase. My bowels at best, are soft, finger-shaped floaters.
Gloria, if you read this I saw where you were trying to cut back on the Entocort and up the Imodium. FWIW, my GI is totally ok with the 9mg of Entocort and he is ultra conservative. He is a top notch GI and specializes in geriatric issues.
Tex, I went back on L-Glutamine for about 2 months and saw no help. Only other supplements I am taking now is the 5,000 mg of D3, 1 coral calcium, 2 Immutol and 30 billion of bifidobacteria.
I've tried to catch up on all the posts and my heart goes out to all of you! This disease can be so dreadful. When you have the disease as long as a few of us have had without much help, it becomes the total focus of your life AND from my prospective, that is where you have to try and make a change. We have an RV and go camping a lot, regardless of my situation. Nature is a sure cure for the blues!! I try to change my thought patterns the minute I start to think about this disease and focus on someone else who is a lot worse off than myself. I'm now trying to pop out of bed 1st thing instead of laying around watching the news. I was surprised to find that I felt better and my intestines wouldn't always become active immediately.
Love, G
Still fighting the battle..............
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Still fighting the battle..............
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Ginny,
It's nice to see an update from you. I've been wondering how you have been doing. FWIW, I tend to agree with your gastroenterologist. For all the claims made about the effectiveness of immune system suppressants, (such as Imuran), as Joe has discovered, while they certainly can help, they're not a panacea, and for many users, careful diet control is still essential, and even with that, flares still occasionally erupt, that have to be treated with either budesonide or prednisone.
It's great that you were able to enjoy a period of remission for at least a few weeks. That's proof that it's still possible. This may be irrelevant, but as you have probably noticed, many of us on this board now see mast cell issues lurking behind every shadow, and I note that your remission appears to have occurred during the lull between allergy seasons, (between the end of cedar pollen season, and the beginning of elm pollen season). I would also point out that research shows that corticosteroids actually reduce the number of mast cells in the intestines. Of course, doctors and medical researchers have always claimed that no one knows how corticosteroids suppress the inflammation associated with IBDs, but I say that the mechanism by which they work is obvious - they suppress inflammation by suppressing the number of mast cells in intestinal tissue. This is especially important, IMO, for anyone who happens to have CC, because, (IMO), mast cells promote the propagation of thickened collagen bands. I say "IMO" because research data exist to show that this is true in the skin, but as far as I can determine, no one has ever researched that particular phenomenon in the epithelia of the intestines. I've forgotten, do you by any chance have CC? I'm guessing that you probably do.
I agree with you about getting out of bed in the mornings. A few months ago, I was having cross-contamination problems, and feeling slightly lousy, and I developed a habit of doing as you say - turning on the tv and watching the news, etc., before getting up. I discovered, though, that the sooner I get up, the better I feel, as a general rule.
Outside of a few thunderstorms, and other rain events, the camping weather has been awesome this spring, hasn't it. The weather is certainly making up for shortchanging us last spring. Another benefit of getting out and enjoying nature is that it's a very effective stress-reliever, and IMO, stress relief can't be overemphasized as a vital part of the treatment program necessary for effectively controlling the symptoms of this disease.
Thanks for the update.
Love,
Tex
It's nice to see an update from you. I've been wondering how you have been doing. FWIW, I tend to agree with your gastroenterologist. For all the claims made about the effectiveness of immune system suppressants, (such as Imuran), as Joe has discovered, while they certainly can help, they're not a panacea, and for many users, careful diet control is still essential, and even with that, flares still occasionally erupt, that have to be treated with either budesonide or prednisone.
It's great that you were able to enjoy a period of remission for at least a few weeks. That's proof that it's still possible. This may be irrelevant, but as you have probably noticed, many of us on this board now see mast cell issues lurking behind every shadow, and I note that your remission appears to have occurred during the lull between allergy seasons, (between the end of cedar pollen season, and the beginning of elm pollen season). I would also point out that research shows that corticosteroids actually reduce the number of mast cells in the intestines. Of course, doctors and medical researchers have always claimed that no one knows how corticosteroids suppress the inflammation associated with IBDs, but I say that the mechanism by which they work is obvious - they suppress inflammation by suppressing the number of mast cells in intestinal tissue. This is especially important, IMO, for anyone who happens to have CC, because, (IMO), mast cells promote the propagation of thickened collagen bands. I say "IMO" because research data exist to show that this is true in the skin, but as far as I can determine, no one has ever researched that particular phenomenon in the epithelia of the intestines. I've forgotten, do you by any chance have CC? I'm guessing that you probably do.
I agree with you about getting out of bed in the mornings. A few months ago, I was having cross-contamination problems, and feeling slightly lousy, and I developed a habit of doing as you say - turning on the tv and watching the news, etc., before getting up. I discovered, though, that the sooner I get up, the better I feel, as a general rule.
Outside of a few thunderstorms, and other rain events, the camping weather has been awesome this spring, hasn't it. The weather is certainly making up for shortchanging us last spring. Another benefit of getting out and enjoying nature is that it's a very effective stress-reliever, and IMO, stress relief can't be overemphasized as a vital part of the treatment program necessary for effectively controlling the symptoms of this disease.
Thanks for the update.
Love,
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.
Hi Ginny,
DH retired two weeks ago and we went to visit DD the next day. I'm still catching up on the board and am adjusting to having someone home with me all the time. I hope to establish a new routine soon.
I'm so sorry to hear about your progress. I think about you often. I have pretty much given up on ever reaching remission without meds. I have been taking 1/2 Imodium every day and have reduced Entocort to 2 pills a day. My main reasons for reducing Entocort are my osteoporosis and the cost of the medicine now that we're on Medicare. Imodium works well for me, probably because I've never taken it on a regular basis. I am seeing large Norman "pieces" on a daily basis now and the excessive gurgling has stopped. I am still very careful with my diet, but I've been able to add mangos back without a problem. What a difference it has made in my happiness! I almost cringe at telling you that because many a time I have consoled myself by thinking you're having similar frustrations. It can be comforting to know we're not alone.
It's unfortunate that your GI wants to do another colonoscopy before prescribing Imuran. I understand that he wants to be absolutely certain that you don't have cancer before prescribing an immune suppressant, but colonoscopies are so hard on the gut. I will only do another if it will change my course of treatment. That's where you're at, so I understand why you'd consent. I hope that the Imuran will help. You've certainly tried everything.
I also didn't see any improvement with L-glutamine. I've tried every OTC antihistamine and the only one that helped was Benadryl. The improvement lasted about two weeks and then it was business as usual. I'm going to try getting (or making) a compounded version to see if it helps. I also take Histame every time I eat avocado and chocolate (once every week or two). So far, so good. I tried an H2 blocker (Zantac) for a few weeks, but it made no difference. I think taking H1 and H2 blockers is worth a try. They are certainly cheaper than visiting a mast cell specialist who will give the same recommendations.
Good luck and please stay in touch. Your camping days sound wonderful! We hope to begin travelling soon, too.
Gloria
DH retired two weeks ago and we went to visit DD the next day. I'm still catching up on the board and am adjusting to having someone home with me all the time. I hope to establish a new routine soon.
I'm so sorry to hear about your progress. I think about you often. I have pretty much given up on ever reaching remission without meds. I have been taking 1/2 Imodium every day and have reduced Entocort to 2 pills a day. My main reasons for reducing Entocort are my osteoporosis and the cost of the medicine now that we're on Medicare. Imodium works well for me, probably because I've never taken it on a regular basis. I am seeing large Norman "pieces" on a daily basis now and the excessive gurgling has stopped. I am still very careful with my diet, but I've been able to add mangos back without a problem. What a difference it has made in my happiness! I almost cringe at telling you that because many a time I have consoled myself by thinking you're having similar frustrations. It can be comforting to know we're not alone.
It's unfortunate that your GI wants to do another colonoscopy before prescribing Imuran. I understand that he wants to be absolutely certain that you don't have cancer before prescribing an immune suppressant, but colonoscopies are so hard on the gut. I will only do another if it will change my course of treatment. That's where you're at, so I understand why you'd consent. I hope that the Imuran will help. You've certainly tried everything.
I also didn't see any improvement with L-glutamine. I've tried every OTC antihistamine and the only one that helped was Benadryl. The improvement lasted about two weeks and then it was business as usual. I'm going to try getting (or making) a compounded version to see if it helps. I also take Histame every time I eat avocado and chocolate (once every week or two). So far, so good. I tried an H2 blocker (Zantac) for a few weeks, but it made no difference. I think taking H1 and H2 blockers is worth a try. They are certainly cheaper than visiting a mast cell specialist who will give the same recommendations.
Good luck and please stay in touch. Your camping days sound wonderful! We hope to begin travelling soon, too.
Gloria
You never know what you can do until you have to do it.
Tex, yes I have CC and I have tried H1 & H2 blockers; not necessarily at the same time. I took allergy shots for years. When we first started discussing the possibility of mast cell issues (almost 2 yrs ago), I did go on Zyrtec and a low fiber diet. It worked very well for a month or so and then back to normal. I also understood that you really needed the H2 blocker to make a difference in the intestines. I might try them again for a longer period of time. I really have no other issues that would indicate I have a mass cell problem. I find that I can stand shell fish once a week but not fin fish. Anyhow, everything is worth a try.
Gloria, never feel sorry about feeling better. I am really glad for you. I have not decided to do the Imuran just yet and I have to change docs in Sept so we will see then. I've been retired now for a year along with my hubby and love it. You will make the adjustment. I must look at my notes again, I didn't realize that an avocado affected histamines................I eat 1/2 to 1 a day for calories. BUT, I can not eliminate anymore foods. I need to check out Histame ingredients. I believe the pork family is some where in it. My gurglings are mainly at night and particularly when I lay down. I blame that on my small frame now!
Tex, spring in TX has just been beautiful. We have had the best camping! We are going down around Matagorda Bay in May and then home for the VERY HOT SUMMER!
I'm going to try and do a better job of keeping up here on the board, but honestly with my record of relapses and no end in sight, I don't feel that I should offer any advice.
Thanks for caring, G
Gloria, never feel sorry about feeling better. I am really glad for you. I have not decided to do the Imuran just yet and I have to change docs in Sept so we will see then. I've been retired now for a year along with my hubby and love it. You will make the adjustment. I must look at my notes again, I didn't realize that an avocado affected histamines................I eat 1/2 to 1 a day for calories. BUT, I can not eliminate anymore foods. I need to check out Histame ingredients. I believe the pork family is some where in it. My gurglings are mainly at night and particularly when I lay down. I blame that on my small frame now!
Tex, spring in TX has just been beautiful. We have had the best camping! We are going down around Matagorda Bay in May and then home for the VERY HOT SUMMER!
I'm going to try and do a better job of keeping up here on the board, but honestly with my record of relapses and no end in sight, I don't feel that I should offer any advice.
Thanks for caring, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Thomas Edison would be the first to point out to you that knowing what doesn't work is just as important as knowing what does work - that qualifies you as one of the most knowledgeable members of the board.Ginny wrote:I'm going to try and do a better job of keeping up here on the board, but honestly with my record of relapses and no end in sight, I don't feel that I should offer any advice.
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.
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Gabes-Apg
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Here here to tex's comment above
and you are very brave and have a wonderful DH who was right beside you in your battle!
thanks for the update. I was very interested in the outcome and your post about immune system resonates with some observations i have made in the past couple of weeks that i will be doing a seperate post about
and a double here here for nature its ability to keep you sane while living with this crappy condition....
take care
and you are very brave and have a wonderful DH who was right beside you in your battle!
thanks for the update. I was very interested in the outcome and your post about immune system resonates with some observations i have made in the past couple of weeks that i will be doing a seperate post about
and a double here here for nature its ability to keep you sane while living with this crappy condition....
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama