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I don't know what I would have done without this board's advice and wisdom and Entocort. I feel fortunate that I can take it and not have any bad effects. Without it, my life would be so limited and I'm sure I wouldn't be able to continue working. I might be feeling a little too confident in stopping the entocort next week, but I'm going to try and see what happens. If things don't feel right, I'll go back on and take it slower. Last fall when I went off, I was able to do it this way. I went into a bad flare in Dec. with some bad turkey soup and a virus. I haven't had turkey since and am now wondering if I'm intolerant of turkey since chicken bothers me. I just don't dare try it again until another year or so. Flares do me in emotionally and physically. Thanks for your comments and support on this board and my prayers and best wishes to you as you work your way to complete remission. Love JoAnnAnother Colonoscopy, Biopsy?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Ginny, thanks for your thoughts. My experience with this disease is that I only lose weight when I'm in a flare. When I stabilize, I gain weight even though I eat limited foods. I think mc has actually changed my metabolism and I wish I could lose a few pounds. Too bad we can't trade for awhile and help each other out. I don't know what I would have done without this board's advice and wisdom and Entocort. I feel fortunate that I can take it and not have any bad effects. Without it, my life would be so limited and I'm sure I wouldn't be able to continue working. I might be feeling a little too confident in stopping the entocort next week, but I'm going to try and see what happens. If things don't feel right, I'll go back on and take it slower. Last fall when I went off, I was able to do it this way. I went into a bad flare in Dec. with some bad turkey soup and a virus. I haven't had turkey since and am now wondering if I'm intolerant of turkey since chicken bothers me. I just don't dare try it again until another year or so. Flares do me in emotionally and physically. Thanks for your comments and support on this board and my prayers and best wishes to you as you work your way to complete remission. Love JoAnn
I don't know what I would have done without this board's advice and wisdom and Entocort. I feel fortunate that I can take it and not have any bad effects. Without it, my life would be so limited and I'm sure I wouldn't be able to continue working. I might be feeling a little too confident in stopping the entocort next week, but I'm going to try and see what happens. If things don't feel right, I'll go back on and take it slower. Last fall when I went off, I was able to do it this way. I went into a bad flare in Dec. with some bad turkey soup and a virus. I haven't had turkey since and am now wondering if I'm intolerant of turkey since chicken bothers me. I just don't dare try it again until another year or so. Flares do me in emotionally and physically. Thanks for your comments and support on this board and my prayers and best wishes to you as you work your way to complete remission. Love JoAnnCourage is being scared to death, but saddling up anyway. John Wayne
Will be interesting to see if you can go off entocort. I have never been brave enough to try going off of it. I have been able to skip a day now and then..but always afraid of a flair. What I don't know and my GI doc doesn't know.. is this... if I were to go off entocort and end up back to square one.. would entocort work the second time around? At my age, I am not willing to test the idea:) I will stick to my one a day and if I miss a day now and then.. so much the better:)
grannyh
grannyh
Hi grannyh, I agree with you about not wanting to go back to square 1. I'm going to be slow and careful and if it looks like things aren't going well, I'll stay on entocort as long as I need to. I'm glad I've got a pcp who is open minded and works with me individually on this. She feels like I should always have entocort on hand as I work my way through this. From what you have posted it sounds like you have a great GI. It's nice to not feel like you have to have things under control based on someone else's timetable. Your postings about your experience with entocort and other things have been very helpful to me. Thanks for your advice and input, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Gloria,
If your doctor feels he has run out of options to help you and needs to refer you out, you should have him write a letter to petition your insurance company to cover out of network. Many who suspect mast cell problems have run into this issue. My sister is doing this very thing right now and is going to see someone at Mayo.
Mary Beth
If your doctor feels he has run out of options to help you and needs to refer you out, you should have him write a letter to petition your insurance company to cover out of network. Many who suspect mast cell problems have run into this issue. My sister is doing this very thing right now and is going to see someone at Mayo.
Mary Beth
I had the office visit with my GI today to see why he wanted to do another colonoscopy. He responded that he couldn't stain my old biopsy because it was already stained to determine if I had MC. I have no idea if that's true. I told him if he wanted to get another biopsy to stain for mast cells, he could do a sigmoidoscopy instead. He said the "entero" part of the term Mastocytic Enterocolitis meant inner in Latin and if he wanted a good specimen, it would be better to go further into the small intestine where the mast cells would more likely be found. Again, I don't know if that's true. I really don't think he knows much about it at all - only what he read in the article I gave him. When I asked him what treatment he would prescribe if I did have it, he didn't really respond. I asked him if he would discontinue Entocort and he just looked at me. Then I pulled out a copy of the quote about medicines associated with causing MC that Faithberry posted from Mayo Clinic's website:
http://www.mayoclinic.com/health/collag ... %2Dfactors
He eagerly grabbed it and read it and thanked me for it, saying he was on their website all the time, but hadn't read that.
When it became clear that I wouldn't submit to a colonoscopy unless he could justify it, he told me that there could be other things going on that he could tell from a colonoscopy which wouldn't be revealed from a sigmoidoscopy. Then he began to ask me the same symptom questions that he asked three years ago to rule out Chron's, UC, etc. I realized (and said) that he basically wanted to do a colonoscopy for exploratory reasons. I told him that if he was looking for flattened villi, I probably didn't have them because I have never had malabsorption. At that point he looked at me and said that although I've done a lot of reading, and that's good, he was an MD. and I wasn't. I guess he doesn't want me to know too much!
I told him I was doing better and that I understood that the best time to determine Mastocytic Enterocolitis is when the patient has active reactions. I asked if it would be better to wait until I was not doing well before he did a biopsy. He agreed and that's how we left it. I will call him if I have a relapse and he will do a sigmoidoscopy.
He, like my PCP, is concerned about my weight. He told me that I could be eliminating many important nutrients with such a restricted diet and that could cause other problems. I agreed. I told him that I was trying to add some foods and he said "You have to be careful because there might be gluten in them." I almost fell of my chair and asked him if he counsels his MC patients to avoid gluten. He said he does while waiting for the test results because you never know if they might have celiac disease. If it helps, then great.
He didn't think that my mouth sores had anything to do with my MC. I openly pondered if perhaps I should see an endocrinologist. He said stress or many other things can cause them. Sigh.
When I left, he told me that it truly bothers him when he has patients that are suffering and he's unable to help them. He said there is still a lot that the medical profession doesn't know about these diseases. I'm sad that my visits seem to benefit him more than they do me.
Gloria
Other medications that are associated with an increased risk of collagenous colitis and lymphocytic colitis include the proton pump inhibitor called lansoprazole (Prevacid), the selective serotonin reuptake inhibitor called sertraline (Zoloft), the anti-platelet medication called ticlopidine (Ticlid), the H-2-receptor blocker called ranitidine (Zantac), and the type 2 diabetes medication called acarbose (Precose).
http://www.mayoclinic.com/health/collag ... %2Dfactors
He eagerly grabbed it and read it and thanked me for it, saying he was on their website all the time, but hadn't read that.
When it became clear that I wouldn't submit to a colonoscopy unless he could justify it, he told me that there could be other things going on that he could tell from a colonoscopy which wouldn't be revealed from a sigmoidoscopy. Then he began to ask me the same symptom questions that he asked three years ago to rule out Chron's, UC, etc. I realized (and said) that he basically wanted to do a colonoscopy for exploratory reasons. I told him that if he was looking for flattened villi, I probably didn't have them because I have never had malabsorption. At that point he looked at me and said that although I've done a lot of reading, and that's good, he was an MD. and I wasn't. I guess he doesn't want me to know too much!
I told him I was doing better and that I understood that the best time to determine Mastocytic Enterocolitis is when the patient has active reactions. I asked if it would be better to wait until I was not doing well before he did a biopsy. He agreed and that's how we left it. I will call him if I have a relapse and he will do a sigmoidoscopy.
He, like my PCP, is concerned about my weight. He told me that I could be eliminating many important nutrients with such a restricted diet and that could cause other problems. I agreed. I told him that I was trying to add some foods and he said "You have to be careful because there might be gluten in them." I almost fell of my chair and asked him if he counsels his MC patients to avoid gluten. He said he does while waiting for the test results because you never know if they might have celiac disease. If it helps, then great.
He didn't think that my mouth sores had anything to do with my MC. I openly pondered if perhaps I should see an endocrinologist. He said stress or many other things can cause them. Sigh.
When I left, he told me that it truly bothers him when he has patients that are suffering and he's unable to help them. He said there is still a lot that the medical profession doesn't know about these diseases. I'm sad that my visits seem to benefit him more than they do me.
Gloria
You never know what you can do until you have to do it.
Gloria,
I suspect that he may be stretching the truth a mite, about the Latin meaning of the medical prefix "entero". Entero-, or enter- is a medical prefix, used to refer to the intestine, or enteritis, [New Latin, from the Greek word "enteron", which means "intestine"]. The Greek word "enteron" apparently means within, which could be loosely interpreted to mean inner, I suppose, but normal medical usage seems to simply refer to the intestine.
From the definition of medical prefixes:
If the "entero" in the name "Mastocytic Enterocolitis" had been intended to refer to "inner", the chosen prefix would probably have been "intra", meaning within - into.
I know precious little about Latin, (not a heck of a lot of people do, these days), but I think the implication of the prefix "entero", is simply a reference to the intestine. Reading anything more into it, is probably grasping at straws. The Greek word "enteron" might mean more, (it might possibly be interpreted to mean inner), but the Latin prefix is much simpler than that, IMO.
I think you're right - he's just fishing, but at least he's interested in learning, and that's worth a lot, IMO.
Of course, I could be all wet.
Incidentally, I don't believe that a used slide would be re-stained in most cases where a sample needs to be prepared with a "new" stain, before being re-examined. Instead, a new slide would be made from a remaining sample of tissue, (from the previous biopsy samples), and that specimen would be prepared with the "new" stain. Again, I could be all wet, but that's how I would go about it, if I were assigned that job.
Tex
I suspect that he may be stretching the truth a mite, about the Latin meaning of the medical prefix "entero". Entero-, or enter- is a medical prefix, used to refer to the intestine, or enteritis, [New Latin, from the Greek word "enteron", which means "intestine"]. The Greek word "enteron" apparently means within, which could be loosely interpreted to mean inner, I suppose, but normal medical usage seems to simply refer to the intestine.
From the definition of medical prefixes:
http://www.medterms.com/script/main/art ... lekey=7914entero-: Combining form pointing to the intestine (the gut). "Entero-" comes from the Greek word "enteron" for intestine, related to the Greek "enteros" meaning "within." What went into the intestine was within the body.
If the "entero" in the name "Mastocytic Enterocolitis" had been intended to refer to "inner", the chosen prefix would probably have been "intra", meaning within - into.
I know precious little about Latin, (not a heck of a lot of people do, these days), but I think the implication of the prefix "entero", is simply a reference to the intestine. Reading anything more into it, is probably grasping at straws. The Greek word "enteron" might mean more, (it might possibly be interpreted to mean inner), but the Latin prefix is much simpler than that, IMO.
I think you're right - he's just fishing, but at least he's interested in learning, and that's worth a lot, IMO.
Of course, I could be all wet.
Incidentally, I don't believe that a used slide would be re-stained in most cases where a sample needs to be prepared with a "new" stain, before being re-examined. Instead, a new slide would be made from a remaining sample of tissue, (from the previous biopsy samples), and that specimen would be prepared with the "new" stain. Again, I could be all wet, but that's how I would go about it, if I were assigned that job.
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.
I took Latin in public school. I think in 8th, 9th and 10 grades. I sure don't remember it but it was really helpful with English vocabulary. It seems to me that I struggled with translation until someone introduced me to a "pony". Somehow, it really helped me learn the language on my own.
Gloria, your doc is no different than most. You are getting your way, thank heavens.
Gloria, your doc is no different than most. You are getting your way, thank heavens.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Gabes-Apg
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- Location: Hunter Valley NSW Australia
Gloria
i am proud that you went there, fully informed, asked questions as to the basis of his decisions and made him justify that the outcome would have benefit for you (not just for him)
Wish the day had better outcomes for you -
i am proud that you went there, fully informed, asked questions as to the basis of his decisions and made him justify that the outcome would have benefit for you (not just for him)
the cynic in my cant help but wonder if doctors feel that a way because there is not a single drug solution to these type of conditions, they cant make the symptoms magically disapear.When I left, he told me that it truly bothers him when he has patients that are suffering and he's unable to help them. He said there is still a lot that the medical profession doesn't know about these diseases. I'm sad that my visits seem to benefit him more than they do me.
Wish the day had better outcomes for you -
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
That seems to be true for ever profession except for medicine. Interestingly, over the ages, medicine has managed to retain somewhat of an air of sorcery, (at least, in the eyes of many of it's patrons), that it doesn't seem anxious to divest.Ant wrote:when I cannot help a client I don't get paid, and any time I spend is written off.
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.
Gloria! Way to go, girl! I hereby confer upon you the honorary title of "knowing more about MC than your GI doc". It's great that you held your ground against unnecessary tests.
Love,
Polly
P.S. You asked me sometime earlier if I have trouble with chicken. I don't think so but will pay close attention for a while to see. We eat more turkey, fish, and other animal proteins than chicken, for some reason, so maybe I'm missing it.
Love,
Polly
P.S. You asked me sometime earlier if I have trouble with chicken. I don't think so but will pay close attention for a while to see. We eat more turkey, fish, and other animal proteins than chicken, for some reason, so maybe I'm missing it.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
JoAnn the fact that you put weight back on is good. You could definitely be right about the turkey and the chicken association and once you have a bad experience, who wants to try that again! I use to complain about my stomach and now I wish I had one! One day I might try getting on Entocort again, but I will have to put at least 5-7 pds back on before I try again. Keep us posted; I care about how you are doing.
Grannyh, I am with you............cannot afford to go back to square one! I have to work and like JoAnn, I probably would not be able to work if it was not for Entocort and this great group of people. I hate to think where I would be if I had not found this website; I was so sick even with meds.
Gloria, as I have told you before you are my inspiration. You have the determination and perseverance that I am beginning to acquire. I had to go through 2 colonoscopes 6 months apart because I had an ignorant GI the first time. The second one at least listens and does not poo-poo the diet. He is only interested in many getting well and does not push the meds, but will prescribe. The fact that you are improving is a big yes
I know for both of us getting down to very selected foods has help narrow the intolerances. Now if we only could put weight on! Much love and peace, Ginny
Grannyh, I am with you............cannot afford to go back to square one! I have to work and like JoAnn, I probably would not be able to work if it was not for Entocort and this great group of people. I hate to think where I would be if I had not found this website; I was so sick even with meds.
Gloria, as I have told you before you are my inspiration. You have the determination and perseverance that I am beginning to acquire. I had to go through 2 colonoscopes 6 months apart because I had an ignorant GI the first time. The second one at least listens and does not poo-poo the diet. He is only interested in many getting well and does not push the meds, but will prescribe. The fact that you are improving is a big yes
I know for both of us getting down to very selected foods has help narrow the intolerances. Now if we only could put weight on! Much love and peace, Ginny