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My GI requested an office visit before he would refill my Entocort last month. I brought the article on Mastocytic Enterocolitis with me: http://www.patho-bonn.de/documents/0000 ... olitis.pdf and gave it to him. He always listens carefully to what I say, and told me last year that I could teach some seminars. I asked him if he was familiar with it and he said he'd heard of it. I pointed out that the authors are with Rush University in Chicago and mentioned that he might know some of them. I was hoping that would give the article some credibility and perk up his interest. He said he did know one of the authors.
I asked him if my biopsy was still available and he said it might be. I asked him if he could apply the stain to the biopsy to check for excess mast cells. He said he'd need to read more about it before he made a decision. I told him he could keep the article. I told him that I thought that any time a biopsy was done to confirm MC, a stain should automatically also be done to determine if a patient also has Mastocytic Enterocolotis. I waited for 5 weeks and didn't hear from him, so I called his office this week and asked if he'd read the article and had done the stain. Today I received a call from his office and he wants me to have another colonoscopy and biopsy. No explanation why.
I told the woman who called that I wouldn't do another colonoscopy unless I knew why he wanted to do it. I said if he only wanted to confirm that I still had LC, I could answer that question - no biopsy needed. Besides, he only needed to do a sigmoidoscopy to get the biopsy sample last time. Why another colonoscopy?
Since I refused to go along with the exam without some justification, she made an appointment for me to talk to him. It may be that my followup call prompted him to read the article. Hopefully he called the authors of the article and that's why he wants to get new biopsy to stain. But I think he should tell me what his plans are. And I'm sure going to argue for a sigmoidoscopy instead.
Gloria
You never know what you can do until you have to do it.
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.
Wow Gloria!!!! What a proactive stand you are taking and you should be very proud! I need to learn from your example to be more like that. I hope you get the results you are looking for.
-Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain-
Kim
Hi Gloria, what you describe I recognize so well, only in a milder version. Because I found out here, there was the possibility of osteo, I asked for a dexa scan. In my last visit I asked my GI, I asked if if I was also tested for other auto immune diseases (I just wanted to know that, to rule out other possible health issues), of course not, so that happened a couple of weeks ago (all fine).
It is my conviction, that you have to be your own doctor, I don't mean this in a cynical way, no in a serious way. Of course together with your GI and/or PCP, but do your own research and keep on asking why certain things are needed.
I agree with everyone else that you need to really take a stand with the doctors. It is also important to know why they want to do the procedures again.
Good luck and sure hope he read the article.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
I've been absent from here for a while, but do I understand that you are doing better after discovering a chicken intolerance? What terrific news! I am having a colonoscopy Fri. a week - my 5-year check (I have had polyps and my dad died from colon cancer, so I have to have one every 5 years).
Good for you for taking an assertive stand - it seems to be necessary for overcoming MC. Sigh. My only question (and I admit I didn't read the article carefully) is: will the stain work on an old (driedup) slide or is it only effective when done on a fresh specimen?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Good luck with your colonoscopy. The prep is the worst part, isn't it?
It is possible that the previous biopsy may not take the stain as well because it is three years old. That's one of the questions I will be asking my GI. A sigmoidoscopy would suffice for the biopsy, however. I have a feeling that he wants to look at my villi to see if I have damage in order to verify I'm not a celiac. I mentioned that I was GF a couple of years ago and he's been curious since. I don't think he understands that people can have gluten sensitivity. I will refuse a colonoscopy if that is his reasoning. I've been GF, SF, DF and EF for three years.
The chicken intolerance was a big revelation. It either damaged me sufficiently that I can't handle most foods, or I had problems with them before and didn't realize it. If you look at my avatar, I'm unable to eat many additional foods. Some give me mouth sores, and some give me immediate intestinal problems.
I am getting concerned that my weight is getting too low - 94 lbs. today. My PCP is also troubled by my weight loss and told me I should go to a teaching hospital where they handle the more difficult cases. The authors of the article are from Rush Presbyterian, a teaching hospital in Chicago, but it is out of my insurance plan. It's surprising that Entocort doesn't seem to be doing the job for me anymore. If I have a mast cell problem, I should be taking antihistamines or a different prescription.
I am hoping that I'm healing again, albeit slowly. I'm sure that once I'm healed, I'll be able to add more foods and more weight.
Gloria
You never know what you can do until you have to do it.
Hi Gloria, I'm sorry you're still having to go through so much, but happy that you feel like you're back on track. The chicken thing is really interesting and I didn't connect it with eggs until you mentioned it. I thought I was the only one on the board who couldn't eat chicken. I kept trying it and finally realized that I react to it no matter how "pure" it might be. Since my big flare last Dec/Jan, I've been very careful about everything I eat. I don't seem to react to eggs when they are in baked products, but I really have avoided them the past 6 months even in baked foods. I know that it has been discussed here that Entocort allows some people to eat "forbidden" foods and mask their sensitivities, but it sure doesn't work for me like that. Even though I take Entocort, I still have to be very vigilant about my diet. If I consume something by accident that has one of my intolerances, my body reacts. I don't ever want to have a flare again like I did last winter, so I've taken things very slowly and if I feel like I've consumed something that bothers me, I take an extra entocort. I'm taking 1 capsule every other day, and will try to stop completely next week. But if I feel like I'm slipping, I'll go back on. I think my experience is similar to Ant's in that I have a few days of adjustment with each decrease. Prayers and best wishes are with you as you continue to figure things out for yourself. Your experience and support have been a great help to me. Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
It's great that you'll be getting off Entocort next week. Hopefully you'll continue to retain your remission.
It is interesting how the egg and chicken intolerances seem to go hand in hand for us. It might be a good idea to recommend to everyone with an egg intolerance to also avoid chicken. I didn't eat chicken very much other than chicken broth. I always used Boar's Head turkey instead. That probably helped disguise that chicken was a problem.
I, too have been extremely vigilant about my diet and, like Harma and a few others am only eating about 10 different foods. It's hard because there isn't anything I can snack on, but I get through each day and am beginning to see some progress at last. As we've written before, it's important to have hope and I have hope again.
Gloria
You never know what you can do until you have to do it.
Gloria, I've been away for a couple of weeks and it is so good to hear of your improvement. Hope is the most important thing. Like most of us with a more "severe" problem I am also down to very few foods, but the weight loss keeps happening and I know you were having the same problem. Have you gotten this under control? I need to add back some foods that have calories or fat, but of course not having D is more important. It is such a battle; no D or weight loss I'm always looking for ideas.
JoAnn, I have been thinking about you and your progress with getting off Entocort. Good for you to try again. I am still on one a day and not ready to move to every other day yet. My issue really is I can not afford to have another relapse and lose more weight. Hope it works out for you this time. Ginny
Visit the Microscopic Colitis Foundation Website
I asked him if he was familiar with it and he said he'd heard of it. I pointed out that the authors are with Rush University in Chicago and mentioned that he might know some of them. I was hoping that would give the article some credibility and perk up his interest. He said he did know one of the authors.
I'm always looking for ideas.