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It has been awhile but I have been reading message boards everyday. I'm just going to jump into all this. Had emergency hernia surgery in October and so hoped that would ease my BM problems. No such luck
Have changed diet eliminated any foods if I found they caused D. They have me on librax. Donnatal. And questran, and I'am still going at least 7+ times a day. The questran hardens everything up but does not stop it. So instead of BM being mushy it is rock hard and painful.
I fired my uncaring and clueless GI and have an appointment next week with a new one who is highly recommended. In the process I have obtained all my test records. There is no mention of MC??? However notes on the 2 colonoscopies, sigmoidoscopy upper GI had many things. I had been told they all showed nothing
Some of the findings. Aphthous ulcers, proctitis,hyperplastic lymphoid,ischemia. Abnormal esophageal motility, Gallstones. The crohns panel showed raised levels. Some of the words I was able to understand some not. At my final visit I was told I had IBS and should control my stress to help cure it.
Not sure what I'm asking here but if anyone has any thoughts please jump in. I'm just tired of constantly letting the need for a bathroom control my life.
Back to you. I sure hope a new doc will be able to help you.
Around here, we can't fire docs (specialists) because new ones won't take us and say, "You are already being treated." It happened to me when I wanted to change GI doctors to my DH's. It also happened to a friend who had to go to another city for care.
DISCLAIMER: I am not a doctor and don't play one on TV.
I'm sorry that you're still having symptoms. Have you tried taking antihistamines? Many of us here have discovered that antihistamines can help to control the D, because we have mast cells problems that lead to too much histamine in circulation. If taking an antihistamine seems to help, then you probably also need to avoid foods that have a high histamine content. The links in the thread at the following link lead to several articles that provide more information on mast call issues and how they relate to MC (or other gastrointestinal disorders):
P. S. If you care to post the exact wording of your pathology report/s (or PM the information to me), I should be able to tell whether or not it contains any findings that might either indicate or rule out MC (or other problems).
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.
Hello Tex, hope all is well by you. Basically that is what the report said. Aphthous ulcers, proctitis,surface epithelial mucosal gland loss, laminate propria edema suggestive of ischemia. The. Crohns had elevated 2-ELISA and mutation detected heterozgous. No mention of MC. Thanks for taking a look, let's hope the next GI has a clue.
Hi Kitty. When you got your colonoscopies, did they take biopsies? if not, then they could not have dx MC. I hope your new doctor is better. if the new one decides to do another colonoscopy, ask them to use a tryptase stain so they can see what your mast cell count is ( wish i knew to ask when I had mine).... maybe you have Mastocytic Enterocolitis?
good luck and let us know what happens
Leah
yes that is why they did the second colonoscopy, to do biopsies, I guess a new GI will want his own test and at some point if I feel any confidence in him, I'll agree. I certainly will suggest the stain.
I will let you know and thank you for the information.
Hello Tex, hope all is well by you. Basically that is what the report said. Aphthous ulcers, proctitis,surface epithelial mucosal gland loss, laminate propria edema suggestive of ischemia. The. Crohns had elevated 2-ELISA and mutation detected heterozgous. No mention of MC. Thanks for taking a look, let's hope the next GI has a clue.
I will try the antihistamine. Couldn't hurt
Hugs,
kK
Hmmmm. Never seen one that brief. You're right, there's no hint that the pathologist even looked for MC (and they can't find it if they don't specifically look for it). The comment about "surface epithelial mucosal gland loss" suggest something other than MC. It's possible that it could be associated with long-term damage caused by untreated gluten sensitivity, but it's often associated with the other types of IBD.
Since edema means swelling, I wonder if he/she could have misinterpreted thickened collagen bands in the lamina propria for simple edema. Thickened collagen bands would be clearly diagnostic of collagenous colitis. Also, proctitis involves the same type of lymphocytic infiltration as lymphocytic colitis, so I wonder if he/she could have misinterpreted the markers of LC as proctitis. IOW, it's possible that the pathologist may simply not have been familiar with the diagnostic criteria for the various types of MC.
Hugs,
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.
Tex, I cant' help wondering if he gave me my complete medical records. Also, from the very beginning I heard from a few close friends who are health professionals, that he is not good at diagnosing?? I always had the feeling there was something about him no one was telling.
Thank you all so much. I will let you know how this plays out.
Actually, that report sounds more like a GI doc's own summary of his or her opinion of a pathology report, rather than the pathology report itself. The actual pathology report should list specific details about the individual samples before and after examination under the microscope. It should include the pathologist's diagnosis, and it should be signed by the pathologist.
Some GI specialists have a bad habit of ignoring the pathologist's diagnosis, and they either claim that "everything was normal" or they conjure up a diagnosis of their own, often IBS, when they don't know anything about MC, and they consider it to be a "rare" disease.
Hugs,
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.
Kitty certainly making sure your new doctor has all of the records including the pathology reports are important. If it has not already been done I would ask for a fairly sensitive and accurate blood test that looks for active Crohn's disease which is run by Prometheus labs, it's considered the gold standard for testing Crohns these days. As mentioned a colonoscopy even if its a repeat is a good idea.
Your last GI doc sounds awful, I hope the new one is on top of his game.
Take care, I hope you can find the answers and treatments soon
Back to you. I sure hope a new doc will be able to help you.
It happened to me when I wanted to change GI doctors to my DH's. It also happened to a friend who had to go to another city for care.
