I had my yearly colonoscopy just over 2 weeks ago and finally have all of the results
-Crohns: Well under control with minimal inflammation.
-MC(CC): Overall little change in collagen band thickness since the limited samples taken during the surgery last December. Overall the average was down to 10um with the higher numbers witnessed in the right side of the colon.
-Mast cells: negative (esophageal, gastric and colonic)
Now that the good news out the way, like several others have mentioned, after a colonoscopy they can go into a flare up of some degree. These past couple of weeks it has kicked in quite a bit, with a focus on last week. I have also noticed a range of secondary symptoms sometimes associated with Crohns, which include lower back pain, iritis and now knee pain. To counter this as the lower back pain was quite significant, I was on a short course of methylprednisolone (Medrol dose pack) followed by a prescription for entocort.
There has been a suspicion that I do have other autoimmune issues at work here and I will be seeing a rheumatologist in early June. I had blood work this week to see how my immune system is doing and to look for the genetic markers of ankylosing spondylitis. The early suspicions are for AS, which is a autoimmune condition that affects the joints, specifically in the spine. I have had a history of pain in the joints most often affected and AS is sometimes see with Crohns.
Colonoscopy Results & a Bit More
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Joe,
What's your current 25(OH)D level? IMO, you need to get that puppy up into at least the 50 to 80 ng/mL range, if you're ever going to get your immune system to start kickin' the right asses, and leave the ones that don't need kickin', alone. I realize that you're on an immune system suppressant, but I don't believe that will prevent you from strengthening your immune system - it will just prevent your immune system from flexing it's muscles. IMO, it's not your immune system that's your enemy - your immune system is the victim of a complex issue that began with a vitamin D deficiency, and now it's caught in the crossfire.
I'm concerned, (as I'm sure your are, also), that the status quo is allowing other autoimmune issues to run amuck.
I wish that my book were already published, but, unfortunately, it's not quite finished, so I can't just point to it. The bottom line, though, is that (IMO - especially since you have CC, rather than LC), virtually all of your inflammation is due to mast cell issues. I'm not sure how Imuran works - I'm not sure that anyone knows. Most claims vaguely state that it suppresses the immune system. IMO, if it doesn't actually prevent the proliferation and degranulation of mast cells, it's not truly controlling your inflammation, and it's not preventing the development of additional autoimmune issues.
Corticosteroids do suppress mast cell numbers - that's a fact. The problem is, we have to have a certain level of mast cell activity, or nothing can heal properly, and other normal body processes may not be able to proceed normally. The key is proper regulation, (but of course, at this point in medical technology, no one really understands how to reliably and accurately achieve that goal).
Incidentally, the right side colon, is typically the location of maximum MC activity, but that seems to be going relatively well. In fact, everything may be going well, except for the overall autoimmune environment, and as I'm sure you're well aware, that can turn out to be the 500 pound gorilla in the room. Hopefully, the mast cell data from all the biopsies will shed some light on this.
Thanks for the update,
Tex
What's your current 25(OH)D level? IMO, you need to get that puppy up into at least the 50 to 80 ng/mL range, if you're ever going to get your immune system to start kickin' the right asses, and leave the ones that don't need kickin', alone. I realize that you're on an immune system suppressant, but I don't believe that will prevent you from strengthening your immune system - it will just prevent your immune system from flexing it's muscles. IMO, it's not your immune system that's your enemy - your immune system is the victim of a complex issue that began with a vitamin D deficiency, and now it's caught in the crossfire.
I'm concerned, (as I'm sure your are, also), that the status quo is allowing other autoimmune issues to run amuck.
I wish that my book were already published, but, unfortunately, it's not quite finished, so I can't just point to it. The bottom line, though, is that (IMO - especially since you have CC, rather than LC), virtually all of your inflammation is due to mast cell issues. I'm not sure how Imuran works - I'm not sure that anyone knows. Most claims vaguely state that it suppresses the immune system. IMO, if it doesn't actually prevent the proliferation and degranulation of mast cells, it's not truly controlling your inflammation, and it's not preventing the development of additional autoimmune issues.
Corticosteroids do suppress mast cell numbers - that's a fact. The problem is, we have to have a certain level of mast cell activity, or nothing can heal properly, and other normal body processes may not be able to proceed normally. The key is proper regulation, (but of course, at this point in medical technology, no one really understands how to reliably and accurately achieve that goal).
Incidentally, the right side colon, is typically the location of maximum MC activity, but that seems to be going relatively well. In fact, everything may be going well, except for the overall autoimmune environment, and as I'm sure you're well aware, that can turn out to be the 500 pound gorilla in the room. Hopefully, the mast cell data from all the biopsies will shed some light on this.
Thanks for the update,
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.
Joe,
OK, I see you edited your original post, (pertaining to mast cells). Exactly what does "negative" mean? In your case, does it mean normal levels, or does it mean levels not high enough to trigger a diagnosis of mastocytic enterocolitis? Normal levels are typically 5 to 7 mast cells per 100 enterocytes. 20 would be required for a diagnosis of ME.
I'm guessing that your levels fall somewhere in between, which would clearly be elevated, but not diagnostic, (but a diagnosis of ME is somewhat irrelevant, IMO).
Tex
OK, I see you edited your original post, (pertaining to mast cells). Exactly what does "negative" mean? In your case, does it mean normal levels, or does it mean levels not high enough to trigger a diagnosis of mastocytic enterocolitis? Normal levels are typically 5 to 7 mast cells per 100 enterocytes. 20 would be required for a diagnosis of ME.
I'm guessing that your levels fall somewhere in between, which would clearly be elevated, but not diagnostic, (but a diagnosis of ME is somewhat irrelevant, IMO).
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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Joefnh
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Tex sorry about the late edit but as mentioned above, I had forgotten to mention that the mast cell levels were negative (just edited the first post)
I'm not sure of the levels yet, I asked today for clarification. I'm having the blood test for vitamin D next week.
Actually I think the mechanism of imurans action is fairly well understood as its a purine synthesis inhibitor. It's a pro drug that uses the cellular xanathine oxidase pathway to form a metabolite that inhibits the replication of white blood cells
http://en.wikipedia.org/wiki/Azathioprine
Overall I'm happy that the GI issues are doing well and improving, but as mentioned the 800 pound gorilla is still making noise.
I'm not sure of the levels yet, I asked today for clarification. I'm having the blood test for vitamin D next week.
Actually I think the mechanism of imurans action is fairly well understood as its a purine synthesis inhibitor. It's a pro drug that uses the cellular xanathine oxidase pathway to form a metabolite that inhibits the replication of white blood cells
http://en.wikipedia.org/wiki/Azathioprine
While Imuran (azithioprine) is not a panacea, no medication is, they all hopefully provide benefit. In my case and many with IBDs it does and can reverse the disease state as I have seen a significant reduction in ulcerations and inflammation. I believe this med and a series like these are called DMARDs - Disease Modifying Antirheumatic Drugs. Certainly it does not mean that you can't and should also address and benefit from dietary changes as well, these meds are just tools in the toolbox.Azathioprine is a pro-drug; following oral ingestion, it is metabolized into the active 6-mercaptopurine, itself a purine synthesis inhibitor. 6-Mercaptopurine impedes DNA synthesis and thus inhibits the proliferation of cells, especially the fast-growing lymphocytes. T-cells and B-cells are particularly affected by the inhibition of purine synthesis. Azathioprine is an effective drug used alone in certain autoimmune diseases, or in combination with other immunosuppressants in organ transplantation. Azathioprine blocks the downstream effects of CD28 costimulation. 6-MP (the active metabolite) interacts directly with GTP-binding protein Rac1, thus blocking upregulation of BCL-xl mRNA and protein. In vivo data indicate inflammatory bowel disease patients treated with azathioprine have more apoptotic mononuclear cells than untreated controls, indicating this mechanism may be responsible for the in vivo response to the drug in this disease.[1]
Overall I'm happy that the GI issues are doing well and improving, but as mentioned the 800 pound gorilla is still making noise.
Joe
Joe,
That's the problem, mast cells are not leukocytes, so presumably they are not suppressed by Imuran. Leukocytes are only a part of the problem with autoimmune disease. IMO, mast cells dominate autoimmune issues. That's why treatments with conventional immune system suppressants don't provide complete, long-term results.
I'm not trying to say that they don't help to control symptoms, I'm just saying that they don't appear to have a way to protect against additional autoimmune development.
Tex
That's the problem, mast cells are not leukocytes, so presumably they are not suppressed by Imuran. Leukocytes are only a part of the problem with autoimmune disease. IMO, mast cells dominate autoimmune issues. That's why treatments with conventional immune system suppressants don't provide complete, long-term results.
I'm not trying to say that they don't help to control symptoms, I'm just saying that they don't appear to have a way to protect against additional autoimmune development.
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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Joefnh
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Overall though I'm glad these medicines are available Tex, as they do provide a tool for helping to manage these conditions, many of them seriously affecting the quality of life. Nothing's going to be perfect except for health itself, but when that fails having these options as well as the dietary knowldge is important.
I do agree Tex, I wish there were a better solution. For me it's going to be following a strict diet, dietary testing and using the meds as needed. Hopefully one day there will be a better answer.
I do agree Tex, I wish there were a better solution. For me it's going to be following a strict diet, dietary testing and using the meds as needed. Hopefully one day there will be a better answer.
Joe
Joe. I hope the latest flares pass quickly and you get better fast. You know your diet and how to control it.
Sorry about the AK, though if memory serves, the average age for it to hit is around 23 in males. No wonder you look so good!
I know that the medications for this condition are pretty advanced and can keep pain pretty much in check. I hope that you can take them, and they give you relief.
Sorry about the AK, though if memory serves, the average age for it to hit is around 23 in males. No wonder you look so good!
I know that the medications for this condition are pretty advanced and can keep pain pretty much in check. I hope that you can take them, and they give you relief.
Joe,
I'm glad the Crohn's is under control. I'm surprised about the mast cell diagnosis because you had indicated that an antihistamine was helping, as I recall. Were you taking an H1 blocker at the time of the colonoscopy? Could it have suppressed the mast cells for the examination? I'm sure you've considered that possibility - just thought I'd ask.
Gloria
I'm glad the Crohn's is under control. I'm surprised about the mast cell diagnosis because you had indicated that an antihistamine was helping, as I recall. Were you taking an H1 blocker at the time of the colonoscopy? Could it have suppressed the mast cells for the examination? I'm sure you've considered that possibility - just thought I'd ask.
Gloria
You never know what you can do until you have to do it.
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MaggieRedwings
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Joefnh
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Thanks Kitty, Gloria, tex and Maggie for the good wishes...it is what it is and should settle down soon with the entocort.
Lesley your far too kind...I'm actually 46 so I guess I beat the statitical odds on AS LOL. Although I do have a long history of SI low back pain which may very well have been the early undiagnosed stages. Next stop the rheumatologist...
Gloria, the answer is that I have been seeing a benefit from H1 and H2 blockers. Now I had stopped them a week prior to the scopes, but when I asked my GI doc about mast cells the day of the colonoscopy, he did mention that they can only be counted if they had not degranulated, so I'm wondering if stopping the antihistamines was a good idea. Of course I wonder if the colonoscopy prep degranulated the mast cells?
Lesley your far too kind...I'm actually 46 so I guess I beat the statitical odds on AS LOL. Although I do have a long history of SI low back pain which may very well have been the early undiagnosed stages. Next stop the rheumatologist...
Gloria, the answer is that I have been seeing a benefit from H1 and H2 blockers. Now I had stopped them a week prior to the scopes, but when I asked my GI doc about mast cells the day of the colonoscopy, he did mention that they can only be counted if they had not degranulated, so I'm wondering if stopping the antihistamines was a good idea. Of course I wonder if the colonoscopy prep degranulated the mast cells?
Joe