Hello Everyone,
It's a pretty fall Sunday in Indiana. Thought I would give you all an update on me. Your collective insight is always welcome.
The most interesting is that at my last colonoscopy, with multiple biopsies, my GI doc tells me there was no sign of lymphocytic colitis ????????? Admittedly, I have not been 100% compliant on my diet - I try, but not with the verve of the rest of you. So I don't understand that result at all. Not sure what to make of it. And he took a lot of biopsies.
Anyways, I have been seeing a PT for a month for what my colorectal doc believes is non-relaxing puborectalis, a pelvic floor dysfunction where the pubic muscle sling is chronically contracted. Now I know I have told all of you before about my symptoms on feeling like I have to go to the bathroom most of the time, and that I have what feels to be incomplete evacuation, multiple bathroom visits, flat stool, etc. So I found a local PT who is trying her darndest to try to help me.
My Colorectal doc says she can inject Botox into that muscle to try to relax it from its contracted state. But the results are mixed and temporary. But in October, I may give her the go ahead to try this. At least for diagnostic purposes.
I am chronically bloated and distended in my abdomen. And for my thin frame, it can be quite obvious at times... not to mention the discomfort it imposes. My morning bowel movements are, first, relatively formed (thought flat) to looser, and looser, and harder to expel. This causes inflammation in my rectum and sometimes it feels acidic. I have to resort to a warm water enema at times to try to clear out.
So these are the joys of my present situation. Still trying to find a way to slow down at work, and I have a bit. But it is scary to slow down too much because doctors and physical therapists are very very pricey.
I'd love to hear from the rest of you and how you are all doing, and if you have any advice for me at this juncture, I would love to hear it.
Checking in...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Checking in...
"It's not what I believe. It's what I can prove." - A Few Good Men
Hi Rich,
It's good to see an update from you again, but I'm sorry to see that you're still plagued by the same old same old. I gather that the GI department at the Mayo Clinic hasn't exactly been able to resolve your issues either.
Since you asked for opinions, as you are well aware I usually have one
, so here's my 2 cents worth. Remember that this is strictly my theory, and nothing more.
IMO, in some cases, if we torment our immune system long enough with traces of food to which we are sensitive, our immune system eventually "learns" and sort of tones down it's response. This is the do-it-yourself equivalent of oral immunotherapy treatment — a form of induced tolerance. The treatment does not resolve the underlying sensitivity, but it reduces some of the symptoms by reducing at least some of the immune system responses. This could certainly explain a reduced level of lymphocyte infiltration into the mucosal tissue of your colon, for example.
Your lymphocyte count dropped, for the reason that I stated above, so that it is no longer sufficient to meet the diagnostic requirement for LC (20 lymphocytes or more per 100 enterocytes). But here's the problem — a "normal" colon has less than 10 lymphocytes per 100 enterocytes. The area between these two arbitrary limits is an undefined state. It's definitely not normal, and it's definitely not LC (by arbitrary definition). So what is it?
I find it incredible that no one ever bothered to try to define this area of elevated lymphocyte infiltration, and it's implications for MC and other GI issues.
It so happens that a form of MC has been described (years ago) that is marked by a lymphocyte count that falls within the range of 10–20 lymphocytes per 100 enterocytes. It's called paucicellular LC, but like Rodney Dangerfield used to always say, "it gets no respect", and doctors continue to just ignore it. Probably because they never bothered to learn about it.
But the problem with paucicellular LC is that the researchers who originally described it proclaimed it to be a unique form of MC, separate and distinct from LC. Really? Does that make sense? You and I both know that before the inflammation that causes LC can push the lymphocyte count up to where it meets the official medical definition of LC, the lymphocyte count has to pass through that range (10–20 lymphocytes per 100 enterocytes) in order to get to a diagnostic level. And when properly treated, as the lymphocyte count declines, it has to pass through that range again. Why is that so difficult/impossible for doctors and medical researchers to understand? Do they actually think that the jump occurs instantaneously? Most likely it takes months to make the complete transition. But who knows? It certainly doesn't occur overnight.
Anyway my point is, I'm guessing that your lymphocyte count now falls within this medical "no man's land". Therefore your doctor can claim that you do not have LC. But on the other hand, I'll bet a GF cookie that he cannot provide proof that your colonic histology is back to normal (with a normal lymphocyte count), either.
But here's my assessment of your overall GI and pelvic floor situation, FWIW:
I think it's nerves — part of your body's response to years of chronic stress. For some of us, stress goes straight to our gut. In your case, it didn't stop there — it went all the way to the pelvic floor. I'm sure you realize that your work is extremely stressful, but I have a hunch that it's even more stressful than you realize. Not only is your work and the everyday lifestyle that goes with it stressful, but zillions of dollars rest on your decisions/judgements, and those decisions result in extremely stressful outcomes for others, the recognition of which surely greatly compounds your own stress level.
As for my condition, other than gettin' older, uglier, and more forgetful, I seem to be doing OK.
Tex
It's good to see an update from you again, but I'm sorry to see that you're still plagued by the same old same old. I gather that the GI department at the Mayo Clinic hasn't exactly been able to resolve your issues either.
Since you asked for opinions, as you are well aware I usually have one
, so here's my 2 cents worth. Remember that this is strictly my theory, and nothing more.IMO, in some cases, if we torment our immune system long enough with traces of food to which we are sensitive, our immune system eventually "learns" and sort of tones down it's response. This is the do-it-yourself equivalent of oral immunotherapy treatment — a form of induced tolerance. The treatment does not resolve the underlying sensitivity, but it reduces some of the symptoms by reducing at least some of the immune system responses. This could certainly explain a reduced level of lymphocyte infiltration into the mucosal tissue of your colon, for example.
Did you get an actual lymphocyte count? Here's what almost surely happened, I'm guessing:Rich wrote:The most interesting is that at my last colonoscopy, with multiple biopsies, my GI doc tells me there was no sign of lymphocytic colitis ?????????
Your lymphocyte count dropped, for the reason that I stated above, so that it is no longer sufficient to meet the diagnostic requirement for LC (20 lymphocytes or more per 100 enterocytes). But here's the problem — a "normal" colon has less than 10 lymphocytes per 100 enterocytes. The area between these two arbitrary limits is an undefined state. It's definitely not normal, and it's definitely not LC (by arbitrary definition). So what is it?
I find it incredible that no one ever bothered to try to define this area of elevated lymphocyte infiltration, and it's implications for MC and other GI issues.It so happens that a form of MC has been described (years ago) that is marked by a lymphocyte count that falls within the range of 10–20 lymphocytes per 100 enterocytes. It's called paucicellular LC, but like Rodney Dangerfield used to always say, "it gets no respect", and doctors continue to just ignore it. Probably because they never bothered to learn about it.
But the problem with paucicellular LC is that the researchers who originally described it proclaimed it to be a unique form of MC, separate and distinct from LC. Really? Does that make sense? You and I both know that before the inflammation that causes LC can push the lymphocyte count up to where it meets the official medical definition of LC, the lymphocyte count has to pass through that range (10–20 lymphocytes per 100 enterocytes) in order to get to a diagnostic level. And when properly treated, as the lymphocyte count declines, it has to pass through that range again. Why is that so difficult/impossible for doctors and medical researchers to understand? Do they actually think that the jump occurs instantaneously? Most likely it takes months to make the complete transition. But who knows? It certainly doesn't occur overnight.
Anyway my point is, I'm guessing that your lymphocyte count now falls within this medical "no man's land". Therefore your doctor can claim that you do not have LC. But on the other hand, I'll bet a GF cookie that he cannot provide proof that your colonic histology is back to normal (with a normal lymphocyte count), either.
But here's my assessment of your overall GI and pelvic floor situation, FWIW:
I think it's nerves — part of your body's response to years of chronic stress. For some of us, stress goes straight to our gut. In your case, it didn't stop there — it went all the way to the pelvic floor. I'm sure you realize that your work is extremely stressful, but I have a hunch that it's even more stressful than you realize. Not only is your work and the everyday lifestyle that goes with it stressful, but zillions of dollars rest on your decisions/judgements, and those decisions result in extremely stressful outcomes for others, the recognition of which surely greatly compounds your own stress level.
As for my condition, other than gettin' older, uglier, and more forgetful, I seem to be doing OK.
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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Rich - I too have pelvic floor issues. Despite being meticulous with my eating, things aren't exactly normal. I would say I have motility and neural issues rather than food reactions at this point. I saw a physical therapist for a while who specialized in pelvic floor issues but it was a 4 hour round trip to see her and she only worked 2 days a weeks and was very busy so I could only see her about once a month and all the driving seemed to me to undo the good her physical therapy might have accomplished plus it was very costly. I think if I could have seen her several times a week and she was just a short drive away and my insurance picked up more of the bill, it might have worked. In other words I feel your pain. Do you know Amy Stein's book "Healing Pelvic Pain"? I have found it useful. I am trying to get up the motivation and discipline to do the exercises regularly. I seem to keep hoping that just thinking about doing the exercises will be sufficient, but so fat that approach hasn't worked.
Jean
Jean
Tex,tex wrote: But the problem with paucicellular LC is that the researchers who originally described it proclaimed it to be a unique form of MC, separate and distinct from LC. Really? Does that make sense? You and I both know that before the inflammation that causes LC can push the lymphocyte count up to where it meets the official medical definition of LC, the lymphocyte count has to pass through that range (10–20 lymphocytes per 100 enterocytes) in order to get to a diagnostic level. And when properly treated, as the lymphocyte count declines, it has to pass through that range again. Why is that so difficult/impossible for doctors and medical researchers to understand? Do they actually think that the jump occurs instantaneously? Most likely it takes months to make the complete transition. But who knows? It certainly doesn't occur overnight.
I think part of the problem is that the medical profession tends to treat diseases as things rather than processes. Things have clearly defined edges, objects that you either have or do not have. Processes are fluid and exist on continuums. There is a medical historian and doctor named Jacalyn Duffin who says that diseases are just ideas and ideas always change. I have found it helpful to think about sickness and health in that way.
Jean
Hi Tex,
Always good to hear from you and the rest of the old guard. Was especially looking forward to your response. And Joe's, Polly's, Gabes, and so on.
I appreciate what you wrote and agree that it is a reasonable hypotheses. No, my GI doc gave me no data and my counts. In fact, I had to delay the anesthesiologist so that I could instruct my doctor to be sure to take biopsies (i.e, look for LC) before my colonoscopy. So when I asked him the results of the biopsies, he said all was well and no sign of LC. I asked how that was possible and he just shrugged his shoulders. And my weariness of analyzing the data just allowed me to take him at his word, drop my head in disappointment, and leave. Yes, I am weary of all this, and I know all on this board can understand. The paucicellular LC is a new one to me. Tex. Now I just need to accept this, and commit my head to this concept and redouble my efforts.
I do think there is a nerve component to me, and I know that stress is not helping. I am seeking help in those areas. My PT is good on both fronts. She keeps telling me to "not give up on her". I laugh with her when she says this because I tell her I am the one who should be saying that to her. But there does feel to be an anatomical problem that I continue to think is being missed by the medical community. An obstructive issue. I failed my last defocography miserably. A year prior, I passed (whatever that means). Yes, Mayo said they weren't sure they would be able to help me. Just wanted to repeat a lot of tests. They talked of possible visceral hypersensitivity, and the meds I have been on over the years as a possible help, and I felt very dismayed as I had been down that path. The PT and biofeedback is the most non-invasive course of action for my PFD at this point from what I have been told and read, and I chose to do it at home to lessen the stress of having this done far away from home.
Your last paragraph about me is very insightful, and probably 90% of the reason I am where I am physically and mentally, if I am honest with myself. Perhaps, subconsciously, I do have too much weight on my life. It's almost like switching jobs right now would even be more stressful because with what I do right now, it's the devil I do know. When I feel icky, I can hole up in my hotel room and isolate myself from others. But I would like to slow down. I just haven't found a way to do it yet that satisfies all aspects of my life, including financially, and my wife and I live very modestly.
Glad you are doing well! I too am getting older, uglier, and more forgetful (that last one really sucks), but ignorance is bliss, right? Perhaps I will find some solace in not caring so much about things I have forgotten? :)
I am going to share your response with my physical therapist, who also has a counseling side to her as well.
Always good to hear from you and the rest of the old guard. Was especially looking forward to your response. And Joe's, Polly's, Gabes, and so on.
I appreciate what you wrote and agree that it is a reasonable hypotheses. No, my GI doc gave me no data and my counts. In fact, I had to delay the anesthesiologist so that I could instruct my doctor to be sure to take biopsies (i.e, look for LC) before my colonoscopy. So when I asked him the results of the biopsies, he said all was well and no sign of LC. I asked how that was possible and he just shrugged his shoulders. And my weariness of analyzing the data just allowed me to take him at his word, drop my head in disappointment, and leave. Yes, I am weary of all this, and I know all on this board can understand. The paucicellular LC is a new one to me. Tex. Now I just need to accept this, and commit my head to this concept and redouble my efforts.
I do think there is a nerve component to me, and I know that stress is not helping. I am seeking help in those areas. My PT is good on both fronts. She keeps telling me to "not give up on her". I laugh with her when she says this because I tell her I am the one who should be saying that to her. But there does feel to be an anatomical problem that I continue to think is being missed by the medical community. An obstructive issue. I failed my last defocography miserably. A year prior, I passed (whatever that means). Yes, Mayo said they weren't sure they would be able to help me. Just wanted to repeat a lot of tests. They talked of possible visceral hypersensitivity, and the meds I have been on over the years as a possible help, and I felt very dismayed as I had been down that path. The PT and biofeedback is the most non-invasive course of action for my PFD at this point from what I have been told and read, and I chose to do it at home to lessen the stress of having this done far away from home.
Your last paragraph about me is very insightful, and probably 90% of the reason I am where I am physically and mentally, if I am honest with myself. Perhaps, subconsciously, I do have too much weight on my life. It's almost like switching jobs right now would even be more stressful because with what I do right now, it's the devil I do know. When I feel icky, I can hole up in my hotel room and isolate myself from others. But I would like to slow down. I just haven't found a way to do it yet that satisfies all aspects of my life, including financially, and my wife and I live very modestly.
Glad you are doing well! I too am getting older, uglier, and more forgetful (that last one really sucks), but ignorance is bliss, right? Perhaps I will find some solace in not caring so much about things I have forgotten? :)
I am going to share your response with my physical therapist, who also has a counseling side to her as well.
"It's not what I believe. It's what I can prove." - A Few Good Men
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hey Rich,
I have been wondering how you are doing...
Given the discussion above, links to nervous system, adrenal stress etc my recommendation is pretty much the same as 3-4 months ago;
Magnesium - it will help the nervous system, inflammation in the gut, the muscles etc to assist motility.
Vit C, same same as magnesium plus will help the adrenals
Zinc. Gut health, cell rebuilding, help clear toxins.
Active/methyl forms of B12 and B6 - so our bodies use the zinc and Vit D3 properly.
Have you had your Vit D3 tested in the last 6 months??
Long story short, while-ever the gut is still inflammed, not healing, leaky gut is allowing toxins to get into the blood, this puts more stress on the brain cells, which stresses the nervous system, then makes the gut worse.
I have not worked for the last 7.5months. I don't have the money for practitioner treatments. I am surviving on income that is 1/6th of what it was 5 years ago!!
I am taking as many supps as I can afford, rebuilding my physical fitness via things like gardening. Have spent a bit of time reading and journalling working on my mental and emotional health
My gut is the best it has been in over 8 years.
Building up my physical fitness, I am doing tasks I have not been able to do for over 6 years.
Very thankful for the sequence of events - ie being made redundant and sick enough to accept help from family, that have allowed me to spend this time on some good quality healing!!,
I can eat a meal with gluten, dairy, soy, fibre, and the reaction is minimal. That's how much healing I have achieved in 7 months with the right supplement protocol to correct deficiencies, clear toxins.
Hope your path to wellness gets easier soon.
Take care
I have been wondering how you are doing...
Given the discussion above, links to nervous system, adrenal stress etc my recommendation is pretty much the same as 3-4 months ago;
Magnesium - it will help the nervous system, inflammation in the gut, the muscles etc to assist motility.
Vit C, same same as magnesium plus will help the adrenals
Zinc. Gut health, cell rebuilding, help clear toxins.
Active/methyl forms of B12 and B6 - so our bodies use the zinc and Vit D3 properly.
Have you had your Vit D3 tested in the last 6 months??
Long story short, while-ever the gut is still inflammed, not healing, leaky gut is allowing toxins to get into the blood, this puts more stress on the brain cells, which stresses the nervous system, then makes the gut worse.
I have not worked for the last 7.5months. I don't have the money for practitioner treatments. I am surviving on income that is 1/6th of what it was 5 years ago!!
I am taking as many supps as I can afford, rebuilding my physical fitness via things like gardening. Have spent a bit of time reading and journalling working on my mental and emotional health
My gut is the best it has been in over 8 years.
Building up my physical fitness, I am doing tasks I have not been able to do for over 6 years.
Very thankful for the sequence of events - ie being made redundant and sick enough to accept help from family, that have allowed me to spend this time on some good quality healing!!,
I can eat a meal with gluten, dairy, soy, fibre, and the reaction is minimal. That's how much healing I have achieved in 7 months with the right supplement protocol to correct deficiencies, clear toxins.
Hope your path to wellness gets easier soon.
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
Hi Gabes and Joan,
Joan, I have read Amy Stein's book. I have also read, and participated in, Dr. Wise's protocol listed in "A headache in the pelvis". That is the pretty much the protocol my local PT is redeploying on me. I recommend it for you, but don't expert miracles. It's a lot of work. If you can get to California to participate, it is worth the investment. But back then, my only problem was chronic pelvic/bladder pain. I do wonder about the inter-relatedness of my condition.
Good to hear from you too, Gabes, Yes, I just had some major bloodwork done and my D3 levels and Mag levels were OK. I have ten pages of results. I even had to collect urine for a couple days for testing. I have a friend who is an ER doctor who ordered all of this (he is now my primary physician). The only thing I was borderline on, and just slightly, was my testosterone level. Nothing that my doc cares about.
I do take a mag supplement (chelated Glycynate SP?) and fish oil. Gotta watch the dosage on the Mag. I haven't done the D3 or Zinc however. Vitamin C I take every now and then. It is so difficult to know what to add to my diet supplement-wise, how much, etc. without potentially making my situation worse. I feel nervous about adding things. I am sure you can understand.
I am glad you are doing better! I am also glad you have found some solace in gardening. Ironically I had some trees removed last week so I spent the weekend repairing some of the holes they left behind and planting a new, small tree. I enjoy this kind of outdoor work too, but not too much.
I have a couple new engineers working for me and they have taken some load off of me. So I do feel my stress is lower in some respects, but likely higher in others as Tex alluded to. It is so hard to know what to do work-wise. My career is rooted in what I do and I do very much enjoy my work. I am trying to make it less demanding of me and my time. Like, and I know this sound sounds off to most, but only one travel trip per week... period. That allows me to travel in at my own pace, and out. with a work day in the center. It may sound stressful, but it really is not if I can pace myself this way. It's when a last minute client calls and needs me somewhere else the following day... that's when my stress levels rise.
And ultimately, I am trying to put away the funds that will allow me to walk away from work if need be. That's a tall order but not impossible. I just need a few more years I think.
Joan, I have read Amy Stein's book. I have also read, and participated in, Dr. Wise's protocol listed in "A headache in the pelvis". That is the pretty much the protocol my local PT is redeploying on me. I recommend it for you, but don't expert miracles. It's a lot of work. If you can get to California to participate, it is worth the investment. But back then, my only problem was chronic pelvic/bladder pain. I do wonder about the inter-relatedness of my condition.
Good to hear from you too, Gabes, Yes, I just had some major bloodwork done and my D3 levels and Mag levels were OK. I have ten pages of results. I even had to collect urine for a couple days for testing. I have a friend who is an ER doctor who ordered all of this (he is now my primary physician). The only thing I was borderline on, and just slightly, was my testosterone level. Nothing that my doc cares about.
I do take a mag supplement (chelated Glycynate SP?) and fish oil. Gotta watch the dosage on the Mag. I haven't done the D3 or Zinc however. Vitamin C I take every now and then. It is so difficult to know what to add to my diet supplement-wise, how much, etc. without potentially making my situation worse. I feel nervous about adding things. I am sure you can understand.
I am glad you are doing better! I am also glad you have found some solace in gardening. Ironically I had some trees removed last week so I spent the weekend repairing some of the holes they left behind and planting a new, small tree. I enjoy this kind of outdoor work too, but not too much.
I have a couple new engineers working for me and they have taken some load off of me. So I do feel my stress is lower in some respects, but likely higher in others as Tex alluded to. It is so hard to know what to do work-wise. My career is rooted in what I do and I do very much enjoy my work. I am trying to make it less demanding of me and my time. Like, and I know this sound sounds off to most, but only one travel trip per week... period. That allows me to travel in at my own pace, and out. with a work day in the center. It may sound stressful, but it really is not if I can pace myself this way. It's when a last minute client calls and needs me somewhere else the following day... that's when my stress levels rise.
And ultimately, I am trying to put away the funds that will allow me to walk away from work if need be. That's a tall order but not impossible. I just need a few more years I think.
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich - I have the Headache in the pelvis book but I can't afford their program in California. It's too bad it is so expensive, both the program and the cost of getting there and staying there. I am going to have to get serious about doing Amy Stein's exercises. I am tired of being so constantly uncomfortable, especially since it makes sleeping difficult. I live in a small town and there don't seem to be any local pt people who do pelvic floor therapy, or if they do it is only the leaky bladder type of therapy which I don't need. I too have some strange bladder involvement which seems more neurological than muscular. I am sure it is all related. I am pretty close to normal in the intestinal department now, which is good, but the pelvic issues continue. I will be interested to know how your pt works out.
Jean
Jean