Hi Polly,
I hope you are doing well! I rarely read the board anymore, but now with my Grossly inflamed colon, caused by an emergency appendectomy a month ago, I'm asking for any opinions or knowledge that board members might have.
What is your take on this complication? I had to take an Imodium last night after a mushy poop, so I could work early this morning. Just like the old days.
It worked, no D yet. But I really am hesitant to rely on it. I've started a bland diet today.
Only rice, bananas, applesauce, toast, etc.
Thanks in advance!
Alice
Paging Polly
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Alice!!! My very dear "oldest" friend here!
So good to hear from you but sorry, of course, to learn about your flare. ((For those who don't know, Alice is the guardian angel who found me on Judy Malinowski's blog and brought me to this original (Sally's) website......which started me on the path to remission - about 14 years ago now.))
That's really a bummer about your appendectomy and flare. Was it done laparoscopically?
You have already received some good advice, so I don't have much to add. I am not surprised at all to learn that you are flaring. You have experienced not one, but several known causes of a flare. First......... the appendix is part of the colon, so obviously at least some of your colon was inflamed to begin with. (AppendicITIS means inflammation). Also, you have received antibiotics, which are notorious for altering the gut flora and causing D. Various anesthetics are known to cause mast cell degranulation, which can cause D when the colonic mast cells are affected. Finally, this whole experience had to have been incredibly stressful. Over the years here, we have come to appreciate the major role that stress plays in flares. Indeed, I believe that Tex feels that stress is the underlying factor in all autoimmune disease.
Re the alternating C and D, this is not unexpected when one has MC, since dysmotility (problems with moving the colonic contents along too quickly or too slowly) is an underling problem for many of us. I suspect your motility was fine for many years, but once your gut experienced a major trauma (not to mention meds that induced C), it is having more difficulty re-gaining its normal motility than it would if you didn't have MC. But I will bet that this is a temporary problem.
What IS surprising to me is how well you have done over these many years. I don't know if you realize how lucky you are that you needed to eliminate only gluten in order to maintain long-term remission. Most here now have had to eliminate dairy and often soy (and often many other foods) in order to maintain remission. And despite a strict diet, flares will occur - sometimes the only obvious cause is a period of significant stress.
I would guess that this flare will be self-limited and that you will soon be back to normal. We have also learned here that a flare sometimes seems to "take on a life of its own", to last longer than we would think. So, be patient and don't worry about taking the Immodium - it won't cause any longterm issues and will help to give you peace of mind while playing the organ publicly. (it sounds like you are still doing that?). And going back to a simple, safe diet is always a good idea during a flare. Be sure to avoid raw veggies/fruits, nuts, etc. - foods with a lot of insoluble fiber. If the flare doesn't subside in a few weeks or so, I would recommend a trial without dairy. But this likely will not be necessary, given your very smooth MC course over the years.
Please keep us posted on your progress. Again, it's wonderful to hear from you!
Love,
Polly
So good to hear from you but sorry, of course, to learn about your flare. ((For those who don't know, Alice is the guardian angel who found me on Judy Malinowski's blog and brought me to this original (Sally's) website......which started me on the path to remission - about 14 years ago now.))
That's really a bummer about your appendectomy and flare. Was it done laparoscopically?
You have already received some good advice, so I don't have much to add. I am not surprised at all to learn that you are flaring. You have experienced not one, but several known causes of a flare. First......... the appendix is part of the colon, so obviously at least some of your colon was inflamed to begin with. (AppendicITIS means inflammation). Also, you have received antibiotics, which are notorious for altering the gut flora and causing D. Various anesthetics are known to cause mast cell degranulation, which can cause D when the colonic mast cells are affected. Finally, this whole experience had to have been incredibly stressful. Over the years here, we have come to appreciate the major role that stress plays in flares. Indeed, I believe that Tex feels that stress is the underlying factor in all autoimmune disease.
Re the alternating C and D, this is not unexpected when one has MC, since dysmotility (problems with moving the colonic contents along too quickly or too slowly) is an underling problem for many of us. I suspect your motility was fine for many years, but once your gut experienced a major trauma (not to mention meds that induced C), it is having more difficulty re-gaining its normal motility than it would if you didn't have MC. But I will bet that this is a temporary problem.
What IS surprising to me is how well you have done over these many years. I don't know if you realize how lucky you are that you needed to eliminate only gluten in order to maintain long-term remission. Most here now have had to eliminate dairy and often soy (and often many other foods) in order to maintain remission. And despite a strict diet, flares will occur - sometimes the only obvious cause is a period of significant stress.
I would guess that this flare will be self-limited and that you will soon be back to normal. We have also learned here that a flare sometimes seems to "take on a life of its own", to last longer than we would think. So, be patient and don't worry about taking the Immodium - it won't cause any longterm issues and will help to give you peace of mind while playing the organ publicly. (it sounds like you are still doing that?). And going back to a simple, safe diet is always a good idea during a flare. Be sure to avoid raw veggies/fruits, nuts, etc. - foods with a lot of insoluble fiber. If the flare doesn't subside in a few weeks or so, I would recommend a trial without dairy. But this likely will not be necessary, given your very smooth MC course over the years.
Please keep us posted on your progress. Again, it's wonderful to hear from you!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Polly,
I'm so excited to hear from you! You sound wonderful - just like in the old days! Yes, it was really Judy's blog that got us both moving on the quest for remission. Thanks for reminding me of that very important first "angel" on our path. And you, another angel who has shared so much knowledge and support. I hope you are feeling as great as you sound!
You know, even though I've read Tex's book and agree about the stress component, it never even occurred to me. I think my memory got altered somewhere along the way. And stressful it was. I won't bore you with too many details, but will briefly tell my little story in hopes it may help someone else.
The appendicitis attack went like this: I awoke with a strong stomach ache near my navel. Didn't think much of it, got in my car and started the freeway drive to get to an appointment 40 minutes away (ironically a specialist doc). By the time I got there I was very nauseous. Back on the freeway going home I developed pain all over my abdomen, got sweaty, and had to pull off the freeway 3 times because I thought I was going to vomit and lose control of the car.
The third time I called my husband and asked him to come get me as I didn't think I could make it home. A half hour later he picked me up, and drove me to an Urgent Care. By then I had tingling and shakiness in my hands and thought I was having a heart attack. Paramedics took me to an ER and an hour later I had the laparoscopic procedure.
Fast forward to now - I've been on the bland diet for 2 days, nothing much happening colon-wise except some gurgling and gas. I'm very encouraged, though, after "talking" to you! I 'll continue to update my progress in hopes it might help someone.
Love and gratitude,
Alice
I'm so excited to hear from you! You sound wonderful - just like in the old days! Yes, it was really Judy's blog that got us both moving on the quest for remission. Thanks for reminding me of that very important first "angel" on our path. And you, another angel who has shared so much knowledge and support. I hope you are feeling as great as you sound!
You know, even though I've read Tex's book and agree about the stress component, it never even occurred to me. I think my memory got altered somewhere along the way. And stressful it was. I won't bore you with too many details, but will briefly tell my little story in hopes it may help someone else.
The appendicitis attack went like this: I awoke with a strong stomach ache near my navel. Didn't think much of it, got in my car and started the freeway drive to get to an appointment 40 minutes away (ironically a specialist doc). By the time I got there I was very nauseous. Back on the freeway going home I developed pain all over my abdomen, got sweaty, and had to pull off the freeway 3 times because I thought I was going to vomit and lose control of the car.
The third time I called my husband and asked him to come get me as I didn't think I could make it home. A half hour later he picked me up, and drove me to an Urgent Care. By then I had tingling and shakiness in my hands and thought I was having a heart attack. Paramedics took me to an ER and an hour later I had the laparoscopic procedure.
Fast forward to now - I've been on the bland diet for 2 days, nothing much happening colon-wise except some gurgling and gas. I'm very encouraged, though, after "talking" to you! I 'll continue to update my progress in hopes it might help someone.
Love and gratitude,
Alice
Polly,
I didn't answer your question about my job - yes, still at it, but will retire soon. Are you still in practice? Also, thanks for reminding me how lucky I've been with my lasting remission. My biopsies have all been negative for MC. I know that many, including you, have had a much rougher road.
There is A quick question that came to me; anyone else who reads this please feel free to answer:
When we speak of flaring while in remission, does that mean MC would show up on a biopsy
If it was performed at that time?
Thanks again!
Alice
I didn't answer your question about my job - yes, still at it, but will retire soon. Are you still in practice? Also, thanks for reminding me how lucky I've been with my lasting remission. My biopsies have all been negative for MC. I know that many, including you, have had a much rougher road.
There is A quick question that came to me; anyone else who reads this please feel free to answer:
When we speak of flaring while in remission, does that mean MC would show up on a biopsy
If it was performed at that time?
Thanks again!
Alice
Hmmmmm. That's a good question. I have a hunch that it depends on how long the flare lasts. My reasoning is based on the fact that T cell infiltration in response to IgA antibodies doesn't happen in a short period of time (in contrast to mast cell activation provoked by IgE antibodies, which can occur in a matter of minutes). I'm sure that the lymphocyte count will begin to increase relatively promptly, but it should take a bit of time for them to build up to levels diagnostic of LC. IOW, the clinical symptoms might be raging, but the lab markers will probably require some time to build up to a level where they meet the criteria for a positive diagnosis.
Similarly, in the case of CC, it takes a significant amount of time for the collagen bands to gain enough increased thickness to meet the diagnostic criteria for CC.
If I had to make a guess, I would guess that it might take at least a couple of weeks before lymphocyte levels reached the minimum LC threshold level (20 T cells per 100 enterocytes), and probably somewhat longer before collagen band thickness increased enough for a definitive CC diagnosis. But obviously I could be wrong, since that's just a WAEG.
At least it wouldn't require as much time as a celiac diagnosis, because the celiac blood tests won't turn positive until the damage to the small intestine reaches at least a Marsh 3 level, and that takes at least several months of eating gluten, for most people, and 6 months or more for some celiacs who are slower to accrue damage.
Tex
Similarly, in the case of CC, it takes a significant amount of time for the collagen bands to gain enough increased thickness to meet the diagnostic criteria for CC.
If I had to make a guess, I would guess that it might take at least a couple of weeks before lymphocyte levels reached the minimum LC threshold level (20 T cells per 100 enterocytes), and probably somewhat longer before collagen band thickness increased enough for a definitive CC diagnosis. But obviously I could be wrong, since that's just a WAEG.
At least it wouldn't require as much time as a celiac diagnosis, because the celiac blood tests won't turn positive until the damage to the small intestine reaches at least a Marsh 3 level, and that takes at least several months of eating gluten, for most people, and 6 months or more for some celiacs who are slower to accrue damage.
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.
Another update:
Just passed about 5 tiny blobs which were covered in mucous, some tinges of pink -blood? To add more fun, I now have a UTI, and I was being so careful in that department!! So off to Urgent Care where I will probably be put on a sulpha drug. Blah! I've never had a problem with a sulpha drugs, so fingers crossed that I won't this time!
Alice
Just passed about 5 tiny blobs which were covered in mucous, some tinges of pink -blood? To add more fun, I now have a UTI, and I was being so careful in that department!! So off to Urgent Care where I will probably be put on a sulpha drug. Blah! I've never had a problem with a sulpha drugs, so fingers crossed that I won't this time!
Alice
Yes. I'm not sure why the authors of that code chose to automatically navigate that way, but that's exactly what happens when you save a post as a draft.Alice wrote:Just a technical question, when I go to "save as draft" is it supposed to take me back to the original post line-up?
You're very welcome,
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.
Alice,
That must have been such a scary experience. It's good you got immediate care, before the appendix ruptured. Sorry to hear about the UTI. How are things coming along now? I will send you a PM so we can catch up on personal issues.
Tex, I agree 100% with your answer to Alice's question.
Love,
Polly
That must have been such a scary experience. It's good you got immediate care, before the appendix ruptured. Sorry to hear about the UTI. How are things coming along now? I will send you a PM so we can catch up on personal issues.
Tex, I agree 100% with your answer to Alice's question.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
The latest update:
The Cipro for the UTI is agreeing with me, I think. No bad side effects. Still no BMs since the tiny blobs - just gurgling and a normal amount of gas. Maybe the Cipro is contributing to C? It's so complicated when you throw in another drug. I got brave and tried a 4 ounce serving of prune juice last night to see if it would help. All the rest of my diet has been soluble fiber, cooked veggies and fruit, etc.. Prune juice, from what I read, is over 50% soluble.
Alice
The Cipro for the UTI is agreeing with me, I think. No bad side effects. Still no BMs since the tiny blobs - just gurgling and a normal amount of gas. Maybe the Cipro is contributing to C? It's so complicated when you throw in another drug. I got brave and tried a 4 ounce serving of prune juice last night to see if it would help. All the rest of my diet has been soluble fiber, cooked veggies and fruit, etc.. Prune juice, from what I read, is over 50% soluble.
Alice