Paging Gabes!

[Kari]

Dear Gabes, Polly and Ant,

So sorry to hear about your persistent "flares", but I'm sure you'll find your way back to stability very soon, as you all have what it takes to deal with this awful condition. I know what you mean about well-meaning friends; I have a well-meaning son and DIL who cannot seem to "let it go". Whenever I'm with them, the topic inevitably goes to what I can and cannot eat, and they are forever trying to come up with meals that with please me. I've explained ad nauseum that I don't know all my sensitivities at this point in time, so it's better left in my own hands, while I'm trying to figure it out and heal. Unfortunately, my slightly desperate "pleading" falls on deaf ears - sigh.

Anyhow, I wanted to comment about the biofeedback idea, which I think is excellent!!! I believe that when we're stressed, our body chemistry changes, which then affects the gut. My gut has always been where I instantly feel the reaction to stress, as I would suspect is the case for most of us on this board. I've come to believe that the natural way to counter-balance the stress, is to be able to elicit the relaxation response in the body. To manage this is at least as hard (and probably harder) as "taming" the MC monster, but I think it is a very worthwhile endeavor. As for me, this is an area that has interested me for a long time, and I'm constantly trying to "work on myself" to "nip stress in the bud" so to speak. There are probably countless articles available on the web if googling "relaxation response" for anyone interested in pursuing this topic.

Hugs and love to the 3 of you - hope you get back to stability very soon .........

Kari

P.S. Gabes - I'm glad to see your comment about "not needing to stay on topic" on these threads. I have frequently found myself not posting for fear of getting "off topic". Not worrying too much about this certainly makes for a more relaxed and forgiving environment for us all. As with everything else in life - let these threads take on a life of their own and not try so hard to control them :):):)!!!!!!!

[tex]

Polly,

I've had a few friends who were pretty persistent, but your example has to be a prize-winning contender in the competition for the "I'm-gonna-feed-you-whether-you-like-it-or-not" award. She's dedicated - no question about it.

Good luck.

Love,
Tex

[Zizzle]

Dear Gabes and Polly,
I'm bummed to hear you are all flaring at the same time. I thought I was about to join you, but found it was accidental gluten contamination instead. I wonder if the post-summer work craziness and changing seasons have anything to do with flares this time of year. I'd blame fall, but Gabes is on the other side of the earth! I hear you on all the well-meaning friends and family that try to feed you. I find that they start off well-meaning, and often end up angry. My latest experience is with a new friend that my kids and I spend Friday evenings with. I never intend to eat dinner at her house, but the kids get hungry, she feeds them, then either cooks or orders in for the grown-ups. I pick at what little I can and assure her I have dinner ready to cook at home, but now she says she knows how I stay thin - I don't eat anything.

[tex]

Kari,

Not to worry - there are no "protocol police" on this site. Life's too short for that kind of foolishness.

To all the discussion boards with moderators who are so regimented that they feel obligated to constantly remind posters to stay on topic, I say, "Get a life". Our brains aren't limited to one single thought at a time, (that's one of the things that separates humans from lower life forms), so why should any discussions be so limited?

Tex

[Kari]

Thank you Tex for your openmindedness, we are so fortunate to have you as the "moderator" on this board....... Kari

[Gabes-Apg]

Polly
your memory is correct my dream/goal is to get a job in a regional area a few hours away, and live a 'simplier mc friendly lifestle'.
In the past 7 months there has only been one viable job advertised, i applied and didnt get an interview, this was the first link of events in the past month that hit me a bit emotionally.

with all the events of the past month, I realised I was putting too much of my energies into goals and dreams, and this was distracting me and I wasnt living and enjoying 'the now' , i cant force or rush things to happen, like MC i have to be patient and let it happen.

[Gabes-Apg]

another disapointment of last week, work was soo chaotic that i was too busy to duck out of work and meet up with Lyn (Bifcus) as she was in town for a night.
I was pretty bummed about that.

[Gloria]

Polly,

Let us know if taking Imodium gives your colon a rest and results in permanent relief after you're off it.

I only take Imodium when I can't have an accident. I've never taken it to give me long-term relief because I think the D will come back as soon as I stop it. I'll be interested in hearing about the long-term success that you have once you've stopped using it.

Gloria

[Pat]

Polly,

Wow, I never dreamed I'd ever be able to give advice to you! I thought you had this disease licked. I guess it is even more difficult than I thought to beat. Are you avoiding corn? I think you must be if you are mostly Paleo. Corn seems to be the hardest to avoid. It is literally in almost everything. If you are avoiding corn I was wondering if maybe you have added something that has hidden corn in it or sometimes, as I have learned on an avoiding corn forum, manufacturers suddenly change formulas and add something with corn in it. They don't have to inform you of that change. Just a thought. I could be totally off base. I am staying grain free but there are corny things in vitamins and calcium and toothpaste, etc. Hope the Imodium helps!

Pat

[mbeezie]

Polly, Gabes and Ant,

I haven't had time to visit much lately, so I've been out of the loop. Sorry to hear you are all flaring.

The idea of neurofeedback is interesting. I went to a seminar last month on Body/Mind/Immune function and it was taught by a psychoneuroimmunologist. Our immune function is clearly influenced by our thoughts, because it is thoughts that cause stress, so you must work hard at changing the thoughts that are precipitating the stress and causing the immune system to flare. When I first got sick and it was clear that my autonomic nervous system was out of whack, I read somewhere that exercise helps to regulate it. So when I flare, even though I don't feel like it, I force myself to exercise at a pretty hard level and I think it really helps. It also helps with mood and stress. Also practice deep breathing and meditation.

Also, because the immune system is aggravated, you are releasing more inflammatory mediators than normal, so you might be getting a response to previously tolerated foods, so don't rule food out as a trigger. I have gradually gained tolerance to many foods, but when I flare I go back to my Phase 1 MRT diet and really try to get the inflammatory mediators to stop acting up. So while most of you haven't done MRT, think about how you ate when you first started getting things under control (more restrictive than now probabaly). Not a pleasant thought I know, but it is a step to help get things under control.

Shooting good thoughts your way and hoping the flare(s) end soon.

Mary Beth

[Gabes-Apg]

Mary Beth

thanks for the advice - i will take my basic bland diet back a couple of steps to really basic and really bland!

i do lots and lots of deep breathing, and have even put a relaxtion cd on my ipod and sit in my car for 10 mins at lunchtime (mostly on the days i want to run away or i am going to hit someone!)

at acupuncture last week i was showing signs of inflammation and infection and my blood flow was really slow, since the treatment day by day things have been improving slowly.

[Polly]

Gosh, you are ALL so helpful! What a family we have here!!!

Gloria and Pat, the Imodium seems to be doing the trick! I took only one yesterday at 9:30 AM and did not have a BM until 7:30 this morning. It was still D but I can't believe the improvement in frequency! Prior to yesterday the D had been worsening until I was having 8-10 episodes/day. So, obviously I did need to slow down my gut motility.

Tex, this is what I think is going on......(you asked my opinion about this earlier). There are 2 major processes going on in MC. One is the COLON issue ("colitis") where the body makes antibodies to its good bacteria (or antibiotics wipe them out), allowing the bad bacteria to overgrow. This results in corrosive D, which causes inflammation of the colon lining. Then, the damaged colon is no longer able to perform its primary function of removing the excess water from the BM. The result is BIG TIME D!

The second process occurs in the SMALL INTESTINE, where nutrients are absorbed. (This is the piece of the puzzle that our docs don't know about). The gene that gives us colitis apparently "turns on" the gene that gives us food intolerances. It is the food intolerances (especially gluten) that damage the small intestine, that cause "leaky gut". We know that the antibody/antigen complexes that result from eating offending foods are what damage the lining (villae) of the small intestine. Also, so do lectins.....by opening up those little "gates" to allow larger proteins through. It is this second process, I believe, (the part that occurs in the small intestine) that causes the generalized symptoms of fatigue, muscle and joint aches/pains, mental fog.

So............what I am thinking in my case is.........since I have avoided my food intolerances for many years now, and since I have no systemic symptoms, I think I may be experiencing the first process above - the colitis only. In this instance I believe that the extreme stress I have been under has somehow altered my colon bacteria - perhaps by increasing colon motility and mechanically washing out good bacteria, or who knows? Maybe stress can actually cause us to develop/increase those antibodies against the good bacteria. If this is true, then I should be able to regain remission fairly quickly, as long as I can retrain my gut to be less motile and can somehow figure some better ways of handling stress.

Stay tuned................

Love,

Polly

P.S. Gabes, I will be sending you a PM today. Thinking of you.

P.P.S. Mary Beth, I couldn't agree more about vigorous exercise. Since my knee surgery last fall I have stopped running and am brisk walking only - maybe this explains why I am not handlong dtress as well. Thanks for the tip - I think I will find other ways to do aerobic stuff - stationary bike, etc.

[starfire]

Polly, forgive me for not posting sooner. I felt so bad for you at first I just didn't know what to say. I surely hope you'll be able to get this flare stopped VERY soon.

I guess this leaves no doubt at all that MC is not "cureable". I was really hoping you were.

Love, Shirley

[tex]

Polly,

It's a relief to see that we're still on the same page. That's how I visualize the problem, concerning the way that the intestines are affected. Regarding the stress issue, though, I'm not convinced that dysbiosis, (or dysbacteriosis), is the problem. Note that I'm not trying to imply that dysbiosis may not be present, I'm just saying that I don't believe that it initiated your D. You were in not only symptomatic remission, but also in histologic remission. You were as "cured" as one can possibly be, with MC. And yet, apparently, stress, (alone), was sufficient to break the remission. That's pretty profound. Obviously, we need to look at the effects of stress, in a lot more detail.

I can't visualize a mechanism by which stress could directly alter the bacterial population of your gut, (though that obviously doesn't mean that it can't happen). I can however, understand how the release of glucocorticoids, which is a family of stress hormones that puts the body in a heightened state of alert, could alter the functioning of the digestive system, possibly on a chronic basis, if the state of stress continues to linger. When this defensive mechanism was originally evolved, it usually came into play when a human found it necessary to try to escape a hungry predator, and it was obviously necessary to pull out all the stops, and do whatever to it took, to try to survive. Incidents such as that, however, are usually over rather quickly, and when the danger is past, then the stress fades away rather quickly. These days, though, we virtually never face such severe trials, so for some of us, the body apparently transposes that response to the closest stress substitute that it can find, with the result that you are experiencing. IMO, this is somewhat similar to the way that the immune system tends to "address" a secondary problem, only after the primary problem is resolved. IOW, it's designed to handle serious problems, and if a serious problem is not obvious, at least once in a great while, then, by golly, it searches for a substitute, so that it can "stay in practice".

Anyway, the glucocorticoids tend to shut down all nonessential bodily processes, such as digestion and immune system response, and if they linger in the bloodstream, (as in a chronic stress situation), the damage tends to accumulate. Of course, if digestion is interrupted long enough, then gut fauna populations are obviously going to be affected, because some species will be starved for nutrients, while others will be favored, so you certainly could be correct that you do have a bacterial imbalance. I'm guessing though, that the D started immediately, and it takes a while for gut bacteria populations to undergo significant population changes, (without antibiotics). That would suggest that the gut bacteria changes, (if they occurred), would have been secondary to the D, rather than the initial cause of it.

The big question in my mind is, "if you had allowed it to go on long enough, would the leaky gut syndrome have eventually been triggered". I have a hunch that the answer is "no", because nothing was present to trigger it, as long as you remained faithful to your diet.

Here's why I believe that your small intestine is/was involved, (even though the leaky gut syndrome is obviously not involved):

The small intestine and the colon do not work entirely independently. They play by the same set of rules, because the enteric nervous system makes sure that they are "synchronized". Evidence of this is seen in the fact that for many, an urge for a BM is initiated, whenever a large meal is eaten, (long before any significant amount of the food just consumed, has traveled any significant distance down the GI track). IOW, the digestive system seeks to make room to allow for proper processing of the meal just consumed, even before it leaves the stomach.

I believe that all osmotic diarrhea originates in the small intestine, not in the colon. Here's why:

Osmotic diarrhea occurs because of an increase in residual salts, (sodium, potassium, etc.), in the fecal stream. The increased presence of those electrolytes is the signal to purge the system, and this increase has to occur in the small intestine, due to an absorption failure. If the increase were only present in the colon, then that would be a marker of secretory diarrhea, (not osmotic diarrhea), because the colon would have to actually secrete copious amounts of those electrolytes into the lumen, in order for them to be present in the colon, (and not in the small intestine).

I hope that the tactic of using Imodium to get your motility back on track works as well as it promises. If so, it will be another valuable addition to our database of tricks that work, (under certain conditions), to control MC.

The most salient feature of this entire experience, (to my way of thinking), is the fact that, (as Shirley points out), not only does it prove that MC is never "cured", but it demonstrates that active MC can be reinstated from complete remission, by stress alone. That appears to be an incredible observation, by medical standards. You are truly a remarkable case. (I've forgotten the medical term for it, but I'm sure you know what I mean).

Love,
Tex

[Ginny]

Tex/Polly, I have said in other threads that stress alone is what started the MC process for myself. I was very healthy, did not have any other ailments, did not take medications and had 2 very normal BM's everyday due to the amount of fiber I ate. In my life, I have had two other occasions where chronic stress, I believe, caused me to have acute pain and loose bowels. One for 6 months and one for a year. This time around it was not only chronic stress but I also did not BELIEVE I could do what I was asked to do, thereby, leaving me in a no win situation and no way out, as I perceived.

Again it has to be the makeup of one's body chemistry that throws us into sickness. I am a major worrier and have a mentally handicap adult daughter with no relatives to help. Lifelong stress can play havoc on those once great genes!

Wishing wellness to all, Ginny

PS Polly, I just recently made the jump to no Entocort, BUT I take 1/2 tablet of Imodium most days to keep the motility in check and it has done a great job. I actually have time in the morning to do normal things before the dash to the toilet! My problem is I try to add too much fiber back and it has backfired recently so back to the plain and simple.