Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Good morning, Gabes! (or maybe it's evening there!)
I saw your post in Rosie's thread about feeling a little down lately about limited meal choices and the impact of stress. This disease can be a real bummer, can't it? Sometimes it all seems like an endless roller coaster ride - emotionally as well as physically.
Even after 10 years of mostly remission, I still have my occasional bad days. And, in fact, I am still having the flare that started with the death of my dog almost 2 mos. ago. I have also been experiencing lots of family "drama" lately, too, which hasn't helped. This is the longest flare in the past 10 years for me. If the D doesn't clear up this week, I am going to get some Entocort, which I have never used before. The D has been interfering with my life again, and I had forgotten how discouraging that is. A good friend from TX is coming to D.C. this weekend, and I am worried about how I will be able to drive for 1 1/2 hour on the highways to go visit her. I certainly can't take the metro (subway) since it has no bathrooms!
The limited menu can be monotonous and boring. I would be interested to see a list of what you eat in a typical day. Is there any way you can begin to expand your choices a little bit ? Perhaps someone will have an idea. Cordain (of Paleo Diet book fame) is coming out with a paleo recipe book in Dec. I am hoping it will have lots of suggestions for snacks/meals for us.
Anyway, if misery does love company, maybe my post will help you feel better......or at least not so alone. You have been such a positive influence and major cheerleader here that the least we can do for you is listen, if you feel like ranting and raving. And send big hugs your way (((((((((((((((GABES)))))))))))))))
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Please forgive me for butting in here, but your post touched me so deeply that I just had to respond.
I'm so sorry that you're still having a flare, and I hope that it has just about run it's course by now, and will soon dissipate. I recognize what a big step it would be for you to take Entocort, after so many years of remission, without the help of any medications. Obviously, a flare that refuses to end, and most importantly, the stress that is created by the state of mind that results from the uncertainty involved, is extremely frustrating, which in turn, makes the situation extremely motivating. I can feel your pain, and I wish that I could somehow extirpate the stress that is causing it.
This is a clear example of how stress evolves from the things over which we have no control. As you know, it's not our work, nor the daily events in our lives that we are accustomed to, (the things that we logically expect to happen), that cause significant stress. It's the things over which we have no control, (in this case, the death of a long-time companion), that cause harmful levels of stress. And for us, once the stress reaches a level where MC becomes active again, then we have another source of stress over which we seem to have no control - the D. It's a self-perpetuating series of events.
I hope your flare ends today. Your post has inspired me to start another thread about the topic of stress, (hopefully, I'll get it done before the day is past). IMO, it's a far, far more important factor in this disease than conventional medical wisdom recognizes. Basically, they don't have a clue.
And Gabes, I certainly hope that you're feeling better again, too.
Love,
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.
I am so sorry polly, you are still in a flare and this also frightens me, this means that even with the diet, the disease can flare up again, even after so long. You only had a colonoscopy a couple of months ago and that showed your mc was gone!!! But that still it seems to be possible that is comes back.
Hopefully you won't need the medication.
What tex is writing in the message above here, made me think about something. He says (if I understand it correct) that stress about things we have no control about, it the worst for the MC. Or can be the main trigger. The strange thing is than, the thing outside ourselves that happens where we have no control of, gives us something (an MC flare up) where also have no control about. Isn't that amazing how, how something outside ourselves can reflects itself inside ourselves. I believe (but this is just a personal) thought, that this is no coincidence.
I had it, with control and stress, the other way around with my flare up. The flare up made me realize that I think that I can control this disease (and of course we can till a certain level), but sometimes it is, just out of the blue, there. It reminded me of that I also can't control my new life here. I thought I could and I was very hard trying to do so. Of course without any success. In my case it is always, the harder I try, the less it works.
Reading your message and tex's response on it, made me realize how a flare up, can be a reflection of our live.
Polly I hope you feel better soon, and I am so sorry for your flare. I was already in a bit of shock after my flare up after only a year. In your case it must be so much worse after doing so well for such a long time
Dear Harma, how are you doing? Hope not too stressed and hope no continuing flare?
Dear Polly and Gabes
I am pissed off with my 9 day flare, so I can only imagine what you feel, Polly, after 2 months!
Yesterday I was back to watery D (twice) and almost went back on Entocort. But this morning it was an unnatural, firmish/powdery "Pepto B black", but not D......so still did not pop an Entocort.
We all need to help each other through these times and to keep searching for better ways to control, or at least balance, this tricky condition/disease......diet....stress control....the best ways to use meds.......
This board is so precious - literally vital for anyone with MC.
Flowers..... for everyone who feels down today..... and for everyone who is happy today too, Love ant
Thanks for the caring, Tex, Harma, and Ant (the flowers too),
Tex, I will move this post to the new thread you will be starting later today on stress.
Yes, I had my colonoscopy on July 2, 2010, and it showed absolutely no evidence of MC after 10 years of diet only. Then on August 26th, the day my beloved dog died, the D started with a vengeance and continues to the present despite my usual mostly paleo diet. It doesn't help that Sept. 10 was the one year anniversary of my mom's death. Also, we found out last week that my hubby has a
"spot on his lung" on a routine chest xray. Hopefully, it is nothing more than a scar from previous pneumonia, but we don't know until after the MRI, appt. with the pulmonologist, etc. Tex, you have an excellent point there about the stress due to things totally outside our control.
I am beginning to think that there are 2 distinct mechanisms at play here with regard to MC. Currently, although I have nonstop D, I feel terrific - absolutely no aches/pains/fatigue/mental fog, etc. So I don't think this is a food antibody issue - I think it is strictly a motility or other similar neuromuscular type of problem. I have always said that my gut was my target organ.....whenever I would get stressed, I would need to run to the bathroom and poop. Somehow I think I am programmed to react to stress with my gut. Perhaps the motility speeds up or otherwise becomes wacky, which interferes with the water absorption. And, of course, the D then probably washes out a lot of good bacteria, which perpetuates everything. Who knows? I am wondering if I might be a candidate for some kind of biofeedback therapy. Maybe I could learn to redirect that stress away from my gut?
As we always say, this is a most humbling disease..................sigh.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Gabes I can understand the frustration on the limited diet. Adjusting to MC has been a roller coaster ride of highs and lows and certainly having a place like this to vent a bit is a great resource
This time of year there are so many activities around here of which at which each involves food. This can be disappointing, there are so many comfort foods that are off limits.
Polly
thank you for your heartfelt support and hugs, i can feel it all the way over here in Oz. your post bought tears to my eyes, made me smile, and took away all the overwhelmness i had been feeling. Big hugs to you for what you are coping with.
Doing the MC management as diet as my main controller was a brave step, I know that one of my main triggers is stress (again like you it has been my weak point for as long as i can remember), our gut is our core, every meridian of our blood and oxygen flow transits our core i would be interested in your thoughts on redirecting it
There have been a few situations at work totally out of my control that turned this month into a month of hell, and it will take a few months to repair and recover. most of the symptoms at the moment are leaky gut, bad days means that my ankles and knees ache and make it hard to walk up the stairs at work. The D episodes are not bad per say, ie i havent taken any questran etc, most of the time it is in the later part of the day, 2 - 3 very soft sometimes watery BM.
Cooking wise - for the past 10 months i have lived in 'my very safe bubble' (where ingredients are 100% safe, taking my own meals everywhere and braving the occaisional meal out), this caused tensions with some people in my life, ie i wont let anyone else cook, dont i trust them. so i trusted them to cook, and very unintentionally they contimainated the meal.
it is hard to find the balance between my 'safe bubble' that gives me optimal control and good days, and interacting with others, not feeling alienated and minimising the risk of contamination.
i am doing lots of work on my head and heart to work through the unsettlements and remove the tension that i am holding onto
yours and rosies post has helped me out of the rut of that - so thank you
Harma - i empathise about the control thing.
I think my frustration is that the things that are going on are 'life', there will always be emotional ups and downs, situations out of my control, good days and bad days, why cant i(my body) cope with that? Why do these situations have such an impact?
Ant - thanks for the flowers and i can not imagine where i would be right now without this board and the wonderful people giving unconditional support.
Joe - the post doesnt have to stay on track - that is the good thing about this site, one thought leads to another leads to another, and takes us whereever....... and australia is different to North america we dont do things like halloween, thanksgiving etc at the moment there are no activities or events that involve food.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
So sorry you are having a flare. I am sure we have all walked in those shoes many times and it is so hard. Polly, have you tried imodium yet? It really does help me get through the tough days. I think you are absolutely right about stress and the gut. It is so hard to lose a friend ( Rusty), husband (Jodi's situation), etc.. I've been dealing with my elderly mother in the nursing home. She isn't feeding herself and won't walk. Not like a death but still a stressor. What happpened to those days when all we had to think about was, "what's for dinner?"( it could be any food under the sun), and "what's on TV?"? I found an interesting article:
I am sure there are many more. Try yoga, it helps. A nice professional massage or even just a family member's gentle massage helps too. Laughing also helps. Watch funny stuff on TV or read some of the jokes on this board. The first time I read some of them I laughed till I cried.
I have found that if I tell friends that I can't eat what they cook, they usually become slightly upset. However, if I cave in and eat what they cook, quite often, I will get sick, and if they find out about it, then they will become upset, (and probably, they will be more upset than they would have been if I had simply not eaten it in the first place). Soooooooo, if they're probably going to get upset either way, then why should I go through the aggravation and punishment of getting sick, in the process? Even if I don't get sick, there will be a definite uptick in my stress level, as I "wait for the other shoe to fall". So, I almost always take the easy way out, since that seems to be the lessor of two "evils".
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.
I'm guessing that the reason why D is your only symptom, is because you are currently having only a "pure" MC reaction, (no leaky gut). Remember, the original description of the disease is/was: a disease that is clinically characterized by chronic watery diarrhea, and an interior lining of the colon, (the mucosa), that appears normal to the unaided eye, but where certain distinctive characteristic changes are noted, on a cellular level, (histological changes), when a sample of the mucosa is examined under a microscope.
There is absolutely no mention of skeletal or muscle pain, or neurological issues, nor any other symptoms. Those apparently fall under the "Related Issues" category, as mentioned in the name of this site, (IOW, they're not an official part of the disease). Or am I wrong?
Love,
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 that about sums up the situation, and yes they did see me sick and realised that there is no such thing as a small amount of contimination
I think part of the situation is i have worked really really hard to get to this level of wellness and i am really protective, especially given its fragility! similar to polly, a few events back to back and like a game of snakes and ladders it sets us back a few rows.......
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I feel for all of you. I know how hard it is to post that things aren't going well. I appreciate that you've shared your "down" times with us because it reminds us that sometimes we will have setbacks, in spite of our best efforts. I'm sure you'll get back to where you want to be, but for the moment it can be very discouraging.
Here are some for all of you.
Gabes wrote:Cooking wise - for the past 10 months i have lived in 'my very safe bubble' (where ingredients are 100% safe, taking my own meals everywhere and braving the occaisional meal out)
I know how limiting this can be. I can't remember where I was, but it suddenly dawned on me that I can't be away from my home for more than one meal - and that one meal has to be lunch. It can be difficult to explain to others that we're unable to eat anything that we haven't cooked ourselves. I just went to a reception tonight where there were tables of treats, which I didn't even bother to survey. Someone started making suggestions of possible items I could consume, and I finally said "I know that I can't eat anything here - it's OK." It's pretty hard for others to fathom that we have such a restrictive diet. Like Tex, I've stopped trying to make accommodations. It's not worth the damage it does to my gut.
Polly,
I don't know what to tell you about Entocort. It seems that your flare is lasting longer than it should. While others can take Pepto Bismol and find relief, you and I can't. We have to deal with the flare, change our diet, and consider taking Entocort. If Entocort works by reducing inflammation, then it should help you. It's probably worth a try and if it helps, then you'd likely be able to get off of it very quickly. JoAnn wrote that she wouldn't hesitate to go back on Entocort if she were to have another flare.
I don't know if it's possible that you are reacting to a food. The Paleo diet would cause major reactions for me because of the fruit and vegetables. I'm wondering if you've been avoiding the foods that you've been able to reintroduce, such as tomatoes?
Ant,
I truly hope that you are having a temporary setback. I'm hoping that today's improvement was a good sign. My experience has told me that my problems have always been related to a food I've been eating that I thought was "safe." Hopefully you won't have to give up more foods, but that's where I would start looking. Keep us posted - we are all trying to work through this maze called MC.
Gloria
You never know what you can do until you have to do it.
Gloria
thanks so much for the hugs and the support - it was just what i needed after a challenging day
i sometimes feel guilty about posting about my bad days/weeks, as they are nothing in comparison to what others have been / are going through. (especially yourself)
Hugs back to all for your unconditional support and for being there...........................
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Polly - so sorry to hear of your ongoing flare and totally understand where you are coming from as the gut takes it first for me too when stresses and there sure has been plenty of that lately in my world. I do so hope this comes to an end for you and you can go on as before. And it all had to happen after such a great GI visit.
Gabes - Never feel bad about posting a bad day - we have all been there and the support can sure help from our family here.
Everyone - have a great and stress free day, I am going to try and do that too.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
Thanks to all for your suggestions and support. You are the best!
Something Pat said struck a chord with me. She reminded me of "back to basics" by suggesting Imodium. It had been so long since I've had a major flare that I forgot. So, I just went to the drugstore and got some. (I did find an old bottle of Lomotil at home dated 2002! - LOL).
I am going to try to "retrain" my gut by using Imodium for a while. I know we've always said it's not good to always keep the D from exiting the body (because those liquid contents are probably toxic/corrosive to the gut and need to be eliminated), but maybe this will be something that can help. We do the a similar thing in pediatrics - for chronic constipation we use a regular program of mineral oil every day until the gut can recover its normal function. So maybe this will work in reverse.
Gabes, so sorry about the work problems. Are you still looking/planning to relocate with a new job? It sounds as if there is not much you can do to preserve your sanity in the current job. I will definitely explore biofeedback.....here's a thought.....maybe even hypnosis would work to reprogram us. What do you think?
I hear you about well-meaning friends cooking for us. It never works! One of my best friends "defines" herself by her cooking - she wins nat'l contests as well as ones at our state fair. She has made it her goal in life to cook special things for me, and of course, I always get sick. There's no way anyone else can keep up with our food intolerances (WE can't even half the time).....right? Well, now she has put together an entire cookbook she made just for me. Problem is she didn't realize eggs (and some other things) were a problem for me. What do you do with a friend like this? It's almost like I am a "project" for her - she thinks she is going to figure it out. Sigh. PLEASE JUST LEAVE ME ALONE is what I really want to say to her, but she is trying so hard. Help.........
I hope things are looking a little brighter today. Here's another hug:
Love
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Visit the Microscopic Colitis Foundation Website
You have been such a positive influence and major cheerleader here that the least we can do for you is listen, if you feel like ranting and raving. And send big hugs your way (((((((((((((((GABES)))))))))))))))
I am sure we have all walked in those shoes many times and it is so hard. Polly, have you tried imodium yet? It really does help me get through the tough days. I think you are absolutely right about stress and the gut. It is so hard to lose a friend ( Rusty), husband (Jodi's situation), etc.. I've been dealing with my elderly mother in the nursing home. She isn't feeding herself and won't walk. Not like a death but still a stressor. What happpened to those days when all we had to think about was, "what's for dinner?"( it could be any food under the sun), and "what's on TV?"? I found an interesting article: 
