Hi there, It's been a long time since I wrote last, but I thought it might be helpful for people to know that after a LONG LONG LONG time with no seeming improvement at all despite a best effort diet, I've finally calmed down! I'm still on a hair trigger. and I never have any idea whether or how long any "good spell" will last, but the horrible feeling of being a "sewage processing plant" all night, getting up in the night, being pulled out of bed in the morning with D, stomach gurgling so loud it could be heard in the next state, etc., has gone away and seems truly out of the picture--but it could come back--and I have to accept that, but it's been long enough now that I finally trust myself to write this post. I hope I don't have to write with the "big reversal" someday.
I would never say I am back to my old once-a-day normal. I even take a picture (which I delete with embarrassment) if things are particularly fabulous, so you can see that they rarely are. I also always have D if I take any medication that lists D as even a low-probability side-effect, but I've redefined normal to "no nocturnal sleep disturbance" and "does not particularly absorb my thoughts" and that may be as good as it will ever get. The diet is a *miracle*. Someone recently told me that if they had to keep my diet they would kill themselves. Wow. I thought of all the wonderful foods I eat. I certainly wouldn't kill myself after the delicious dinner I had last night, all gluten, soy, egg, and dairy free. When I make my blueberry-coconut-banana-spinach smoothie, I consider it "food of the gods" and way better than gluten-junk.
I really, really appreciate the help and support that everyone one the board gives. I credit this forum with the recovery I've had. I thought it might be useful to know that sometimes it takes a long long time and lots of disappointment to get anywhere at all. Even if it never happens, it's useful to know a caring community exists.
--T
Some success and a big thank you
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Thank you so much for your very helpful post. What a inspiring way to begin the New Year. I gather that you have been treating your symptoms with diet changes alone (no anti-inflammatory medications). That's impressive, and very reassuring about the effectiveness of the diet as a treatment for MC.
It often seems like "Mission Impossible", when trying to convince new members here that if they experience a relatively fast recovery that's great, but they certainly shouldn't give up on the diet just because it doesn't seem to be helping. It is helping, as you have verified.
It's a shame that many of us have to treat this disease for so long before we begin to see substantial improvement, but that just proves that our previous diet has done a lot of damage to our digestive system, and our gut tends to heal slowly when the damage is extensive.
I agree that Imodium is one of the safest meds available, and there is no good reason not to use it whenever it can make life more pleasant. Again, thank you for sharing your success with us. I hope that your recovery will continue, and that the Imodium will be only rarely (or never) needed.
Tex
It often seems like "Mission Impossible", when trying to convince new members here that if they experience a relatively fast recovery that's great, but they certainly shouldn't give up on the diet just because it doesn't seem to be helping. It is helping, as you have verified.
It's a shame that many of us have to treat this disease for so long before we begin to see substantial improvement, but that just proves that our previous diet has done a lot of damage to our digestive system, and our gut tends to heal slowly when the damage is extensive.
I agree that Imodium is one of the safest meds available, and there is no good reason not to use it whenever it can make life more pleasant. Again, thank you for sharing your success with us. I hope that your recovery will continue, and that the Imodium will be only rarely (or never) needed.
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 know my improvement has been slow, but you and others are proof that all the patience and diligence with diet does pay off!Thanks!
Yes, I believe the diet does indeed pay off if VERY strictly followed, and guess what? I've been able to add a lot of foods that used to be off limits. I just looked at my previous list of intolerances and realized that some things that used to give me bad reactions are now fine:
Soaked legumes, walnuts, cashews, almonds, tomatoes, peppers, pineapple, strawberry, peach. Basically all the fruits and veggies have come back, but buckwheat makes me horribly sick, as do oats, probably due to gluten contamination.
I'll have to update my list!
I'm thinking of trying olives again, but they are pretty scary. Who knows why I react to them? But it's been months . . . I might try again.
I have to believe gluten was at the root of it all (I am double DQ), but it caused a lot of damage.
I would never rule out Entocort, but luckily diet did the trick very, very slowly (it's been two years) and with no guarantees. This is such an individual process of trial and error. Everyone is so different, but we all share a wish to be healthy and offer support when all else fails.
--T
Yes, I believe the diet does indeed pay off if VERY strictly followed, and guess what? I've been able to add a lot of foods that used to be off limits. I just looked at my previous list of intolerances and realized that some things that used to give me bad reactions are now fine:
Soaked legumes, walnuts, cashews, almonds, tomatoes, peppers, pineapple, strawberry, peach. Basically all the fruits and veggies have come back, but buckwheat makes me horribly sick, as do oats, probably due to gluten contamination.
I'll have to update my list!
I'm thinking of trying olives again, but they are pretty scary. Who knows why I react to them? But it's been months . . . I might try again.
I have to believe gluten was at the root of it all (I am double DQ), but it caused a lot of damage.
I would never rule out Entocort, but luckily diet did the trick very, very slowly (it's been two years) and with no guarantees. This is such an individual process of trial and error. Everyone is so different, but we all share a wish to be healthy and offer support when all else fails.
--T
Hi T,
What a great post! I like your positivity. I think that what you said about normal not having to mean perfect is so important for us to remember. We all find our own definition for a "new normal," and accepting that makes it much easier to cope.
I also liked your re-assurance that it is possible to eat a delicious, healthful diet that is free of that which sickens us. That's so important for others to hear, especially for the new kids on the journey, who, like most of us did initially, have trouble imagining an eating life without the bad stuff.
And as to Imodium, I take it at 3-4 day intervals to slow things down and it works for me. No self-judgement here; it makes my life easier, so I use it. There have been times when I took it daily, or just before traveling; it has helped me feel much less anxious about unexpected episodes. For me, the less anxiety the better. I don't have to make many concessions to MC these days, and it is a good feeling.
Sounds like 2014 is off to a good start, and I'm happy for you.
What a great post! I like your positivity. I think that what you said about normal not having to mean perfect is so important for us to remember. We all find our own definition for a "new normal," and accepting that makes it much easier to cope.
I also liked your re-assurance that it is possible to eat a delicious, healthful diet that is free of that which sickens us. That's so important for others to hear, especially for the new kids on the journey, who, like most of us did initially, have trouble imagining an eating life without the bad stuff.
And as to Imodium, I take it at 3-4 day intervals to slow things down and it works for me. No self-judgement here; it makes my life easier, so I use it. There have been times when I took it daily, or just before traveling; it has helped me feel much less anxious about unexpected episodes. For me, the less anxiety the better. I don't have to make many concessions to MC these days, and it is a good feeling.
Sounds like 2014 is off to a good start, and I'm happy for you.
Suze
i would be doing one big happy dance! I am familiar with nocturnal issues and it is a giant step forward to be able to sleep without the constant fear of what can happen. I still cant linger in bed too long but progress is a great feeling.Few healthy people realize what a MCer is willing to do to get some normalcy back in their life. I clearly remember thinking I would NEVER eat like i do now when i first started on this journey. My chiropractor told me some people had success with changing their diet to whole foods. I though she was way out there and refused to consider it. I believe i had candida issue at that time too. My health continued to decline. It was about the same time i found this site and it literally saved my life, too. Now my diet is even more restrictive than what she described. Sometimes it takes a while- I have been on a slow road but getting there. Happy to hear you were on the fast track to finding what works for you. Enjoy!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I agree. I'll move it after the posting slows down.Brandy wrote:Tex, perhaps move this thread to success stories?
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.
Hi T!
Congrats on such great success and such an inspiring post! It's so important, especially for the newbies, to know how long the process takes for so many. It's also important to know - or be reminded - that our new normal doesn't have to be perfect or like our lives pre-MC.
I know I couldn't have imagined changing my diet so dramatically. I really felt I had a healthy diet. It took me months of reading on this site before I made changes. Change is difficult especially if you don't see results quickly. My results have been similar to yours. I also love my new foods and how they make me feel and would never go back.
Enjoy your terrific news and good health!
Kathy
Congrats on such great success and such an inspiring post! It's so important, especially for the newbies, to know how long the process takes for so many. It's also important to know - or be reminded - that our new normal doesn't have to be perfect or like our lives pre-MC.
I know I couldn't have imagined changing my diet so dramatically. I really felt I had a healthy diet. It took me months of reading on this site before I made changes. Change is difficult especially if you don't see results quickly. My results have been similar to yours. I also love my new foods and how they make me feel and would never go back.
Enjoy your terrific news and good health!
Kathy
I enjoyed your post. I too have friends who think it's pitiful when I have to forgo the Cesar salad they're eating. In my mind, I eat healthier, cook more, better understand food labeling, and enjoy natural flavoring more than ever before. I eat small portions all day without gaining a pound. What woman wouldn't love that! 
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Thanks for all the good words. It's nice to talk with others on this road, although I wish we could all get off it.
Yes, I'm very glad to be eating just whole, natural foods. It's actually a very tasty and healthy diet once you can expand a bit to include a pretty wide variety of foods--but that takes TIME. I just added asparagus. For me, each food has to be tested, or I never know whether it's safe. For example, I just found that I can eat peanuts--but apparently not too many peanuts. (You know the drill.) Yay and arrrgh.
My diet can be extremely varied if I put in the work. I like to cook, but it takes time, so I've learned to do things like make massive amounts of veggies and freeze them, then make veggie smoothies and soups. Very delicious, and I can take them on the go, which is always a challenge.
I recently had a 24 hour urine test to check for a (thankfully absent) kidney problem, and the doctor commented about how little sodium and how much potassium is in my diet. The low salt is mostly from not eating processed foods. He's a world famous endocrinologist, and as he read off the test, he told me what I ate, in broad strokes, without my telling him. He said "If everyone ate with this ratio of low salt and high potassium, we could eliminate a lot of disease. Most people can't do it." That was a proud moment for me.
Deb, it's true that we will go to great lengths to treat this. It's nice that the whole, natural diet has some compensations.
--T
Yes, I'm very glad to be eating just whole, natural foods. It's actually a very tasty and healthy diet once you can expand a bit to include a pretty wide variety of foods--but that takes TIME. I just added asparagus. For me, each food has to be tested, or I never know whether it's safe. For example, I just found that I can eat peanuts--but apparently not too many peanuts. (You know the drill.) Yay and arrrgh.
My diet can be extremely varied if I put in the work. I like to cook, but it takes time, so I've learned to do things like make massive amounts of veggies and freeze them, then make veggie smoothies and soups. Very delicious, and I can take them on the go, which is always a challenge.
I recently had a 24 hour urine test to check for a (thankfully absent) kidney problem, and the doctor commented about how little sodium and how much potassium is in my diet. The low salt is mostly from not eating processed foods. He's a world famous endocrinologist, and as he read off the test, he told me what I ate, in broad strokes, without my telling him. He said "If everyone ate with this ratio of low salt and high potassium, we could eliminate a lot of disease. Most people can't do it." That was a proud moment for me.
Deb, it's true that we will go to great lengths to treat this. It's nice that the whole, natural diet has some compensations.
--T
You bring up a very good point. Posts such as yours provide very convincing evidence that diet changes (not drugs) are clearly the way to treat digestive system disorders. Medications may ease the journey back to health, but it's the diet changes that actually restore our health. And the proof of that claim is in the results of the tests that doctors use to monitor our health, such as the example that you cited. Yes, anytime we can impress a doctor (especially one who has world credentials), that's definitely something to be proud of.
I find it very impressive that as a result of getting our symptoms under control and regaining our health, in the process, we end up impressing our doctors with our test results. I always expected my test numbers to deteriorate as I age, but instead, if anything, they're getting better. We never set out to do that (we just wanted to get our life back), but it's obviously a side effect of the diet changes. I hesitate to label it a "benefit" of having MC, but as the old saying goes, "Never look a gift horse in the mouth".
That's not to say that other health issues won't turn up from time to time, but all in all, I believe that they are/will be far less significant than they would have been if not for the diet changes that we were "forced" to make in order to control our MC.
Tex
I find it very impressive that as a result of getting our symptoms under control and regaining our health, in the process, we end up impressing our doctors with our test results. I always expected my test numbers to deteriorate as I age, but instead, if anything, they're getting better. We never set out to do that (we just wanted to get our life back), but it's obviously a side effect of the diet changes. I hesitate to label it a "benefit" of having MC, but as the old saying goes, "Never look a gift horse in the mouth".
That's not to say that other health issues won't turn up from time to time, but all in all, I believe that they are/will be far less significant than they would have been if not for the diet changes that we were "forced" to make in order to control our MC.
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.