I was doing pretty good and then a couple of weeks ago everything just went bad and I really had not changed anything. I contacted Mary Beth - she has been my dietician since I also live in Texas. She recommended that I go to a limited diet of turkey, quinoa, zucchinni and water only. My water is Reverse osmosis. Stools are somewhat better - I had had some accidents - still not thick or formed, just watery with sediment, no mucus. I've checked my cosmetic products and don't see anything there. I don't think I can stick with this limited diet much longer. Seems like I need something to bind the stools but I am so intolerant of so many things. Sigh.
Pat
Been having a rough time.
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natythingycolbery
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Hi Pat,
I'm very sorry to hear of this setback. The lack of mucus makes me wonder if the problem could be due to something other than inflammation. I have no idea what it might be, though. Are you taking/using any hormone supplements/treatments of any type, (other than vitamin D), either internally or externally?
Tex
I'm very sorry to hear of this setback. The lack of mucus makes me wonder if the problem could be due to something other than inflammation. I have no idea what it might be, though. Are you taking/using any hormone supplements/treatments of any type, (other than vitamin D), either internally or externally?
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.
Oh Pat, how very disappointing. I'm at a loss for words - this is such a cruel disease. If it wasn't for all the stories and support here, I could never have come through some of the very dark tunnels I've been in. I think of Tex, who spent 3 whole years on a limited diet before starting to introduce new foods, and tell myself that if he and others could figure this out, so can I.
The only thing I can think of is that perhaps the flavorings you use on your food might give you trouble. Also, are you positive that you tolerate turkey well? When I was trying the elimination diet (I lasted 3 days, because I got worse instead of better), I was using garlic salt on my pork, and subsequently found out that I was sensitive to garlic. I was also highly sensitive to the coffee I was drinking.
Sending you lots of love and positive thoughts and hoping you get back on track soon.
Love,
Kari
The only thing I can think of is that perhaps the flavorings you use on your food might give you trouble. Also, are you positive that you tolerate turkey well? When I was trying the elimination diet (I lasted 3 days, because I got worse instead of better), I was using garlic salt on my pork, and subsequently found out that I was sensitive to garlic. I was also highly sensitive to the coffee I was drinking.
Sending you lots of love and positive thoughts and hoping you get back on track soon.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
I only use non iodized sea salt. Thanks for the support though.
Tex,
I do use bioidentical hormones. They are creams that I apply nightly to the insides of my arms. Estrogen, progesterone, and a very small amount of testosterone. I am soooooooooo much better as far as sleeping and hot flashes. They put me on testosterone because my levels came back as that of an 80+ year old woman. They said it would give me more energy and that DH would like the results too.
Do you think they might be a problem? I really don't want to give them up. It took so long to get where I am with them. I have discontinued all other supplements including vit D. Yikes!
Pat
I only use non iodized sea salt. Thanks for the support though.
Tex,
I do use bioidentical hormones. They are creams that I apply nightly to the insides of my arms. Estrogen, progesterone, and a very small amount of testosterone. I am soooooooooo much better as far as sleeping and hot flashes. They put me on testosterone because my levels came back as that of an 80+ year old woman. They said it would give me more energy and that DH would like the results too.
Do you think they might be a problem? I really don't want to give them up. It took so long to get where I am with them. I have discontinued all other supplements including vit D. Yikes!Pat
Hi Pat,
I'm so sorry to read that you are having a setback. I'm beginning to think that people like you and me, who have fructose and so many other intolerances, will be unable to maintain remission without some type of help from medication. We needn't feel inferior for that; we've given diet our all.
My symptoms vary daily, but Norman is no longer a steady visitor. I take 1/2 Imodium on the days when my trips to the bathroom reach 3 or more times. So far it is keeping things under control.
I have decided that my main goal is to have a normal life where I can eat a decent diet. If Entocort is necessary to maintain that goal, so be it. I'm not throwing the towel in yet because the majority of my days are still OK, but if I begin to spiral out of control, I'm not going to eliminate any more foods. I really can't, with just 13 on my acceptable list.
I suggest that you reconsider Entocort. I know that you've tried it before and it helped only minimally, but you didn't have the comprehensive knowledge of your intolerances that you do now. Entocort probably will help you a great deal more this time around. Plus, we now know of a way to purchase it for a much lower price (I recall that your insurance didn't cover it). You need to be able to live a normal life, and eat a decent diet. Entocort would likely allow you to add some borderline foods back.
Oh, boy, I just read your post about the hormonal supplements. I'm sure Tex will have something to say about that. Hot flashes are a pain - I spent 10 years having them, but I decided I wasn't going to take anything for them because of the stroke risk. I believe it was Lyn who was using the Estrogen patch and her MC flare got much better once she discontinued using it. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9876&
Gloria
I'm so sorry to read that you are having a setback. I'm beginning to think that people like you and me, who have fructose and so many other intolerances, will be unable to maintain remission without some type of help from medication. We needn't feel inferior for that; we've given diet our all.
My symptoms vary daily, but Norman is no longer a steady visitor. I take 1/2 Imodium on the days when my trips to the bathroom reach 3 or more times. So far it is keeping things under control.
I have decided that my main goal is to have a normal life where I can eat a decent diet. If Entocort is necessary to maintain that goal, so be it. I'm not throwing the towel in yet because the majority of my days are still OK, but if I begin to spiral out of control, I'm not going to eliminate any more foods. I really can't, with just 13 on my acceptable list.
I suggest that you reconsider Entocort. I know that you've tried it before and it helped only minimally, but you didn't have the comprehensive knowledge of your intolerances that you do now. Entocort probably will help you a great deal more this time around. Plus, we now know of a way to purchase it for a much lower price (I recall that your insurance didn't cover it). You need to be able to live a normal life, and eat a decent diet. Entocort would likely allow you to add some borderline foods back.
Oh, boy, I just read your post about the hormonal supplements. I'm sure Tex will have something to say about that. Hot flashes are a pain - I spent 10 years having them, but I decided I wasn't going to take anything for them because of the stroke risk. I believe it was Lyn who was using the Estrogen patch and her MC flare got much better once she discontinued using it. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9876&
Gloria
You never know what you can do until you have to do it.
Pat,
I doubt that your dosage of T is high enough to cause problems. Besides the benefits that you mentioned, it can also help to prevent osteoporosis, and improve cognizance, memory, etc. Of course, excess amounts might cause D, but I would be more inclined to suspect progesterone as a trigger for D, if you happen to be accumulating more than your body needs. I assume that you check the levels occasionally, with a simple blood test.
http://www.bio-identical-testosterone.c ... ffects.php
Aside from that, though, Lyn found that her HRT was the cause of her D, and she even had the problem when she switched from oral pills to transdermal patches. I recall that she stopped the D by discontinuing the treatment, but I don't know if she ever tried a bioidentical treatment, as you suggested in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewt ... hlight=hrt
Maybe she'll see this post and add some insight.
I'm not a medical professional, but IMO, MC is quite sensitive to hormonal effects, and not always in predictable ways. For example, during pregnancy, some women with MC suddenly find themselves in a flare, (or their symptoms become worse), and others find that they go into remission.
FWIW, I have to agree that there may be some merit in Gloria's position on this issue. The problem is that this disease is so complex that we may never understand all the details involved, (at least not during our lifetimes), and quality of life is almost surely the supreme consideration, in the final analysis.
IOW, like Gloria, I'll bet that you could make Entocort work, now that you know so much more about your food sensitivities. I'm not suggesting that you should throw in the towel on your elimination diet, yet, but after trying all the options, and allowing enough time for them to take effect, if relief is still elusive, I believe that you could add Entocort to your treatment program, and achieve remission.
Tex
I doubt that your dosage of T is high enough to cause problems. Besides the benefits that you mentioned, it can also help to prevent osteoporosis, and improve cognizance, memory, etc. Of course, excess amounts might cause D, but I would be more inclined to suspect progesterone as a trigger for D, if you happen to be accumulating more than your body needs. I assume that you check the levels occasionally, with a simple blood test.
http://www.bio-identical-testosterone.c ... ffects.php
Aside from that, though, Lyn found that her HRT was the cause of her D, and she even had the problem when she switched from oral pills to transdermal patches. I recall that she stopped the D by discontinuing the treatment, but I don't know if she ever tried a bioidentical treatment, as you suggested in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewt ... hlight=hrt
Maybe she'll see this post and add some insight.
I'm not a medical professional, but IMO, MC is quite sensitive to hormonal effects, and not always in predictable ways. For example, during pregnancy, some women with MC suddenly find themselves in a flare, (or their symptoms become worse), and others find that they go into remission.
FWIW, I have to agree that there may be some merit in Gloria's position on this issue. The problem is that this disease is so complex that we may never understand all the details involved, (at least not during our lifetimes), and quality of life is almost surely the supreme consideration, in the final analysis.
IOW, like Gloria, I'll bet that you could make Entocort work, now that you know so much more about your food sensitivities. I'm not suggesting that you should throw in the towel on your elimination diet, yet, but after trying all the options, and allowing enough time for them to take effect, if relief is still elusive, I believe that you could add Entocort to your treatment program, and achieve remission.
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/Pat,
It sure does seem like something other than food sensitivity is at play here. Pat, I beleive you have tried about as hard as anyone could with diet . . . it may be time to look in another direction.
My sister (also has mast cell activation) was on HRT (patches) and it definitely worsened her symptoms. She was very hesitant to get off of her hormones too but finally did and it dramartically improved her situation. She had some intial menopausal symptoms from drop in hormones but then things leveled out and she has been fine in that area ever since.
Mary Beth
It sure does seem like something other than food sensitivity is at play here. Pat, I beleive you have tried about as hard as anyone could with diet . . . it may be time to look in another direction.
My sister (also has mast cell activation) was on HRT (patches) and it definitely worsened her symptoms. She was very hesitant to get off of her hormones too but finally did and it dramartically improved her situation. She had some intial menopausal symptoms from drop in hormones but then things leveled out and she has been fine in that area ever since.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
I don't know what has happened but this is ridiculous. I am having nothing but brown water. It's like back 11 1/2 years ago when all this started. I haven't cheated on my diet and as a matter of fact tried an elimination diet. I'm worse. I called the compounding pharmacy and the pharmacist said that the progesterone could cause fatigue and that is why they have me use it at bedtime but does not extend for 24 hours and she didn't believe it could cause D. I've only been on this for 2 years and have had D for 11 1/2 years so I really don't think that is the problem. I'm pretty much fed up.
Pat
Pat
Pat,
I'm baffled too, and I'm so sorry this is happening, but remember that with MC, just because an item didn't cause the flare originally, doesn't mean that it cannot perpetuate it, once it begins. Your pharmacist is mistaken:
http://www.drugs.com/sfx/progesterone-side-effects.html
Tex
I'm baffled too, and I'm so sorry this is happening, but remember that with MC, just because an item didn't cause the flare originally, doesn't mean that it cannot perpetuate it, once it begins. Your pharmacist is mistaken:
The red emphasis is mine, of course.Side Effects of Progesterone - for the Consumer
Progesterone
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Progesterone:
Bloating; breast tenderness; diarrhea; dizziness; drowsiness; dry mouth; fluid retention; headache; heartburn; irritability; muscle pain; nausea; stomach pain or cramping; tiredness; vomiting.
http://www.drugs.com/sfx/progesterone-side-effects.html
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.
Dear Pat
First
My heart goes out to you.
Although I have not been at this for as long as you and Gloria, as Kari says, this is a "cruel disease". I think Gloria is wise to say look at Entocort (or its generic) again. It is still my quality-of-life lifesaver, although of course I want to get off it in the long run.
I have a restricted diet but, like Gloria, I cannot achieve consistent Normans for more than a few days. I had tapered down to one Entocort every other day for about three weeks, but a few days ago went back into a flare (watery D et al).
In the last 18 months this has happened a few times and now I can almost predict how to bring it back into control and return to firmish or firm BMs, by adjusting Entocort up a notch and taking my diet down to very simple basics (for me that is fresh lime soda's, grilled shrimp or ham and boiled rice). I took Imodium and upped the Entocort to one a day and within 48 hrs I was back to Norman/firmish and a normal(ish) life.
Best wishes for whatever decisions you take to tame the monkey, ant
First
My heart goes out to you.Although I have not been at this for as long as you and Gloria, as Kari says, this is a "cruel disease". I think Gloria is wise to say look at Entocort (or its generic) again. It is still my quality-of-life lifesaver, although of course I want to get off it in the long run.
I have a restricted diet but, like Gloria, I cannot achieve consistent Normans for more than a few days. I had tapered down to one Entocort every other day for about three weeks, but a few days ago went back into a flare (watery D et al).
In the last 18 months this has happened a few times and now I can almost predict how to bring it back into control and return to firmish or firm BMs, by adjusting Entocort up a notch and taking my diet down to very simple basics (for me that is fresh lime soda's, grilled shrimp or ham and boiled rice). I took Imodium and upped the Entocort to one a day and within 48 hrs I was back to Norman/firmish and a normal(ish) life.
Best wishes for whatever decisions you take to tame the monkey, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Ant,
I was wondering if you were still Entocort. Now correct me if I'm wrong, but don't you travel frequently? If so, that as you know, is your biggest disruptor to achieving remission. I do so much better on the weekends where I can be knowingly 100 percent safe food-wise and can allow my GI to perform it's functions on it's own clock. There are days where I feel it may be a good idea to reach for Entocort, but instead, like you, I take half of an imodium.
That helps a little and gives me more assurance to venture out, but I think it is counter productive tommy pelvic floor dysfunction issues.
Good to hear from you! Glad you have a plan.
Rich
I was wondering if you were still Entocort. Now correct me if I'm wrong, but don't you travel frequently? If so, that as you know, is your biggest disruptor to achieving remission. I do so much better on the weekends where I can be knowingly 100 percent safe food-wise and can allow my GI to perform it's functions on it's own clock. There are days where I feel it may be a good idea to reach for Entocort, but instead, like you, I take half of an imodium.
That helps a little and gives me more assurance to venture out, but I think it is counter productive tommy pelvic floor dysfunction issues.
Good to hear from you! Glad you have a plan.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Tex, Pat, Others . . . .
Do you suppose there is some other process besides MC going on here? I recently read about something called autoimmune enteropathy, which is a rare disease that causes intractable diarrhea. Typically it is seen in children but it has been reported in adults too. These patients are not responsive to any change in diet and in some cases they have absent goblet cells (which could explain lack of mucus in stools). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2128725/
Pat, since you are so non-responsive to diet and drugs that typically work for MC, I am thinking it is very possible that you have something in addition to MC. I know when I was not responsive to things that typically worked for others I started to look in another direction, which is how I came to understand mast cells/histamine as my problem. I really think that if I were in your shoes I would consider a workup at some place like Mayo, where they interested in looking a little deeper than most gastrenterologists.
Tex, do you have any ideas about what else could possibly be going on with Pat . . . or do you think it's just a tough case of MC?
Mary Beth
Do you suppose there is some other process besides MC going on here? I recently read about something called autoimmune enteropathy, which is a rare disease that causes intractable diarrhea. Typically it is seen in children but it has been reported in adults too. These patients are not responsive to any change in diet and in some cases they have absent goblet cells (which could explain lack of mucus in stools). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2128725/
Pat, since you are so non-responsive to diet and drugs that typically work for MC, I am thinking it is very possible that you have something in addition to MC. I know when I was not responsive to things that typically worked for others I started to look in another direction, which is how I came to understand mast cells/histamine as my problem. I really think that if I were in your shoes I would consider a workup at some place like Mayo, where they interested in looking a little deeper than most gastrenterologists.
Tex, do you have any ideas about what else could possibly be going on with Pat . . . or do you think it's just a tough case of MC?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thanks to all of you for your kind support. I have taken Entocort in the past and it does not work for me. Never gave me Normans. It helped about as much as Imodium and Imodium is really not helping much this time. I have even taken what Joe is taking, Imuran. Even Prednisone did not work. I took 2 Imodium this morning, put on a depends and went to church. I had to leave during the service to have my water D. Yes, Mary Beth, I think and have always have thought that I have something else or in addition to MC. I have really never felt that I fit the mold here. Tex, I have had this disease much longer than I have taken progesterone. I never saw a change when I started on HRT. This is out of the blue D. I wasn't introducing anything new when it started. I have an appointment with a new GI but not until the 25th. I'm game for just about anything even the tincture of opium that the 4th GI recommended. Thanks for being here and listening. No one else even comes close to understanding.
Pat
Pat