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Pebbledash wrote:1. How long can one reasonably respect for the digestive tract to heal? Does it take months, normally? (I have been having this relapse for about two to three months so far--is that normal?)
The duration of a relapse can be virtually any length of time. The most important part is how long your diet changes have been in effect, because that determines the beginning point of your treatment. For most of us it actually takes at least several years to heal, (and many of us never heal completely) but you should reach remission long before that — usually within 6 months to a year (much less time, if Entocort is used). The road to recovery is often marked by two steps forward, and one step back. Sometimes the only way to judge progress is by comparing how we feel today, with how we felt a month or so ago.
Pebbledash wrote:2. I have had some stool and blood test results back. I presume that "increased eosinophils" is associated with MC, and that C reactive protein outside the normal range merely indicates the obvious inflammation?
Yes and yes. Of course, there are other possible explanations, in some cases. For example, in some situations increased eosinophils can indicate drug-induced inflammation. And of course, many other sources of inflammation can cause an increase in CRP levels. But at any rate, those results are not surprising for someone who has active MC.
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.
I am scared that I might have UC or Crohn's, not just MC. Given that I see no blood or mucus, and that my main symptom is chronic watery diarrhea I thought things pointed to an MC flare-up . . .
It worries me though that the pepto-bismol and imodium aren't stopping the diarrhea . . . the frequency of BMs is down (maybe now 5 or so a day rather than 12-15) but, for the most part, it's still watery powder than comes out.
Would you be willing to try a more drastically restricted diet in order to try to feel better?
I read and read what works in others posts when I first joined this forum in May and received some very good advice. Try a Paleo or SCD diet and rotate your meats. I was advised in several posts to eat very simply. I rotate beef, chicken, lamb, pork, turkey. (I did order the Enterolab tests, and had the most reactivity to tuna, so am avoiding all seafood for now). I eat only cooked and pureed veggies with my meats. I am eating mostly a meat patty for breakfast, bone broths with pureed veggies and meats for lunch and dinner and am feeling much, much better. I eat ripe banana and applesauce and avocado, but no other fruit at this point. I can now tolerate a simple marinara sauce that I make from scratch, but I eat it without pasta or Parmesan.
It might be worth a try. I am not so frightened anymore and Tex and others have gone into remission so I'm keeping my fingers crossed that gradually I can expand my diet. I am so grateful at this point to be able to not nap all afternoon, go around in a perpetual brain fog, and have the potty as my best friend that I am OK with not being able to have a "gourmet" food selection at this time.
Keep us posted on how you are doing. There are a lot of helpful folks in this forum and you are not alone.
Sharon Day
Diverticulitis flares '11 &'12
MC since 05/13
Low thyroid
GF since 4/2013
Vancouver WA
Welcome!
You have gotten great advise and you are right, this is not easy to figure out. One of the reasons is because we are all slightly different. Healing time varies and usually depends on how long you have had intestinal inflammation. For me, I got on this forum very quickly, took Entocort within a month of dx and changed my diet drastically ( taking almost everything out that could cause problems). I was able to slowly wean off the drug while only using he toilet once a day within 6 months. Since then , i have been able to add some things back into my diet ( beans, small salads and raw veggies, dark chocolate, white potato, a little alcohol, a little tomato product...), but my BMs are not perfect nor the same every day. BUT i only go once a day and I don't have pain, bloating or too much gas very often. I have decided that I am good with that. I may still be ingesting something that is keeping me from full remission, but since the Enterolab test don't work for me, it would be very difficult to figure it out.
It has been 1 1/2 years since dx. and I think I am STILL healing. Most days are good and the only drug I take for it is an OTC antihistamine.Give yourself plenty of time to heal. Eat as simply as you can and eat lots of freshly cooked proteins. It helps with healing. I will never go back to gluten, dairy, or soy. I do eat white rice and corn products, but I know that many can't. Fresh fruit is still a problem.
You might want to buy Tex's Book. just click on the picture of it on this page to take you to Amazon. it's full of great info.
Pebbledash wrote:Thank you. I am going through a miserable.
just heard from my GI. He wants me to have another colonoscopy; feels I may have "gross" colitis (perhaps ulcerative).
I am scared that I might have UC or Crohn's, not just MC. Given that I see no blood or mucus, and that my main symptom is chronic watery diarrhea I thought things pointed to an MC flare-up . . . Sad
It worries me though that the pepto-bismol and imodium aren't stopping the diarrhea . . . the frequency of BMs is down (maybe now 5 or so a day rather than 12-15) but, for the most part, it's still watery powder than comes out.
Your doctor has already proven that he knows virtually nothing about treating this disease by claiming, "there is no other treatment available". Doctors who don't understand MC are never successful at treating it, and so they typically want to do another colonoscopy in order to try to discover what they overlooked the first time. They never find anything in the second colonoscopy — they just waste the patient's time and money, and cause them to go through an unnecessary, miserable, very intrusive test, just to satisify their own curiosity. Doctors such as that are using their patients as guinea pigs to learn on.
Most of us didn't develop this disease in a week or 2, and we aren't able to bring it under control in a week or 2. It takes months (or longer) of careful treatment. If you have decreased the frequency of BMs from 12–15 down to 5 or so a day, then you are on the right track, and you are making progress. There are no miracle cures for this disease It takes a lot of hard work and dedication and perseverance, as Sharon and Leah pointed out.
Even if you should have Crohn's disease or UC (which I seriously doubt to be the case), please be aware that we have members with those diseases who have used the same methods as the rest of us (diet changes) to achieve remission without the use of drugs. Please read the thread at the following link, for an example case — specifically read NJ's post (post number 5 in the thread). He is an excellent example of the power of diet changes for treating UC.
And note Lonewolf's followup post, made 6 or 7 weeks later in that same thread, describing the progress that her son had already made after making diet changes.
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.
Thank you. I am feeling so sad. I guess another colonoscopy and endoscopy is, ultimately, worthwhile. I think my relatively high CRP (12) level has led my GI to believe that I may have UC, as I don't think it is normally associated with MC, though I am hoping I am wrong.
I do not have Tex's level of knowledge but since CRP is a non-specific measure of inflammation anywhere in the body and since MC is an inflammatory bowel disease, I do not see how a slightly raised CRP would necessarily indicate UC rather than MC. I could be wrong and someone will correct me if I am, but using CRP to distinguish MC from UC just doesn't make sene to me. Certainly you can choose to have another colonoscopy and endoscopy but I hope that if you take that route you will continue with dietary changes.
When I joined this list I was in the bathroom so many times a day that I stopped counting, probably 2-4 times an hour. I could barely leave the bathroom let alone the house. I found this forum, stopped all gluten,dairy, soy and eggs immediately. In fact for a few weeks I ate only ground meat and broth. I did the Enterolab testing, putting it on my credit card and paying it off over time, and followed the results when I got them. I have not had gluten, soy, dairy or eggs for 18 months. I eat more than just meat and broth now but I still eat a very limited diet. It works. I followed the advice I got on this forum. I had gone the doctor route and no-one could figure out what was wrong with me or give me any good advice as to what to do. This forum saved me. I no longer live tied to the bathroom. It's been a long time since I have had a mad dash to the bathroom. What ever else you do, I really hope you try the dietary changes.
I think Tex would agree that another colonoscopy would be a waste of time and the prep/clean out could put you back in your progress. What does he think he is going to find? You already have a dx and that will not change. Your symptoms are classic MC symptoms. Usually with UC, there is blood in the stools.
If down the road ( like a couple of years), you still don't feel better after trying everything you have learned here, then perhaps it would be time to look again.
First off--thanks again for this forum and the generosity of members' time and support.
I went ahead with a full colonoscopy, and I have just received the results, and here are the highlights:
*Colonoscopy "normal"
*Biopsies reveal Collagenous colitis
*Smalll bowel is much improved (little signs of my celiacs since I have been gluten free for nearly three years)
The difference between my original biopsies two years ago is that I was then diagnosed with lymphocytic colitis--now this has changed to collagenous. I was a little disappointed since I kind of assumed that LC is somehow less definitive, less of a physical change--but I am very relieved that I don't have "gross" colitis as was the fear--better the devil you know, even if it is a slippery and unpredictable one.
The good news is that I have turned something of a corner with my flare-up; I am controlling diarrhea with a more careful, low fiber diet and with Pepto Bismol and imodium as needed; I don't like keeping taking Pepto--I am down to two cap fulls a day--but it does help me control things. BM down to 2-3 pd, though some days I have relapses.
Two questions, if I may
1. Is it common for LC to transmogrify into CC? My GI intimated that I might have actually had CC from the start . . . the differential diagnosis is apparently fairly hit or miss.
2. Does the thickening layer (of collagen?) remain (during remission) or does it heal and return to more-or-less normal during long periods of remission?
1. Is it common for LC to transmogrify into CC? My GI intimated that I might have actually had CC from the start . . . the differential diagnosis is apparently fairly hit or miss.
Yes, LC can segue into CC and vice versa for no obvious reasons, at any time. The symptoms are the same, and the treatment is the same, so the type of MC is sort of a moot point. Your doctor is correct. If the pathologist didn't actually measure the collagen band thickness in the lamina propria following the first colonoscopy, he would have been totally unaware of the CC. It's possible that when he determined that your lymphocyte count in the mucosal layer of your biopsy samples was elevated sufficiently to indicate a diagnosis of LC, he just stopped there. With CC, sometimes the lymphocyte count meets the minimum diagnostic standard for LC, and sometimes it doesn't. It doesn't really matter, since the diagnosis of CC is based on collagen band thickness, not lymphocyte count.
2. Does the thickening layer (of collagen?) remain (during remission) or does it heal and return to more-or-less normal during long periods of remission?
As the gut heals, the collagen bands will slowly return to normal thickness and remain there as long as remission is in effect.
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.
You are right, this isn't easy! In February, I will be going on two years. We all heal at different paces. I was on drugs for 6 months and in that time I took out ALL the foods ( except eggs) I thought could be a problem. it's the fastest way to recovery. ALL dairy should be eliminated for sure. you can always test it back in when you have healed. That goes for all the suspect foods. Beyound the big four, you should also rethink soy related foods like peanut butter, beans and legumes, nightshades ( potato, tomato, peppers), caffeine, acid foods, spicy, sugars... That left me with meats, eggs, rice products, corn products, sweet potato, cooked veggies, apple sauce, and nut butters. I stuck to this diet the whole time i was on Entocort. After I felt i was doing well , I started to test things back in. As I heal more, I have been able to add more things back in.
If you have the money, the Enterolab testing can give you the answers you need.
i know how hard it is to rethink what "healthy" eating is. I am a personal trainer/nutritionist and was eating tons of produce and fiber. But it's not good for ME. And by the way, eating meat will not raise your cholesterol. There have many research articles showing those on Paleo diets LOWERING cholesterol. There has also been some research on how simple carbs are causing inflammation in arteries.
I have to go to work right now.
Hope you find answers soon
feel better
leah
Thanks for your feedback. Glad to hear that the collagen appears to heal during remission--my GI was sure about that.
Leah, I am currently self-administering Pepto and imodium and coping okay--not healed nor in remission, but able to function pretty normally. I have altered my diet, but I can't go the whole hog--it would, for example, too challenging for me to completely give up dairy, though I bear in mind what you say.
I agree that diet and, I would add, lowering stress are key.
I am on the slower road to healing but can now eat without feeling sick each and every time I put something into my mouth. I've been GF and DF since November 2011 and SF and EF since February 2012. It takes time. I still have D so I have some refining to do in my diet. Don't give up thinking that your changes aren't helping.
I no longer think of specific foods in categories such as lunch and dinner. Everything I ate for breakfast aside from bacon and potatoes is off my list. They were all my favorites too. Now I focus on meat for protein and a fruit or veggie. As long as I feel full when I walk out the door, I am happy. I still eat chex cereals with almond milk sometimes but worry about getting enough protein. Sometimes I add a scoop of brown rice protein power but its expensive and generally easier just to make sure I have meat of some sorts ready to cook. Soups are also good breakfast starters.
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
Hi Pebbledash,
Glad you are feeling better. I also took Pepto tablets "as needed" for a few years, and it helped a lot. I never could get to 8 pills a day. Have you tried a week or so of absolutely no dairy to see if it makes a difference? I would hate to see you missing remission by one ingredient in your diet. It's worth a short-term elimination to see what happens...
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