Clarification on Healing Time

[JenAnn]

Hello All!

I will admit I was one of the MC patients who truly believed this will NOT last and that complete recovery is inevitable. I think this is because after I was diagnosed last year (Spring 2013), I DID have weeks here and there where it seemed like the condition miraculously disappeared. The first time was immediately following my diagnostic endoscopy and colonoscopy. For some magical reason, I did not have symptoms back for weeks after having the procedure done, and I remember feeling a bit silly, wondering why I had even sought medical treatment for something that was obviously just going to go away.
Now is it over a year later. I have recently descended fully back into the dark and murky throes of MC. I was glad to recently discover this group. It makes me feel less alone, and it also validates my suspicion that the way I experience this, although significant for me, is much less trying than many others who are dealing with even more horrible symptoms. At it's worst, I only experience "episodes" 7-8 times a day. I realize others have a much bigger problems.
So here are my primary questions.

1) I realize upon reading Wayne's book, that I had some misconceptions about what I should be doing. Growing up, it was drilled into my head that fiber-fiber-fiber is a NECESSITY for good health! Wayne and others on this site recommend LIMITING fiber. So what happens? Will I start to experience anything bad if I am not eating fiber? What about studies indicting that fiber lowers cholesterol, etc? I am afraid to limit fiber and fore-go fresh veggies. But given that I have continued to take fiber UP UNTIL YESTERDAY, including eating all the cruciferous vegetables and lots of raw vegetables, I maybe have a clue as to why I am not getting better.

2) Pravastatin: I think it has worsened my MC. In fact, I decided today that I am not going to take it anymore. The last statin drug I tried (Simvastatin) made my MC go CRAZY and also caused hives, so M.D switched me to Pravastatin. But I think this drug is also exacerbating my MC, even though I am on a very low dose. I decided forget it: as I continue the path of eliminating gluten from my diet and also limit casein, my cholesterol will hopefully lower on it's own... for heaven's sake, it's not that high anyway: (240 total, 111 triglycerides, 64 HDL, 154 LDL, 22 vldl cholesterol, 3.8 chol/hdl ratio).

3) Healing: I am now under the assumption that full healing might never happen. But when other patients refer to "healing", does that mean no imodium and still no diarrhea? Does it mean success with continuing imodium and occasional diarrhea? Or is everyone's definition of "healing" different?

4) I have such explosive diarrhea so frequently at work... my colleagues now all know I have this condition, and we joke that the secretaries, whose desks happen to be right by the women's restroom, probably feel very, VERY sorry for me. But in all seriousness, as much as I do joke about it, it really stresses me out. I am a teacher. I need to suddenly leave my classroom, sometimes unattended. This is the part that is getting me down the most. I really do not know how all of you function at your jobs. Also, we travel often to see our adult children. The traveling is next to impossible. I can see why people end up just wanting to stay home.

5) I also have the new symptom of perpetual acid reflux and heartburn. This is new to me in the past weeks. It wakes me up in the night. I am trying apple cider vinegar but just started this. Has anyone else had relief? And if so, how often do you take it? That brings up my confusion about things like, do I take the imodium AND the apple cider vinegar together? Does one impact the other in a bad way? Speaking of imodium, how often do most MC patients take imodium? On a regular schedule? Only after they have an episode? My Mayo doctor said I can safely take a ridiculous amount, like up to 12 a day or something. This seems crazy to me. I never take more than 4.

6) Last issue, I promise: I have a white tongue. It is gross. WHY? And how do I make it go away?

I hope I haven't overlooked answers to these questions already posted on the site. Thank you for creating a community of honesty and openness about such a frustrating and condition.

[tex]

Hi JenAnn,

Welcome to our internet family. I'll try to address your questions as best I can.

Will I start to experience anything bad if I am not eating fiber? What about studies indicting that fiber lowers cholesterol, etc? I am afraid to limit fiber and fore-go fresh veggies. But given that I have continued to take fiber UP UNTIL YESTERDAY, including eating all the cruciferous vegetables and lots of raw vegetables, I maybe have a clue as to why I am not getting better.

The archaeological records show that fiber is promoted way too much by well-meaning but misguided "experts". The diet that most of our paleo ancestors ate, contained far less fiber than is generally promoted as healthy, today. If you truly believe that fiber is essential to good health, please read this blog article, by Dr. Michael Eades (who is a close personal friend of Dr. Loren Cordain, who is considered by many to be the foremost expert on the paleo diet:

A cautionary tale of mucus fore and aft.

After you read that article, you will clearly see why food that actually physically tears the cells in the lining of our intestines is contraindicated for anyone who has a disease that causes their intestines to be inflamed, and therefore hypersensitive, in the first place. My concern is, "Is fiber actually good for anyone, not just those of us who have MC?" In view of the facts, that's a legitimate concern.

2) Pravastatin: I think it has worsened my MC. In fact, I decided today that I am not going to take it anymore.

You are correct. Statins are known to trigger MC. The sad part is that doctors continue to prescribe them for women, even though recent research shows that statins provide absolutely no health benefits for women. Yes, they can lower your cholesterol, but statins do absolutely nothing to lower your mortality risk. Yet doctors continue to ignore the facts.

And yes, the diet changes that you will make to control your MC will almost surely lower your cholesterol (which will make your doctor happy ). The really interesting part is that while high cholesterol is associated with increased mortality risk up until and through the phase of life that we call middle age, as we get past middle age (and enter the so-called "golden" years), the higher our cholesterol level, the longer we are likely to live. Your doctor won't tell you that, either, but it's true, and I can cite medical research references, if you need them.

Healing: I am now under the assumption that full healing might never happen.

Maybe. The younger we are, the faster and more completely we heal. But the point is that virtually all of us can get close enough for all practical purposes, so that whether or not we actually heal completely is a moot point, and of academic interest only. And yes, many/most of us have our own definition of "healing". The main point (IMO) is to take our life back from this disease, so that it no longer controls our life.

I can see why people end up just wanting to stay home.

Yes, MC can be very debilitating, and it can impose severe limits on our lifestyle options. That's why we need to control it (rather than to allow it to control us).

I also have the new symptom of perpetual acid reflux and heartburn. This is new to me in the past weeks. It wakes me up in the night. I am trying apple cider vinegar but just started this. Has anyone else had relief? And if so, how often do you take it? That brings up my confusion about things like, do I take the imodium AND the apple cider vinegar together? Does one impact the other in a bad way? Speaking of imodium, how often do most MC patients take imodium? On a regular schedule? Only after they have an episode? My Mayo doctor said I can safely take a ridiculous amount, like up to 12 a day or something. This seems crazy to me. I never take more than 4.

Acid reflux, GERD, and heartburn are very common with MC. Correcting your diet will eliminate those problems. For some of us, taking an antihistamine can help to reduce those symptoms. Also, IBDs tend to deplete vitamin D. Vitamin D deficiency will cause those symptoms. Most of us take significant doses (3,000–5,000 IU daily) of vitamin D, in order to minimize such problems. In severe cases, some members take much higher doses for a few weeks or longer, in order to get their blood level of vitamin D up to where those problems are minimized. And yes, Imodium is quite safe for most people, but as your digestive system begins to function more normally, you will be able to reduce and probably eventually eliminate a need for Imodium.

Last issue, I promise: I have a white tongue. It is gross. WHY? And how do I make it go away?

That's thrush, and again, it's very common with MC. It's a sign of Candida (yeast) overgrowth, associated with a leaky gut and the consumption of large quantities of carbohydrates (primarily from grains), that are poorly digested when MC is active. As you modify your diet to control your MC symptoms, the Candida will slowly die out and fade away. I had the same problem before I changed my diet.

Thank you for creating a community of honesty and openness about such a frustrating and condition.

Thank you for joining us. We found early on that the best (only) way to defeat this disease was to share our experiences about what works and what doesn't work, and learn from each other, because our doctors didn't seem to be much help.

Again, welcome aboard, and please feel free to ask anything. Hopefully, you will soon be well on your way toward enjoying life again.

Tex

[Pat]

1. Tex's book is right on. Diet is huge. Plain meats, very well cooked veggies. Don't worry about nutrition right now just try to heal.

2. If you eliminate gluten, dairy (not just limit), and sugar your cholesterol will take care of itself. Read Wheat Belly by Dr. William Davis or watch his youtube video.

3. Some have full healing but usually have to stick to GF and some others maybe

4. & 5. Take all the Imodium you need. It's ok to take 10 or 12. Take it scheduled so you can be in control. I don't know about ACV. I don't tolerate vinegar.

6. You probably have thrush. Candida. Your doctor can help with that. Google it and I think it calls for a sugar free, grain free diet.

Pat

P.S. Welcome to our PP family. It's ok to ask and talk about anything.

[JenAnn]

Tex and Pat, Thank you very much! I am so appreciative of how quickly you got back to me.
Also, thank you for the suggestions: I just ordered and received Wheat Belly this week, and tried one of the focaccia bread recipes.

I have to admit, I am CLINGING to this ridiculous desire to not give up all dairy. CLINGING desperately! I think because I eat so little : goat's milk, a little yogurt and Parmesan cheese. The thought of eliminating those things makes me very sad.

I would like to get the Enterolab testing, but I am very confused, so if you could help me with one other question, I would be so appreciative. Does health insurance ever cover the testing? Are doctors typically willing to order the tests? Something tells me my Mayo Rochester doctors would not be particularly open to this idea. I have emailed my nurse practitioner today to ask. She is a proponent of herbals and homeopathic remedies, so I thought perhaps she would be willing to submit orders, but she is not my colitis doctor, so I'm not even sure my insurance would cover the cost if she is the one who orders.

I read another post from a woman on this site today who said that her doctors told her to eat whatever she wants. Mine said the very same thing. He initially told me I could "take imodium" before I am eating out or having a celebratory meal. This must be fairly common advice. I was also advised at some point in this process to take the large doses of Pepto Bismol. But this made my ears ring at night, which frightened me, so I stopped taking it. From this site and Dr. Fine's site, I do see that it works for a lot of people so my doctor's recommendations were correct.

Today is my first day without fruit or vegetables...(maybe my first day in about 35 years without fruit or vegetables!) Although it feels like I am doing something naughty, I have not had diarrhea since this morning. This is a first in weeks.

Tex, I appreciate the reassurance that the thrush will go away. Pat, I am afraid if I go to my doctor, she will prescribe the oral prescription (fluconazole) for yeast infection, which will make my whole system function in an even worse manner because it will eliminate healthy bacteria along with the unhealthy. Does that makes sense? I am going to give it some time, I think, and take it on faith that the condition will improve as I eliminate foods from my diet.

Thanks again for your help!

[tex]

Yes, some insurance companies will pay for the tests, especially if your doctor orders them. Someone at EnteroLab will be happy to give you the proper insurance codes for the tests that you are interested in, if you call or email them, and some members call their insurance company to see what their rules/regulations are for paying for such tests. To be honest, considering the fact that to the best of my knowledge, not a single member here has ever experienced any resolution of their MC symptoms after following the recommendations of any of the GI specialists at the Mayo, I seriously doubt that they would be willing to order the test for you. For a GI department rated by U. S. News and World Report as the overall best in the nation, they have a pathetic success record at treating MC (unfortunately). One would think that it would eventually dawn on them that they are doing something wrong, but I suppose they would rather do it the Mayo way, than to do it the right way.

Yes, the Pepto-Bismol treatment has a relatively high success rate at resolving MC symptoms, but Dr. Fine (who is the GI specialist who originally developed the treatment) no longer recommends it as the first line of treatment, because so many patients seem to have adverse reactions to it, and tinnitus is a fairly common symptom, unfortunately.

That's very encouraging that you showed so much improvement simply by avoiding fiber. If that continues, and you really miss vegetables, you might be able to reintroduce small portions of a vegetable or 2 each day, if you peel them (to remove most of the fiber) and cook them well (overcook them, so that they are much easier to digest). Examples of veggies that many of us can tolerate (when overcooked) are squash, green beans, cauliflower, and broccoli (though the last 2 can cause gas, for many of us). Many of us are able to tolerate raw banana, but that's typically the only fruit that many of us can tolerate, while we are still recovering. Some of us can't even tolerate banana, either because of the fiber, or because of a mast cell (histamine) problem that's often associated with MC. Whatever you decide to do, please don't jeopardize your recovery by overdoing the fiber. Minimizing sugar is also necessary for most of us (especially if Candida is a problem). Most of us are very sensitive to all artificial sweeteners, also, FWIW.

As your gut slowly heals, you will be able to reintroduce more vegetables and even fruit, as long as you don't overdo it too soon. After a year or so of healing, most of us are able to tolerate some raw vegetables again, though we often have to limit the quantity, early on.

You're very welcome,
Tex

[dfpowell]

JenAnn,
I went to the Mayo Clinic a year ago, and all they could suggest was medication, Entocort. Because I was still having symptoms while on the medication, I searched the web and found this forum. Once I made the necessary diet changes my symptoms came under better control than they were with the medication alone. The doctors at Mayo do not consider diet to be a factor in managing MC, probably none of them have lived with the disease.

[Deb]

My PCP is at Mayo and was surprised when I told her eliminating gluten had helped me and she indicated she may suggest it to some other of her patients. I know Mayo is doing some testing on MC and diet. I saw a study in which they were advertising for volunteers. Slowly for sure but hopefully someday they'll figure it out. In the meantime, this is the best place for advice. Deb

[janet]

GOOD ADVISE ALL YOU FRIENDS OUT THERE.
I MUST SAY YOU ARE SUCH A COMFORT, ITS SOOTHS ME
TO KNOW I CAN SHARE WITH YOU, AND YOU UNDERSTAND

BLESS YOU ALL
MARIE

[MBombardier]

Welcome, JenAnn.

All I can tell you is about my experience. Stress is a HUGE factor, and seems to be the predominant factor in MC, perhaps all immune diseases. If I doubted that before, I don't now after spending two months on the other side of the country from my family caring for my critically-ill 90-year-old father. I had the worst flare of my life, which has eased off considerably since I've been home. So I am actively working on decreasing/eliminating stress.

As you can see from the information under my photo, I don't consume grains, dairy, legumes, or nightshades. When I am not unduly stressed, this means that I live life with 1-2 BMs per day, no bowel sounds, no heartburn, and lots of energy and brain power. I've even been losing weight.

To me, this is healing. I will never go back to eating the way I did before. For me, that would be going back into the disease process. As Tex has said, you can get your life back, and get it back even better than it was before.

[Marcia K]

Hi,JenAnn. I'm at about 8 months post-diagnosis of LC and I am happy to say that as long as I watch what I eat I do not have any episodes. Like you, I had explosive D about 6 times a day. I really don't know how I continued to work during that time, but I didn't miss any work. In my former life I loved raw vegetables and fruit. Now I mainly eat steamed broccoli, squash and green beans. I can tolerate bananas and apples that are peeled. I sat at a luncheon today and watched my co-workers eat. There really wasn't anything that I could eat, but I really didn't mind. It is what it is and I have gotten used to it. I didn't realize 7 months ago how badly I felt so now I am thankful to feel as well as I do. Hang in there, it does get better. This support group is an awesome resource and a wonderful group of people!