New and wondering where to start.

[renee2]

I was diagnosed with LC last Monday, via colonoscopy, and started budesonide treatment Friday. I am not happy with the way I received the information about the condition. I simply got a phone call saying my biopsies were consistent with leukocytes throughout and that the way they treated it was with budesonide for three months. I asked her if this would make the D stop and she said it would.

After calling the pharmacist, I learned that most relapse once the meds are stopped. So, this seems like a bandaid to me. I don't want to be on a steroid and stop it and have to start all over again. So, I'm interested in the diet remedies many of you seem to have found. I've read a bit and these are the questions I'm hoping someone will be able to help me with.

I seem to be having problems with heaviness and charlie horses in my legs. I nearly fell carrying my groceries up the steps yesterday. I had charlie horses once before I started the meds so not sure if it's related to that or not. The heaviness is new.

I was taking supplements before I got the LC but now fear putting any back in my body though I've read that vitamin D, magnesium, and B12 may be beneficial. I fear it will make me sicker? Also what about calcium and a multivitamin?

I am not one of the people who lost weight. In fact, I gained weight throughout the three months of D. I comfort with food and had the crazy idea that since it was all coming out anyway I could eat whatever I wanted. Now I realize I added to the inflammation problem and have no idea where to start.

I'm also not sure the meds are working because I started taking immodium more often. I know something is helping because I am down from 10 or more times a day to 3 or 4.

I went to the grocery and bought rice, turkey, carrots, potatoes, and a beef roast (though I didn't buy bone in and after reading more I'm guessing that's where the benefit lies).

Thanks in advance for the help. This seems just awful to me right now.

[Erica P-G]

HI Renee,

Welcome, and I am so sorry you had to find us

Please read a bit on a post I started a year ago http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 it is surely to have some answers that you are seeking because I also know that Drs are clueless when it comes to what we are going thru and many dedicated caring people have contributed to the post I created and it is filled with valuable information.

All the questions you have above need more thorough answers and I feel others will chime in with their ideas, and along with reading the post I feel you will be on a great road to recovery. It will take a while but it will happen

Feel free to keep asking questions :-)

Cheers
Erica

[tex]

Hi Renee,

Welcome to our Internet family. You're right on target of course that the medical treatments available to treat IBDs are only band-aids designed to treat the symptoms. When the genes that predispose to MC are triggered, the genes that predispose to certain food sensitivities are also triggered, and this is why some of the foods that we have been eating for most of our life suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them. And because physicians are trained to treat disease by prescribing drugs, and none of them receive any significant amount of formal training in dietary treatment methods, they are pretty much forced to treat MC by prescribing drugs, unfortunately.

If you haven't already done so, you can download some guidelines for developing your own recovery diet at the link below (from the Microscopic Colitis Foundation website):

http://www.microscopiccolitisfoundation ... 120615.pdf

Again, welcome aboard, and please feel free to ask anything.

Tex

[Marcia K]

Hi, Renee. You've come to the right place for help. I received my diagnosis much like you did. My G.I. started me on Pepto Bismol tablets 6/day for 8 weeks. He said if that didn't work they would put me on medication that Crohn's patients take (I'm not sure what that was.) I knew from that moment on I was on my own to figure this out. Luckily for me the Pepto stopped the D and altering my diet has kept me D free. Read the forums on here and you'll obtain a wealth of information. I also read Tex's book and had testing done through EnteroLabs. Good luck to you on your journey to healing. When you're first starting out it's hard to imagine that you will ever feel "normal" again, but it will come.

[crervin]

Hi Renee,

So sorry you had to find this website. The only thing I can add is start slow with supplements to see which ones may cause problems. For example start out for couple of weeks taking small amt d3 then work yourself up to more. Don't start 2 supplements out on the same day. Wait for a bit to make sure you can tolerate it. I'm 9 months in and I can only tolerate d3, mag oil, l-glutamine and l-methionine. I still can't tolerate B complex. Hope this helps and you find relief soon!!

[renee2]

Thanks so much everyone for the kind words and support. I called my doctor and reported the leg cramps and muscle weakness. I felt as if I were walking with cement boots and nearly fell down the steps when my left quad went out on me while going up the steps. Anyway, he told me to stop the budesonide and start pepto treatment. I just started that today. I sincerely dislike it when my doctor has his assistant call me with changes they want to make and no explanation as to how it's going to benefit me. She had to put me on hold and go ask him how the pepto was supposed to help. She couldn't answer my questions. So, I get that pepto is supposed to calm the colon but again this doesn't sound like a solid plan to me.

I mentioned the urine incontinence to her. It has only happened a few times but hadn't happened before the steroid. She tole me the doctor said that shouldn't be happening. Really? Like I couldn't figure that one out for myself. I'm going to assume he meant that it wasn't related to the steroid and I should consult my primary care if it continues. Given there are so many people who don't have the ability to process some of this information themselves and follow through, it's a wonder so many remain ill when there could be options.

My colon is calming down. I just hope with the pepto it stays that way and that I don't have serious side effects with it. I'm supposed to take three pills a day for six weeks. Thank God there's a capsule form. I hate the taste of that stuff.

[tex]

Renee,

I apologize — I was short on time when I read your original post and I forgot to address the leg cramps and muscle weakness that you mentioned. Those are clear symptoms of a magnesium deficiency, and that's very common with LC/CC/MC. Not only that, but a magnesium deficiency can cause increased and urgent urinary frequency. Been there, done that, and I found that it can cause some degree of urinary incontinence, especially if the urgency is ignored. Your doctor is correct that urinary incontinence is not a known side effect of budesonide.

Magnesium deficiency is a phenomenon that is almost always overlooked by physicians. It's a very common problem in the general population, and extremely common in IBD patients because not only is magnesium absorption reduced by the disease, but magnesium also tends to be depleted by IBDs. And yet I'll bet a GF cookie that you could ask a thousand MC patients if their doctor ever recommended a magnesium supplement to them and not one of them would answer "Yes". Mainstream physicians at least, totally overlook the problem — it simply is not on their radar.

To further jeopardize our magnesium reserves, corticosteroids (including budesonide) deplete magnesium. Like most of us, you probably had a magnesium deficiency to begin with, and the budesonide quickly depleted your remaining magnesium reserves, triggering the symptoms. Muscle weakness and leg cramps are "gold standard" markers of a magnesium deficiency. If you also had/have urinary symptoms then your magnesium reserves are almost totally depleted. Magnesium is stored in muscle tissue, and magnesium is necessary in order to relax muscles. Without sufficient magnesium, muscles do not respond properly to the nerve signals that normally control them. Instead they tend to contract/cramp and since they are unable to respond properly, they seem weak. So that's why muscle weakness and cramps are the most obvious markers of a severe magnesium deficiency.

Oral magnesium supplements can indeed cause problems if too much is taken. The safest oral form is chelated magnesium (magnesium glycinate), because it is very absorbable and the least likely oral form to cause diarrhea. The safest way to supplement magnesium though it by topical application. Magnesium oil or lotion on the skin is very effective, because it soaks into the muscles where it can be utilized and stored. Foot soaks in Epsom salts and adding Epsom salts to bathwater are additional options. It's best to limit oral magnesium during recovery to roughly 300–400 mg (scattered throughout the day), and this should be supplemented with topical applications in order to try to resolve a deficiency in a reasonable length of time. It can take months to correct a severe deficiency.

Vitamin D is not only safe to take, but highly recommended because IBDs (and corticosteroids) deplete vitamin D, and our immune system cannot operate without it. Since the immune system is in charge of healing, it's essential to maintain a good vitamin D level during recovery. Just check the label to make sure that it does not contain soy or soy oil. Vitamin B-12 supplementation can wait until after you are in remission unless you have obvious B-12 deficiency symptoms (tingling or numbness, muscle twitches, balance or gait issues, poor reflexes, anemia, etc)

Bismuth subsalicylate (Pepto-Bismol) was the first medical treatment recommended to treat MC, a couple of decades ago. According to clinical trials, it is more effective than budesonide, but the original treatment was for 8 or 9 tablets (or the liquid equivalent) per day for 6 weeks, in combination with a GF diet. The reason why the doctor who developed the Pepto treatment (Dr. Fine, the founder of EnteroLab) no longer recommends the use of bismuth subsalicylate is because a significant percentage of patients develop neurological symptoms, so they have to stop taking it. The biggest risk is tinnitis. These days, Dr. Fine recommends diet changes alone to control the disease. If it will help at that low dose though, then you are far less likely to develop any neurological side effects from it.

I hope that some of this is helpful.

Tex

[DJ]

These days, Dr. Fine recommends diet changes alone to control the disease.

Tex, It doesn't seem that diet alone controls the disease for all of us. If I began eating the foods I'm sensitive to I would be FAR worse off than I am right now. On the other hand, I've tried many things to pull out of a current relapse and nothing worked.

It would be nice if researchers discovered a way to deal with autoimmune problems. Until then, it's difficult.

[tex]

Hi DJ,

Thank you for pointing out the error in my statement regarding Dr. Fine's position on treating MC. The word "alone" obviously shouldn't be in that sentence. Unfortunately I chose to use it in the interest of brevity because I was too lazy to type a few more words to more accurately reflect his complete position on the issue. The proper syntax would have been, "Dr. Fine recommends diet changes as the first line of treatment to control the disease".

Yes, virtually all of us are painfully aware of the fact that some MC patients seem to be unable to achieve remission for various reasons. That's the main topic of my next book about MC. I still believe that it's doable, but I will certainly concede that in some cases it can be a formidable challenge because the disease responds to triggers that may be virtually anywhere in our environment, and they may be disguised or hidden. At the very least they are easily overlooked. And of course a major problem is that some of us have so many food sensitivities that until we manage to tone down our reaction threshold, there may not be enough safe options left to ensure successful healing without additional treatment interventions. But I truly believe that there is always a key to success in every case, if we can only find it.

Here's the gist of the problem: It's easy to explain success because if a treatment program is successful, we know that everything worked properly and we have the results to prove it. But we don't need to be able to explain success, because success speaks for itself. Success trumps everything else.

But what happens when a treatment program is not successful? It's impossible to specifically pinpoint why it failed because failure is not an end in itself (unless we choose to let it be). Failure is the temporary absence of success. Failure can occur in at least a million and one ways. But success occurs in only one way — everything has to be done exactly right. And inversely, success implies that everything in the treatment program was done correctly. So my main point here is that success is self-explanatory. When a treatment program succeeds, we know beyond a shadow of doubt why the program was successful. We know that the treatment was a success by virtue of the fact that success was attained. By default, success implies that the program worked correctly.

But a failed treatment program is never self-explanatory. A failed treatment program leaves more questions than answers. And the main point here is that there is absolutely no way to know why it failed. There might be some strong evidence pointing to certain possibilities, but the fact of the matter is that we can never be absolutely sure why a treatment program failed. The best we can do is guess. We know the solution is out there somewhere, but how do we find it? That's why a failed treatment program is such a tough gig. We know it failed, but we don't know why. Thomas Edison had the right idea when he said, "If I find 10,000 ways something will not work, I have not failed. I am not discouraged, because every wrong attempt discarded is just one more step forward."

So as I see it, here's the bottom line: I certainly agree with Dr. Fine that diet changes should always be the first line of treatment. But I also agree with you that with the more difficult cases, in the interest of pragmatism, at some point it may become necessary to use additional treatment intervention, at least on a temporary basis.

Tex

[renee2]

I just realized that I was supposed to take three PB three times a day and not one three times a day. I really feel like I'm wasting my time with all of this. Remaining hopeful that I won't relapse after the PB treatment is over is a challenge for me.

I did order magnesium spray and my legs are feeling better. I no longer have urine urgency either.

The diet thing isn't going so well though. I can't have spicy food, so I've eliminated that. It seems to help when I chew my food slowly and eat in a less stressful environment, so I'm taking my lunch break in the break room. I used to eat at the nurses station and that meant a lot of interruptions. I think the turkey and chicken that I was getting from Kroger's rotisserie section was triggering me, which is a disappointment because I really enjoy it. Does anyone know if they inject their meat with something that could be causing a flare?

Does anyone have a take on sodium. I tend to crave salt and I'm wondering if this has something to do with not feeling well.

I have noticed that I have a bit more energy, which I'm contributing to electrolytes becoming more balanced. I'm taking oral magnesium and vitamin D, but no where near the recommended amounts. I'm so afraid of this whole thing that I'm sure the stress is adding to my situation. I fear if I take the recommended dosages of D and magnesium that I'll get watery D again.

You all are some brave souls to go through this. I'm no stranger to physical ailments but this is just terrible.

[crervin]

all those rotisserie chickens have corn syrup in them. If you could get a Cornish hen (frozen dept) or turkey breast (frozen dept), cook those in a crockpot and then freeze in baggies for one serving each. Also cook up some jasmine rice (if u can tolerate rice), Put in baggies, single servings and freeze. Then heat up at lunch together with only salt in microwave for awhile. Or even bake a potatoe, only using salt and coconut oil. It should calm things for awhile. Eat that at every meal. Use the bones to make bone broth with only salt, use that to make a soup with the rice. Again freeze the broth for single servings.

Histamines are a big problem for most of us and only God knows how long that meat has been laying there. I go for everything frozen, even veges for now. If it ain't frozen, I don't eat it. I freeze bananas as soon as I get them.

Cape cod has potatoe chips, only get the plain ones that have minimal ingredients. If you can tolerate potatoes.

Stress is a big problem with this. It will pass soon. We were all where you are at now! Me not so long ago.....crying in the grocery store .

I so hope this helps and you find relief!

You can do this, especially if you are a nurse! May God bless all nurses!! You all are one of a kind and i have so much respect for you!

[tex]

Renee,

I agree with Martha of course. Most supermarket chickens are injected with a "moisterizing" or "tenderizing" solution these days, and that may apply to the ones that you have been getting, also. The details of injected ingredients typically won't be listed on the top label — you have to check the bottom label on chickens to discover if they have been injected. Even pork, and in some cases beef is injected these days.

You are correct that chewing carefully and eating slowly helps with digestion. And if you crave salt, you probably need it. We tend to be low on most or all electrolytes at times. You cannot overdo topical applications of magnesium, because it cannot cause D. As long as you limit oral magnesium to 300 mg or less, it shouldn't cause any digestive problems, either. But please don't use the cheap magnesium oxide that most hospitals stock, because it's notorious for causing D. The safest form is chelated magnesium (magnesium glycinate).

As you are probably aware, the only things absorbed in the colon are electrolytes and water, but when MC is active, that process is reversed and electrolytes and water are infused into the colon. That's what causes secretory diarrhea, the trademark watery D that's so common with MC.

You have one of the most stressful jobs in the world. Anything that you can do to minimize the stress will make controlling your MC symptoms easier.

Tex

[renee2]

Thanks for the cooking tips. I seem to tolerate rice and potatoes well, but I'm not one of those who lost weight during this process. I've gained a lot of weight and I feel miserable. My stomach is hugely distended. I've taken to wearing my scrubs when I go out because I can't wear other clothes just yet. I have never felt so hungry all the time. I wonder if that isn't a sign of malnutrition that will improve. Anyway, it seems as if I eat meat, rice and potatoes I'll just bloom even more?

I'm trying not to focus on that because I realize my over all health is more important, but I've been a relatively healthy eater my whole life and cutting out the things I love and learned were good for me is so very hard.

[renee2]

Tex, I don't really get the difference between infused and absorbed. I also can't figure out why white cells have nested in my colon at this stage of the game.

There seems to be a lot to understand.

Yes, nurses have a difficult job. I am a respiratory therapist, so my challenges differ a bit. I have the responsibility of making sure eighteen ventilator dependent people continue to breathe throughout my shift. It is a very demanding job and I have noticed my symptoms are worse when things are stressful at work. The patients have no control over any aspect of their lives and they struggle a great deal. Fortunately I've been in this position for thirty years so I feel competent and way more relaxed than the new RTs but it is a challenge.

[tex]

My stomach is hugely distended. I've taken to wearing my scrubs when I go out because I can't wear other clothes just yet.

That's a result of the food sensitivities of course. For several years (before I figured out what was wrong and while I was recovering), I had to go to work with the top 2 or 3 buttons of my Levis unbuttoned, Fortunately a big rodeo-style belt buckle covered the gap.

I have never felt so hungry all the time. I wonder if that isn't a sign of malnutrition that will improve. Anyway, it seems as if I eat meat, rice and potatoes I'll just bloom even more?

That's the budesonide. For many people it's a big appetite enhancer. Eat all the safe protein (meat) you can handle. It takes a lot of protein to heal the gut.

Tex, I don't really get the difference between infused and absorbed. I also can't figure out why white cells have nested in my colon at this stage of the game.

Normally water and electrolytes are absorbed by the colon and recycled, but with secretory diarrhea the process is reversed and the colon injects water and electrolytes into the lumen (the interior). That's why dehydration can become such a serious threat. Most physicians point out that MC is a benign (non-fatal) disease, but in fact there have been numerous deaths with MC because of the complications associated with dehydration.

The increased lymphocyte counts are typically present in most of the GI tract for most of us. Doctors only bother to note the increase in our colon, because that's the arbitrarily-designated diagnostic marker of LC. The lymphocytes are killer T cells sent there by our immune system in response to the production of antibodies against the foods to which we suddenly became sensitive as we develop increased intestinal permeability.

When the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also almost always triggered, and gluten sensitivity causes increased intestinal permeability (aka leaky gut) which allows partially digested peptides of certain foods such as casein, soy, egg albumin, etc. to pass into the bloodstream. Because the immune system knows that these peptides should not be there, it produces antibodies against them, and this creates food sensitivities (resulting in the antibody production and T cell infiltration mentioned above).

The patients have no control over any aspect of their lives and they struggle a great deal.

That's the ultimate stress. The stress associated with caring for others who cannot live without that care is severe (as you are well aware), but the stress associated with having no control over one's own life is much more severe.

I can relate to that. After my last surgery (emergency abdominal) I was stuck on a ventilator for several days because the doctors didn't believe that I could breathe on my own. It's scary being dependent on a machine, and wondering if you will ever be able to breathe on your own again. When they finally allowed me to eat some solid food again, I choked on some chicken and rice and coughed up all my tubes. I thought I was a goner, but I was finally able to get some air, and so I made it. And then the doctor in charge insisted that I would have to have the respirator tube reinserted. When I balked at that, he said I had a choice of the tube or taking a PPI every day. I chose the PPI

A few weeks after I was discharged from the hospital I woke up one morning with a mouth full of stomach acid. That's when I learned first hand how insidious PPIs can be. I had only used them for about 3 days (up until I was discharged), but suddenly I had an acid reflux problem. Fortunately it usually only occurred whenever I happened to lie on my right side, so by taking precautions, my lower esophageal sphincter slowly regained it's strength, and after about 6 months the reflux problem was pretty much resolved. I can only imagine how tough it must be to recover from using a PPI for a year or more, as so many patients have to do. That has to be quite an ordeal.

Tex