Newly Diagnosed with LC (12-20 trips/day) WTFO???

[raharris3]

Hello all - I noticed this site a few days ago. I did not post in spite of a diagnosis last month because I expected this problem to go away!!! That was 2 months ago and no real change. What has happened to me??

I am a chronic pain pt w 3 major back surgeries, prior hx GERD, etc due to NSAIDs, but better now. Pain is controlled with Lyrica, Flexeril and Methadone. and I took Nexium with flareups. I have failed back surgery syndrome, intercostal neuralgia, lumbar radiculopathy, sciatica, osteoporosis, GERD, Barretts (but mostly resolved), hypothyroidism, hypogonadism, vitamin D deficiency (in Florida, no less), growth hormone deficiency and a few more issues. Mostly it is all related to either the treatment or result of back problems. i was on active duty as US Army officer for 26 years, ret 1997, then worked until 2003 after 3rd back surgery when MDs then put a stop to my work life and I retired early.

Then 2 1/2 months ago, ILO more common problem of being somwwhat blocked up, I developed diarrhea, and then some, but no fever and no weight loss!!!! It took my wife insisting that I go to see my MD. I thought maybe food poisoning, but had not really had any change of diet nor of meds so I figured it would clear in 7-10 days max. Wrong!! MD then prescribed CIPRO awaiting specimen processing. Normal flora/fauna... no help, stopped antibiotics and started Lomotil - no help, so saw my GI doctor. He was concerned, colonoscopy 3 days later showed LYMPHOCYTIC COLITIS and he started me on Hyomax and Lialda. Now 60+ days total and I have not yet had a solid/semisolid BM. Just had endoscopy and blood work , incl check for celiac. I see him again next week. i have only found a little info about this issue, not much beyond yeah you have this and we don't know why or how long, or much of anything.

What should I be doing? Not doing? I do not drink or smoke and eat a decent diet - my wife is Vietnamese and we eat lots of fruit and veg. Plus, she is vegetarian, so I eat only a small amount of meat/fish. 1-2 cups good coffee per day, no colas, occasional root beer. I'd appreciate some basic advice. My wife is worried and I am pretty cranky with this added in, but trying to be positive in spite of starting to lose appetite and interest in food. I have had bad cramps, too, though they have somewhat abated. I do not want to leave the house unless absolutely necessary because of frequent trips to the latrine that are compuksory as soon as the cramp hits and there is no rhyme or reason or pattern that I can discern -- other than a maybe 2 hour window approximately 1200 noon to 2-3 pm

Bob

[tex]

Hi Bob,

Welcome aboard. I'm sorry to hear of all your medical issues, and I'm sorry that LC has been added to the mix. Autoimmune diseases tend to run in "packs", so many of the rest of us also have multiple autoimmune issues. As you have found, this can be a very debilitating disease, in itself. Some of us have found that after we control our MC, many/most of our other issues either get better, or disappear altogether. There is a very good chance that the NSAIDs may have contributed to your developing MC, since they are a common trigger for the disease. If you will explore this site, you will find that we have assembled what is arguably the largest database of information related to treating and living with microscopic colitis, in the world, and the built in search function, (not the Google search, but the "Search" link above it), will help you to locate past discussions about virtually any question that you might have.

Basically, noting that no one knows more about this disease than the people who have to live with it every day, we learn by sharing experiences, insight, and research. Obviously, there are many details to be considered, but to answer your question about what you should, (or should not), do, here are some basic guidelines that we have found to be helpful, in achieving remission with this disease. YMMV, of course.

Unfortunately, there is no known cure for MC, (CC, LC, or any of the other known forms of microscopic colitis), but the good news is that the symptoms can definitely be controlled. Bearing in mind that we are all different, and we all respond differently to both meds and diet, there are three basic treatment options.

1. Certain drugs that are capable of suppressing inflammation, (LC is an inflammatory bowel disease, despite the fact that the American Crohh's and Colitis Foundation chooses to ignore it). The most effective "safe" med, (for the most people), seems to be budesonide, (in the form of Entocort EC, which is an encapsulated form of budesonide, so that it does not become activated until it reaches the ileum and the colon. By passing through the duodenum and jejunum in inactive form, only about 10 to 15% of it is absorbed into the bloodstream, thereby preempting the tendency of most corticosteroids to cause major systemic adverse side effects. It is effective in bring remission for approximately 6o to 70% of members. The 5-ASA meds, such as Asacol, Pentasa, Colazal, Lialda, etc., do not seem to be very effective in bringing remission, though some people have fairly good success using them as maintenance meds, after remission is achieved.

2. Diet control is the safest way to control your symptoms, (since it has no adverse side effects), but finding and eliminating all of your food intolerances from your diet, can be a tedious and frustrating project. Most of us are sensitive to gluten, (the primary protein in wheat, barley, rye, and for some of us, oats), and casein, (the main protein in all dairy products), and about half of us are sensitive to soya, (the main protein in soy beans). Some of us are also sensitive to various other proteins, such as egg whites and corn. Certain foods are irritants to the intestines, even though we may not actually be intolerant of them. Foods in this category include items with significant amounts of fiber, and/or sorbitol, (such as most fruit, and many vegetables), lectins, and/or lecithins, (such as legumes). Artificial sweeteners, especially aspertame, usually cause problems, as do the sugar alcohols, (sorbitol, manitol, etc.). Until you reach remission, and allow sufficient time for your gut to finish healing, never eat any raw fruit or vegetables - especially never eat any raw lettuce. If fruits and vegetables are well-cooked, (overcooked, really), you might be able to tolerate some of them. For example, most us can tolerate potatoes, well-cooked squash, broccoli, or green beans, in moderation. Be careful when you buy meat, because a lot of it is "injected" with "moisturizing solutions", that may contain gluten, or other intolerances, (such as preservatives). This is especially true of poultry, but a lot of pork is also injected. After your gut has time to heal, you'll be able to add many of these foods back into your diet, (most fruit, vegetables, etc.).

3. A combination of diet and meds is necessary for the most difficult cases. Also, Entocort will allow remission sooner than the diet, alone, so some members use it to help relieve the symptoms, while the diet is helping to heal the gut. After the gut heals, some members are able to discontinue Entocort completely, and maintain remission by diet alone.

If you are interested in trying to control your symptoms by diet, there is a lab in Dallas, TX, known as Enterolab, where you can order test kits, for stool samples, and they can accurately and reliably test for certain food intolerances, in order to simplify the process of deciding which foods are major problems. In general, the skin allergy tests, and blood tests, are pretty much useless for determining the types of food sensitivity that are triggered when LC is triggered.

https://www.enterolab.com/Home.htm

Again, welcome to our group, and please feel free to ask any questions that come to mind. Trust me, we've all been there, done that, and most of us have had "accidents", in some unfortunate locations, so we know what you are dealing with, and how you feel. People who do not have this disease, really have no idea what it's like to have to live with these symptoms, and that especially applies to GI docs. The bottom line is, you can get your life back, but it's not easy. We're here to help you in any way we can.

Tex (Wayne)

[Gloria]

Welcome Bob!!

You have had a great many physical problems to deal with. I'm so sorry that MC has been added to them.
Tex gave you an excellent response. I think he should save it and use it whenever a new member joins. Tex is our resident expert and we love him dearly. He reads every message and responds as quickly as he can. We are fortunate to have him manage this board.

Tex mentioned the various options for managing this disease. I'm one of the more difficult cases and am presently managing my LC with a combination of diet and Entocort (presently 3 mg per day). I live a normal life now, making trips to the bathroom only 1-2 times per day. Keeping a food/elimination dairy helped me determine which foods were problematic. I've been keeping one since the onset of my LC because I believe that what I eat affects my gut. I also used NSAIDS prior to LC and will always wonder what part they played in my getting this disease.

There is hope for you! Most of us here have been able to resume normal lives by following one of the methods of management that Tex outlined above. Please don't be afraid to ask us for help. We know what you are going through and want to help.

Gloria

[Delta]

My diet pre-MC had a lot of fresh fruits and vegtables in it, in order to gain control I had to abide by a very bland diet which consisted of a lot of rice, chicken and fish. Even now as I have gained some control over it I can only eat a small daily portion of fruit, no lettuce but I can tolerate spinach, broccoli, asparagus, potatoes, yam, pineapple.....but not very much. I have had to eliminate things that I have eaten all my life, eggs, milk, gluten, oatmeal, etc... before I could make any headway with the diet. In the begining it was like you say, 10-15 trips to the Head (sorry I'm Navy) cramps, shooting pains and aches of all kinds. When it was time to "go" believe me, I had better be real close or I was in trouble. For myself that laste 4-5 months, and it took several months for diet changes to help.

I would suggest getting a full panel of tests done by Entero Labs if you can afford to, it is nearly 400.00 and my insurance did not cover it, but the results saved me time by knowing immediately what I needed to eliminate from my diet, and it identified Celiac which I had been tested for thorugh my doctors office and it showed negative.

Everything Tex says is prtty much on the money, he and others here are far more knowledgable than any doctors I have seen. There is a ton of information here if your willing to take the time and read, search it thouroughly you will find a lot of useful information.

I'm stubborn and don't like medicine, but if you want to speed up the process then definately take a look at Entocort. I think it has a high success rate with very little side effects.

Good luck and I hope you get on track soon.

[MaggieRedwings]

Welcome Bob!

First things first - thank you for serving our country - you are to be congratulated for that.

You have a really full plate you are dealing with and the best I can say is that Tex, our guru, is right on the money with his advice and we do have the largest respository of information for this disease. I honestly have to say that you should take most Gis advice with a grain of salt since they really have no idea of the different ways - especially diet - that this disease can be dealt with by us. We have all been where you are - most with less side problems than LC - but honestly, anything can be asked on this board and we are here to help.

Looking forward to seeing another gentleman posting on our board.

Maggie

[starfire]

Welcome, but so sorry you have so many physical problems. I am really sorry this disease has topped it off!! I can't imagine how "cranky" I'd be with all those problems (& pain).

My son had 26 years with the Navy when he retired last year. He is looking for a job now.

I think you will come to a better understanding of this stuff if you do as Delta suggested - Dig and read right here on this site. Also, unless you are sensitive to it or just don't want to be on meds, I'd recommend Entocort also. I am maintaining on Asacol but that isn't for everyone either. I'd go back on Entocort anytime I felt the need to do so.

Shirley

[RUBYREDDOG]

Welcome Bob, Sorry you had to find us in this way, but I think you will be glad you did. AS Tex mentioned, we all have gone through what you are experiencing, and as a group, our experiences are the best source for your path to remission. I know that sounds a bit arrogant, after all, we are not G.I. doctors here, but most of us have not found much relief from the real GI doctors. So we depend on each other for solutions.

For a lot of us, it takes several months to start seeing positive results from treatments. And over a year (some much longer) to achieve remission. So be patient, and read all you can from this site and others to become informed. You must take control of this medical situation yourself. Good luck.

Gloria, I have often thought about your suggestion that Tex should post a standard "where do I start" response to newcomers to this site. I think it is a good idea.

Hotrod

[grannyh]

Welcome and glad you found this site. I don't know what I would have done without this site and all of the helpful folks. It was such a relief to know I wasn't alone with CC. When I was diagnosed the doctor said the disease was rare.. and although he had someone interview me and present a paper on CC.. they could find no other doctors who were treating patients with CC. Once a doctor told a patient there was no cure.. the patients didn't come back.. well DUH!! My GI doc was a practicing doc and a professor. He had taught about the disease for over 20 years but had never seen a case. He was rather thrilled...LOL In less than three months he had several more patients.. why all of a sudden after all of those years of teaching.. well it seems that insurance companies didn't pay for biopsies during colonoscopies unless there was something VISUAL. "Lucky" for me.. there was a small visual problem and biopsies were done . The visual problem was not serious and went away.. it was the CC that was discovered that was the problem...

Entocort was taken off the market at the time I was diagnosed. After it came back on the market.. I decided to try it.. and it has worked wonders for me. Except for several trips to the john in the morning.. I am usually fine for the rest of the day.

There is no one way to get any relief from LC and CC. You will find all kinds of ideas on things to try that may work for you. Everyone's goal here is to tell their experience to give everyone else hope.

Sorry there are no "easy" answers but there is hope and lots of support here.
grannyh

[raharris3]

Thank you all for the kind words and encouragement. I just located an interesting study in the current issue of GASTROENTEROLOGY: 2009;136:2092–2100 Budesonide Is Effective in Treating Lymphocytic Colitis: A Randomized Double-Blind Placebo-Controlled Study

http://download.journals.elsevierhealth ... 003655.pdf

Conclusions: Budesonide effectively induces clinical remission in patients with lymphocytic colitis and significantly improves histology results after 6 weeks. Clinical relapses occur but can be treated again with budesonide.

This seems to mirror info from this group, and also be part of the established med community. I get the feeling that most of you have had a lot of trouble and inconvenience working with your MDs/DOs. Maybe some light is being shed now on this problem and I happen to be effected at a rather :good (a relevant term, 2bsure) time.

The article may be useful for me to bring to my appointment next week w/ my GI to start TX while waiting for labwork from Dr Fine's lab (which seems to be to be the next most logical step -- then I can address diet once issues are clear.) Does this seem reasonable??

Again -- thanks for the welcome.

Bob

[grannyh]

As I said in another thread it is helpful to have a doctor who doesn't believe he knows everything about CC and MC. They are more open minded. Hopefully, your doctor will amenable to looking at the study.

I have a friend who has CC. She was diagnosed way faster than I was.. she was diagnosed in 6 weeks..took me a couple of years. She wrote to ask me questions since she knew I had CC and had achieved remission with entocort ec. She told her doctor about this site and the entocort. The doctor was LIVID. He had put her on high doses of steriods... which do work .. and were the medication of choice in "the dark ages".. but have severe side effects. That she would refer to a web site run and contributed to by non professionals was totally unacceptable to him. That she would refer to my suggestion of entocort.. I am not a professional.. was more than he could stand! He is head of gastro for a major teaching hospital and threatened to dismiss her as a patient if she preferred to listen to non professionals. My friend had no other choices of doctors with her medical plan.. she still can't get entocort prescription from this doctor. Now this may be because she has an HMO and costs determine treatment.. and prednisone is CHEAP. Entocort is about $400 a month (at last check). Thankfully, my insurance paid for it before I went on Medicare and I am still covered with the supplemental insurance we have.

Hope you are successful with whatever method you try for remission.
grannyh

[tex]

Bob,

I'm probably looking at that article unfairly, but IMO, that research project was simply the result of a group of researchers with nothing to do, looking for an easy way to get published. The first sentence says it all:

Background & Aims: Budesonide is effective in treating collagenous colitis, but no treatment is established for lymphocytic colitis.

Anyone who knows anything at all about the family of diseases under the classification of microscopic colitis, (including CC, LC, clear cell colitis, giant cell colitis, paucicellular LC, cryptal lymphocytic coloproctitis, etc.), knows that the clinical symptoms are basically the same, and the treatment is the same. Those guys were just looking for a "free throw", (an easy way to get an article published), when they discovered that no one had officially documented a study using budesonide to treat LC. I'm probably being unfairly critical of them, but that's the way I see it, for better or for worse.

Still, it is indeed a valid research article, so there's nothing wrong with showing it to your GI doc. Some doctors seem to appreciate a patient who is willing to learn about his or her medical issues, while others seem to be offended, as if they are insulted, because they view the patient as trying to "second-guess" them. Grannyh's remarks are right on target. It can be very risky to indicate that you are knowledgeable about a disease, especially if your knowledge had anything to do with what you learned from an internet support group. Many GI docs seem to have fragile egos, and they tend to behave as though they are very insecure. Maybe you can sort of "feel him out", before bringing up the controversial stuff. Unless your GI doc tends to stay up with "cutting edge" technology, be prepared to see him roll his eyes, if you mention stool testing and food intolerances, in relation to MC. Very few GI docs realize that stool testing is not only valid, but much more accurate than any other medium, (for finding food antibodies), and most of them will argue that diet has nothing to do with MC. Some GI docs are much more open-minded than others, but our experience has been that a high percentage of them tend to be very stubborn about clinging to "myths" that they picked up somewhere in med school, concerning diet and MC. Hopefully, you will be one of the lucky ones, and your GI doc will be open-minded. Some members have found that the younger GI docs are sometimes more progressive in their understanding of MC.

For some reason or other, here on the board, we have found that the relapse rate is much higher than is consistently quoted in research projects of that type. We have found that the relapse rate approaches 100%, unless the patient removes all food intolerances from her or his diet. Maybe some of the test subjects modified their diets, to achieve the same effect, but since the medical "experts" deny that diet has anything to do with MC, they never bother to note the effect of diet in such research projects. In their trial, the relapse rate was 42%, (15 divided by 42X86%). Also, a remission rate of 86% is extremely high. Most such trials find that the actual success rate is usually in the 60% to 70% range, unless higher dosage rates are used, (doubling the dose of budesonide will increase the success rate by 10% to 15%, in most cases).

The biggest problem with that study, is that, (like most research projects concerning the treatment of IBDs), they are viewing the treatment as if it were a cure, when in fact, there is no cure for any of the IBDs. The proper way to use Entocort, is to take it full dose, for approximately 6 months or so, and then taper the dose slowly, to whatever minimum dose will effectively maintain remission, (usually 3mg per day, or ever other day), and then continue to use that minimal rate indefinitely. That is not the way that Entocort is labeled, but the label is simply a guide - doctors are pretty much free to use it as they see fit, for the benefit of the patient. I doubt that Entocort is actually labeled for MC, anyway - it's labeled for Chron's, but not UC. The reason it's not labeled for UC, is because the enteric encapsulation used with Entocort EC, releases the budesonide in the ileum and the proximal colon, (the first part of the colon), and UC affects only the distal colon, (the end near the rectum), and rectum itself. Anyway, this type of program, (using a maintenance dose), tends to eliminate all the needless suffering that IBD patients are forced to go through by GI docs who insist on stopping the treatment after 6 months, and then resuming it again, every time a relapse occurs. With Prednisone, a maintenance treatment is not practical, (due to the adverse side effects, and long-term damage to the adrenals), but Entocort EC is a different kind of cat, due to the fact that only 10% to 15% of it is absorbed into the bloodstream, because of the encapsulation. Of course, if you choose to control your symptoms by diet, a maintenance dose of Entocort should not be needed, if the diet is carefully developed and followed.

Yes, you're quite correct - many of us have been very disappointed in the performance of our GI docs. In fact, many of us find that once we have a diagnosis, our PCP is easier to work with, if we need a prescription for Entocort, for example.

I certainly wish you the best of luck, and I hope that your GI doc turns out to be very easy to work with, and open to your input, concerning your treatment. After all, it's your body, so you should certainly play a major part in the decisions involved with any treatment options.

Tex

P. S. Thanks for posting that article under "Current Research". That way it's much easy to find, for future reference.

[raharris3]

Thanks, Tex. I think I'm getting the hang of this group. I appreciate being able to avoid many of the pitfalls you folks all went through and be able to capitilize on your knowledge and experiences. This is not what I thought would keep me at home, given my other issues, but until I know more about this and it quiets down more, it is almost worse than chronic pain. To look on the bright side, though, constipation did cause my back pain to increase substantially, so I have actually received some benefit from this problem!!! Yeah, I'm reaching, but why not! I think my GI guy will respond well. If not, it tunrs out that my pain doc (MD, anesth/ subspec - pain mgmt) is actually afflicted with LC himself so I can share this with him and get whatever I need there. I have a pretty good net with a PCP (DO), Pain Mgmt MD, endocrinologist - MD, GI (DO) & EENT (DO.) They all believe in the complementary and alternative side as well, and I go to Vietnam with my wife and see an internal medicine MD there who is also a doctor in Chinese medicine and an acupuncturist. My MDs here seem to realize that the Eastern Med works as well or better for chronic conditions and my MD/DOs seem genuinely interested in what I learn and apply from there. Hopefully I am in remission before my next trip to Asia this fall, or it could be messy.

On my way to Pain Mgmt today,

Bob

[starfire]

Bob,
How naughty of me but I am almost jealous of you having a doctor who actually has this disease. HaHa To bad he isn't a gastro!!

Please keep us up to date about your Chinese doctor and how that all works out for you. Very curious.

Shirley

[tex]

Bob,

It sounds like you have a good network of caring, knowledgeable doctors, and as Shirley points out, having a doctor who has LC himself, is definitely a big plus, because when he tells you that he knows how you feel, you can be sure that he truly means it.

Here's a tip that you might want to use, just in case the diarrhea is still present the next time you fly to Vietnam, (or anywhere else, for that matter): It's possible to get a statement from your doctor, that you can make copies of, and present to the airline, (ahead of time), which will allow you to be seated next to the "washroom", and thereby remove most of the worries about flying with LC.

http://www.perskyfarms.com/phpBB2/viewt ... t=bulkhead

Thanks for the kind words, and good luck at your appointment today,
Tex