Intro

[BearcatRx]

Good afternoon everyone,

Just wanted to introduce myself to the board. I'm a licensed pharmacist in the midwest and I just recently have been diagnosed with lymphocytic colitis. Though I'm not too sure I agree with said diagnosis. After reading several posts on the board and reading some primary literature, my symptoms don't seem to fit the bill. I have no weight loss, no watery BMs, no lethargy. I have been experiencing mild cramping, some urgency and loose BMs for approximately 16 months.

My symptoms began approximately 5 days after returning from vacation in Costa Rica. My MD did the battery of stool cultures, which unfortunately were all negative. I even did a trial run of cipro and tinidazole to treat giardia and travelers diarrhea. None worked. Finally I got a colonoscopy with biopsy done last week. Colonoscopy was clean, however biopsy showed, "The crypt architecture is maintained. There is mild expansion of the lamina
propria by inflammatory cells and edema. There is increased intraepithelial lymphocytosis and no significant thickening of the subepithelial collagen table. These findings are compatible with lymphocytic colitis."

So my MD asked me if I was on any medications, which I am not. I take no supplements. So basically he told me he had no idea how it is I had MC. So I just started on budesonide EC 6mg QD and Lialda 2.4g QD. So far so good.

Anyways, I'm glad the site is here for me to read up on and I am always open to answering any questions on medications! Thanks for having me.

Bearcat, PharmD.

[TXBrenda]

Bearcat, welcome to our family. Sorry you had to find us. Ask away, someone will know the answer to your question or have some information regarding what worked for them.

[nerdhume]

Welcome to the group Bearcat.
I'm wondering why you are on such meds if your symptoms are not that bad. Mostly I just try to control symptoms that interfere with my life.
Hope it works out for you.

[tex]

Hi Bearcat,

Welcome to the board. We have many members here who have limited symptoms. Believe it or not, some of us even have constipation rather than diarrhea. Those cases are usually the hardest to resolve, because conventional treatments usually won't work for them, and it's difficult to track down the source of their inflammation. However, based on the findings on your pathology report, it would be virtually impossible for your diagnosis of LC to be incorrect.

I'm wondering the same thing as Theresa. If your symptoms are relatively mild, why on earth would your GI doc hit you with a double treatment regimen? Doubling up on treatments is not always a good choice, since there is always a risk of an adverse reaction to one or the other, and by taking both, if you happen to react adversely to one, it would override the anti-inflammatory benefits of the other and prevent it from working, and you wouldn't know which one was the problem.

Apparently his plan is to quickly gain control and then use the Lialda as a long-term maintenance med. While that works for some people, most of us prefer to control our symptoms by avoiding the foods (or medications) that perpetuate the inflammation, rather than to take an anti-inflammatory medication for the rest of our life.

If you're wondering why you would suddenly become sensitive to certain foods, the genes that predispose to gluten sensitivity are typically triggered at the same time that the genes that predispose to MC are triggered, and this opens the door to additional food sensitivities, once intestinal permeability increases. The meds can suppress the inflammation, but they can't prevent it from being regenerated. Only the proper diet changes can do that. The lack of diet changes is the reason why virtually everyone who goes the medical route suffers a relapse of symptoms after an Entocort treatment regimen is completed. And that's presumably why you're taking Lialda concurrently — to postpone that relapse.

As far as to why you developed MC, there are many, many different possible causes for MC. But one possibility that really ups the odds is a vitamin D deficiency. Do you know your 25(OH)D level? The development of an IBD is often associated with a vitamin D deficiency, and all IBDs deplete vitamin D blood levels. That includes MC. In order to help suppress the inflammation that causes MC, and to minimize our chances of developing additional AI diseases, it behooves us to test our vitamin D level occasionally, and make sure that it is well up in the sufficient level, or else take a daily vitamin D supplement to help keep our vitamin D level up in the safe range. This is important, because there is a strong association between low vitamin D and the development of additional AI issues, once we have an IBD.

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

Tex

[BearcatRx]

I'm wondering the same thing as Theresa. If your symptoms are relatively mild, why on earth would your GI doc hit you with a double treatment regimen?

Hey Tex, thanks for the welcome. I was a little curious myself. Especially since I'm on a HSA plan and the budesonide cost me 600 dollars, Lialda approximately 70. My symptoms were totally controlled by 2-4mg of loperamide when needed. However, I told him I was pretty annoyed with the entire situation. I find myself popping a pill or two almost on a daily basis. Not because I have symptoms but because I don't feel like risking getting that random cramping feeling while I'm at work or out for dinner, etc. The budesonide, he wanted to do a taper. 6mg for a month, 3mg a month then stop. Lialda has 5 refills on it so you may be correct.

As far as vitamin D, I've not had my levels tested. I've tried a few changes in my diet, avoiding gluten, lactose, etc. However, I can't seem to pinpoint a specific item that seems to cause me issues. One thing that really had me confused is why exactly everything just took place after my return from vacation. A lot of people develop issues after coming back from places in Central America. I didn't think it could have just been coincidence, but perhaps it was.

[humbird753]

Welcome to our group, Bearcat. Sorry you had to find us, but you'll find a lot of helpful information here.

When I was diagnosed with "mild" LC, I was advised to take 10 pepto tabs a day for 8 to 10 weeks. Nothing was ever mentioned about the foods I was eating. I was also told that if the pepto protocol didn't work, I was to make an appointment with a Gastroenterologist specialist. The pepto tabs did not help me at all. The gastro recommended Entocort. After doing a bit of research on the drug, I chose to try to resolve my symptoms naturally. I am not implying everyone should do it without the aid of prescription drugs. Each of us is different. After finding this forum, I then understood I had to simplify, so I eliminated gluten and dairy from my diet along with irritant foods like raw fruits and vegetables, and all supplements except for Vitamin D3, B Compex and magnesium. Although my symptoms subsided, I thought they should have gone away sooner than they did, and I wondered if I had additional food sensitivities I was not aware of, so I then ordered a stool test kit from Enterolab. My results showed I was only reacting to gluten and dairy, so I have remained 100% gluten and dairy free now for over 2-1/2 years. It's amazing how my symptoms have and continue to fade away. I have found the gut heals slowly. I was always a physically active person, but my symptoms left me unable to do the simplest things. Although I continued to work at my job, that was about all I did. I am now able to golf, take long walks, go bike riding, even go shopping and no longer have to worry about where the nearest bathroom is.

I can certainly see why you believe there's a correlation with your vacation, but at the same time it may only be a coincidence. You are fortunate you don't have more noticeable symptoms, but IMO you will in time if you don't remove the foods you have become sensitive to. I wish you the best on your journey.

Paula

[Gabes-Apg]

Welcome !!

There are many people here that a bacteria or parasite infection in overseas country and then subsequent use of strong antibiotics was the trigger that woke the MC bear.

Generally there is multiple influences as to why we get MC, and some have mild or intermittant digestion issues for a while and then there is a semi usual type event that seems to make the volcano explode.

if you do a search and read the previous discussions on what causes MC, you will see quite a few similarities amongst the members (there is a recent poll with comments/discussions at the top of this Main Message board area)

As has been already mentioned, the crappy part (pun intended) of MC is that we are all different, a medication like Lialda can work really well for one, and cause complete chaos for another. and as Paula mentions the Pepto did nothing for her, yet it has worked for others. The key to success is figuring out what works for you... not just a med that helps the symptoms, but also what you can afford and you are comfortable taking. It is the same for Diet, supplements, activities etc etc. there can be a myriad of differences amongst the group.

one area that is very common for MC'ers is Histamines/Mast Cells. When you have some reading time we recommend you have a peruse of the information http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780

hope this helps!
happy healing

[tex]

A lot of people develop issues after coming back from places in Central America.

You're sure right about that. I can't help but wonder if they might have missed a parasite or a bacterium. Some of the tests used, especially certain culture tests, will yield false negative results in some cases (sometimes more than once), before producing a positive result. C. diff is a good example of that (but you obviously don't have C. diff, of course). Sometimes mistakes are made, and sometimes just plain bad luck is involved. And in some cases, if they don't test for the right pathogen or parasite, similar to taking biopsies to detect MC, they will completely overlook the problem. IOW, sometimes you have to know what you are looking for, or you cannot find it.

It's not impossible that you might not have any food sensitivities at this point (if you don't have significantly increased intestinal permeability). This is sometimes the case with drug-induced MC. In such cases, if caught early enough, just discontinuing the use of the medication that triggered the syndrome can bring lasting remission (as long as that family of medications is strictly avoided). I have a hunch that the same scenario might be possible when a parasite or bacterial infection triggers the disease (IOW, eliminating the infection might eliminate the MC), if done in a timely manner.

If food sensitivities do exist though, tracking them down by trial and error testing is usually much more difficult than meets the eye, unless only 1 or 2 foods are a problem. I had many food sensitivities, and it took me a year and a half with careful record-keeping to figure them all out. The problem is that when we have multiple food sensitivities, as long as traces of any of them remain in our diet, we will continue to react. So if we miss one of them, we learn nothing about any of them, unfortunately. And as Paula pointed out, in some cases, a lot of healing may be required before the symptoms resolve. The gut heals very slowly (except for kids — they usually heal in less than a year). Healing typically takes from 3 to 5 years or more for adults, and as we get older, healing slows down even more.

I hear you about the cramps. When I was still reacting, my symptoms came in the form of alternating diarrhea and constipation. When the cycle began to switch from diarrhea, I would go through a period of a couple of days with occasional cramps, and when 1 would hit me, it would sometimes literally bring me to my knees. Fortunately, in my case they usually passed within a few minutes, and then I would be good to go again, but some of them were really rough.

Tex

[BearcatRx]

You're sure right about that. I can't help but wonder if they might have missed a parasite or a bacterium. Some of the tests used, especially certain culture tests, will yield false negative results in some cases (sometimes more than once), before producing a positive result. C. diff is a good example of that (but you obviously don't have C. diff, of course). Sometimes mistakes are made, and sometimes just plain bad luck is involved. And in some cases, if they don't test for the right pathogen or parasite, similar to taking biopsies to detect MC, they will completely overlook the problem. IOW, sometimes you have to know what you are looking for, or you cannot find it.
Tex

True, which is why I did two tests. Although I know sometimes it can take several stool samples to show a true positive. The tests they ran, which all came back negative were: microsporidium ova and parasites, bacterial, cryptosporidium and giardia antigen and C. diff. They also ran CRP, CBC w/ diff, transglut IgA. All negative.

[dfpowell]

BearcatRx

Do you know if Entocort is good beyond its expiration date?

Thanks,

[BearcatRx]

BearcatRx

Do you know if Entocort is good beyond its expiration date?

Thanks,

I get that question a lot at work. The expiration date on the pill vial vs the manufacturer bottle is different. At my pharmacy, we put "do not use after **1 year from fill date**". The stock bottle from the manufacturer is different. So does that mean the pills go "bad" after that date? The answer is no. The chemical structure of medications begin to break down after that date and lose efficacy. That date is the date in which the manufacturer can guarantee safety and effectiveness. There have been studies done that drugs were just as effective even 15 years after expiration date. What I tell patients is that I don't recommend taking them after the expiration date, but nobody is going to stop you if you decide to take them.

[dfpowell]

Thank you for the explanation!