Newbie's first post

[Phil554]

Hi all,

I was just diagnosed with Collagenous Colitis this week after lower and upper endoscopy last week. The GI doctors' office called Wednesday exactly one week after the procedure. Nurse couldn't pronounce Collagenous so I asked her to spell it for me.

My D has been ongoing for approximately 6 months. Started on the eighth day of a 10 day course of Levaquin for a sinus infection. I'd taken this RX before so wasn't too concerned when it caused the D because I knew antibiotics can do that. Well that was on October 11 last year and although it's not as bad as when it first started, still bad enough that I agreed to have another colonoscopy less than 2 yrs after I had my first one (which the surgeon said was perfect and no biopsies taken....that was also long before the D started). I had gone through blood tests, CT of abdominal area, way too many stool samples (had to prep 9 of them last time!). So I figured the only way I was going to help the GI doc figure this out is let him do another scope.

There were other factors I thought might have caused this, as it also started immediately after a return from Hawaii and we had been to one of the less inhabited islands, Kauai, where wild chickens roam the streets after a shorter stay in Honolulu.

I used to be very active and was going to the gym 3 to 4 times a week but since this started I haven't been at all. I keep thinking this is the week that I will go back but then am so tired and weak by the time I leave work, I don't have the energy or stamina to go.

I was just curious if anyone else had their disease manifest during antibiotic therapy or after visiting Hawaii?

The medicine the doctor prescribed for me was Entocort and after discussion with the pharmacist she said not to take it. I am what's considered to be a "steroid responder" (I get elevated eye pressure from steroid eye drops and noticed this drug's first warning on the patient literature was a warning for anyone with glaucoma).

I got to a follow up with my GI doc to discuss the results on Wed April 11 so am hoping he can come up with something besides the Entocort that will help.

This is a very interesting site and I will probably be visiting regularly now that I know what I have. Thanks in advance for any advice.

Since this is my first experience with a message board like this I hope I'm doing this post correctly....


Phil

[tex]

Hi Phil,

Welcome to the board. I'm sorry that you've received this diagnosis, but you should be able to find the information you need, here on this board, to allow you to get your life back. And not to worry - your first post is excellent.

It appears that antibiotics are a very common trigger for the disease, among the members here.

I agree with the advice given by your pharmacist - you appear to be a high risk for possible corticosteroid-induced glaucoma, so if I were in your shoes, I would be reluctant to take any corticosteroid. Your doctor may prescribe mesalamine, and there are many brands available, with mesalamine as the active ingredient. The problem with mesalamine, though, is that it is a derivative of salicylic acid, (as are all NSAIDs), and anyone who reacts adversely to NSAIDs, will find that mesalamine-based medications make their MC symptoms worse, because NSAIDs, (like antibiotics), are a very common trigger for microscopic colitis. Still, it may be worth a try, but if it makes your symptoms worse, stop taking it. Many gastroenterologists don't understand the risks involved with the use of mesalamine, in MC cases.

If you do much reading of posts on this board, you will discover that contrary to what most GI docs believe, the inflammation that causes MC is perpetuated by food-sensitivities. That means that unless we stop eating those foods, the inflammation continues to be regenerated, so that soon after we discontinue taking a medication, the symptoms will return. The genes that cause these food-sensitivities are triggered when the genes that predispose to MC are triggered. That's why we suddenly become overwhelmed with symptoms, and the symptoms never seem to end, as they would in most conventional diseases. MC, (and CC or LC), is forever, so we have to either change our diet, or take medications forever, or both, in order to control our symptoms, so that we can get our life back. Only a handful of gastroenterologists understand this disease well enough to know how to properly treat it, so that's why we share information on this discussion board, so that we can manage our own treatment, as best fits our personal situation.

If your doctor's nurse couldn't even pronounce "collagenous" colitis, the odds are extremely high that your GI doc won't be very familiar with the disease, either, (though, of course he will have to pretend to be, because he's the "expert"), and he will inform you that diet has nothing to do with MC. When you hear that, remember that a claim like that is like telling someone suffering from asthma, black lung disease, COPD, or lung cancer, that breathing polluted air has nothing to do with their breathing issues.

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

Tex (Wayne)

[Joefnh]

Welcome to the group Phil from New Hampshire. I'm sorry you have developed MC, but it can be managed with diet changes for the most part and meds if needed. Tex already gave you a good intro. Entocort is a good choice and for the most part has a limited systemic response as most of the medication remains in the GI tract. Certailny watching the eye pressure is a good idea. If the risk is too high though for glaucoma that should be discussed with your eye doctor before starting it.

Feel free to ask any questions, we have all been there and done that..

[starfire]

It's good to just get a diagnosis, isn't it. Obviously, we think you've come to the right place and I hope you get as much help and encouragement here as you need.

Shirley (from PA)

[Phil554]

Thanks very much for the welcome and info to Tex, Joe and Shirley and yes it is very good to finally get a diagnosis!

Also very glad to see the wine glass in Joe's hand as its one of my few vices I still enjoy Hoping I don't find out I can't have that anymore!

Since Tex mentioned the NSAIDS, I'm also taking Celebrex once a day 200mg currently for cervical issues and have been using that for about 5 years....it also seems to really help so am hoping that doesn't go on a taboo list.

I also have (very mild at present) plaque psoriasis and have seen that this disease could also be classified as an autoimmune disorder. Up until around July last year I had been using Enbrel for about 5 years which worked better than anything I've used in my 30 year history with psoriasis. I was starting to get some arthritic pain where the lesions used to be so the dermatologist had suggested a change to Humira, a similar drug that had given some people better results than Enbrel so I had only been using it for about a month before the sinus infection/levaquin treatment. Enbrel or Humira must be discontinued during any infection because they are immunodepressants so I had stopped the Humira for about two weeks prior to starting the levaquin. Still kind of wondering if any of that may have possibly come into play in manifesting this condition too. I'll be discussing all this with the GI doc too next week, and Tex was right, this doc had already told me even prior to the diagnosis that my condition is not diet related and to keep on eating whatever I wanted. BTW I really like your comment about the hardest substance known to man! Hopefully this guy may be a little more open to listening to his patients. He seems really good to talk to so far and is very young (38 y/o!).

Hope this isn't TMI but I'm just trying to give everyone interested the full history of anything that's crossed my mind in the past few months of dealing with this disease.

Thanks again to all!

Phil

[Joefnh]

Hi Phil, I do have white wine on occasion, that photo was taken while on a trip to Australia almost a year ago, but only when things are settled down for a while as alcohol can cause issues with leaky gut of which MC is known to be an issue. So again in moderation and only after you have gotten things under control with diet and have had time to let things heal for a while.

Like you I am taking an immune suppressant, Imuran, which like humira or enbrel does slightly suppress the immune system, although through a different mechanism. I should mention that I also have Crohns disease as well as MC. Rarely are immune suppressants used in cases of MC, but there has been some good success stories with Imuran. I'm not sure about enbrel and humira which are TNF alpha suppressants and how those might work with IBDs like MC, but I do know they are used with Crohns, sometimes in conjunction with Imuran. Imuran works by suppressing the number of T cells that are available by inhibiting thier reproduction. There are now 3 members on this sige that are successfully managing MC symptoms with the help of Imuran.

For most of us Phil diet adjustments are the best treatment for MC, as we have formed an immune response to certain types of foods and for most of us that includes gluten, soy and dairy. That list breaks down to something like 98% gluten, 75% soy and maybe 60% dairy. Those are not exact numbers but my impression of what the group has reported.

Early on Phil the best bet is to exclude all 3 food groups until you feel better and then slowly introduce one food type at a time and then see how you feel. Keeping a food diary helps with keeping track of a food item and your symptoms for that timeframe. You should keep in mind that as you remove the big offenders like gluten, over time a less offending food item may crop up as a sensitivity.

There are also some great testing options by eithier Enterolab and or MRT testing by Signet diagnostics. Both of them look at specific food items and give you a measure of how strongly you react to that item.

Most GI docs are not aware of the gluten connection to MC, but there is a lot of research making its way into the mainstream literature which details how gluten sensitivity elicits an immune response.

Here is a good article for you and your GI doc from one of the main medical continuing education resources (thanks to Zizzle for posting this). It does take registration, but its a free sign up, and a very good site.

http://www.medscape.com/viewarticle/757916_6

You certainly have found the best group of folks at this site, it really is like a family here. Feel free to ask anything...few things classify as TMI...

Take care

[tex]

Phi,

Unless you happen to have significant mast cell issues, associated with the CC, you should be fine with wine, (so long as it doesn't interfere/interact with any meds that you might be taking. As Joe says, though, moderation is the best policy, especially early on.

We're all different in the way that MC affects us, and in the way that we respond to treatment, because we all have different lifestyles, and therefore different environmental influences, and we have different genetics. If you're unable to satisfactorily reach a state of stable remission, (one that fits with your long-term treatment program), despite doing everything right, you may have to look long and hard at the option of eliminating the Celebrex. Usually, a couple of weeks of doing without a drug, will tell us whether or not that drug is a problem.

Also, we have at least a couple of members who were/are using one of the anti-TNF drugs, (I don't recall which ones, offhand), to control either RA or psoriatic arthritis, and despite their best efforts, they were unsuccessful in resolving their MC symptoms. Unfortunately, they never post anymore, but I doubt that their situation has changed. They were unwilling to take a chance on the diet resolving their other autoimmune systems, (and unwilling to ignore their doctor's advice), so sadly, I'm pretty sure that they are still symptomatic. One of those members even admitted that the drug made her symptoms much worse for a few days, after the injection, but she chose to continue taking it.

IOW, changing their diet did not resolve their symptoms, because the anti-TNF drug apparently triggered their symptoms, and therefore overwhelmed the benefits of their diet changes. Drug-induced colitis always trumps diet changes, so drugs are one of the first places to look, and for some us, just eliminating those drugs, can bring lasting remission. Others find it necessary to also alter their diet.

I'd like to point out that most of us have found that after we eliminate all traces of gluten and casein from our diet, other autoimmune issues that have been bothering us for years or decades, typically either completely resolve, or their symptoms significantly diminish, (depending on how much damage has accumulated). That is because, (IMO), gluten is a primary cause of autoimmune disease, (despite the medical communities' general lack of awareness), and I can cite scientific research references verifying that claim, if necessary.

Most of us are valiantly searching for the Holy Grail of gastroenterology, namely, a GI specialist with an open mind, but so far, only a small percentage of us have been successful. The situation is improving, though, and more and more GI docs are slowly beginning to recognize the reality of the situation. The problem is, their medical training, concerning MC in particular, (and autoimmune diseases, in general), totally sucks, as far as we can tell. So they have to learn the ropes somewhere else, and many are unwilling to do any more than to "go by the book", unfortunately.

You can never list too much history, because by doing so, it can remind us of the similarities, and the differences with our own experiences, so that we can compare notes, and hopefully come up with worthwhile treatment suggestions that have a higher probability of success, in your own case. And even though we're all different, we all speak the same language here, (fluent microscopic colitis), and we all understand exactly what everyone else is going through, trying to cope with this disease, on a daily basis. We have found that no one truly understands this disease, unless they actually have it, and that even applies to our family and friends, and it especially applies to our doctors.

Tex

[Stanz]

Hi Phil,

Happy you found us here, you have much to learn, don't let it overwhelm you. This isn't "incurable" and many of us have stopped the symptoms with diet alone.

Connie

[mturn2]

Hi Phil. I am a member who got pretty bad diarrhea after taking the antibiotic Augmenting XR for a bad sinus infection. It finally resolved then a few months later same thing: sinus infection, Augmenting, diarrhea. This time it lasted a couple weeks longer and I had severe bloating and fullness. A few more months went by and I was under severe stress (my beloved golden retriever passed on, I had a job change, sold a house and bought a house, etc. etc.). So with that said I developed the fullness again and this time it resulted in chronic gas and constipation and that is where I have been for a year and a half. I tried gluten free once for 5 weeks and didn't notice any results so I gave up but after struggling with this for another 8 months with no relief I decided to give the gluten free thing another try. With that being said, it has been about 5 weeks again and this past Wednesday I thought I felt kind of normal ( no gas, bloating, etc). Same thing thursday but once again developed a sinus infection and was forced to take antibiotic yesterday. Within a couple hours I started feeling the fullness under my ribs and felt somewhat gassy again. So that leads me to believe my LC was definitely caused by years of chronic antibiotic use for sinus infections and perhaps the gluten free diet is my key. I am hoping to get off the antibiotics within a couple days so hopefully they won't cause too much damage. This forum is very helpful and sometimes it just helps to read others postings so you know you aren't alone with this awful disease. Welcome and I hope my information helps you some with your antibiotic question.
Take care,
Sondra

[Christine.]

Hi Phil
Welcome and , as one who speaks fom only 3 months of treating this disease with help from these folks here, you ARE in the right place.

I too have had psoriasis from childhood but lately I've only treated it with light and topical steroids. The trigger for my mc was clindamycin ( another tough antibiotic) .

I have been on a gluten free, soy free, egg free and dairy free diet for 3 months. Not only is the D almost normal, but amazingly, my psoriasis disappeared! I have never had smooth elbows, knees and ankles for many years. So you can't tell me there is not a connection.

Also, since the diet is limited, I do sin with a glass of wine here and there. It doesn't seem to bother me ....but everything in moderation.

Again, welcome.
Chris

[MBombardier]

Hi Phil!

I have CC, too. I have no idea what triggered it--stress, NSAIDs, gluten, who knows. I am blessed to be able to control my symptoms with diet alone. My psoriasis is pretty much gone, as is my heartburn, achy joints, etc.

In the beginning, when I was going through the worst of the grieving process over my former carefree life, I was glad that I could have white wine. It helped me not to feel so deprived.

Welcome!

[CathyMaine]

Welcome Phil,
I'm a newbie here too and have been diagnosed with Lymphocytic Colitis. I'm curious about your comment regarding eye pressure and Entorcort. I have been having major eye issues-redness, blurry, difficulties focusing, and thanks to Tex, realized that they have increased since I started Entorcort 7 weeks ago. My GI has said this is a side effect of Prednisone not Entorcort?
I do have an eye appt. Thursday but this really concerns me!!

[Polly]

Hi Phil and

You have already received lots of good info, so I'll be brief. Despite my myriad of food sensitivities, I am lucky to be able to tolerate wine, and hopefully you will, too. My MC was antibiotic-precipitated (doxycycline). And I have a relative whose psoriasis improves dramatically when he eliminates gluten.

I'll go out on a limb here and suggest that most, if not all, of the symptoms you have may be because of longstanding food sensitivities. And the medications you take are for reducing inflammation, not for "curing". Here's what I would do if I were you: I would start with the enterolab tests for gluten, dairy, soy, and other common sensitivities - www.enterolab.com. Then I would eliminate any positive ones from my diet. It can takes months to see full results - it took me almost 9 mos. of diet to see a formed B.M. - this is especially true when one has had symptoms for years. But the wait is worth it - I have essentially been in remission for years now on diet alone. And it sounds as if may you may need to avoid steroid use.

I would also seriously consider a break from all medications. Of course, only you can make this decision. I don't know how debilitating your psoriasis is. But I am especially concerned about the effect of the Celebrex on your MC. I know this approach seems radical and will most likely never be suggested by your M.D. BTW, I AM an M.D. (pediatrician) who happens to have MC and who has learned first hand the importance of diet in managing it. And I cringe when I hear again and again that docs don't have a clue about the food connection.

One more suggestion. When I was at my sickest I continued to work out. I am a great believer in the benefits of regular exercise. I KNOW how hard it is to do this when one is sick and exhausted. But even just a little bit goes a long way (if for no other reason than to improve mood). I would go to a trail in the woods and always carry kleenex - for those times when I needed to jump behind a tree and poop. In the gym I would use the equipment closest to the bathroom! The main thing you need to be aware of when having continuous diarrhea is dehydration/electrolye imbalance. So you have to pay close attention to staying hydrated during workouts.

Enough! I'll hop off my soapbox now. LOL! Looking forward to further chats. And best wishes on developing your own plan to return to health.

Polly

[CathyMaine]

Hi Phil and

One more suggestion. When I was at my sickest I continued to work out. I am a great believer in the benefits of regular exercise. I KNOW how hard it is to do this when one is sick and exhausted. But even just a little bit goes a long way (if for no other reason than to improve mood). I would go to a trail in the woods and always carry kleenex - for those times when I needed to jump behind a tree and poop. In the gym I would use the equipment closest to the bathroom! The main thing you need to be aware of when having continuous diarrhea is dehydration/electrolye imbalance. So you have to pay close attention to staying hydrated during workouts.

Enough! I'll hop off my soapbox now. LOL! Looking forward to further chats. And best wishes on developing your own plan to return to health.

Polly

Oh...and I so agree with Polly here. I too continued to work out through my explosive D and while I had many close calls @ the gym, I always made it to the bathroom in time. I completely changed my workout times as first thing in the morning was much worse for me than evening time. Good luck to you Phil. This forum has a wealth of information.

[humbird753]

Welcome to this forum, Phil. You have come to the right place. I was diagnosed with LC and it was only by coming here that I have been able to get a better understanding of it, and also change my diet which is already making improvements with the D I have had for well over 2-1/2 years.

You will learn a lot here.


Paula