Help please, new to all of this

[greengirl78]

Hi Carrie,

Welcome! I hope Rick is able to find his answers, and proper treatment. It's great he has someone like you to help him along on the journey.

I don't know much, as I am new here, but there are many knowledgable people on this board, who will be able to help you.

[mle_ii]

Hi Pat,

I'm partial to that Rick name too, been together for over 25 years..what neck of the woods in Oklahoma were you from? Our ranch is east of Tulsa.

Considering that one of the IBS treatments was a run of some high powered antibiotic, no wonder we have had no luck with this. Seems like every treatment the Dr's tried was actually doing more harm than good.

Carrie

Which antibiotic was used? And indeed as Pat says if it's not needed then it can do more harm than good. Too bad Drs seem to perscrib it too much nowadays. It has it's use to be sure but unless one has a bacterial infection or SIBO then there's not any real need for it.

Thanks,
Mike

[tex]

Mike,

On my first visit, the GI doc gave me a prescription for a two-week treatment with an antibiotic, "just in case I had an infection", and when the D came back after the treatment ended, he gave me another round. Luckily it was Cipro. Back then, I didn't know the difference.

Tex

[Pat]

Carrie,

I went to high school in Altus. The opposite corner of Ok. Not as pretty as the Tulsa area.

Pat

[crranch]

The antibiotic was xifaxan 200 mg, and it was a losing situation, cost $300 and only seemed to make him worse after taking it.

Carrie

[crranch]

Can the bismuth make some people worse? We have had him gluten free for the past month, started the bismuth and took dairy out at the same time less than a week ago, now he seems to be going downhill. Any ideas?

Carrie

[tex]

From Dr. Fine's discussion about Microscopic Colitis, on his website:

I have studied the use of Pepto Bismol (Procter and Gamble) for the last 6 years and have achieved good results and learned a lot about the syndrome from these studies. However, although Pepto Bismol will relieve diarrhea in 90% and resolve the colitis on biopsies in about 80%, 20-30% experience relapses after they stop the medicine, and 10% do not respond initially. It has now become clear from extensive further research over the last 3-4 years that these relapses, and in the less common instances when there is no intitial response, have been shown by my new sensitive stool testing to be caused by coexisting immunologic sensitivity to gluten in the diet, that is to a protein found in wheat, barley, rye, and oats. Although not the cause of the colitis, per se, the reaction to gluten by the immune system can perpetuate or reactivate the colonic inflammation. Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis.

The emphasis in red, is mine, not his. This article was written several years ago, though I'm not sure exactly when. Remember that he's selling tests, but on the other hand, he also has the disease himself, and we have never found any reason to dispute any of his findings.

This quote is from this page on his website:

http://www.finerhealth.com/Educational_ ... c_Colitis/

At one time, his website carried a description of how to use Pepto-Bismol as a treatment, (with a warning not to use it for more than eight weeks, because of a risk of a bismuth buildup in the body), but I don't see that information on his site anymore, (maybe I'm just not looking in the right place).

Tex

[crranch]

Thanks Sweetheart, I'm on his site right now looking into ordering test. I just read the ingredients on the Pepto, and found that it had manitol, saccharin and pregelatinzed starch. We had taken both of the sweeteners out of Rick's diet some time ago because of possible issues with them. I'm wondering now if that may be the issue, since the dosage of the pepto is so high.

[tex]

You could be right. I never even realized that it contained manitol. The last time I tried it was before I learned to read labels. The sugar "alcohols" can cause gastrointestinal and kidney disorders even in small amounts, for some people.

Tex

[mle_ii]

The antibiotic was xifaxan 200 mg, and it was a losing situation, cost $300 and only seemed to make him worse after taking it.

Carrie

Thanks Carrie. When he was taking the antibiotic did he feel better or worse? Did he get worse immediately after taking it or did it take some time to feel worse?

Thanks,
Mike

[crranch]

I'm sorry Sweetheart, I don't remember how he did on it. ( that whole brain injury from the horse wreck, as Rick put's it, I loose files and never rebooted my hard drive ) Seems like he may have gotten worse right after taking it, but he doesn't remember either. We have tried so many treatments over the years, they have all run together.

Carrie

PS: I just went back through Ricks old medical records and when they did
the colonscopy in 2004, they only did one biospy from the sigmoid colon, which was "normal" as far as I can find, but they didn't include a pathologist report with it. Is M.C. found more often in other parts of the colon? Makes me wish we could get one of these doc's to perform another one, but they have all refused...bummer

[mle_ii]

I'm sorry Sweetheart, I don't remember how he did on it. ( that whole brain injury from the horse wreck, as Rick put's it, I loose files and never rebooted my hard drive ) Seems like he may have gotten worse right after taking it, but he doesn't remember either. We have tried so many treatments over the years, they have all run together.

No problem, only a curiosity.

Carrie

PS: I just went back through Ricks old medical records and when they did
the colonscopy in 2004, they only did one biospy from the sigmoid colon, which was "normal" as far as I can find, but they didn't include a pathologist report with it. Is M.C. found more often in other parts of the colon? Makes me wish we could get one of these doc's to perform another one, but they have all refused...bummer

Hmmm... from what I understand more lymphocytes are found in the ascending colon (the part that goes up on the right hand side of your body. The number of lymphocytes decrease the further you get from this section of the colon. So the least amount of lymphocytes would be found in the sigmoid section of the colon in patients with MC.

Mike

[crranch]

I just found a study from 2002 that stated up to 50% biopsy failure rate to diagnose either form of microscopic colitis,due to the pathologist not knowing what to look for.... not putting a whole lot of value in Rick's report now. :

Carrie

The reading quest continues....I'm going to be much more informed about this soon..

PS: We just ordered the Enterolab testing and keeping good thoughts that will give us some answers to this puzzle. Or at least a new direction to go....

[tex]

Carrie,

A couple of years ago, I tried to argue that pathologists sometimes make mistakes, and misdiagnose cases, due to misinterpreting the slides they examine. If I recall correctly, it was in reference to biopsies that were taken from a section of my colon that was removed during an emergency surgical procedure. The section contained a stenosis, (a stricture, or narrowing), that caused a blockage. The official diagnosis was acute diverticulitis.

I disputed his diagnosis, primarily because there was no pain in that area of my abdomen, and acute diverticulitis tends to cause extreme pain. In fact, there was very little pain anywhere, for that matter. Unfortunately, though, I was about as successful at convincing this board, as a leper would be, trying to win friends at a nudist convention. LOL. No one believed me, because it is unthinkable that pathologists might be less than perfect. FWIW, I still think the correct diagnosis should have been diverticular colitis, a condition that is even rarer than MC, (but which is a perfect match for the symptoms that were present at the time), and furthermore, I maintain that most pathologists are very unlikely to even be aware of it, let alone be able to diagnose it correctly.

In his defense, I will concede that I had been on the GF diet for over three years, and in remission for almost two years at that point, so it's certainly possible that there were no markers for MC still present in my colon. The stenosis had done most of it's development before I began the diet, so he really had very little evidence to go on, apparently. Still, the point is, as far as I can tell, acute diverticulitis was an incorrect diagnosis.

I wish I had thought to look for that study you mentioned, but at the time, it never dawned on me that someone might have actually researched the topic and documented it. Thanks for pointing that out.

Tex

[crranch]

I'm finding out just how little doc's know about M.C. Rick just talked with his brother, a internal medicine doc in Oklahoma City, and he had never even heard of microscopic colitis.

As far as the pathologist making mistakes, I can promise you that it happens all the time, not just with pathologist, but any doc. After 17 years as a lab rat, I can tell you that unless it came from our lab, I never really trusted any other result. Especially if it came from of the big hospital labs. Here in Tulsa, there is a lab that grew so big it shut down all the other little privately owned labs ( including the one that I worked at ) and now they are so huge and have such a heavy case load, with no extra staff, that none of their results can be trusted in my opinion. And they were the ones who ran the biopsy on Rick 4 years ago, which is why I'm so jaded about those results. I have friends that work at area hospitals, and they all feel the same way. Just like in anything, there are good ones and bad ones out there.