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Babsey
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Post by Babsey »

I agree about the pharmaceutical companies. :roll: Those annoying reps stop in my office all day long and carry on and on about their products and how great they are. :blah: :blah: :blah:
They all want to meet with the doc and they bring all sorts of stuff, pens, food, gadgets. Then they give us samples so the doc will prescribe their stuff.

Sometimes I just put a sign on the door that we cannot see reps today when I really can't deal with them. :whatever:

Still feeling like: :thud:
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Post by katinchatt »

Well,
This morning so far has been pretty special ~ check this out:

Microscopic colitis causes chronic watery diarrhea. Many cases may be induced by medications, and lansoprazole, a commonly used proton-pump inhibitor, has been associated with collagenous colitis and lymphocytic colitis, the two subtypes of microscopic colitis. Two cases of collagenous colitis associated with lansoprazole are reported, both in older female patients, who each developed profuse watery diarrhea within weeks of starting lansoprazole (Nexium) to treat upper digestive disorders. Colonoscopy was normal and biopsies demonstrated typical features of collagenous colitis. There was a rapid clinical improvement upon switching from lansoprazole (Nexium) to rabeprazole, (Aciphex) and histological normalization on follow-up biopsies. A review of the literature showed 14 other cases of lansoprazole-related microscopic colitis. There are no reported cases of microscopic colitis associated with other proton-pump inhibitors, suggesting a pathophysiologic mechanism specific to the pharmacology of lansoprazole. Clinicians must be aware of this association when prescribing this medication; when a patient taking lansoprazole develops diarrhea, substituting an alternative proton-pump inhibitor should allow resolution of the diarrhea.

http://www.ncbi.nlm.nih.gov/pubmed/17454866

_______________________________________________________________
I am 100% convinced that I am in this exact position! Oh Dear Lord, please let it be so!
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Post by katinchatt »

Well I'll be, check this out:
Microscopic colitis causes chronic watery diarrhea. Many cases may be induced by medications, and lansoprazole, a commonly used proton-pump inhibitor, has been associated with collagenous colitis and lymphocytic colitis, the two subtypes of microscopic colitis. Two cases of collagenous colitis associated with lansoprazole are reported, both in older female patients, who each developed profuse watery diarrhea within weeks of starting lansoprazole (Nexium) to treat upper digestive disorders. Colonoscopy was normal and biopsies demonstrated typical features of collagenous colitis. There was a rapid clinical improvement upon switching from lansoprazole (Nexium) to rabeprazole, (Aciphex) and histological normalization on follow-up biopsies. A review of the literature showed 14 other cases of lansoprazole-related microscopic colitis. There are no reported cases of microscopic colitis associated with other proton-pump inhibitors, suggesting a pathophysiologic mechanism specific to the pharmacology of lansoprazole. Clinicians must be aware of this association when prescribing this medication; when a patient taking lansoprazole develops diarrhea, substituting an alternative proton-pump inhibitor should allow resolution of the diarrhea.

http://www.ncbi.nlm.nih.gov/pubmed/17454866

I am 100% positive that this is my case study!
What hit hard is that it happend within weeks, not months or years, WEEKS!

Day 1, NOT ON THE PURPLE PILL . . . stay tuned.

Oh Dear Lord, let it be so! Amen
Kat
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Post by katinchatt »

In an earlier post I said:
"I just can't imagine that the damage & symptoms occurred at the same time" answer is YES! Or you have to question, which came first? Can chronic diarrhea cause MC itself? What if MC is secondary and it's our body's reaction to having D to begin with? A true barrier of sorts.

Another reason why Boards such as this are so important! If not here, where are we going to find our answers. If I hadn't read about the PPI here, I would be content on having MC for the rest of my life. (well, not really but what choice did I have).

Sorry I'm going on and on this morning, but you have no idea how excited I am about finding this info. I owe it all to you guys, and I'll forever be in your debt for being here. If indeed this is my story, then I continue to fight this fight with all of you, trust me we can all move mountains if we have to.

Another interesting find this morning:
ENTOCORT EC is a registered trademark of the AstraZeneca group of companies.
Purple Plus and the Purple Pill are trademarks of the AstraZeneca group of companies.

I'm not dissing Entocort what-so-ever! However, I find that (in some cases) 1 of their pills cause the need for the other.........?

Kat
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tex
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Post by tex »

Kat,

Great find! :thumbsup: Notice that the research article you cited is only about a year and a half old, (virtually only yesterday, by medical standards). As time goes on, more and more of these reports will surface, as the newer "miracle drugs" have time to "do their thing", and establish a track record.

I believe that one of the biggest failings of the FDA is in the way they notify, (or fail to notify), the medical community about issues of this type. I doubt that most doctors are going to waste their precious time, looking up reports such as these on the internet, or in obscure reports in medical journals. IOW, the FDA, (or the drug industry), should develop a system of notification, whereby every doctor is notified of adverse events such as this, and required to sign off on it, certifying that he or she has read the report, and understands it. It could be done on the net, or in mailings, but obviously, mailings would cost more, and require more staff for processing. The way the system is currently set up, though, unless a drug is recalled, most doctors probably never learn of these adverse events, especially if they apply to such a specialized area of medicine, (such as MC, which no one is interested in anyway, unless they have the disease).

Kat wrote:Can chronic diarrhea cause MC itself? What if MC is secondary and it's our body's reaction to having D to begin with? A true barrier of sorts.
Actually, that's how MC appears to initially begin. In fact, any form of enteritis, whether it be caused by a severe virus, a bacterial infection, parasites, meds, food intolerances, etc., can lead to MC, if the right conditions are present. Once MC is triggered, then certain genes are also triggered, and the reaction becomes self-perpetuating. We've had discussions in the past, where we talked about the fact that MC might not actually be a disease in itself, but rather a collection of symptoms, due to other issues. There is a huge need for more research on this disease, but as long as the medical establishment continues to view it as a "rare" disease, not much is likely to happen.
Kat wrote:I'm not dissing Entocort what-so-ever! However, I find that (in some cases) 1 of their pills cause the need for the other.........?
That's true for a lot of meds, isn't it? People start with one med to treat some condition, and before they know it, they have trouble keeping up with all the meds that they have to take each day.
Kat wrote:If indeed this is my story, then I continue to fight this fight with all of you, trust me we can all move mountains if we have to.
We can certainly use all the help we can get, and if we can get enough people involved, we may be able to "educate" enough people in the medical community, that eventually, a newly-diagnosed MC patient will actually be able to get an effective treatment plan from their GI doc. I'm not holding my breath, though, because a lot of those guys seem to be pretty resistant to change. LOL.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by katinchatt »

Tex,

I totally agree with you that the FDA should develope a system of notification. I seriously doubt the Drug Companies would ever do such a thing. Unless in court, being sued by someone, or someone's family member after a death, they have no motivation to do so.

We as consumers of their drugs should take the time to educate ourselves about the drugs we ultimately decide to take. Unfortunately that's not our reality as we trust our Doctor's advise. (I'm guilty of it myself) I've begun to question a lot the past few years when ads for prescription meds started popping up on the TV. Good Lord ~ don't get me started! Don't we pay our Docs to have the info necessary to make these decisions for us? Of course we all have days when we feel like the little Zoloft blob, no doubt now thousands more are taking Zoloft. Obviously these TV campaigns are working!

All I know is I'm feeling empowered today! I made a little trip to my Primary's office earlier, with a copy of the above article and attached a letter with all my dates & details, & asked her for the pre-approval for Aciphex. I'm also going to send copies to my former GI, as I am confidant he too needs to be educated on the matter. Maybe just one other out there may not have to go through this.

I'd like to be able to say "I had a dream & it came true".

Peace & Love,
Kat
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tex
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Post by tex »

Right, the FDA would have to require it, before the drug companies are going to lift a finger to advise doctors about problems with their drugs.

You're mighty right that we have to be responsible for our own well-being. There are so many drug options these days that it's almost impossible to keep up with all of them, and it's no wonder that doctors seem to be making more mistakes, these days. For what we pay doctors, it's a shame that we have to look over their shoulders, to watch out for mistakes, but it seems risky not to do so. If you go through enough old posts, you will see many examples of prescriptions written for members, that were contrary to their medical records, or risky, based on adverse reactions, etc. It appears that many doctors don't even bother to review a patients records, before writing a prescription.

Good for you. Hopefully, they will remember what you have shown them today. I like your attitude. Those who are motivated, get results. Hopefully, the change of meds will indeed resolve all your symptoms.

Love,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by katinchatt »

Day 2, NOT ON THE PURPLE PILL
...since I'm off the Nexium now I also took myself all other meds. Otherwise how would I know if it was the Nexium? It was a 6 day, on a scale of 1-10 as far as symptoms go. My Primary Doc called early this morning and said she has a month's worth Aciphex samples in her office to come and pick up, as it would give her time to discuss this with my GI, and to arrange for pre-approval long term. She sounded somewhat pissed at my Doc and wondered "why" he didn't discuss this with me. I really wanted to give my opinion of "why" he did or didn't do a few things, but don't want to burn any bridges, yet. She has done so much for me that if I had said much of anything about him, that she too may feel disrespected, after all she referred him to me.

Have a great weekend everyone. Fall is certainly knocking down here in Southern Tennessee, a Sunday drive through the Smokies will perk up just about anyone!

Happy Fall Ya'll,

Kat
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Post by katinchatt »

Day 3 NOT on the Purple Pill
:cry: Never, Ever tempt the "D" Gods
:help: I want my Mommy!

lots and lots of this > > > :flush: trying to do this > > > :sleep:

Needless to say I jumped the gun in my quest............having a dish-rag-of a day! DH is on over nite trip with friends on their motorcycles through the mountains. So, I'm trying to curl up with my dog, but every 15 min. I have to shove him over and take off running, he's so over me, can't blame him though.
Starting over/way over today....just when I "knew" I had found my cure. Still, 3 days isn't enough time, I know, I know, but a girl can dream.

I hope everyone has a great weekend. I'm putting in enough frequent-flyer miles for everyone, so get out there and have fun.
Kat
:cat2:

Never considered that I may be going through Nexium withdrawal.....perhaps? Also read ANOTHER post about Nexium related MC and that it actually takes 4-17 days for relief. Makes me feel a tad better.
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Post by katinchatt »

A very difficult rebound of a day.
I'd done fairly OK getting my D down to 4-6x day after 2 weeks on Pepto, Librax & Lomotil. Why in one day, or rather "how" in one day can I go from that, to 30x ? Yesterday was the longest day of my life, well it's still yesterday to me as I haven't slept, or much, since waking yesterday. Just proves to me that the meds were working and that I hadn't really progressed as I thought. BIG BUMMER!
I have to keep fluids in me, but I find it very odd that when I don't eat, I'm still running and running every 15-30 min. I hear every sip run through me like a facet! Wish my Bladder would help me out here!

Oh well had to B-I-T-C-H a little I suppose. I missed out on a glorious weekend, knowing it's not over but today I'll have to eat and sleep if it's possible. Still I'm hopeful it was the Nexium all along, I'll be disappointed if indeed that's not the case. Guess it was silly to take myself off everything, not a smart move & a very difficult lesson learned. As much as I want to be drug free, they allow me to sleep and leave my house so I kinda have no choice.....

Thanks for being here,
kat
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Post by Courtney »

Hi Kat,

I'm sorry you've had such a rough time this weekend. I know just how you feel. :sad: MC is fickle. You think you're getting better and then, KA-POW! You're getting worse again. :roll: I give my GI doc credit for knowing that much about it--Over the course of time I've had symptoms--5 years or so--I've gone from almost better (never without D, but with controllable D that let me sleep) to going all the time. Your problems this weekend could be a combination of your body trying to adjust to being off meds and just regular old MC issues. I say--yeah, it's great to be off meds, and I would love to be able to never visit a pharmacy again in my life, too--but find the best combination of meds and diet that works for you and stick with it! Until you're in remission, anyway. (*sigh* Easier said than done. It's hard to know which meds are helping and which are hurting! ) Then maybe you can try changing the meds and going by diet alone. But what do I know? I'm not in remission yet!

I know this is frustrating, and you just feel like screaming and crying and kicking something. But--hopefully, we can only go up from here, and the information we find on this site will help lead us back to health :smile:

Hope you have a better day. Try to get some rest.

Love,

Courtney
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tex
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Post by tex »

Hi Kat,

I'm sorry that you're having such a tough time with this. It's pretty clear that you are having a "full-blown" MC reaction. The reason why you are having so much D, even though you're not eating much, is because MC often causes "secretory" D. With secretory D, instead of your colon removing water from the lumen, it actually secretes water into the lumen. This tends to create a large stool volume, (mostly liquid, obviously), even though not much food is being ingested. Keeping yourself hydrated, (as you are doing), is absolutely necessary, since you can become dehydrated rather quickly with that much D. Also, be sure you replenish your electrolytes regularly, especially potassium, since it is usually the first to become depleted.

Constipation is listed as a side effect of both Librax and Nexium, so it's possible that one of them, together with the Pepto, was helping to control the D, (though if the Nexium caused your MC, it's not very likely that it would be helping to limit it, so I would consider the Librax to be the most likely possibility, in the event that one of your meds was having a constipating effect).

It's possible that if the Nexium was indeed the cause of your MC, then when it triggered the MC, it also triggered one or more genes that cause gluten intolerance, and/or some other food intolerance. It's very difficult to pinpoint exactly what happened, because there are so many possibilities.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by katinchatt »

tex wrote:
It's possible that if the Nexium was indeed the cause of your MC, then when it triggered the MC, it also triggered one or more genes that cause gluten intolerance, and/or some other food intolerance. It's very difficult to pinpoint exactly what happened, because there are so many possibilities.
Hi Tex,

That was going to be my next question ~ in your opinion about how long it may take for the gluten intolerance genes to be triggered, or is it simultaneous? I was hoping that it may take many-months or longer, since my symptoms and Nexium taking have only been for 3-4 months now. I've found several articles now connecting MC & Nexium and they all (so far) have said that discontinuing "should" reverse the MC, and that biopsies after remission showed no signs of MC. That is what I am hoping & praying for, but won't get my hopes up. Of course allowing myself to go through what I just went through this past weekend was, in retrospect, really stupid. It was INDEED a full-blown attack and if the genes hadn't kicked in before then, they probably did over the past few days. I don't know if it works like that, but feel I did myself a HUGE injustice by allowing it to get so out of hand.

**One other question? Have you ever heard of a Thyroid Uptake Scan triggering MC? I had one about 1 week prior to my symptoms beginning....Well, not the scan itself, but the pill you take prior to.

Thanks,
Kat
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Post by tex »

Hi Kat,

That's a very good question, and I don't believe that I'm qualified to answer it, but since you asked for an opinion, I guess I'll give it a shot. From everything that I have seen, I get the impression that in most cases, (possibly all cases), those genes are all altered at about the same time, IOW, early on, just before the chronic symptoms begin. It's possible that in some cases, though, some of those genes may not actually be "triggered", until later.
Kat wrote:and they all (so far) have said that discontinuing "should" reverse the MC, and that biopsies after remission showed no signs of MC
I see that all over the literature on the internet, also - not only about this issue, but most medication-associated chronic reactions. That outcome may well be true, but for some reason, virtually all of the people who have been fortunate enough to experience that resolution of symptoms, never register for membership on this discussion board. At least, I'm not aware of any members of this board, (with one exception), who have experienced that. Katy's MC was triggered, (in her opinion), by the long-term use of NSAIDs, and she didn't seem to have significant gluten issues for several years. She did, though, have minor symptoms, (stiffness, aches and pains, etc.). After a few years, those symptoms have grown progressively worse, to the point where she definitely has to cut all gluten, (and possibly other foods), from her diet, in order to resolve her symptoms. To me, that still appears as though her gluten intolerance was triggered initially, but it took a while for her sensitivity to develop to the point where her reactions to gluten included D. We are all aware that sensitivities to allergens tend to become worse, with increasing exposure, and food sensitivities are probably no different, regarding this rule.

I have also noticed that there is increasing evidence that the 5-ASA meds, (such as Asacol), can cause chronic pancreatitis, in some cases, and if you review the literature, virtually all medical authorities claim that the pancreatitis issues will resolve completely, upon discontinuation of the med. However, the more I search, the more evidence I find, that many of those patients later suffer from recurring bouts of pancreatitis, for no apparent reason. IOW, my point is - I get the impression that many medical authorities are too quick to pronounce a patient cured, when in fact, they are only in a state of temporary remission. Doctors used to believe that MC could be cured, for example, but they are slowly beginning to realize that they are unable to cure the disease, and the best they can hope for, at this point, is to control the symptoms.

Please don't beat yourself up over the bad weekend reactions. We all tend to make errors of judgment once in a while, with this disease. It's still possible that your issues may resolve without permanent diet changes, once your gut has time to heal, but I agree, the recent reaction episode does not help the odds any.

I've never heard of a Thyroid Uptake test triggering MC, but that certainly doesn't mean that it might not be an undocumented trigger for MC, for certain individuals, under certain conditions. Did you take the capsule a day before the scan? If so, then obviously, it would take several days, (or more), to purge the radioactive material from your body. Considering the wide range of "events" that are known to trigger MC, (from meds, to parasites, viruses, food sensitivities, and even stopping smoking), it certainly wouldn't be much of a stretch of the imagination to suspect that swallowing a readioactive capsule might also be a possible trigger. After all, one of the ways that genes are commonly altered, is by the use of radioactivity. Normally, that requires much higher doses than what you were exposed to, of course, but who knows? Under certain conditions, some of us might be hypersensitive to such a risk, even though the odds against that are almost astronomical. Actually, odds are somewhat meaningless, when you consider that all of us have been unfortunate enough to develop a disease that only affects a handful of people per hundred thousand, in the general population. Those are pretty long odds, and yet it happened.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by katinchatt »

Tex - I get the impression that many medical authorities are too quick to pronounce a patient cured, when in fact, they are only in a state of temporary remission.

Yep, that's my thinking as well. Again, they have no motivation to update the reality of it when their initial findings were a cure. Wishful thinking on my part as well.


Tex - Did you take the capsule a day before the scan?

8/15/08 - Yes, I took the capsule 24 hours prior. 4 days after I took the pill I was EXTREMELY nauseous, then approx. 3 or 4 days after that, I began with the D. Initially I thought I had a "bug", especially because of the nausea, followed by D. At this point I had been on Nexium for about 3 weeks. I remember early on searching to see if the RAIU indeed had side effects but kept finding this;

- - -
What risks are there from the test? The risk from both varieties of thyroid scan is minimal. The amount of radioactivity you are exposed to is comparable to that from a routine x-ray. The amount of radionuclide used is so small that it's unlikely to cause side effects or allergic reactions.

Minimal - Unlikely - means, who knows? . . and if someone does, they ain't talking! I do understand that allergic reactions to this are likely in those who are allergic to shellfish and such, but let's hope they rule that out prior to having one swallow the darn thing. I laughed when I saw the precautions taken with such a small little pill. It arrived being carried by (I assume a man) dressed in what had to be, a head-to-toe lead suit. This one little pill was in a 10 lb. acrylic cylinder. The Tech carefully unlocked it, took it out with very long tweezers and droped it into another toxic looking device to measure the amount of radioactivity. She the carefully lifted out, with the very long tweezers, and placed in a small cup, and I was asked to swallow ASAP. Looking back when you work in Nuclear Medicine I'm sure no precaution is too much. Still it was kinda entertaining.
- - -

I know there are risks with everything known to "modern" man. Seemed I had so many issues just "evolve" in a very short period of time, that at this point I may not ever know what "set me off", just that I'll just have to deal with the consequences. Still, my bet's with the Nexium, it's just so "on target", with report after report backing it up as a trigger. I'm thinking the timing is probably just coincidental between the uptake pill and Nexium. Only at that time (mid-August) is when I began searching for "D" causes/reasons...etc.

Thanks again for your insight ~ sorry if I'm a pest! I'm just one of those that don't take my health lightly and want to know; why & what can be done........I HATE being ill, and just won't stand for it ANY LONGER!!
Kat
:cat2:
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