Quality of Life ~ Demand it, you deserve it!

[katinchatt]

Morning all........

I have to say my Primary Doc is an exception to the rule (as far as Docs go that is). I hadn't seen her in a few months since she first referred me to my GI. When she received my Endoscopy, Colonoscopy & Biopsy results . . . she wanted to call me! For a few of reasons, one, she doesn't have any other patient with MC. Second, she was questioning the 9 Pepto pills a day, and finally she wanted to know how I was doing. She looked up my number in her system, saw that I had an appt. with her this past Monday, and then to armed herself.

She talked a lot about the various theories of why this occurs, truth is no one knows as the standard check-list doesn't apply. Nothing text book about the disease what-so-ever from initial symptoms to long term remission and the "oh so many treatment methods along the path to remission". I've been on Proton Pump Inhibitors for 5 years, her bet's with the Aciphex & Nexium. She also said specialist's hate these rare diseases that are difficult to treat, they would much prefer us to have colon cancer and be done with it. Unfortunately the drug companies pave the way for treatment in so many fields. But if there aren't enough of us out there they don't bother, researchers don't bother, thus Docs don't bother. Even promising research is never published because of Drug Companies!

I had backed off the meds I had been prescribed - 9 pretty pink Pepto pills, Lomotil & Librax ~ but evidently took myself off one or all of them too soon and the progress I'd thought I'd made has resulted in a slight downward spiral. So, back on the prescribed dose for a while. She said since it initially was working to do whatever it takes to get back to having mostly good days. I told her I had been discouraged that my GI didn't seem interested in treating me, with the no-follow up plan. She doubted long-term these meds were going to get me into remission, (I agree) as they are treating the symptoms only. Then she raised one eye and said "since this is about your quality of life, you deserve the best care available & if you don't get it from him, I'll find another GI." Well, I told her that after seeing everything she had done the past week, that she knows more than him, so no thanks, I'm sticking with you!! She said there are a few meds we will try, to get back on the above meds for 2 weeks and "heal" as much as possible, to get a little strength back and come back in 2 weeks.

I told her about this site and all the help I've received, she had no idea there are so many with similar stories and she hoped we continued to do what's necessary to stay healthy, stay on top of our Doctors, demand treatment at whatever the cost, and never take "No" for an answer. She stressed that Docs who don't take this serious, are seriously uninformed, as she thinks they tend to look at it as a IBS issue and not an IBD issue ~ & there is a huge difference, as you all know.

. . . long story I know, but she brightened my day by being soooooo supportive. Oh, and she said to eat a banana a day!

She stated that Entocort is a drug worth trying, In an earlier post by Maggie, she stated that she was having dizziness as a side effect. Is this normal or troublesome to "most" that take it? I'm sorry I haven't been on the boards long enough to know if this is a normal reaction and/or have many of you have had success with it?

Thanks everyone for your time and continued support ~ AND, I APPROVE THIS MESSAGE
Kat

[JLH]

You can be Tex's VP!

It's great to hear of such a wonderful and supportive doctor. You are very lucky.

[katinchatt]

VP for Tex?

OMG ~ I had a good laugh! & then the bump from previous Nomination, NICE!

I would vote for Tex, no question about it!


. . . last time we had a VP from Tennessee Clinton was in office "enter Cigar Emoticon here"


Kat

[jillian357]

Hi Kat,
Gosh, I love your icon....very cute!

Sounds like you have a keeper of a doc for sure. A caring, informed doc is hard to come by these days, unfortunately.

I have been taking Entocort since April of this year, started at 9 mg and I am now weaned down to 6 mg a day. Maybe I am one of the lucky ones, but it's never caused me any problems, including dizziness.

It might be worth giving a shot if you decide to try it.

Good luck!
~Jill

[tex]

Hi Kat,

IMO, you've made a good decision, to stick with your Primary Doc, and not even look for a GI doc. She is one in a million, and she has definitely accurately summed up the general attitude of GI docs, and the pharmaceutical industry, as far as this disease is concerned. My GI doc tried for months to prove that I had colon cancer, and when he finally had to give up, for lack of evidence, he cut me loose, telling me that there was nothing wrong with me.

She is right about the 9 Pepto tablets per day - please don't take that treatment for more than 8 weeks, (altogether), because there is definitely a risk of a toxic buildup, at some point. If you take less per day, then the treatment can safely be continued proportionately longer.

Most patients who take budesonide, (Entocort), do not experience the neurological effects that Barbara and Maggie have experienced. If you read a lot of old posts, you will discover that there are many members who have used Entocort without any significant problems, and there are many who are currently taking Entocort, without adverse effects. Many members have taken a maintenance dose of Entocort for years, with good results. Entocort is effective for approximately 60% of those who try it. For tough cases, the success rate can be increased to about 75 to 80%, by doubling the "standard" dose, (IOW, 18 mg daily, rather than 9 mg). Several members have used Entocort in combination with the diet, in order to achieve remission sooner, and then they slowly phased out the Entocort after they were in remission for a while.

You are incredibly fortunate to have found a doctor who is so knowledgeable, and so dedicated to doing whatever it takes to learn how to treat her patients correctly. A lot of doctors make a serious effort to help their patients, but they're not willing to spend anywhere near that much time educating themselves about a patients specific needs, with such an uncommon disease. Kudos for her.

Tex

[barbaranoela]

KAT----excellant post----and what a terrific GP that took the time and CONCERN to give U both sides of the story----
I admire her honesty in speaking with U----
She is a keeper for sure~~~~and that was cute~~~I APPROVE THIS MESSAGE--luved it

Barbara

[katinchatt]

Thanks Tex for all the great info!

I cut/paste/printed & added it to my file of possible treatment options. I totally agree she is one in a million, for her to have actually spent her own time researching this, amazed me.

OK, another Newbie question or 2 ? I was going to post another "topic" but I know you'll find it here:

I have read where there have been some diagnosed with MC, & after "this and that" treatment were totally cured, and no evidence of the disease remained. Sorry to say I didn't (at that time or now) remember what those treatments were, but are there members here that have had that experience? Can the damage be un-done?
I'm asking because of the PPI I've been on. If indeed they were the trigger, is it wishful thinking that if I stop them.............? During my 2 month's of "hell", before diagnosis, I did cut back on the Nexium, as I saw D was indeed a side effect. But after 2 days of being off, my reflux was unbearable. All of my EXTREME symptoms began when I was put on Nexium a few months back. I had been on Aciphex for 4 years (never any problems) but my insurance would no longer pay for it, so I was switched. It really did happen at that exact time! Any thoughts about "how long" it takes for MC damage to occur prior to symptoms? Maybe the Aciphex caused the damage, but the Nexium brought it to the surface? I just can't imagine that the damage & symptoms occurred at the same time. I had off and on D for years, nothing terrible, more ab pain, was thought it was GB related. I never put 2+2 together until now about the switch in meds, thought they were basically the same thing.


Your thought's are always appreciated!!
_______________
I'm so sorry your "write-in" nomination obviously didn't make it to the ballot in time ;)
Kat

[tex]

To the best of my knowledge, if any MC patient is able to totally suppress their symptoms, then after a reasonable healing period, (anywhere from a few months to a year, depending on the amount of damage present at the start), biopsies taken during a colonoscipy should show no evidence of MC, IOW, no lymphocytic infiltration between the cells of the epithelia, and no thickened collagen bands, in the subepithelium. A few members have accomplished this, but it is somewhat rare, due to the fact that most of us accidentally ingest sub-threshold amounts of trigger foods, which may do a little damage, without being significant enough to trigger a reaction. Some people do experience spontaneous remission, (remission for no known reason), and these intervals can result in a "clean" biopsy. It can be done by carefully controlling the diet, but I'm not sure that the use of meds to control symptoms can result in a truly "clean" biopsy report, due to the fact that most meds suppress inflammation, but don't necessarily totally control it. IOW, they control the symptoms, but don't necessarily address the root problem. Also, most members using meds, taper down to a maintenance dose for long-term use, due to the risks involved with long-term use of most meds at full treatment rates.

If your MC is triggered by a med, (and no "food intolerance" genes have been triggered), then yes, it is certainly possible that discontinuing the med, could result in a complete remission of symptoms, with an eventual clean histology, (after the gut has had time to heal). If a med is indeed responsible, then your remission should be permanent, as long as you avoid that med in the future. Also, if a med is causing MC symptoms, remission should be achieved very quickly, if the med is discontinued, (within a day or so, usually).

MC can never be truly "cured", however, due to the fact that all we have to do is to ingest one of our triggers, (whether it be a food or a med), and we will react, as before. Unless we continue to ingest the trigger, though, post-remission reactions should be short, (not chronic). Those reactions will, however, result in destroying our "clean" histology, for a while, until healing once again replaces the damaged tissue.

Tex

[katinchatt]

Thanks so much Tex,

I just went and had a med re-filled and had a little chat with my Pharmacist. He said that Nexium COULD HAVE Exacerbated the problem. He also told me that the fine makers of Nexium had indeed "messed" with many Insurance companies earlier this year as many of them no longer cover any PPI but Nexium...........(OK I'm cussing right now, but this doesn't surprise me)
However, he told me to call my Dr., that she should be able to get a pre-approval for Aciphex, since I have sufficient reason to show that I can't tolerate Nexium! I would pay out-of-pocket for it, but at $100 bucks a month I'll let my Dr. fix it.

So, no Nexium for me, I'll suffer with reflux, but won't take another purple pill. EVER! I'm not totally convinced that the Nexium caused all of this, but it certainly did EXACERBATE it, and the timing for me is strong evidence.

Finger's Crossed,
Kat

[RUBYREDDOG]

Tex, What a great explanation of an issue I also have been wondering about.

You are the best......Thanks

Hotrod

[tex]

Kat,

As far as I am aware, to date, the only proton pump inhibitor that has been definitely linked with causing MC, is lansoprazole, but this may be because lansoprazole may be the only PPI that has been studied, as a possible cause of MC. The trade name for lansoprazole is Prevacid, in the U. S. and Canada, but it's sold under other trade names in other countries. I have a hunch that if a thorough study were done, of the other, newer, PPIs, as a possible cause of MC, links would probably be found there, as well. There have been anecdotal reports of this happening, but I haven't seen any definitive research reports on the issue. Still, some may not be as bad as others, and since we are all different, on an individual basis, there may be some of the PPIs that you can safely use.

http://www.ncbi.nlm.nih.gov/pubmed/1242 ... t=Abstract

Tex

[tex]

Hotrod,

Thanks for the kind words.

You're more than welcome,
Tex

P S Incidentally, I noticed in another post, that you mentioned that you may be getting close to remission, but you didn't want to claim victory, prematurely. That's great news. Please don't keep it a secret, when you do arrive.

[Babsey]

OMG! Did you know that my GI gave me Prevasid samples the same exact time when he gave me the Colazal when I was first diagnosed with MC????????????? ?????????????? Never mentioned a thing about the connection. I only took Prevasid on and off for a few months prior to starting the MC.

I really don't think I will ever take any pharmacutical product ever again. Until the day comes when they actually make something that treats the problem without 100 side effects that are worse than the problem itself. The only thing I take now is an Estradiol 1 mg tab daily since I had the hysterectomy 10 years ago.
I plan on talking to my GYN about that in January when I go for my yearly. I may switch to a patch so I don't have anything going straight to my gut.

[tex]

,

Somehow, that doesn't surprise me. He probably wasn't even aware that there is a connection. I get the impression that a lot of GI docs don't bother to spend much time upgrading their knowledge base. We probably look at more new developments here every week, than most GI docs are exposed to in a year.

I sometimes wonder if the side effects of drugs isn't one of the reasons why doctors and pharmaceutical companies hit it off so well. Those side effects keep patients coming back, searching for ways to control the "new" symptoms, and that provides both the doctors and the pharmaceutical companies with a steady flow of "repeat" business. It doesn't get much better than that.

Tex

[Pat]

Kat,

I certainly don't have the D issues under complete control yet but I do know that if I eat dairy I have acid reflux! No dairy - no reflux and no meds for it either.

Pat