GI visit today

[TooManyHats]

My doctor's appointment with my GI was more than a bit frustrating. When I suggested that Proton Pump Inhibitors contribute to MC (backed up with information from both the Mayo Clinic and a research study), I was told straight out that PPIs do not cause MC. NSAIDS cause MC. Period. When I said that I was not comfortable with the risks of pericarditis with Lialda because of my past history of pericarditis that seemed pretty recurrent (2 bouts even after 50% of my pericardium was removed) she didn't think that would increase my risk at all. Sorry, I won't take even a remote risk after having been through that. I tried talking to her about LDN, but that went no where fast. She feels it's a narcotic and will not prescribe it. When I tried to bring up the small dose and the effects on autoimmune disease, I was told that MC was not an autoimmune disease. In the end, I decided to take a prescription for Questran. I'll try 1/2 a packet once per day to see if it works. She was equally unimpressed with the study about gluten sensitivity. Unfortunately for me, it only studied 8 people--not good enough for her.

Woo Hoo, happy day for me, I don't have an autoimmune disease, at least in my doctor's eyes.

[Joefnh]

Hi Arlene... I'm sorry that you have a narrow minded doctor. I'll bet her note pads are only an inch wide


I wonder if you may want to find a better doctor. It sounds like you like most here know more that the doctors do about MC.

Congrats on your doctor being able to reclassify MC and non-autoimmune... I'll be watching for her research to be published

--Joe

[Gloria]

Arlene,

I'm sorry you had such a disappointing visit. Perhaps you should consider finding another GI. On the other hand, most of us see the GI just to get our meds. We've given up on them having any understanding of how to treat MC with diet. That's where the board comes to the rescue.

Gloria

[tex]

Bummer! But soooooo typical, unfortunately. No one should ever have to leave a doctor's appointment that frustrated.

Yes, I find it interesting that the other IBDs are considered to be autoimmune diseases, but not MC. Now why would it be unique, in that respect? Obviously, someone is confused.

Since she has such a restricted viewpoint, I can't help but wonder if she's also a member of the Flat Earth Society.

Tex

[Linda in BC]

Oh, Arlene, I am sorry you had to go through that. Unfortunately it is an experience that many others have had too, with their Dr.s. Research has not yet caught up with what those who live with this disease have figured out works, and even if research had, the medical schools training drs. might not teach it right away, and many doctors have been out of school for years and don't keep up with current research. It may be quite a while before what we know about MC ever becomes mainstream medical practice. It seems I am lucky that I have a Dr. who admits he knows nothing about MC.. it has worked in my favour. At least he is willing to listen to what I know about it, and what I would like to try, and doesn't think he knows better.

As Gloria said, most of us go to our docs just for prescriptions, but I don't even go mine for them. I get what I need from the on-line pharmacy we have talked about, alldaychemist.com (Entocort and LDN) without a prescription. No hassles, no need to convince a Dr. of anything, and way cheaper. So you do have options.

My goodness, your doctor thinking LDN is a narcotic is ridiculous! Nowhere, in all the research I did on Naltrexone, did I ever encounter even the faintest suggestion of that from any other doctor. If Dr.s thought that, you would think there would be some controversy about that, wouldn't you?. But not a whisper. It is a narcotic antagonist! It blocks the opioid receptor sites so that narcotic cannot be absorbed. For instance, you can't take codeine while taking Naltrexone.

Anyhow, don't be too despondent. You can get better even without a Dr.s help. You have this board and all its very knowlegable, helpful people.

Linda

[TooManyHats]

I left that office in tears after being made to feel like I was trying to get her to prescribe some terrible drug, like I was an addict looking for a fix. To say nothing of having my concerns about the medications she prescribed summarily dismissed. I really need to find a new doctor, but have no idea of how to go about it. Meanwhile, I am giving Questran a try because if I do start working I HAVE to be more confident about being well--or quasi well anyway. And her recommendation for how long I'd have to take Questran? Six months, because that's the time frame the research studies use.

After spending years going to doctors who were more than willing to work with me to help my son with autism, this was like a slap in the face. I can't work with a doctor like this. I need someone who's willing to think outside the box.

[Linda in BC]

Aw, Arlene.. I am so sorry. I feel so bad for you. Yes, a new doctor is in order, I think. Here is little vindication for you. Maybe you can send it to her..

From the Mayo Clinic ( http://www.mayoclinic.com/health/drug-i ... n/DR601877 )

Naltrexone is not a narcotic. It works by blocking the effects of narcotics, especially the "high'' feeling that makes you want to use them. It also may block the "high'' feeling that may make you want to use alcohol. It will not produce any narcotic-like effects or cause mental or physical dependence. It will not prevent you from becoming impaired while drinking alcohol.

i tried Questran for a little while. Did you know you can get it in pill form? ( it is called Colestid) From what I understand all it does is tighten the stool up a little, but I don't think it will address the inflammation that is causing the D. And of course only taking the offensive foods out of your diet will prevent the inflammation in the first place . Are you opposed to taking Entocort? I tried diet and questran (colestid) and L-glutamine and LDN for 4 months with some improvement, not remission, and very up and down. I finally realised that I was intolerant of eggs and that they were keeping me sick. But about a week later the Entocort that I had ordered arrived, so I started taking it anyway, and within three days the D had stopped and has not returned. I only took 1 Entocort a day for the about 2 months with absolutely no bad effects and then started dropping down. I have been taking only one every 4 days for the last week and will probably stop soon. I guess what I am trying to say is that if you are not averse to taking drugs to end this misery, Entocort, with diet, seems to be the most effective. And most GI docs are comfortable prescribing it as a first line approach to treating MC.

Linda

[TooManyHats]

It's a corticosteroid and I really don't want to spend any time on another steroid. That is exactly the kind of medication I was on for the pericarditis and I really didn't like it. I also worry about never being able to come off of it. To me, it seems counterproductive. Steroids interfere with the ability to heal, which I experienced with heart surgery while on a steroid. How can the colon heal if the steroid interferes with that? It just doesn't make sense to me. Personally, I don't think that medicine knows enough about the immune system to be messing around with it let alone suppressing it.

[Foxnhound8]

Perhaps you could PM Mary Beth (mbeezie). She gave me the name of a nutritionist who works with digestive problems and does MRT testing. She may be able to give you the name of someone near you who might help in non-medical ways to get you well.

foxnhound

[tex]

Personally, I don't think that medicine knows enough about the immune system to be messing around with it let alone suppressing it.

Tex

[Kari]

Hi Arlene,

Sooo sorry to hear of your experience at your doctor's. As others have already said, it is quite typical of our collective experience here, but unfortunately that doesn't make the frustration any less when it happens to you.

Can't remember if you tested at Enterolab yet, but in my opinion, both the Enterolab and MRT tests are well worth the money spent. Getting those results take a lot of the guesswork out of figuring out your sensitivities. I am 7 months down this road of managing with diet alone now, and despite set-backs along the way, I am very encouraged with the results. The hard part is accepting that it takes a long time to heal the gut, it simply cannot be rushed no matter how diligent one tries to be.

We each have our very unique way of managing MC, and I'm sure you will figure out a good system that will work for you, whether with medication and diet, or with diet alone; and with or without a doctor. It is very discouraging for you right now, but with time, patience and the voluminous information and support offered here, you will get there!!! Lots of luck to you in finding your way. I look forward to reading your updates.

Love,
Kari

[klhale]

Arlene,

if your doc won't work with you then she is Working against you. It's time to find a new doctor.
I guarantee that you won't be happy with her the next time you see her as well.

karen

[MBombardier]

Joe :ROFL:

Arlene, I am so sorry your GI treated you so badly. But at least now you know that MC is just like a little cold, and all you have to do is get plenty of rest, drink lots of liquids, and you will be all better in the morning.

Seriously, how do people like her live with themselves?