Went last FRI to see a new GI at the same clinic. She came recommended by someone else suffering worse than I and this GI really helped her. I dislike her as
much as I like her.
The Good: She explained some things
better then any of the last 6 GI's I've seen.
Apparently my pancolitis (severe case of ulcerative colitis where the entire colon is afflicted) coupled with the fact that prednisone does not
put me into remission means I have a very serious case. Since I'm not
responding to full dose of sulfasalazine (3 pills 3 times daily) and
that prednisone isn't putting me into remission she said Lialda and 6MP is
pointless. I nearly lost it
and tried my best to not blow up but asked why her colleagues were
trying their best to get me to take them and she said "I don't want to
argue about that..." fine... so what now?
Given how well I
responded to cortisone suppositories last time she said she's seen
several cases where treatment of the colon can go well but the rectum
still remains inflamed and causing lots of symptoms. (In my research I found there's actually a name for this: Ulcerative Proctosis) In those cases she explained no
pill is going to fix the rectum but the suppositories will. I'll be on
full dose of sulfasalazine + suppositories for 2 weeks and see how that
goes. We both feel there's a good shot at remission here. Failing that
we'll add prednisone on top.
Failing that...it's on to the next class of drugs: immune suppressants. Again... getting conflicting information... from the same person... if prednisone (an immune suppressant steroid) didn't work then why on earth would the other immune suppressants?
The Bad:
I expressed my frustration that her colleagues are saying one thing and she's saying another and we argued about it. She kept pointing to her computer screen saying all the other doctors notes are right here and it's consistent with what she's saying. Too bad that medical file doesn't have every conversation I've had with other GI's which is where the majority of this conflicting advice was given.
Typical arrogance I get with most specialists (not just GIs) and she was a
little rude about mentioning a couple times how much time we're spending on this
visit.
I had written down about a dozen questions I wanted answers too. This was because the last GI had been seeing there was really into hearing himself talk and by the time he shut up and let me get a word in I had forgotten most of my questions. I handed her my list and asked if we could go over these. She looked over it for no more than 10 seconds saying "No, No, Yes, No... ok well..." handed me back the questions then said "candida is an internet myth, I have candida, you have candida, everyone has it." I explained "Yeah, we all have it... my question was about overgrowth?" She blew it off again. So I pressed on asking then about an imbalance of good bacteria, bad bacteria, and gut flora. She at least admitted it MAY help some people with a less severe case but wasn't going to bother with that for my case.
Then I brought up one of my other questions about using a nicotine patch in conjunction with my pharmaceutical treatment. She tried to play the usual card: no scientific evidence or studies. I explained that actually there were and I had read a couple of scientific studies saying the difference between placebo and nicotine use with conventional means was 40% higher. She then went on to explain how this clinic was internationally recognized and that the medical board which oversees them doesn't recognize those results as they weren't good enough and that "...maybe I could find some other clinic that would practice off the cuff things like that but not here."
For now I'm on her regiment and I do agree with it. We both feel it has a good shot at getting me into remission. The ulcerative proctosis was the first real breakthrough in a while. That said I'm scheduled to see a GI at the U of M. for an opinion outside of the clinic I have been going to. After 10 months of this flare up I'm getting rather anxious for some relief.
Thursday, October 9, 2014
Everyone Has an Answer
I've seen quite a few gastroenterologist, done lots of my own research, and talked to many people in person as well as online. If you take it all in... everything works and nothing works. There are no straight, definitive, answers. Many times what you hear or read directly conflicts with something else. In fact you'll find cases where someone will contradict themselves! You even get that from your doctors. They will tell you diet doesn't matter, there's no science there, and nothing is proven. Then in the same breath they will say to avoid "trigger foods" and offer up some vague dietary advice. When you ask what are trigger foods and how to find them you'll get some answer like "it's different for everyone", "you just have to figure it out", or they list off a few like dairy, caffeine, and junk food.
I'm not sure which is worse; having no answers or everyone having a different answer. I'll break it down into a few main categories but within each are any number of variations or even blending of several categories.
Pharmaceutical: Prescription drugs employed via pills, intravenous, suppository, or enema. From what I gather the progression is anti inflammatory drugs (ex. sulfasalazine), immune suppressants (ex. prednisone or 6MP), "biologicals" (ex. Remicade or Humira), and finally surgery.
Nutraceutical: High quality supplements in the form of pills and powders. Examples would be Ultra InflamX 360 which is a meal replacement powder you mix up with water and Wellness Essentials which are packs of pills with vitamins, minerals, and amino acids.
Dietary: There's lots of diets out there. These are focused around health, healing, and neutralizing symptoms. Has nothing to do with loosing weight; not that kind of diet =P Some examples are Autoimmune Paleo, Specific Carbohydrate (SCD), GAPS, Low FODMAP, and various offshoots or blending of these concepts. I'm not listing Elimination Diet here as that's a technique not an actual diet.
Health & Wellness: Things like exercise, meditation, medical cannabis, etc.
The only definitive thing I've figured out thus far is that the solution is different for everyone. I haven't figured it out yet for myself.
References:
Biological Therapy Drugs: http://www.ccfa.org/resources/biologic-therapies.html
Drug Classifications: http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/treatment/con-20043763
Nutraceuticals: https://www.google.com/search?newwindow=1&biw=1280&bih=625&q=nutraceutical&oq=Nutricutical&gs_l=serp.1.0.0i10l10.418327.418327.0.420076.1.1.0.0.0.0.243.243.2-1.1.0....0...1c.1.55.serp..0.1.240.FU73eZN9M9w
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