My ONE MONTH Follow Up appointment since diagnosis of CC!!

[A lot of work ahead of me]

Had my one month follow up with GI specialist today. She literally turned purple when I started to explain to her I had changed my diet and joined this forum for support, etc. She went off on a big speech about not believing the "internet" on these things and so on and so on. We got into a bit of a argument on the Budesonide and that I am NOT ready to start a taper after one month. She had no long term resolutions for me except in her mind if I taper and relapse with the D "there might be other things going on." She was adamant there is no such thing as "food intolerances" and drew blood to check Celiac was the only thing she thought maybe - just maybe.

It was a struggle for me to get her to extend one more month and then taper but I am locked in at least until mid April.

It was a very, very odd appointment.

She did, however, fill out my FMLA forms for my employer to have for "flare-ups".

I told her I will continue to follow this forum with foods and proceed with the elimination diet once I am tapered - she had nothing to say to me that made me think she had any answers at all-no direction for me but she said the medical professionals know the "science" of the disease and the internet does not. (OMG)

She wrote Wayne's name down on a piece of paper and said she was going to look him up. I told her she provided me with NOTHING but a letter sent on-line with my diagnoses and a script. NOTHING MORE. This forum has helped guide me tremendously. Not sure what these doctors are thinking? I told her that I have to work, function daily and am not interested in going through this on a cycle. i want this managed asap. She laughed when I asked if she would agree to the Enterolab testing and said absolutely not.

I left with another month script for Budesonide and a follow up visit to report back.

Her final words were that "you can always call to get more Budesonide if you have a bad flare" which is exactly the lifestyle I do NOT want. What I want is to be able to manage this with my doctor's guidance.

Bla

[skp]

Bla,
In my opinion, you need a different doctor. While your experience is not uncommon as regards doctors who don't believe in food intolerances, her attitude would make me find another physician. MC is hard enough without having to bear the brunt of an egotistical doctor who refuses to listen.

When I was diagnosed, I had only met this GI doctor once. After telling me I had LC, he did say that I might want to avoid dairy. In subsequent visits over the past two years, while not openly acknowledging a belief in food intolerances with MC, he listens. He took my Enterolab results that I gave him and put them into my file. When I told him that the Mayo Clinic states on one site that those with MC should avoid gluten and dairy, he doesn't disagree.

Early in my journey, I, too, wanted a longer Budesonide run. I had to meet with a PA in the GI practice who was smug and arrogant and sneered at Tex's book which I had with me as I was in the process of reading it. He hadn't read it but looked at the title and said, "Well, I can see you know everything there is to know about microscopic colitis!" He went to confer with my doctor and I received another 1 1/2 months of Budesonide. I vowed never to see this particular PA again.

My internist is also a good listener. He read Tex's book and actually referred to it once. I'm not sure he completely agrees with the food intolerance piece of the MC pie but he is very open to alternative ideas.

Good luck!

Susan

[dolson]

One thing about doctors Bla, they have to show you, tell you they know everything. If they are baffled, they get irriate and start saying and doing all kinds of nonsense. Been there - done that. She sounds immature, ill-informed, and not happy in her job. Doctors learn from their patients and they forget that. Some doctors let MD, after their last name, go straight to their head.

No need to worry, in our lifetime, we will not be seeing doctors, we will be seeing PAs. The only time you'll see a doctor is when you die. Another blow to medical care. Pay for a doctor and you see a nurse who will prescribe. They have not been to medical school but act like they know it all.

Our medical care is in a world of hurt. Dorothy

[A lot of work ahead of me]

so good to hear others have had the same experience with a not so good topic. i will definitely be shopping for a new doctor and yes, my next follow up is with her PA. She literally turned purple when talking to me - I had to laugh. Like, does she think she can tell me what to eat or not to eat? That's my choice.

I will figure this out with the help of y'all and in the meantime i have another full month of Budesonide which makes me feel better.

Jeanine

[tex]

They don't learn about nutrition in med school, but apparently they feel that the MD after their name somehow makes them a diet expert.

Kinda like the syndrome that afflicts lot of celebrities who think that their fame or popularity somehow makes them an expert on virtually everything.

Tex

[tommyboywalker]

Hi ALOWAOM!

I agree with the others here....this is what Tex has been saying forever on this forum. Read the bottom of every post of his!

Too bad that you struck out with this GI doctor. Try another; while many are clueless, there are some that are open minded. For example, my GI doctor said that he sees a lot more Crohn's disease and Ulcerative Colitis than Microscopic Colitis. Glad he was being honest about that! But luckily, my GI doctor had a great mentor at the Mayo Clinic in Rochester MN who specialized in Microscopic Colitis, and we really were in lockstep on how we proceeded. We basically just followed his mentor's recommendations. I am so thankful I (by chance) got a GI doctor like this one!

If you peruse the posts on this forum, you will see that many of us have much better luck with a very slow taper of Budesonide rather than the quick taper that many GI doctors will have you try. The GI tract heals so very slowly and the extra time with Budesonide allows the inflammation to go down before you tackle handling it with diet alone. This has worked for me very well. I am in a solid remission using this strategy.

And yes, DIET is the key, always.....moving forward. Most of us find that out by trial and error. Your gut (pardon the pun here) is telling you what to do. Follow your gut.

If you get stuck and need Budesonide for a longer period of time, keep in mind that many of us have used AllDayChemist for a source of very inexpensive Budesonide. (India) I vetted this pharmacy as best I can and found absolutely no reason not to order from them. No script needed. From order to your door in about 2 weeks. I didn't use them because my GI doctor wouldn't write me the script for a slow taper, I used them because of the cost. Even with good insurance, Budesonide was wildly expensive on my RX plan. Ordering from AllDayChemist was 1/13th the cost of buying from my local pharmacy. Good lord we need prescription reform in this country. It's out of control. Soapbox rant off.

So stay the course, you know what you need to do. Best of luck and keep us updated; we all love updates here!

[tex]

we need prescription reform in this country. It's out of control.

I had a TV on this morning while I was cooking breakfast, and I think it was on whatever CBS calls their Saturday morning news show. They had their "hired gun" doctor on who was explaining the latest great new depression treatment that had just become available. And according to him, it only costs $38,000 to treat a patient. He was able to keep a straight face the entire time. I never heard him mention that you can do the same thing with magnesium for about $37,950 less. Of course you don't need a prescription to buy magnesium, so I can see why he didn't mention it

Tex

[A lot of work ahead of me]

Thank you Tommyboywalker!

I like your energy. I will keep persisting with this doctor just to prove her wrong. (I am stubborn).

I have met my deductible for 2019. My cost for Buesonide for a month - $48.00 (not bad at all). That is my point to her. I have the flexibility NOW to keep this going for a few months and do a very slow taper and just get it right the first time. duh doc

Update on the Jimmy Dean for Tex: NO GO. I am now believing that anything greasy is not ever going to work for me again. I tried bacon last week and now the sausage (sure was tasty!) but not worth the reaction. I like how i feel on the chicken....I might start growing feathers but who knows, i might start a fashion trend.

Jeanine

[Harmony33]

Here are links to couple of traditional medical practices that mention diet to manage MC, even suggesting gluten-free as an option. Not in the detail we get from our wonderful forum, but it’s a start at least:

http://www.mayoclinic.org/diseases-cond ... c-20351483

http://www.cedars-sinai.org/health-libr ... litis.html

[tex]

Jeanine,

Too much grease is a problem for most of us while we are reacting, because we all have steatorrhea. But after you've been in remission for a while, and you have a few months of healing under your belt, you should begin to notice that you have increasing tolerance for fats (including grease). You may not have the tolerance level that you originally had, but you should be able to tolerate normal amounts without a problem. This increased tolerance level after significant healing also applies to things like sugar and fiber.

Tex

[A lot of work ahead of me]

Thanks for the hope on grease! LOL

My blood work results were just uploaded from doctor (Sunday?) No signs of celiac she said. The only thing that same back high was the Lymphs (absolute) and she said it's not a high number that she would worry about. To me, it still means that I am right:

Not ready for a taper! Still inflammation! (but, nooooooo.....she wouldn't admit that now would she?)

Jeanine