GI Followup Visit Today!

[jlbattin]

So, I had my first GI follow up visit since my colonoscopy in June and diagnosis. I did not get to see my GI doctor (I do have a follow up appt. in November and I insisted on seeing him at this time). I saw his PA instead. While she was pretty knowledgeable, it's just not nearly enough. It was so obvious that I know far more about this disease than she ever will. I did ask why there was no mention of a diet when they called with my diagnosis and started me on the budesonide. She kind of laughed and said, "Well, most people don't want to talk about diet and won't do it anyway." She also mentioned that there was no one diet that works well for all people. Well, that may be true, but I would have liked to have had that knowledge. I told her I was on a very restricted diet and felt like I was getting a handle on it. I told her about Enterolab and had printed out my results but she wasn't interested. She was mainly interested in getting me off of the budesonide as quickly as possible. I told her that I wanted to go off of it slowly and explained how. She was agreeable to that.

She made some mention of the food sensitivities issues being symptoms of IBS and I knew then that she didn't really have any knowledge of MC. I wanted to tell her that IBS is simply the "I don't know what the heck is wrong with you," diagnosis for everything. She did agree with me that MC is probably underdiagnosed, but she told me they had a lot of patients with it, and that it was very common in females my age group.

I figured I was wasting my breath with anything else. I had taken my copy of Tex's book and the only comment she made was, "It looks like you are doing really well and feeling better because you have pursued information about the disease." Although I know that every time you mention the Internet or MC support group, etc., that they just cringe. Exactly, no help from the medical field!

My blood pressure was really low 94/59. I came home and took it again and it was 112/61. I hadn't been checking it. I think I probably need to go back to my medical doctor. Not sure I need to be taking Benicar for high blood pressure any longer. With my diet changes and losing weight, I think I may have lowered it through that.

Anyway, I just wonder how we get these GI doctors educated on our disease. I feel like I read someone else post today, "They like to just sweep it under the carpet as an intrusion." It is a life changing/life altering disease that you have to get ahold of, and some days, it gets the best of you! Still just SMH!

[Chemgirl]

Exactly, I think we all have dealt with doctors who don't know much about MC.

Now I get "Well whatever you're doing seems to be working so keep it up"

Better than "Diet doesn't matter" which is what most seem to hear.

Super frustrating.

In their defense, they are diagnosing people with ulcerative colitis, crohns disease, advanced cancers etc. While MC is awful and life changing, it's generally not life ending. So maybe it's all relative to the GI docs?

[tex]

Anyway, I just wonder how we get these GI doctors educated on our disease. I feel like I read someone else post today, "They like to just sweep it under the carpet as an intrusion." It is a life changing/life altering disease that you have to get ahold of, and some days, it gets the best of you! Still just SMH!

That's one of the things that we hope to accomplish with the MC Foundation (if we ever get finished with all the red tape so that the website will be fully-functional).

Tex

[Celie]

Benicar can cause MC. I have not been on the board for a while, but I got deathly ill in May. I had started taking Benicar again after stopping it not long after I was diagnosed with LC. Now, they think Benicar may have been the cause all along. You should go right back to the doc and take an article like this one with you.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538487/

[jlbattin]

I've been on Benicar for a long time. It's not the cause of my MC, and I would continue to take it if I needed it because I've tried a lot of other blood pressure medicines and this is the one that worked the best with no side effects. I don't think I need it now because I am continually running on the low side. I'll head back to my doctor in a week or two.

[Celie]

Glad that is the case, because we are pretty sure it caused mine. And that I seemed to recover when I stopped it. Now I have kept a strict GF diet, too. So, that could have made it better. I wish you the best. This board has helped me greatly over the years.

[Sheila]

Hi Jari,
I'm glad you educated yourself before listening to bad advice from your PA. Some GIs are more receptive but even my open-minded doc doesn't believe the connection with food. He says that because I have celiac disease the GF diet works for me. He is amendable to prescribing whatever I ask for.

BTW, you asked Tex about his sausage and I can't find that post. I eat sausage every morning for breakfast, either Jones brand pork sausage or Applegate Farms chicken sausage. Boars Head has very good GF, SF bratwurst too.

Sheila W

[jlbattin]

Hi Sheila,

I did ask Tex about his diet, but not the sausage. I don't really care for sausage so will only eat it if I have to! :) So, I'm not sure who asked, but it was under the topic of something about magnesium.

[Sheila]

Oops. Sorry.

[jlbattin]

No problem......it just actually made me chuckle.......because I really don't like sausage very much at all..............I was going to try to find the post, but I ran out of time...........maybe later............got some things I need to do before dropping into bed!