GI Visit Today and Not Sure What to Think

[jlbattin]

Ok, so I went to see my GI today. This was the first time I saw him since my colonoscopy (the last time I saw his PA). Not sure what I think, but needless to say, I didn't even ask for my letter to travel with as it didn't take very long into the conversation before I knew that he didn't believe in food sensitivities (as related to MC). He offered to do a scope to verify if I had Celiac disease and gluten sensitivity that way. As I was telling him my story, I told him about sending my labs off to Enterolab (which he was not familiar with) and the results, and what I had done. His comment was, "It doesn't matter what I think as long as whatever you are doing is working for you, and obviously, it is." He told me that none of his patients with MC were nearly as rigid as I was (or extreme, I think was the actual word he used). So, I questioned him about his other patients. How old? Sex? Medicine prescribed? Diet involved? I am the youngest. Most are women in their 70's. He prescribes Budesonide, and I said, "So, when the 6 months is up and they haven't changed their diet, then what?" He said, "Well, they call me when they run into trouble." I said, "But I've read that Budesonide isn't nearly as effective the 2nd, 3rd, times, etc." His comment, "It depends on how well you did with it the first time."

Anyway, that's how my whole visit (about 20-25 min.) went. I knew about 3 minutes into the conversation that I knew more about MC than he did. He encouraged me to expand my diet to get the nutrients I needed (I think he thought my diet was too restricted). He even said that I should try gluten, soy, etc., to see how I do with it now because sometimes after it goes into remission, you can eat everything again. So, as you can see, I figured there was no point in asking for a letter to travel with because he wasn't going to attach his name to something that he doesn't believe in.

Sadly, I really like the guy, and I think he does know what he's doing with colonoscopies, etc., and so, I told my husband that I'd just go back to my online support group/family to get the information I need and go get my colonoscopies from him when I need to go again, but not depend on him for any support for my disease.

SMH.........when I walked out of his office, I had one of those moments when I asked myself, "Did this really just happen?"

[Chemgirl]

Yeah...they mean well...

I was diagnosed with full blown CC at age 30 and all I got from my GI was a perplexed look. "How'd that get there?".

How exactly are you lacking in nutrients? You eat meat and veggies. I think I read that you eat potatoes and bake with almond flour. That sounds like more variety than people were getting for centuries. It's not like we've always had this array of food available.

The sad truth is that most people would rather take a pill than make a major change. Your doctor probably doesn't come across people like us very often.

If it's any consolation, I manage to fly with non-liqiod foods and just drink bottled water after security. You only have to worry about food if you're going through customs so domestic travel is fairly easy. I usually try and rent places with a kitchen so I can just grocery shop after I land. Just got back from a week away and had no digestive issues.

[humbird753]

I can completely relate to your visit with your GI. My last visit was either the end of May or early June of 2015. I actually thought my doctor understood, and was in complete agreement with what I was doing in my diet. That last visit couldn't have emphasized more how wrong I was. I was also told to eat gluten and everything and anything out there. I was really blown away. I still think it is only common sense to listen to their patients. They could learn so much about this disease if they did.

Paula

[CathyMe.]

Jari,
I can relate as well as my GI actually told me to introduce gluten back into my diet, "Just to see what happens"???!!! IMMMMMM.. no thank you!! She also told me at the end of my last appointment that she was sure she would be seeing me again (WRONG again!). This was 2 years ago. I am one of the ones that Entorcort worked great the 1st time but not at all the second time as well!

[brandy]

Hi Jari,

You may be able to get a letter from your PCP or gyn. Tell them you stay in remission with your inflammatory bowel disease if you avoid gluten and dairy and you would like a letter so you can get through TSA when flying and bringing safe foods.

Keep it simple in your conversation.

Brandy

[brandy]

Jari,

He told me that none of his patients with MC were nearly as rigid as I was (or extreme, I think was the actual word he used). So, I questioned him about his other patients. How old? Sex? Medicine prescribed? Diet involved? I am the youngest. Most are women in their 70's. He prescribes Budesonide, and I said, "So, when the 6 months is up and they haven't changed their diet, then what?" He said, "Well, they call me when they run into trouble."

My guess is you are doing the best of his patients also. It is sad when all they have to offer is budesonide and for a middle aged person like me it is not a lifelong option and even for most seniors it is not a life long option.

[jlbattin]

Brandy,

That was the impression I got also because he just didn't really want to talk diet. I'm doing the best of all of them, and as I was leaving (after he had told me that I might want to branch out with my foods and try things), he said, "Call us if you need us. My guess is we won't be hearing from you!" I just smiled and walked away.

You got that right! I would never go back to those foods after all of the reading and research I have done (even if I COULD eat them). I feel better without them. So, there won't be any reason for me to call, hopefully!

[JFR]

Jari - When my symptoms went from moderate to severe I had already lost all faith in any doctor being able to help me. This forum is what helped me. I don't even have a diagnosis of MC but my symptoms matched and I didn't need a diagnosis to change my diet and the dietary changes worked. Who needs a doctor? My family doctor believes me about the food sensitivities or at least she doesn't express doubt or suggest I add foods back and she does write them down in my chart. Most of us here have just learned to go it alone. As to what you should think, it's clear that what you should think is that you know what you are doing and your doctor doesn't have a clue.

Jean

[Erica P-G]

Gee Jari,
This made me kinda sad...I mean I'm glad you are doing so much better, it's just the pits the Dr. could be so happy go lucky about it all, when in reality we really want someone on our side we can talk to and they will understand to.

I don't have plans to go back to any Dr. regarding MC, unless I absolutely get sicker than a dog for some reason. I feel diet change and added VitD3 and Mag with some B's down the road are probably going to be MC's biggest help, beyond that is probably very individualized healing for each of us.

Hugs to you, and thankfully we have this wonderful site to banter on
Erica

[jlbattin]

Thanks, Erica. I could use a hug today. It's been one of those days (at work)!

It was very disappointing, to say the least, and my only other interaction with him was when he did my colonoscopy, and I was just so impressed (after the fact) that he knew to take biopsies and check for MC that I had just assumed that he was more knowledgeable than that. He diagnosed me so quickly and when I was having trouble with heartburn, he took the time to call and talk with me. I should have known when I saw his PA early on and she didn't mention diet and when I asked her why, she replied, "Most people don't want to talk about diet changes." that he would be the same way.

I still believe he's a really good GI doctor (the generic version) and will go back to him for my colonoscopies as I don't like switching around, and I've had 2 different GI doctors do colonoscopies before this one (only because that's they way it worked out when my PCP referred me). I will continue down the path I've already started and continue to cut out the things I know will cause me harm. I will continue to turn to this board for help and support.

Fortunately, my PCP believes in me and knows enough about MC that he believed me about the sensitivities and put it in my record. Thanks Brandy for the suggestion of getting a letter from him. I will give that a shot.

Thanks all for the support! I don't know what I'd do without all of you!

[Marcia K]

Hi, Jari. When I returned to my GI's office 6 weeks after my diagnosis I was told that if the D returned they would put me on the medication that they give to their patients with Crohn's Disease. I knew right then that my health was in my own hands. Finding this group was a lifesaver!

[mjbonsais]

~~~~Sadly, I really like the guy, and I think he does know what he's doing with colonoscopies, etc., and so, I told my husband that I'd just go back to my online support group/family to get the information I need and go get my colonoscopies from him when I need to go again, but not depend on him for any support for my disease. ~~~~

I haven't even called my gastro doc for appt. yet but am having the same thoughts! I knew with the one from a few years ago that some are not all that into "diet" vs. pill connections yet. I wasn't even given a medication upon my last colonoscopy besides cholestramine for a couple of weeks or so. I have had ups and downs and am still battling my MC demon. I will win because of sheer determination!