For what its worth....new GI doc gave a bit of perspective

pieroaj · Post by **pieroaj** » Thu Jul 27, 2017 5:59 am

One thing I have struggled with, since being diagnosed in March, is how dismissive my GI was of the disease state. Literally, she wrote me a years worth of Uceris and told me to come back in 10 years for a follow up colonoscopy. (she did say call if I need anything, but I felt completely dismissed). Prior to this, I may not have thought she was the most personable GI, but I thought she was fine. I know from this board, this is not uncommon, but the work I do is affiliated with the medical industry and I was still taken back by this. Not to sound babyish, but it really hurt my feelings and made me angry.

Anyway, during my vacation in California, I had to go to the ER due to severe spasms. I did agree to a CT, reluctantly, to make sure that something else wasn't going on. On the CT, liver cysts were found. This is not uncommon, but I had to follow up with my GP. She wanted my GI to review it, and since I wasn't going back to the above GI, I was forced to find a new one. One of the questions the new GI asked me was "Am I a second opinion or are you looking at switching?" I nicely said "with due respect to my other GI, I felt dismissed and that I am not suppose to go back for 10 years." His response, "no need to explain, some GI's are scoping GIs. They are not much into management of disease states." Again I know it has been said on these boards, so maybe it was the tone in his voice, but that statement made me not as angry at my former GI. I still feel it is unfortunate, but it made me not take it so personally.

This GI spent 20 minutes just talking to me, which is a lot in the medical world. He is not in agreement that dietary changes are needed, but he does not oppose them. We came up with a plan and I go back in 6 months. I am going to continue the dietary changes in conjunction with 3 mg of budesonide daily, until I have more control of my symptoms. (The 9mg of Uceris was too much and worked too well.) I am continuing the Vit D, Mg, B12.

Anyway, sometimes it is hard to let go of anger, at least for me. I kind of feel like I got over a mental hurdle.

Thank you all for letting me "vent"
Angela

Deb · Post by **Deb** » Thu Jul 27, 2017 6:09 am

Angela, I remember that feeling too. My regular Dr. was gone when my test results came back. The nurse was reading me the results. She glossed right over "lymphocytic colitis". I stopped her as she continued with my results and asked her what she said. She minimized it when she briefly explained it to me (as have most sources and Drs I've read/heard. I think the anger stemmed from them not understanding what a life-changing disease this can be.

Post by **tex** » Thu Jul 27, 2017 7:15 am

And part of the problem is not understanding the disease. They can diagnose it but they're frustrated by not being able to "cure" it. It keeps coming back because they don't realize that diet changes have to be made.

Tex

Vanessa · Post by **Vanessa** » Thu Jul 27, 2017 8:29 am

When they "read" me my diagnosis, I was told that I was lucky it wasn't something worse. Really? Then a couple years later when I was still not doing great, I was told all of my magnesium deficiency symptoms were in my head. I was so angry, scared, and sad for a long time. I felt like a big boot squashed what was left of any life I had in me. Unfortanely, I have such little faith in the medical community (and I work in a hospital) that if I ever need them in the future I'm going to have one hell of a time. You are not alone in your feelings!

Thank god for everyone here...

Erica P-G · Post by **Erica P-G** » Thu Jul 27, 2017 3:03 pm

My GI was very nice, very professional, very smart about what she knew how to do and that was check the colon and look for abnormalities....that is it!

I have not asked her anything more after that colonoscopy visit....I had to go figure it out with a couple MD's....and that took me some time because obviously I had my colonoscopy in 2012 and I didn't find this group until 2015 so I had plenty of head games going on inside myself and finally had to pick one Dr any PCP and even that one had minimal knowledge about colitis or LC/MC but he was nice and I have been giving him the benefit of the doubt and giving him information to chew on from time to time without sounding more knowledgeable than he.

I really wish diet was more accepted as a way to cure people....too much chemical medicine in the world right now.

LauraAnn · Post by **LauraAnn** » Thu Jul 27, 2017 4:30 pm

The last time I saw (over a year ago now)my GI and I had been on our special diet and I was not taking any of "his" medicine and was doing better he had the nerve to tell me that most people won't follow a diet change so he never brings it up as an option. I knew then that we weren't going to have a long term relationship!

Deb · Post by **Deb** » Fri Jul 28, 2017 4:38 am

Laura, my doctor kind of indicated that at one point too....that most people aren't willing to do what needs to be done. I think they have to take some responsibility for leading people to believe that all they have to do is pop a pill to fix things.

pieroaj · Post by **pieroaj** » Sat Jul 29, 2017 7:36 am

Thanks y'all. I knew my new GI wasn't going to suggest diet changes. I knew him years ago, and unless there is a solid clinical study, he isn't going to recommend it. He was not opposed to diet, he just wasn't going to recommend. For where I am, I am okay with this. I have learned enough from this board to know the dietary changes that need to be made. At least he listened to me and was not dismissive of the impact of MC on a person's life. He said that bowel control is a basic human need, and to live without it affects you not only physically but mentally too. I do appreciate his non-jundgememtal way of saying my former GI was a scoping-GI, and not a disease management GI. I didn't realize how much anger I had.

ultimately, I do need a GI, although liver cysts are benign, their size needs to be monitored. Where it would be great to find one that I completely agree with, I don't know how realistic that is.

I am so thankful for this board. It is a wealth of knowledge about a challenging disease state to say the least.

Angela

Erica · Post by **Erica** » Wed Aug 02, 2017 5:31 pm

I was wondering if leaky gut syndrome is linked to M.C.It certainly feels like it. I was doing nicely two weeks ago and now a sudden flare up. Usually taking one or two entrecorts help right away but not now. Iam wondering if I should just stay on chicken soup for a day or two. Iam so depressed.Any advice?

Post by **tex** » Wed Aug 02, 2017 5:44 pm

Erica,

Leaky gut is what causes the food sensitivities and most of the clinical symptoms. To get out of a persistent flare we usually have to go back to a regular recovery diet as if we're starting over. If you're going to take budesonide you will probably have to take a full dose (3 capsules per day). Less than that may not help.

Tex