Not being able to see an actual gastro doc at Mayo

Posted by gastrogirl @gastrogirl, Oct 29, 2021

I wrote before but I had an appointment with one of my other docs at mayo yesterday. Extremely concerned about my condition and asking why I am not yet on a feeding tube for nutrition. Told me to call and ask to get an appointment with an actual doc there and not just the NP. I been told this twice. They say there is nothing they can do, it is up to the gastro dept. My hepatologist even wrote them herself. had zero luck. So again, at their suggestion, I called and explained and again was told it is not possible to get an appointment with one of the doctors and I have to keep seeing the NP, who seems a bit over her head and is not listening to my other actual docs there. In the meantime I am eating less than 300 cals a day for months. Looks like I have to leave Mayo and find someone else. I was in hopes they all worked together as a team and one doc would get with the others and collaborate on how to treat my condition. This has not been the case. Not one of the docs I see even knows what the other is saying or doing. Is this normal? I am so disappointed.

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Well, I tried to get into the Mayo clinic after 9 months of very debilitating GI Issues. I still have them. Maybe it is not the place for me after all. But, where can you go? I live in the Dallas area and to get into the Gastro Dept. at UTSW - Dallas takes 13 1/2 months. No exaggeration - I will not be alive by then. I too only eat a couple of hundred calories per day. No specialist here can figure out what my GI issue is.

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@ilean

Well, I tried to get into the Mayo clinic after 9 months of very debilitating GI Issues. I still have them. Maybe it is not the place for me after all. But, where can you go? I live in the Dallas area and to get into the Gastro Dept. at UTSW - Dallas takes 13 1/2 months. No exaggeration - I will not be alive by then. I too only eat a couple of hundred calories per day. No specialist here can figure out what my GI issue is.

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Have you had an endoscopy or colonoscopy lately with an gastroenterologist? That’s where I would start. After my endoscopy (that I asked for) I still had food in my stomach and I had fasted over 20 hrs…. I had a gastric emptying test that lasted 4 hrs that confirmed I had gastroparesis. I had probably had it for years… Lots of bloating & pain after eating only small amounts….. Maybe this might not be your problem, but you need to start somewhere. .Prayers For Comfort and Solutions…..

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I have to agree that getting an audience with a doctor at MC is frustrating at best.
I have been blessed to be one of the chosen ones since 2016 because I have a very rare disease.
We need to keep in mind that Mayo is not the only place that offers exceptional service. I’ve heard many great things about other places like the Cleveland Clinic, Johns Hopkins, UCLA Medical Center etc.

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@ilean

Well, I tried to get into the Mayo clinic after 9 months of very debilitating GI Issues. I still have them. Maybe it is not the place for me after all. But, where can you go? I live in the Dallas area and to get into the Gastro Dept. at UTSW - Dallas takes 13 1/2 months. No exaggeration - I will not be alive by then. I too only eat a couple of hundred calories per day. No specialist here can figure out what my GI issue is.

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I sat in their lobby in Rochester 3 days waiting on a cancelation to see one. Finally got one but to no avail. Was advised to go get a drink. Self referrals are not heard. I had to come home to get diagnosed and ended up having to have a bowel resection but my mailboxes have been bombarded asking for donations to research. Just find a good word of mouth Dr. locally honey.

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Hmm..Interesting A referral was never mentioned to me. They could have ask d me for one. I have 9?different specialist sts that would give me one. Their reasoning was Covid and the number of people trying to get in. We have excellent insurance but also will cash pay. When does a cash pay customer need a referral?

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@peggyjean

Have you had an endoscopy or colonoscopy lately with an gastroenterologist? That’s where I would start. After my endoscopy (that I asked for) I still had food in my stomach and I had fasted over 20 hrs…. I had a gastric emptying test that lasted 4 hrs that confirmed I had gastroparesis. I had probably had it for years… Lots of bloating & pain after eating only small amounts….. Maybe this might not be your problem, but you need to start somewhere. .Prayers For Comfort and Solutions…..

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Yes, I have had a colonoscopy, endoscopy, 3 CT scans 1 with contrast 2 without, bloodwork, UA, MRI, etc. all are negative. And stomach emptying test.

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Every year, more than a million people come to Mayo Clinic for care. Mayo Clinic's highly specialized experts are experienced in treating rare and complex conditions.

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@ilean

Yes, I have had a colonoscopy, endoscopy, 3 CT scans 1 with contrast 2 without, bloodwork, UA, MRI, etc. all are negative. And stomach emptying test.

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I have complete faith in Mayo Clinic…. I am here today by the Grace Of God & Mayo Clinic…. I had a stem cell transplant for Amyloidosis 15 Yrs ago & am still being followed by Mayo Clinic Rochester, Mn. My problem now is gastroparesis & limited knowledge of it by practitioners…. Prayers For You & Medical Solutions & Comfort…🙏❤️

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@peggyjean

Have you had an endoscopy or colonoscopy lately with an gastroenterologist? That’s where I would start. After my endoscopy (that I asked for) I still had food in my stomach and I had fasted over 20 hrs…. I had a gastric emptying test that lasted 4 hrs that confirmed I had gastroparesis. I had probably had it for years… Lots of bloating & pain after eating only small amounts….. Maybe this might not be your problem, but you need to start somewhere. .Prayers For Comfort and Solutions…..

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Thank you for your reply. Yes, I have had every test known to the GI community I have seen two different GI’s. Everything comes up negative! I am at a complete loss.

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