What to expect on first visit to gastro?

Posted by butterflykizzs @butterflykizzs, Jul 22 1:42pm

I am about to go but am hesitant. It is a long trip and a lot of cost for me.
I read online a lot of great stories but also a lot of people who said they got no help and no promised test and diagnosis and wasted their time and money.
I thought I would ask how it went for any of you. Reason I am going is because I have multiple rare and complex issues going on at same time and nobody in my state understands what to do or they do not listen and hear me and refuse to take the time to understand or test.
It is scary! Mayo is a last resort for me. Please share any good or bad so I can make a choice.
Thanks so much!

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I wish you could be more specific about what the medical issues are. I had a rare condition and was later diagnosed with fistulizing Crohn's. The first Dr I saw referred me to a Colo/Rectal surgeon who told me to quit smoking and drink Ensure. He referred me to a Gastroenterologist who ordered a colonoscopy which couldn't be done because the fistula connected my ileum to my vagina. The prep didn't empty my colon at all. By this time months have gone by and I landed in the ER at high risk for death.

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Profile picture for catherine1290 @catherine1290

I wish you could be more specific about what the medical issues are. I had a rare condition and was later diagnosed with fistulizing Crohn's. The first Dr I saw referred me to a Colo/Rectal surgeon who told me to quit smoking and drink Ensure. He referred me to a Gastroenterologist who ordered a colonoscopy which couldn't be done because the fistula connected my ileum to my vagina. The prep didn't empty my colon at all. By this time months have gone by and I landed in the ER at high risk for death.

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I have autoimmune gastritis with metaplasia and hyperplasia in pancreas area and parts of the stomach and at this point my stomach has atropy. I also have gastroparesis, possibly caused by my inability to process the foods and no longer making any real stomach acid.
I have weight loss and a LOT of pain when I eat or drink. Severe cramping pain plus runny stools. Mostly bile and lots of mucus. I am shedding my stomach lining.
There is more like non alcoholic fatty liver ect.
So have you been to Mayo for your issue and if so, how did that go?
TY so so much!

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Profile picture for butterflykizzs @butterflykizzs

I have autoimmune gastritis with metaplasia and hyperplasia in pancreas area and parts of the stomach and at this point my stomach has atropy. I also have gastroparesis, possibly caused by my inability to process the foods and no longer making any real stomach acid.
I have weight loss and a LOT of pain when I eat or drink. Severe cramping pain plus runny stools. Mostly bile and lots of mucus. I am shedding my stomach lining.
There is more like non alcoholic fatty liver ect.
So have you been to Mayo for your issue and if so, how did that go?
TY so so much!

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When I showed up in the ER I was admitted to the hospital and the Colo/Rectal surgeon was obliged to treat me as I had already seen him. He was a very skillful surgeon who preferred not to deal with Crohn's pts but here I was.....dying! They put me on TPN for a week as I had severe malnutrition. I ended up with an ileostomy. I found a different Gastroenterologist from a different health system to treat the Crohn's. She tried 3 different oral med and finally settled on the Biologic Stelara. Everything calmed down and the ileostomy was reversed 2 and a half years later. I have continued the Stelara for 7 years! I hope you can find some help before you are also at death's door! Keep writing!

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Profile picture for catherine1290 @catherine1290

When I showed up in the ER I was admitted to the hospital and the Colo/Rectal surgeon was obliged to treat me as I had already seen him. He was a very skillful surgeon who preferred not to deal with Crohn's pts but here I was.....dying! They put me on TPN for a week as I had severe malnutrition. I ended up with an ileostomy. I found a different Gastroenterologist from a different health system to treat the Crohn's. She tried 3 different oral med and finally settled on the Biologic Stelara. Everything calmed down and the ileostomy was reversed 2 and a half years later. I have continued the Stelara for 7 years! I hope you can find some help before you are also at death's door! Keep writing!

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I am so sorry you have been through all of that. I have been on an NJ tube before but am worse off and more malnourished than I was then. It is scary to think of a tube again. I can not even get anyone to give me anything. I just keep suffering.
I used to go to Mayo in Jacksonville but they are done with me and will not even speak to me now. So my option is Mayo in Minn as no docs here will touch me and I am way too complex.
It is a scary place to be in when you are under 100 lbs and getting no nutrition.
My fear is wasting my time and money going there for nothing. TY again and hope you are better now and getting great care!

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My 88 year old husband has an appt in a week. I'm glad his gastroenterologist admitted he couldn't get help in Tallahassee--his Stage 4 liver disease (probably PSC of unknown origin) has stumped them also after numerous blood tests, scans and ultrasounds. Since the Jacksonville Mayo is about 3 hours from us, there are many from our area that go there, or to Shands. We have heard many great outcomes. Just remember, doctors do not know everything: only God does but together, hopefully you can get answers and relief. Even Mayo and esteemed Clinics are "practicing" doctors, but their team approach works best. Don't look at it as your "last resort" but as your First True attempt to a good quality of life. It was a long wait to see the doctors he did see locally (since February) and a wait to get into Mayo. Be proactive and advocate for yourself respectfully, prayerfully, courageously. I hope someone you can help you navigate and cares for you will be with you!

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