Mayo Visit & Waiting for Answers

I haven't posted here is a while. I just need someone who understands what I'm going through to vent to. I have been sick for 7 years and I've been to multiple GI doctors in my surrounding area. I finally broke down and went to the Mayo Clinic this summer. I went the first of June and I had to go back again this last week. They have redone all the multiple tests I've have done so many times before. I had an MRI and the upper/lower GI done this last week and they got some biopsies. So I talked to my doctor last night and he said the biopsy was negative for Crohn's. However, he said I have edema, ulcers, erosion, and inflammation in my illium. I also have inflammation here and there in my colon. I also have white blood cells in my stool, many vitamin deficiencies, and fatty tissue on my liver. My Mayo doc is going to meet with the 2 Crohn's specialists at the Mayo and see what they think. I should hear something from him again the end of next week. I know I've been sick for all this time and another week shouldn't matter but I'm so ready to know what I'm dealing with here. I am sick of waiting for answers but I still want to know what is going on with me! I keep going back to when my doc told me if I was an easy case I wouldn't be at the Mayo. Oh well, so I'll wait for another phone call! 

I hate the waiting game, it makes your head full of anxiety, and you feel like "am I making this up", hang in there, soon you should be dx, I would stop at nothing until I found out what it is. Crohns is hard to detect, and I have it in the Illium, and it took 8 months of tests. I hear the Mayo clinic is the best way to go, even tho I am Candian. Dont let up, keep bugging them til you know, it is your life and your pain. Let us know what happens! Good luck.

I'm going to the Mayo in Jacksonville. I really love my doctor there. He was great and he has done a ton of tests on me! He said he wanted to call a meeting with the 2 Crohn's specialists there on my behalf and get their opinion. I am glad that he is not just jumping to conclusions- I just wish it didn't take so long. There are several doctors there that have worked with me and my main doc is great. I would recommend it to anyone who is struggling with getting answers. If I can get the answers I need it will have been well worth the money!

Ah, Shaddy! I've been hoping you would post soon. I'm sorry you do have Crohn's but also understand just what a relief it is to KNOW what the cause of your symptoms are. Do be sure to ask him what is atypical about your Crohn's and share that w/us, please.

And may you respond WELL and FAST to whatever medication you and the doctors agree upon!!!

Hi Your right a person needs to know what is wrong and thank goodness you persisted in finding your answers. I had problems in the TI too so know your pain. Keep in touch and let us know how things are going. lol gail

Jen- I know what you mean about the docs not wanting to say what it is. The first doc I went to told me it was Crohn's but every doc I've been to after that has tried to prove that it wasn't. I got to the point where I gave up on doctors for a while but then it got bad again and I decided it was time to go to another doc. I talked to my famiy doc about sending me to the Mayo. He called them and I was on the waiting list for a few months before they called about setting up the appointment. Every doc I went to redid all the tests I've already had so I wanted to go somewhere it would be worth while and I wouldn't have to keep doing all those awful tests. I must say, if anyone is still searching for answers go to the Mayo. They are wonderful! I did have to go to FL twice (which is a long way for me) but it was well worth the money and time. I finally feel like I have some answers and a doctor who really listens to me.

I'm glad they have come to some conclusions.