Mayo Visit & Waiting for Answers

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ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 6/28/2008 8:08 AM (GMT -7)   
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! 
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/28/2008 8:17 AM (GMT -7)   
((((ShaddyBaby)))) I am so sorry that you have been suffering for so long. The way you describe everything it sure sounds like Crohns. I pray the doctors find some answers for you soon. God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/28/2008 8:20 AM (GMT -7)   
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.
Tough times don't last long, tough people do!


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/28/2008 8:48 AM (GMT -7)   
Shaddy, which Mayo are you going to? Rochester, Jacksonville or Scotsdale? You really must present a difficult conundrum of symptoms for Mayo (especially if it is Rochester) to be this long in Dx'ing the cause or causes and proposed treatment. I've found thru 50 years of vists to Mayo, Rochester, that they are the EPITOME of efficiency as well as the tops in Gastroenterology and other specialities. They are known for not leaving any stone unturned.
 
IF you could just once even see the films from say a CT Enterography done at Mayo w/in just a few weeks of one done locally you would understand and see for yourself how their state of the art equipment and experienced radiologists and techs can reveal and detect so much more than our locals.
 
You really are in the best of hands at Mayo and I hope you get some answers soon!!!! (((hugs))) and God bless!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 6/28/2008 9:54:58 AM (GMT-6)


ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 6/28/2008 9:28 AM (GMT -7)   
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!
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown


ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 7/2/2008 9:39 AM (GMT -7)   
I just wanted to update you all. I just heard from my doctor and said I do have Crohn's but it is atypical Crohn's. He still wanted to meet with the other Crohn's specialist before he starts me on meds. He did say the other specialst would be back next week and he will talk to him and call me. I'm glad to finally have some answers!
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/2/2008 2:17 PM (GMT -7)   
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!!!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 7/2/2008 3:24 PM (GMT -7)   
I think the atypical part is that the biopsy is negative for Crohn's. It always has been. I don't know that for sure but I'll ask him. He said it is in my illum and after he meets with the other Crohn's specialist he will probably start me on Entocort. I'm just glad to finally have an answer- some people have implied that it is all in my head and stress is causing it. After 7 years I'm glad to finally have something to call this. I know it doesn't make it better but it is better than having something wrong and not knowing what it is.
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/2/2008 5:55 PM (GMT -7)   
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

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 7/3/2008 12:11 AM (GMT -7)   
So glad you finally got answers. I don't know how you couldn't have Crohn's with all the ulceration and inflammation in your TI, and it skipping around your colon. But I don't really understand all the biopsy talk that the doctors do. I had ulceration (one that caused sever bleeding) and inflammation in my TI as well. Biopsy showed inflammation my doc said. But he's the one that one minute says it's Crohn's then the next wants to act like he doesn't know. Which I won't tolerate anymore. With my history of all that, plus my rectal abcess and fistula I can't imagine what else I could possibly have either. It's like they are afraid to really come out and SAY what they know it is.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 10 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 7/3/2008 7:50 AM (GMT -7)   
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.
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/3/2008 8:32 AM (GMT -7)   
So glad to hear you finally got some answers. Hopefully you get on medication soon and get feeling better again. Good luck and don't hesitate to ask any questions, thats what we are all here for, support!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 7/3/2008 6:01 PM (GMT -7)   
I'm glad they have come to some conclusions. 

ShaddyBaby
Regular Member


Date Joined Jul 2003
Total Posts : 127
   Posted 7/3/2008 7:01 PM (GMT -7)   
Thank you all for the words of kindness and support. It is nice to have someone to listen and understand how I feel. Thank you!
"Shoot for the moon.  Even is you miss you will land among the stars."
- Les Brown

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