Anyone gone to Mayo "motility disorders" clinic?

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Zim
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/1/2008 5:35 AM (GMT -7)   
After 2 years of troubleshooting and trying several different drugs, diets, fiber therapy, etc... I still have significant difficulty "controlling" my bowels and consequent problems with work.  I would describe my condition as "mild" IBS or Crohn's, but it is still causing major concerns with my job - the anxiety is just as bad as the actual physical symptoms. 
 
My first gastroenterologist found c-difficile infection, and after clearing that out and with continuing symptoms, we did a blood test that indicated Crohn's.  I did a round of prednisone and went on Asacol for many months without a lot of improvement. 
 
The second gastroenterologist completely discounted the blood test because his cononoscopy looked "fine" to him. 
 
So, long story short, has anyone with "mild" indications gone to a dedicated clinic like mayo or the Cleveland clinic?  Has anyone had significant improvement or better treatment by going that route?

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 5/2/2008 10:13 AM (GMT -7)   
Hi Zim. I have had IBS-D for 25 yrs. The last 5 I have struggled to do anything, work,social, all. I finally told my Dr. 2 months ago I give up put me on disability and let me relax. I am a nervous wreck. He wanted me to try Mayo Clinic. I have already been with IU medical for last 2 yrs. with no improvement. They of course did all the test then said we can control your D then after a year and half of meds including LOTRONEX I was worse. I opted to not go to Mayo after trying (like you ) to see if anyonre had got results. I am now with local Spec. and refuse to drive aout of town again. I just come on here and read then tell my Dr. if I think something might help me. I am suppose to go to Dr. today at 3:00 and still dont know if Im going to make it. I had plans tonight and have no idea if I will make it or not. I am one month in on a two month FMLA to try new meds and approach to control D. So far no luck. I am so tired today from what I call a wash out day yesterday. I only found one perspn who went to MAyo, not better. I really hope you find some answeres. I REALLY DO NOT SEE HOW THEY MISDIAGNOSED CHRONS. You really need to make sure it is not Chrons, because iif it is you need treatment. I feel your pain right now. Im on my fourth spec. plus family. My goal use to br able to function at work. I gave that one up, just going to wait for them to fire me when I go back. Drs. think I can work so I will untill they mekae me leave. My goal now is just to be able to drive and se  grandkids and go to store, leave the house!. They were not happy that I quit clinic but it was too hard to drive on interstate and have a bad D day. I cant even make it in town half the time. Sorry this is negative, the fisrt 20 years I had IBS-D I couls control it so hopefully you will be able to. I took Donatal for 2 years and worked good. I use to get good results with Immodium for years. I took Immodium on a regular basis per Dr.  Good luck.

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 5/2/2008 10:32 AM (GMT -7)   
I'm like Normal, have had very severe diarrhea for a few years, although my illness has been one that resists any diagnosis (including one of IBS). I'm still getting it figured out after all this time. I did go to the Mayo Clinic in 2005 but saw one of their regular GIs and the infectious disease department. I think I baffled them and they ended up telling me to take tincture of opium and hope for the best. I think the Mayo has a very unique and much-needed niche - MOST people will get a proper diagnosis and treatment when they go there. However, there's always going to be the nutty cases like Normal and I...of course we end up on boards like this because after so many months/years of being sick as a dog without a proper explanation you start seeking out others' experiences to try to help yourself! It might be good to go to Mayo if you are close by (relatively, anyway) and want a second opinion. They are very efficient!
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Zim
New Member


Date Joined May 2008
Total Posts : 2
   Posted 5/7/2008 5:44 AM (GMT -7)   

Thanks Sarita and Normal.

It does help to hear from someone with similar experiences. It really sucks when a doctor throws up his hands / shoulder shrugs and tells you to "live with it" and get back to work.  I'd like to see the Doc try to make it through several hours of surgery with this kind of problem.  I assume they feel stress like normal people?

I think the most humbling aspect of this is the "mental" component of "this".  I've always considered myself to be very stable / strong, but reading that the traditional thought about IBS is that it's largely about the mind - gut connection, causes a lot of self doubt and more anxiety.  I'll admit that stress does seem to make my symptoms worse, but I'm absolutely certain that something physical is wrong.  I have problems even when there is no stress at all.  I couldn't find any local specialist to try bio-feedback techniques (something I would have considered quackery years ago), but I did try a counselor who started me on stress relief audio and techniques. 

I'm currently on a no-gluten, dairy-free diet which is just a ton of fun!  My job requires me to be on the road for 4 days at a stretch, so I live on rice cereal, rice crackers, and boiled eggs.  I don't dare eat anything at any restaurant - even a piece of grilled chicken is usually spiced up with something that doesn't agree.  On the plus side - I'm back to my high school weight, and running is a lot easier.

Thanks again, I hope you all find help and relief. 

God bless!

 

 


Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 5/7/2008 4:28 PM (GMT -7)   
Zim, I too was told for yrs I just needed to handle stress better. Always thought it was my fault.It is an intestinal disorder. And stress always affect your body. After going thru cancer with my late husband AND NOT HAVING IBS PROBLEMS the whole time I decided the Drs. were wrong.It is not food or stress because my symptoms USE TO come and go. The lasr five years they have stayed! What I am trying to say is diet and stress may not make you better. You may need medicine too. I tried the no carb. diet. mad It really isnt enough to keep you going.I was having charlie horses and really tired. Havent tried gluten free cause DRs. insist it is not Celiac. I wish you luck, hope you can find a good DR.
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