Time to go to the Mayo? Need advice!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Aug 2010
Total Posts : 3
   Posted 8/31/2010 12:40 AM (GMT -6)   
I am a 52-year old female who has had Crohn's for probably 15 years but just recently got the correct diagnosis after I developed fistulas that caused gas, feces and bleeding through the vagina.  Was put on Remicade immediately and it helped the fistulas until I had a horrible neurological reaction on the third loading dose and couldn't walk for a month, wound up in a wheelchair. 
Now I'm about to take the third loading dose of Humira and have had  no measurable results - still pass gas through vagina every single day - and have now developed chronic abdominal pain that NEVER ceases. 
In a lot of ways, I wish I could get back on Remicade as at least I knew the fistulas were closing.  I am on Prednisone and 6MP so I've also lost over half my hair and have gained 15 lbs. of pure FAT.  I have a small frame so 15 lbs. looks like 30 on me.  I have the buffalo hump, the enlarged neck....I hate how I look and how I feel even more.  I was a vibrant woman with a great husband and career.  Now I am in a sexless marriage (my choice - umm how can I feel sexy?) and my life has now dissolved into a sea of pill bottles with unknown side effects.  I am having a hard time holding down a fulltime job and that's the hardest part - going to work when you absolutely know you need to be in bed.  But life goes on and there's bills to pay despite the Crohn's.  I get so tired of it.  People at work have stopped asking how I am as they all think I am well because it's been months.  They don't understand this thing just doesn't cure itself like a bad cold!
I am so confused about what to eat and what supplements to take.  After 10 years of straight diarrhea, I am now constipated most days with a distended belly and bloating.  Probiotics aren't helping any longer so my GI doctor has given me that awful before-colonoscopy drink to clean me out.  Yuck.   I am miserable with the pain.  I just want it to end, that's all.  I want my life back.
My dilemma right now is my employer is pushing me to go to the Mayo Clinic in MN.  They will pay for transportation and we have great health insurance.  I just don't know what they would do differently at the Mayo though?  I know I don't want surgery yet as from everything I can read, it's such a slippery slope that you can never get back off of.
Has anyone went to the Mayo has a last resort and did they help?  Do they really do things so much differently that we may have a better success rate there?
Should I jump on it or wait to see if Humira finally works for me like my local GI doc wants to do?  Should I ask to go from Prednisone to Entocort?  Will I have fewer side effects?
Any feedback is so appreciated.  This is just too overwhelming for me to decide alone.  Thanks guys.

Crohn's for 15 years, dx'd correctly Feb 2010, have fistulas. Bad neurological reaction to Remicade, started Humira August 2010. Have had horrible abdominal pain since & lost over half my hair and GAINED 15 lbs.! Humira isn't working, fistulas aren't healing!
52 year old female on Humira, Prednisone (EVIL), 6MP, Ambien, Lortab, Boniva, Calcium, D3, etc.

Regular Member

Date Joined Nov 2009
Total Posts : 380
   Posted 8/31/2010 5:35 AM (GMT -6)   
yes, go. you have nothing to loose. at times, i feel like i want to go as i want my life back.

good luck
48 yrs old male married 2 teenage boys. 
  • Dianosed with CD 14 yrs ago-probably had it for a lot longer 
  • tried Asacol, Pentasa, Cimzia, Remicade, Predisone
  • Had blockage in 2009-hospitalized for 6 days. 
  • Had surgery in Jan, 2010 to remove terminal illium-13 inches total of small and large. found 3 strictures.
  • Tried 6MP after surgery lost more weight. 
  • Crohn's is back already
  • Now restarting Remicade.

Are we having fun yet?

Regular Member

Date Joined Feb 2010
Total Posts : 403
   Posted 8/31/2010 10:10 AM (GMT -6)   
If you have the chance to go to the Mayo, go. They are an amazing hospital with amazing doctors, and yes they do things differently and better. I have never been treated better or felt more cared for than at the Mayo.

I wish you the best of luck.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Methotrexate injection, Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch.
had to stop Imuran due to pancreatitis

Regular Member

Date Joined Jun 2006
Total Posts : 229
   Posted 8/31/2010 10:21 AM (GMT -6)   
I agree with everyone else---go to Mayo! I'm jealous that you have that opportunity!
Crohn's Disease for 18 years.. 1st Resection June 2009 developed anastomostic leak and EC fistula. 2nd Resection, April 1, 2010-to fix leak and fistula-feeling fabulous now.  Taking 100mg Imuran for maintenance. 

Veteran Member

Date Joined Mar 2005
Total Posts : 589
   Posted 8/31/2010 10:50 AM (GMT -6)   
Definitely GO to Mayo - if you have the chance and the transportation, please go.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 24, 2016 3:15 PM (GMT -6)
There are a total of 2,711,197 posts in 298,970 threads.
View Active Threads

Who's Online
This forum has 153538 registered members. Please welcome our newest member, ElizabethW.
373 Guest(s), 13 Registered Member(s) are currently online.  Details
StarGirl10, VLou*, Serfr, Stanislav, Steffersp, Sallyyy, janelise, poohcheez, wellness hailu, Jimmyjumpstick, mjw11, goodnurse53, Snarf

Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer