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(My Intro) In search of support...

Hi everyone - My name is Kristi. I am 27, and was diagnosed with Crohn's in 2007. Here is my best attempt at abbreviating "My Story"!

* 2007 - Graduate School (Occupational Therapy) After countless ER vists and admissions, finally diagnosed!!! Followed by open small bowel resection due to partial obstruction

* 2008 - Despite resection, inflammation continued - symptomatic and visible with scans... Trialed Pentasa, then 6MP, then began Remicade ~ 8 wks.

* 2009-2010 - YAY I graduated with my Masters! First "real job" began... Symptoms persisted, pain increased, BM frequency increased, fatigue worsened, joint pain appeared ~ Remicade moved up to 6 wks and added B-12 inj and various probiotics and antispasmodics

* 2010 - Changed jobs to one with more flexible hours due to fatigue and symptoms worsening

* 2011 - Changed jobs again to even more flexible hours and less physically demanding

* 2011 - Partial obstruction and adhesion difficulties - 2nd Open small bowel resection and adhesion removal
** Acquired VRE from hospital, developed seroma in peritoneal cavity that burst through incision 2 weeks after surgery that resulted in a wound that was several inches deep and took 4 months of packing and treatment to heal.
** Had to take long quit this new job. "Rested" until 2012 - symptoms were slightly improved during "rest" period.

* April to November 2013 - began part-time work (a few clients a week) and slowly built up case load to 30 hours per week w/ 4 days/week. Pain became severe again, affecting daily life activities. Fatigue was intolerable (sleep study results led to beginning Ritalin to help with sleepiness).
** CT showed intussusception - had 3rd surgery - Open adhesion removal to correct intussuception and to try to decrease pain
** Admitted back to hospital for a week before Christmas - Pill endoscopy showed new active crohns w/ apthous ulcerations in small bowel - added Methotrexate 15 mg weekly to regimen.
** Again, I've quit working. Now interested in pursuing disability as I've FINALLY began listening to my body... I'm afraid of being denied, as I know I cannot return to work without causing a very decreased quality of life and can't afford to have NO income at all :(

Currently, I am feeling very frustrated and very tired of waking up every day to pain, fatigue, and being BFFs with the bathroom... Which all has brought me here! I am looking for support, encouragement, and above all UNDERSTANDING of what I.. what WE... go through on a day to day basis. Sometimes my pain and fatigue is so bad I can't even get through a shower without sitting to rest... And while my close family and friends try to empathize, no one truly UNDERSTANDS unless you've been there! So I welcome your questions, comments, advice, and your "I hear ya's!"... Because having IBD sucks, but it has to be better when you have support from those who understand!
 

Trysha

Moderator
Staff member
Hello Kristiehelene
Congratulations on your achievements.
Sorry to hear of your constant battle... it is such a difficult condition with so many twists and turns, but it will get better.
Have your doctors suggested Remicade or Humira? these can bring about remissions that can be long lasting for some people.There are also other things that can help.
It is so sad with such a promising career ahead of you that you appear to have come to a full stop.
Don't give up---it will get better with the help of good therapy.,and the right kind of support which you will find here.
Many of us are travelling the same journey and are with you.
You will find new friends here and lots of information in these pages.
There will be others along soon to help and advise you of their experiences.
Feel better soon
Hugs and best wishes
Trysha
 
Trysha - Thanks for your response! I have acutally already tried Humira, and have been on Remicade every 6 weeks for 4 years... and recently added methotrexate as Im continuing to have active disease on scans and continue to be extremely symptomatic. I don't view it as "giving up" my career, to be honest, as I can always jump back in, even 15 years from now... That is the beauty of being an occupational therapist - there is always a need for qualified people! However, in the interim, I think I need to listen to my body and take a "for now" break from work and focus on allowing my body to rest and heal. I'm hopeful that I will be approved for disability, and should remission ever be achieved for an extended period of time, I will try returning!! Thank you again for reaching out and I look forward to the support here :)
 
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