Saturday, January 9, 2010

Where do I even begin...

I have been a little withdrawn and distant the last couple of days. Quite a few people even inquired as to what is going on.

Here is some history real fast. I was diagnosed with Crohn's in 1999 after YEARS of being sick and doctors telling me it was in my head. When I was ten years old my appendix (what was left of it) was removed - the doctors thought this was the underlying issue. I was relatively "healthy" until I was sixteen years old, when I had a flare up that lasted a month in which I lost 20lbs. The flare up passed, and I was "healthy" again until I was nineteen.

When I was nineteen - in June of 1990, I became extremely ill. I developed a rectal abscess, and had extreme pain, nausea and fatigue. My general physician sent me for a small bowel follow through and this showed strictures. I saw my GI in summer of 1999. I had colonoscopies and endoscopies all showed Crohn's damage. They did multiple biopsies do even confirm that I had the Crohn's gene.

I struggled for years and had a bowel resection in May of 2000. Two weeks before the bowel resection to get a better idea of the full extent of the damage I had a CT Scan and another small bowel follow through. BOTH essentially didn't show ANY Crohn's. I was having extreme pain and nausea. My GI tried to talk me out of the resection surgery; he didn't think it was necessary. With all the pain I was having, and talking with the surgeon and my parents we went ahead with the resection - THANKFULLY. What the surgeon removed was strictures and damage that was far beyond what the GI docs ever imagined. I had diseased bowel that was dated to be 14yrs old. The pathologist had such issues even cutting the bowel as it was so dead and rubbery. I was a walking time bomb for a bowel perforation. After that surgery I fired my GI doc ( a well known doc in a huge practice in my area) and searched for others. I had multiple abscesses from fistulas - we're talking about 18 -20 I honestly have lost track and every single one had to be cut and drained. In 2004 I had major rectal/anal surgery to remove the fistulas causing them, and scar tissue from Crohn's. In 2005 I had to have my umbilical tract removed because it was leaking fluid from my bowel from a TINY fistula.

I wound up going to the Mayo Clinic in Rochester, MN - THE BEST PLACE EVER! They clearly saw what was going on, and wanted me to start Humira as soon as possible - which was a problem. The FDA had not yet approved Humira for Crohn's patients, so my insurance would not pay for it. Three years later I return to Mayo - they want me on Humira still. It is agreed that a GI in Cincinnati would manage me, while contacting the Mayo Clinic and consulting with them. I tried a couple of GI's, and they all wanted to run their own tests and etc and would not work with the Mayo Clinic. I went to two private GI's and one was a quack, the other didn't feel comfortable treating me with the acute Crohn's I have (which I can respect). I finally found a GI who was willing to start me on Humira and consult with Mayo - this was May 2009.

I started Humira and have had a lot of issues with it. I've had a lot of dehydration issues, extreme fatigue, and I have virtually NO immune system. I have already dealt with 3 staph infections, all required antibiotics to heal. I had to go off the Humira every single time, since the antibiotic I was taking not a good idea to mix with the Humira.

My dad and I agreed that I needed to check in with my local GI and express what is going on, and how I feel. I had an appointment on Thursday the 9th, 2010. .... This is where things go bad.

The GI came in, and looked at my blood work from my last hospital admittance from November and then proceeded to tell my father and I that she thinks everything is psychological ..............................

I was devastated. The GI proceeded to go on that since I'm not anemic that she doesn't think it's the Crohn's making me sick, and that it is all psychological. She looked at me and even said, "from looking at you I can tell it's psychological". What she didn't give me a chance to say was I had been up since 5:30am extremely nauseous...AND that the symptoms make me feel depressed NOT THE OTHER WAY AROUND. ALL I am asking for is a better quality of life - NOTHING MORE (and for me that would be being healthy enough to work and support myself - that's it!!!). I asked her if she had my records from my resection in 2000 and she said no. I tried to explain what happened, and asked if she wanted ME to get the records for her - to which she said NO as it could get stuck in my small intestines. My father asked if she wanted me to stay on Humira ..which she said yes. I asked if we could do the pill cam - she said NO. I have 2 big problems with those two things. If she thinks it is psychological then WHY would I continue a drug for severe Crohn's Disease? Why would a pill cam get stuck in my small intestines if it is is psychological? Left the doctor feeling completely devastated and angry. In a way I felt like a child again, sitting here hearing another doctor say "It's in your head" - I never knew psych issues could cause someone to develop a DOUBLE bowel obstruction that caused a FULL digestive reversal ( I was vomiting stool).

NOW I again face another TWENTY-FOUR HOUR drive (round trip) back to the Mayo Clinic to figure out what to do now. I am considering checking out the Cleveland Clinic as it is a ten hour drive (round trip).

I was in a really foul mood on Thursday, and yesterday I was in better spirits ..but today just not a good day so far. I figured I'd share what was going on .... as CDSN is one of the few great things in my life right now.


  1. jason - if it's any degree of consolation, know that the way you've been dealing with your crohn's is helpful to me. not the seemingly endless devastation you're encountering, of course, but that you have dealt with GI's who refuse to investigate what their CT and SMFT scans don't flash in their faces.

    it's hard to ask a physician to consider treatment options for something that they can't see through their safety goggles, but crohn's is obscure enough that you would think GI's would be more flexible in that regard. however, medical liability and insurance restrictions put just as much restraint on their practice as they do our indulgence in it. its' a screwy system, but it seems like Mayo Clinic is on your side. they are fairly reputable in that. good luck.

  2. Ragamuffin-
    Thank you truly for the kind words. I couldn't agree more with you. It is some consolation also knowing it is helping. If I can help one person not have to go through the ordeals I have ...would be wonderful. Something I've learned about GI's recently is this: They are excellent (most of the time) at their jobs and the GI ...BUT they are NOT all experts or even specialists in Crohn's Disease. As you stated it can be so obscure - there are feet and feet of small bowel that is NOT being seen properly.

    Thanks for reading my blog - I do appreciate!!
    Best Wishes,

  3. Jason -- for a second time, this post has been quite valuable to me. between you and Kate from CDSN, i am convinced it is time to demand some action from my GI. have you ever had a laparoscopy? and was it helpful if you did?