Saturday, January 16, 2010


I want to thank everyone for all the amazing comments, and support on my last blog post. I was really upset from the doctor, and reaching out made all the difference.

Here is an update -

Something I did not share in the last blog was I agreed to have a CT Entography scan done on Tuesday Jan 12th 2010. I didn't share it, cause really didn't want to get my hopes up ....I am glad I didn't. I agreed to the CT cause of the information the doctor told me. I have had so many issues keeping contrast down in the past - and the scans have always been hard to read.

The GI on Thursday explained this to me about a CT Entogrpahy (something I had never heard of before).

"This is a new scan, something over the last 2 years. This scan there is NO oral contrast, it is all done IV over 1 hour." I was very excited over the prospect of getting a clear picture of the feet of small bowel that can be clearly scene otherwise (outside of the pill cam which she refused). I show up for the scan, and the nurse says "I'll be right back with the contrast". I stopped her, thinking she was wrong, and she proceeded to explain what a CT Entrogrpahy REALLY is - it involves drinking THREE bottles of oral contrast each one had to have been consumed WITHIN 15 minutes (I can't even drink an 8oz glass of water in 15mins). The nurse then proceeded to explain how a CT Entrography is WORSE then a CT scan contrast wise. I thanked the nurse for explaining the procedure, and canceled it.

My father came back to pick me up, and explained to him all of what happened, and he confirmed that the description the GI doc gave on Thursday was what I heard - wanted to make sure I didn't misunderstand anything.

I called my counselor immediately, as I was very frustrated. She called me back later in the day and had a wonderful conversation - not only did she 100% agree that what is happening is in NO WAY psychological, and that I should never return to that GI again. Amazingly she also referred me to the GI she uses through the University of Cincinnati, and she would be more then happy to speak with him confirming that this is physical, and not mental - SUCH A RELIEF!!!!!!! I called and made an appointment, and see him on Feb 8th, 2010 the earliest appointment he had (this is kinda a good sign I think as this is my mothers birthday - she passed in 2001) something my father also agreed on.

It is so nice to know I have incredible support locally, and an option of seeing a new GI. The prospect of traveling up to the Mayo Clinic, or check out Cleveland Clinic was somewhat overwhelming. Thanks again everyone for all the incredible comments, and sharing your history of the same experiences. It meant so much to know that I was not alone, and others (unfortunately) have dealt with this. Hopefully through CDSN we can change this, so patients in the future never have to experience such ordeals!!!

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.

Friday, January 1, 2010

Welcome to 2010

Happy New Year Everyone!!! As I right this post it is currently 1:30am est Jan 1st, 2010. How amazing that another decade as come and gone.

For many years since 1999, when the Crohn's Disease got really bad, I couldn't fathom where I'd be 11 years later. Now here I am 11 years later, and wow what a roller coaster it's been. From being diagnosed, to my first bowel resection, living in Chicago, the death of my mother, more surgery, disability, life in limbo.

When I created the Crohn's Disease Support Network (CDSN) I knew nothing about web design. I created CDSN on 9.24.09 and I am shocked and humbled that there are currently 241 members. I've always ever wanted to help people - I was going to go to university for social work. I feel like for the first time I've been given the opportunity and it feels amazing...truly cathartic.

I have met a ton of people now with Crohn's Disease, and it has been amazing to talk to people who experience the same issues I go through. It's ironic for years the last thing I wanted was support. Then when I did, I searched and never really found anything that resonated with me. Now I have great support, and able to offer it to others.

I really hope that things continue to head in the direction they are going regarding CDSN - my health that is something that needs to be worked on still. I still am having a hard time. It seems since starting Humira that I've had more issues then before. It is unfortunate, as I had high hopes for it; not the end of the road yet though. I still have some treatments I haven't tried, like Imuran and LDN.

Thank you everyone who takes the time to read this blog, the members of CDSN, and all my friends. I can't wait to see what is in store for 2010. The one resolution I made this New Year is to spread as much awareness as possible - the END of "What is Crohn's Disease?" A disease silent for too long.