Crohn’s/UC Update-Frustration continues

This is more of a journal entry than a entertaining post…

As I indicated in my last Crohn’s/Ulcerative colitis post I made an appointment and went to see a new gastroentrologist (GI doc).  Prior to this I had a flare-up and then a respiratory infection.  I was prescribed Cipro for the respiratory infection which worked to stop the flare-up and clear up the respiratory infection.  Years ago my IBD was treated with Cipro and another antibiotic called Flagle and I responded very well.  Give me a second to catch you up…

A little background info that I’d like to get recorded…Immediately following my first pregnancy I had a severe uterine infection which landed me in the hospital.  I had lost about 5-6 pints of blood during the emergency c-section (a very large amount).  They highly recommended a blood transfusion.  That same day it was announced that West Nile disease was being transferred in transfusions.  I refused the transfusion.  My body wasn’t strong enough to fight off the uterine infection and I was treated with three high doses of antibiotics.  Long-story somewhat short…I ended up with c-diff which caused violent vomiting and diahrea off and on for months.  I was in the hospital about once every other month for over a year.

During one of those visits they found on a CT scan that a fistula (common with Crohn’s) was forming.  The GI doc wanted me to do a Remicade infusion.  I was one of the first 100 patients to ever receive Remicade at the Mayo Clinic, a couple of years prior.  At that time they only gave three infusions.  As time went by the found that if you did not continue with the infusions your risk for anaphylaxis increased.  Since I was only prescribed the three treatments I was in the high risk category.  I did not want to do the infusion and was scared to death.

Then a God moment happened.  They couldn’t find a current negative TB test which was required before taking the infusion.  I had the test done and would have to wait two days.  In the meantime I begged my doc to allow me to take Cipro and Flagyl.  Reluctantly, he folded and gave in to my request.  By the time I was scheduled for the infusion the Fistula had disappeared.

Fast forward to today.  My current GI doc who I’ve seen for three or fours years now doesn’t believe in treating IBD with antibiotics.  This is one of several reasons I began looking for a new doc.  After being treated with Cipro during my recent respiratory infection my flare-up cleared up. Once my chest had cleared up I stopped taking the Cipro and didn’t finish it out – a huge mistake but I’m owning it and dealing with it.  A week and a half ago I flared up again.  After two days in bed and three days without much food, I decided to give the Cipro a try and the flare-up improved but I’m still severely constipated causing lots of pain, cramping and fatigue.  Today was a great day but the rest of the week was horrible.

So on Tuesday I saw the new doctor.  The older two boys were sick with sore throats so I had lugged all three kids into a doctor appointment during lunchtime.  I should have rescheduled. As the three boys destroyed and fought in the examining room I began to present my case for antibiotic treatment.  Her bedside manner was less than desirable as she said “we don’t treat with antibiotics anymore.”   Hello??!!

I left the appointment with a scheduled colonoscopy.  She gave three options for treatment following the scope…Humira (NO!), Imuran (possibility but it still can cause lumphnma so your bone marrow has to be watched) and a third which I’m not familiar with.

Since Tuesday I’ve been doing my own research.  I found a statement by a GI doctor who stated antibiotics can produce positive results.  He posted it on April 27, 2011.  Another publication stated more research needs to be done before the medical community dismisses antibiotics as treatment.  And, a third said there is a very small percentage of patients who respond well.

Am I stupid?  Doesn’t make sense to try something that we know has worked in the past.  And, something that has fewer harmful side affects?

I have a couple of weeks to think this through.  Right now I’m contimplating canceling the colonoscopy and begin calling around until I find a doc who will treat with antibiotics.  Then make an appointment for a scope with that doctor…if one exists.  My other thought is to talk with my general doctor who is now using alternative medicine in addition to traditional medicine.  In that case I would still need the colonoscopy that is currently scheduled.

All I can close with is that I’m extremely frustrated and exhausted right now.

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