Itch

So...you may know that I have Crohn's by now.  (I only mention every other blog post!)  J  Anyway, I have been having a lot of problems with it since right around Thanksgiving.  (If you are doing the math, yes, that is 8 months of pain, nausea, vomiting, diarrhea, loss of appetite and did I mention INTENSE PAIN!?)  Anyway, my sister, a fellow IBD sufferer takes a medicine called dicylomine for her pain.  Basically, it relaxes the smooth muscles in your body that move your bowels, therefore relieving some of the pain.  My GI doctor had me go have some tests done and concluded my gallbladder needs to be removed.  I don’t buy this at all.  Here is why:

1.      Last summer, another GI dr in the same practice thought the same thing and called in a surgeon for a consult.  He requested what is called a hidascan.  It is a radiologic test to see how well your gallbladder is emptying.  Mine was fine.  Yes, I have a few small stones, but the surgeon said at my age, most people do.

2.      I do not have gallbladder pain at all.  ALL of my pain is located right around my bellybutton and right above my hips.  NOTHING higher (unless I have heartburn and I can tell the difference between heartburn pain and other pain).  My mom, dad, sister and brother have all had theirs removed and my pain is nothing like they have stated.

3.      I DO have the nausea, etc. 

4.      The other test done that day revealed I have a foot section in my small intestine that is narrowed due to scarring from my Crohn’s.  Very common and very normal for Crohn’s patients.  After some pretty extensive reading about these strictures, a lot of my symptoms present as this being the main cause of my problems.

5.      Since Monday, I have not had any pain.  Not to indulge TMI, but I had a very different bowel movement that day and I have not had pain since.  I thought before that caffeine made me ill, but I can consume it with no problems now.  Same with red meat.  Hmm.  If it WERE my gallbladder, wouldn’t this pain be constant?  Wouldn’t it be triggered by the same triggers that have plagued me for months? 

Here is my theory.  I have a stricture, this much I know.  I have the symptoms of a stricture causing problems.  Why can’t it be the stricture?  Why can’t the blood in my stool that is presenting over the last few days be representative of that stricture widening back up and finally letting stool pass?  I just don’t buy that it is my gallbladder and I refuse to go under the knife for it until I can be convinced.  I belong to a few Crohn’s support communities and I have read a lot of patients who had their gallbladders removed in the early stages of Crohn’s, before diagnosis.  When the pain persisted after surgery, the doctor finally did the tests for Crohn’s.  I don’t want to be cut open unnecessarily.

Anyway, the whole long reason for my post is that I have been taking this dicyclomine (unbeknownst to my GI dr or my hematologist) for a few weeks.  I am SOO itchy.  My face, neck, upper back, upper chest and scalp all feel like they are crawling with bugs.  That’s how much I itch.  I have been blessed with very good skin, so I highly doubt this is eczema popping up or a reaction to a detergent, shampoo, lotion, etc.  I don’t change up my products enough for that and I KNOW what products bother me.  It isn’t eczema.  I also know it isn’t just dry skin.  I lotion like crazy EVERY DAY and have since I knew what lotion did.  I stopped the medicine on Monday because it is an as needed medicine.  I don’t have pain, so why waste it, right?  Could I be allergic to this medicine?  Would it still bother me even four days later?  The itchiness DID start about that time.

My biggest concern is that I have developed a disorder that my sister has called primary sclerosing cholangitis or PSC.  Long story short (and also because I’m kind of fuzzy on the details), it causes scarring in the liver and leads to build-up of bile in the liver.  She will, more than likely, need a liver transplant in her life due to this disease.  Walter Payton (of ’85 Bears fame) had PSC and, ultimately died of liver failure.  Symptoms of the disease are itchiness, jaundice, fatigue, stool abnormalities that I won’t go into.  Many PSC sufferers also have an IBD.  They are both autoimmune disorders.  I see her suffer from it and I know the worry she has in her head about the future with this disease.  While I wish she didn’t have it, I also don’t want it.

My body has gone off on its own.  It’s doing its own thing at this point and, really, nothing I do is stopping it.  But, I still don’t think I need my gallbladder removed.

(BTW, this whole post was typed in Word and copied/pasted into Blogger so my boss won’t see me blogging.  I’m a sneak.)  J