Is it Crohn's or NOT?

Posted By Tara on July 28, 1998 at 21:57:01:







Four years ago I was diagnosed with Crohn's disease affecting the terminal ileum.  I was treated with 5-ASA drugs and Prednisone.  Neither of those drugs seemed to work (I had a reaction to the 5-ASA) and therefore we worked ourselves up the medication ladder.  I was hospitalized twice over the next couple of years and finally my GI put me onto 6-MP which I had a reaction to also and landed back in the hospital awaiting bowel surgery.  I had a partial right colectomy with anastamosis.
Three weeks following surgery, all my symptoms returned (diarrhea 7-10x a day, nausea, vomitting, fevers, extreme right lower abd. pain, loss of appetite etc)  I had a colonoscope that was performed which showed that the crohn's had spread throughout my intestines.  I was started on Prednisone and 5-ASA drugs again without any relief from the symptoms.  I was then put onto Methotrexate (pill form, once a week).  Things didn't dramatically improve at first but I wasn't getting any worse and was able to come down off my Prednisone from 50mg to 20mg.  Then we noticed that I had drug-induced hepatitis and the Methotrexate was stopped.
I was hospitalized and treated with enteral Ng tube feedings and responded relatively well to them.  When x-rays and another colonoscope was performed, it was noted that there was barely any crohn's involvement but I was still having the symptoms I had stated above.
I had various other tests run and it was found out that I only was absorbing half of what I should be and that my white cell count was elevated (the values I don't know)but nothing else seemed to be abnormal.
I stayed on an enteral oral diet for three months along with Prednisone, Stemitol, and Ranitidine with no real improvement and was hospitalized 5 times in the next three months.
Things finally settled down to the point where I was managing them at home but with no real answers or plans for treatment.  Just recently things have gotten worse again.  I am having loose watery diarrhea 10-20x a day, throwing up once a day, nausea, vomitting, extreme abd pain etc.  I had a entercolysis done while in the hospital in January and the only thing that could be seen was moderate adhesions from previous surgery and that there was crohn's involvement at the site of anastomosis, but the involvement was moderate.
I am currently taking Prednisone, Ranitidine, Cisipride, Codiene Phosphate and some other over the counter perscriptions.  If this is not due to having Crohn's disease then what could it be?  My doctors are puzzled and frustrated that I am not responding to any of the drugs that they try and don't understand why I am not losing excessive amounts of weight.  I have lost 40 pounds since last November and still am a bit overweight.  I am 24 years old and have one child and haven't travelled anywhere.
Also how can there be extensive crohn's involvement on one x-ray dipicting it all through my intestine and then it only being at the site of anastomosis on the same x-ray a couple of months later?  I would appreciate it if you could shed some light on the whole thing for me.
Thank you
Tara