Posted 5/8/2012 8:17 AM (GMT 0)
I went in to urgent care for extreme gut pain on December 29, 2011. After a battery of tests (full blood panel, ultra sound, CT scan, and a few X-rays) and an over night stay, they decided that I need to be admitted to the hospital. The first GI doctor that I had was the one that said I needed a colonoscopy because he was sure it was Crohn's. The doctor that actually did the colonoscopy is the doctor I have now (the other one retired during my hospital stay). When he came to tell me that it was Crohn's, he reassured me that I had a mild case. He said that he would put me on Prednisone for a couple of weeks to a full month, and then he would start me on Imuran and I would be in remission in know time.
Fast forward to after I left the hospital. I was home for a week and the intense pain was now making me unable to go in for work. He ordered my Prednisone at a higher level and gave me Oxycodone. After a couple of more weeks with no improvement, I ended up going back into urgent care. The on call GI doctor told the urgent care doctor to put me on 120mg IV Prednisone, keep me over night and then to send me home. By this time it is January 27 or so.
I was only home for one week this time. I went back into urgent care, and this time my doctor was the on call GI doctor. He told them to admit me to the hospital. From there, he had them keep me for a week at the 120mg IV Prednisone. He came into see me and told me that my Crohn's seemed to be more severe than he thought it was and he wanted me to start Remicade right away. They did the first treatment and then released me from the hospital a couple of days later. I set up the appointment for the next treatment two weeks later. After just a week I was on the phone with my GI telling him that I was still in a lot of pain and that it seemed to be getting worse. He asked how bad and I said that after taking the Oxycodone my pain would go from a 5 (1-10 scale) to a 2, but that it was teetering on a 3. He said that he was going on vacation for a week the next day, and to go into urgent care if it gets to an 8 on the medication. By this point when I peed the pain would skyrocket to an 8, but subside after a few hours.
Just a couple days later it was at an 8 on the medication and we went into urgent care. The urgent care doctor did a repeat of the 120 mg IV Prednisone and gave me dilaudid (by this point I've had so much that they skipped the .5 dose and started at a full dose). She kept me for a couple of hours and then sent me home. I asked if she would do a CT scan to see if something was wrong, but she refused.
I tried making it through his vacation, but I woke up from a nap one night with the pain at a 10. I could barely breathe I hurt so much. Walking was almost impossible. My husband was able to get me to urgent care, he practically carried me to the car and then got a wheel chair when we got there.They took me back, gave me my usual pain medication and anti-nausea cocktail, and then contacted the on call GI doctor. He wanted a fresh idea of how I was doing, and ordered a CT scan. The scan showed what he described as a "small abscess". He had them admit me to the hospital, with orders for IV antibiotics and NPO (nothing by mouth). Then we waited for two days for my GI to get back from his vacation and sent him my way. He got back and ordered another CT scan. In those three days the CT diagnosis changed from one small abscess to three averaged sized abscesses. Both of the GI doctors were telling me to just stay on the antibiotics and wait one more week to get the next Remicade treatment. I don't remember whether it was the urgent care doctor or the hospital doctor, but one of them had mentioned surgery as an option for the abscesses before I was in my hospital room. At this point I asked to have a consult with the surgeon. The surgeon came in and talked to me after reading my file (before looking at the CT scan) and he suggested that I do the surgery. My husband and I talked it over, and felt very strongly that I should get the surgery. The next day the surgeon came back after looking at my CT scan and he said that he noticed MORE than three abscesses and the I needed to do the surgery. At this point I had started losing faith in my GI. I agreed to the surgery.
I had to wait four days to get in for the surgery. It was going to be a 2 hour or so surgery. I woke up 8 hours after being put down I finally woke up. I was told that the surgery had taken a total of 5 hours.
When I woke up the next morning my sister-in-law told me the full extent of the damage that they found. I had a total of 18 abscesses spread through my intestines, on my reproductive organs, and on my colon. They removed part of my colon, fixed a fissure that had been created between my intestine and bladder. I also had a temporary ileostomy and three....I forget what they are called...they were on three infected areas and collecting infected fluid from them...I want to say JP drains.....anyway, I had three of them. And they had removed the Crohn's infected section of my intestines. Then she dropped a frightening bombshell: those three infected areas were nearly septic and if I had listened to the GI and waited and done the next Remicade treatment, I would have died.
Needless to say, I had lost most faith in my GI. I had my first appointment with him since leaving the hospital, and he wanted to set me up on Remicade and Imuran as maintenance drugs. I asked him the one question that had been lingering on my mind: did Remicade cause the abscesses. After a few moments of silence he told me it was a possibility. He wants to start me on both of those drugs BEFORE I go in for the ileostomy reversal surgery. So, he wants to kill my immune system before I go in for surgery.
I need opinions! I have a horrible feeling in my gut about going on Remicade, Imuran, or Humira before my surgery, if at all. It's the same feeling I had about doing the Remicade treatment instead of surgery. My sister-in-law is very against the idea of me going on them at all. Please tell me what your experiences have taught you about these things or just your opinion based on what I have shared. Thank you in advance.