This is very long but I had to get this off my mind and vent.
The last month has been very bad for me. It started with a bad cold and I was off work for 2 days. It then developed into a sore throat that spread into my ear and I was off work sick again for 2 days a week later including on my birthday. November 1st was my 50th birthday, something I’m not happy about. My family doctor gave me a 10 day course of antibiotics for an ear infection. I couldn’t believe how painful it was. The only way I could tolerate it was with Tylenol 3’s but they only helped for 2 hours max at a time. To make things worse, a dental crown I had installed last spring on one of my front teeth broke off. I got in to see my dentist the following day and he was totally surprised to see what happened. He agreed to fix it at no cost to me. My dental insurance will only replace it after 5 years. He wanted to start work on it right away but because of my soar throat and ear infection I decided it wasn’t a good idea so I made another appointment 2 weeks later. Last Tuesday I went back and the dentist removed the broken crown, took an impression and installed a temporary crown. He sent the impression to the lab and the permanent crown should be ready in a week or two. Saturday the temporary crown broke while I was eating a sandwich, I just can’t win.
The antibiotics helped with my ear infection but a few days after I finished them it started to come back. On Wednesday I called my family doctor and the earliest I could see him was 2:00 pm that day. The problem was that I was having a flexible sigmoidoscopy for my Abatacept trial Thursday afternoon. I was planning to start my prep at 1:00 pm Wednesday. I was using Pico Salex and I need to take 2 glasses 6 to 8 hours apart starting 24 hours before the scope. Last time I took it the BMs started about one hour after the first glass so I decided to start it at 1:40 pm and rush to the doctor’s office before the effects would start, a risk I was willing to take because I wanted to stop the ear infection as soon as possible and I wouldn’t have time the next day. I got to the doctor at 1:55 and he was quite busy. I waited almost one hour before I saw him and the effects of the prep hadn’t started yet. He looked in my ear and said it wasn’t the same as the previous infection. He said my ear canal was scratched, bleeding and inflamed. I don’t know how that could have happen. Maybe I stuck my finger in there? He gave me a prescription for ear drops. I immediately went home and as I drove into my driveway I had the first urge to go from the prep. I barely made it to the washroom on time, 1 hour and 35 minutes after taking the prep.
My wife took the prescription for ear drops to the pharmacist and she was told the product was discontinued and they had to contact my doctor the next day. Meanwhile my ear pain is getting worse and I had no way of getting the ear drops until Friday. Thursday morning arrived and I was feeling like $hit. My ear ache was as bad as ever, I had a bad headache and my stomach was completely empty. All I wanted to do was get the scope over with and get something to eat. The scope was scheduled for 12:30 pm and I was to be at the hospital at 11:00 am.
I arrived on time and met with the study coordinator. I gave her a stool sample I obtain before the prep, a urine sample and she took some blood from me for testing. She gave me $20 for this visit and paid me for the prep. I then went to admitting and then to the endoscopic room. After filling out a few forms, changing and having my vital signs taken I ended up lying on a stretcher and ready to go at about 12 noon. Several nurses wanted to hook up an IV line for sedation but I insisted on no sedation because it was only a flexible sig. They were running a little late and wheeled me into the procedure room at about 1:00 pm. I really didn’t notice the wait because I fell asleep for most of it.
The nurse took my vitals and got me ready for the scope. Again she wanted to hook up an IV and give me a sedative which I refused. The study doctor came in and we had a talk about my symptoms for the last few weeks. I have been having 6 to 9 bloody, urgent BMs per day. I have noticed no improvement from the treatments at all. He performed a quick physical exam on me then did the scope. My colon looked just as much inflamed as the last scope. The doctor saw no improvement. He accidentally printed out some pictures of my colon. He said he normally stores them digitally and retrieves them from his office. I asked him if he ever gives his patients photos from the scope and he said no but because he has extras he could give me one. In all the dozen or more scopes I had, this is the first time I received a photo. My wife and friends at work were freaked out by it but it seems fine with me. I have seen a lot on the internet. You can really see the inflammation. If you would like to see it, go to:
I had my last scope 2 months ago just before my first Abatacept study treatment. I have had 3 treatments with my 4th one shortly after this scope. This will be the last treatment of the induction period and I will receive another scope in a month. Based on my next scope and symptoms at the time I will either enter the maintenance period if I show significant improvement or into the open label period if I show little or no improvement. I would then receive the real medication with no chance to receive the placebo. My first treatment of the next period will be just after my next scope on the same day. I asked the study doctor why I have to go through so many scopes and other test. I have to give blood, urine and stool samples at each visit. There are far more tests done than at my last study over a year ago. The doctor said that the FDA is getting much more strict with studies and wants to rely more on actual test results rather then symptoms. With all the scopes they want to see how fast inflammation changes if at all.
The study nurse came to the endoscopic room just as I was ready to leave to tell me to meet her in the infusion room in 15 minutes. She suggested I get something to eat and bring it to the infusion room. I finally left the endoscopic room at 1:30 pm and I was starved. I got a Subway sandwich and drink and brought it to the infusion room. The study nurse was nowhere in sight so I sat in the hallway and ate my lunch. She finally showed up at 2:00 pm. The infusion room was full, mostly Remicade patients, so I sat in the hallway and received my treatment right there. The nurse took my vitals and hooked up an IV line. She then left to pickup the medication. It is mixed in the hospital pharmacy and the study nurses and doctor don’t know if I am getting the placebo or not. She came back at about 2:20 pm and started the treatment immediately. The infusion only took a half hour. After measuring my vitals I left shortly after 3:00 pm.
I went into work Friday, the next day and my ear ache was getting worse. I almost considered leaving early because of it but I stuck it out. I finally picked up the prescription for antibiotic/steroid ear drops just after work. I started using it that night. I was scheduled to work overtime Saturday but my ear was still very sore and I woke up at 2:00 am with severe ear pain. I took another Tylenol 3 and went back to bed. I didn’t go in for overtime in the morning. Saturday afternoon I started to feel a little better then suddenly my 5 year old daughter was complaining about an ear ache. She was crying. She had a cold and did not go to school for a few days. It now turned into an ear infection. Knowing exactly how she felt my wife and I took her to a 7 day walk-in clinic at 4:00 pm. Our family doctor is not available on weekends. Unfortunately it had just closed. We went back home and I searched on the internet for another clinic that may be open. I found an after hours clinic at a local hospital that was open weekends till 9:30 pm. We got there at 5:30 pm and had to wait till almost 7:00 pm to see a doctor. Sure enough it was an ear infection and the doctor prescribed oral antibiotics for my daughter. We picked it up at the hospital pharmacy and started them shortly after we got home. The clinic doctor told us to take our daughter to see our family doctor in 4 or 5 days. I already have a follow up appointment for my ear infection on Wednesday so I will call his office Monday morning and see if I can get my daughter in at the same time.
Are these bad things ever going to stop? The next month has to be better.
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision