Thursday, March 27, 2003

The Hospital

My girlfriend drove me to the hospital. She dropped me off in front and I hobbled in. I signed in at the desk and waited to be called back to triage. They soon called me. I gave them the run down. I hurt. I have been in the bathroom non-stop for a good long time and feel like death warmed over.

They grab a wheelchair. Off to the admissions desk. Lots of questions. Lots of forms to sign. Do I have a Living Will? Or something? Ai yi yi. No, but I should. But I am not thinking. I scrawl my name on a bunch of papers. Off to wait to be seen

I am wheeled back to my very own er cubicle. Things start to get hazy at this point. I remember my lips were very chapped. I remember I hurt. I remember a doctor from the GI practice came. I remember a nice Irish nurse came and started my iv. I know they finally gave me painkillers. I know that they collected a urine? stool? sample and that my girlfriend had to stand in the bathroom with me while I did that fun stuff. I also had some sort of x-ray. I don't remember this at all. Next thing I know, I am being admitted. They asked if I wanted a private or semi private room over some weird intercom. I said whatever. I really wanted a private room but figured the insurance company wouldn't have paid. In any case, I got wheeled into a hallway to wait for a room. Up to the room now, I got the bed by the window, the "big" side of the room. IV running, pain meds, steroids. They tell me that evening that I can also have anti anxiety meds and sleeping meds. Uh huh, whatever. The next 10 days pass in a blur. I remember after my first roommate left, I asked for the other side of the room so I didn't have to trip over other people's family members on the way to the bathroom. Then I missed the window and the big side of the room. I only had to trip over my family members.

I am not sure how many room mates I had while I was there 5? 6? I remember a sweet old woman and her husband. She was having a lot of trouble getting the care she needed. Her husband was very sweet to us. I remember one woman told she couldn't have intercourse for some period of time and her and her husband discussing what counted for intercourse after the doctor left.

I remember wanting to work, being frustrated I couldn't. I remember wanting my kids. I don't know what it was about being in the hospital, but I missed my kids more than ever. I wanted to be home. I wanted them to annoy me. I wanted to fix lunches and dinners.

My friends were great though. Lots of long distance calls to me. Flowers, balloons, teddy bears, cards, emails. It was wonderful. I am not sure I made all that much sense. I doubt I did a good job thanking everyone. But it was very, very appreciated and special.

Most special of course was my girlfriend. She knocked herself out. She managed wrangling my children, her children, her job, everything while I was completely out of it. Not only that, she spent so many hours everyday right next to me. She worked at the hospital. She tended our life from the hospital. Then she would go run children around, made sure they had what they needed. Then she would be back. She would stay late into the evening, going home around 11 and working more from home with the faster connection. She would be back though the next day, as soon as she could. She wasn't eating right. She wasn't sleeping. But she was taking good care of me. She asked questions. She looked up meds. She translated for me to the doctor and the other way around. She got permission for me to walk. She got permission for me to go outside. She brought stuff to me. Most of all she held my hand, watched while I dozed, and crawled into the tiny hospital bed with me and held me. She dealt gracefully with staff and people thinking she was my mother, aunt, sister, or friend.

I had more tests in the hospital. A CAT scan, a sigmoidoscopy, blood tests. The CAT scan required another tasty barium cocktail. Most people get to have a different sort of contrast but because of my allergy to nutrasweet, I was unable to drink the first one offered. After the drink, I was taken to the room for the CAT scan. It was cold, but a short, easy test. Lay still. Don't look at the light. Hold your breath when the signal said to do so.

The sigmoidoscopy was like the colonoscopy, except no prep was needed. It seemed to go easier than the colonoscopy in general too.

They showed things were looking better, but that didn't mean I was feeling better. I was eating nothing and still in the bathroom more than 20 times a day.

They had continued the Asacol in the hospital. I had pointed out that I thought it might have something to do with the problems. Finally, one of the docs in the practice decided to pull the Asacol. I started to get better. It was about time. I hurt still. I still was in the bathroom all the time. They had been switching pain meds and steroids so I was down to oral meds only. Then they started 6-MP which was to be my replacement for the Asacol. However, I felt crummier by the day. It was clear that no more good could come from the hospital though. Time to go home.

A fistful of prescriptions, a car full of stuff collected at the hospital from flowers to the scissors and tweezers they used to pull the pic line out, and we were on our way.

Monday, March 17, 2003

The Results

The Results

About a week to ten days after the colonoscopy, I got a call from the nurse at the office. The biopsy showed ulcerative colitis. The doctor wanted to put me on Asacol. I called back after looking it up and asked about my sulfa allergies. They called back and said it was fine. I went to the drugstore to pick it up. NINE huge pills a day. Expensive ones. But if that was what it was going to take to feel better, then I would take them. I was great about taking them on time and regularly. (even though I grumbled) One day in I was sure that they were making me achey. But I was busy with other things, building a garden, a big project at work. Those got blamed for my aching instead...since that was more logical. Two days into this med, I could hardly move. I hurt BAD! I couldn't even cut French Toast. I gave it another day and the achiness seemed better. My bathroom trips didn't seem better. However, this isn't a drug that works instantly.

The Upper GI and Small Bowel Study

Later that week, it was time for the upper GI and small bowel study. No biggy I thought. I had this one done during a hospitalization when I was a child. I remembered the x-ray room being cold and the barium as being no thrill but not overall bad.

I was in for a surprise! I went to the local radiology lab. I filled out a ton of paperwork. (again!) Then I got ushered back to a series of dressing rooms, where I changed out of my clothes and into a hospital gown. It was FREEZING. I sat and read my book on this little bench in the dressing room. There were chairs in the hallway filled with other people waiting as well. After a wait, I was ushered into the radiology room. I got to take something that was like unflavored poprocks on steroids, then quickly followed by some extra thick barium. Then the x-rays started. At some points I could watch on a tv screen. That was pretty interesting. The tipping and turning of the table wasn't all that fun. The tummy prodding wasn't fun. We are already talking about a tummy that was not all that painfree before they started poking it this way and that. The techs were nice and friendly but I had to roll my eyes as they would tell me to get in the bathing suit model position. Lots of clicking. Then out in the hall to wait. In about a half hour...more poking, prodding, positioning and pictures.
Uh-oh...not going through fast enough...(geez, everything has run through me for months, why not this?) so another special barium drink. This one out in the hall. By this point, I am seriously ready to both belch and toss my cookies, which are the number one rules that I was not allowed to do. They then tell me to walk and stand rather than sit to wait. So, I do, in this very crowded, very cold hallway. Another woman is there going through the same test. She is younger, nervous, and really looks scared. We get to talking about the test. She says her doctor things she has Crohn's or UC, but they really aren't sure at all. The woman sitting next to her starts rambling about how she better pray it isn't Crohn's. She starts listing off the horrors of Crohn's. Yikes. I suggest the young woman visit the Crohn's and Colitis board at iVillage. She seemed grateful. Time for more pictures!

These were taken in another room. "That other room is being used currently by patients who are on target for the time" Meaning, I was slow and they weren't going to waste the good room on me if I wasn't ready for the full set of pics. I was though. After a bit more waiting, I got to go back to the other room. I got poked and turned some more and the last set of pictures was done! Yay! I hurridly got dressed and left. I went home. Tossed my cookies. I felt pretty drained but made it through the day.

The weekend following was busy. I had a big project at work to get done. Everyone was working hard, not aided by numerous tech set backs. I worked. I felt pretty bad but I worked. When working it was pretty easy to ignore most of the yuckiness. By Sunday night, I was in rough shape though. I called the doctor on call. He called back. He said to take some imodium, get some sleep and call the doc in the morning. Ok. Can do.

By morning, I was on to feeling REALLY REALLY bad. I called and they said come in at noon and we will work you in or go to the ER. Ok. I can go in at noon. I talked to work. They said whatever worked and they understood. Things got worse. I ended up going to the ER.

Saturday, March 08, 2003

The First Follow Up Visit

The first follow up visit occurred about six weeks after I got out of the hospital. I had not heard a word from the doctor's since I left the hospital. I got there to find that my appointment was with an assistant. This didn't particularly trouble me. However, the lab results from my blood tests had not been received by the office. They had to get those faxed in. No one seemed to have a clear idea of what meds I was taking except for me. The assistant ended up calling in an available doctor. He prescribed Colazol (a medication similar to Asacol), increased my dosage of 6-mp, and gave me a plan to complete the weaning of the Prednisone.(YAY!!!!!) I wasn't thrilled about the Colazol but agreed to give it a shot. He kindly gave me 6 days worth of samples which made me feel some better about trying another pricey medication. I did growl when his answer to my complaints about the side effects of the various medications was "tell everyone to blame the Prednisone."
After the Visit

I started taking the Colazol and the increased dosage of 6-MP. I at first hesitated but figured I might as well. A few days into the Colazol, I realized it was doing what the Asacol did as well...making things worse. I called and tried to discuss this with the doctor but phone tag and all those nice screening methods at their office left me frustrated. I ended up telling a receptionist I was not going to take it any longer. Once I stopped taking it, things returned to the normal, cramping, diarrhea, blood, mucus but not constant and overwhelming. That felt like "normal."