The beginning of my sophomore year was rough. I was in school for a few weeks before I had my first major flare-up and with the flare-up came pain and a lot of rushing to the bathroom. I don’t tend to have a big issue with pain or cramps. The only times I appear to really take notice is when things get really bad and I’m on the verge of hospitalization. I spent about a week at home, staying in constant contact with my doctor, and at the end of the week I was going nearly every 30 minutes, my Asacol pills were passing through whole, and I was throwing up. My intestines were so swollen from inflammation that very little was getting through and every time I tried to eat it had no where to go but back up. I was about six feet tall and weighed only 120 pounds. I was pretty thin before the flare-up, but not being able to keep anything down was making my body look like those poor Ethiopian kids without the distended stomachs. My doctor left the decision of staying in the hospital up to me. Seeing as how things just seemed to get worse as each day passed I thought it was the best thing to do. When I made the decision though, I was told I’d be there for a week at the most. I was in there for three weeks, maybe a month. I say a month, my parents said three weeks, but this was all much later after I had been released and dates were confused on both sides.
Since that first stay, each time I was in the hospital after that I pushed to get out as fast as I could. Living in a hospital is pretty depressing. You’re sleeping in a strange place that smells like disinfectant, I was sharing my room with little kids since I was in the pediatrics department (not that adults are much better), and I was constantly being poked and prodded to see how I was doing. Every four or six hours I had my blood drawn and sent to the lab. It’s hard to try and rest and recuperate when you can’t feel comfortable with your surroundings and you’re being woken up to have a needle jabbed into your arm. I had to have a number of IVs put in after my veins started to give up after a few days and each site would become painful. (I can still some scars from all the different IVs I’ve had and blood draws over the years.) Then dealing with little kids crying in the bed next to you for one reason or another just gets on your nerves.
While in the hospital I was put on a complete bowel rest. I started taking Imuran along with the Asacol and was given the option to start Prednisone, but with all the side effects I was told of I declined and waited to see what would happen. I was given IV fluids and lipids and the only time I was able to drink anything was when I had to take my pills three times a day. I got a look at the hospital food the first day I was there and I didn’t feel I was missing much. Besides, I had no appetite so it just made it all the easier for a while.
After a few weeks things seemed like they were getting better, it was hard to tell since nothing was going in but the bleeding appeared to slow down, so my doctor let me eat for a day. At that point I didn’t care what I was eating I was just glad to chew on anything. The next day though, it looked like things weren’t doing as well as everyone had hoped and I was off of the food again, but this time I was on a liquid diet. Broth, Jell-O and a popsicle for breakfast, lunch, and dinner. The doctor thought it would be better for my guts to have something to work on other than its self. It was also decided upon that if I was going to see any improvement I had to start on IV steroids. Things were just taking much too long and if there were any signs of improvement, they were so minute that it would have taken many months before I saw any serious improvement if any at all.
After three weeks, maybe a month as I said earlier, I was sent home. I really can’t recall if it was because I was showing signs of improvement or my parents and I were able to convince the doctor that I might actually do better if I was back at home. That entire time I was in the hospital I was so depressed with the situation and just going through this ordeal that the only times I left my room was for more tests and I was dragged outside once by some family members. I just wanted to rot in that uncomfortable bed with the plastic sheets. I showered once or twice that entire time too. I just really did not care about my appearance or what happened at that point. There were many nights where I would just cry and ask myself, “How and why did this all happen to me?”
But I got through my first hospitalization and was sent home on IV fluids and lipids, still no food but the liquid diet was still in effect. I had a pic-line IV put in to the major vein at the bend of my left arm, they are more of a long-term IV. But just like everything else I had dealt with in trying to treat this disease, there was a problem with it. The IV was supposed to be threaded up through the vein and to get as close to my heart as possible so it was easier for the thick lipids to be pumped to the rest of my body. It only made it up to my armpit though. When I was sent home I was supplied with an IV pump that I would be connected to overnight so I’d be free to roam about during the day without. The first night I tried the pump it kept beeping all night long. Apparently the tubing of the IV was getting kinked up around my armpit and the lipids were not passing through. The only way I could keep the alarm on the pump from going off was to sleep flat on my back with my arm out to my side to keep the vein as open as possible. This only lasted one night though. The next day I was on the phone with my doctor relaying the story of the previous night and I was allowed to switch to an “elemental diet.” The elemental diet consists of drinking nine cans of a drink that was very similar to Ensure. I had tried it in the hospital and found it very foul tasting. They even gave me some flavor packets to try and sweeten it up, but the after taste was what really got to me. It was similar to the taste you get when you leave a vitamin sitting on your tongue for too long. That’s basically what the drink was anyway, a bunch of vitamins, minerals, and nutrients in an easy-to-digest form. After getting used to this new routine with the elemental diet, taking care of my IV since I was still on IV steroids, and getting my strength back from laying in a bed for nearly a month I began to make the transition back into school.
These are my experiences and although you may have similar ones, do not expect this all to happen to you or your loved one. Each case is different and requires the attention of a specialist, but I'll be happy to answer questions about myself or just talk.