Hello everyone!
I was released today from Rush University Medical Center and am back at home in Rockford, with a colon! After 24 days in the hospital I can't even begin to say how good it feels to not be stuck in bed, attached to an IV. It feels weird even saying that, I basically just spent the last month of my life in a hospital bed. I also can't express enough how much all of your support, thoughts, and prayers helped me through the particularly rough times. I had some days where I felt absolutely miserable, and knowing that I had the support and love of all my family behind me helped me out more than you can even imagine. When you go through nights with a fever in the mid-103s, with one end of you sitting on a toilet, and the other end in a garbage can all at the same time, you need every little bit of prayer that you can get. Never before had I been in so much physical (and perhaps emotional at the same time) pain that I was brought to tears. On some of the nights my tolerance threshold was met and I just couldn't take it anymore. It was those times when your undying support meant a great deal to me. It also helps when you have the world's greatest woman for a mother who is at your side doing whatever it is you need her to do at all times. She was absolutely amazing throughout the whole process. No matter how bored she got, and I know she was severely, severely bored, enough so that she was almost hospitalized with a case of boredom, she was always by my side. Her unfaltering support was incredible, she was there for everything. But, my mother knows that I love her and appreciate everything that she does for me. It also doesn't hurt to have Saint Anthony's best (and self-proclaimed prettiest) nurse as an aunt who was also there non-stop with her support.
I know you guys already know a lot of what I went through, and what I'll be dealing with now, but I'll give you an account straight from the horse's mouth. When I was transferred to Rush late Monday night/early Tuesday morning I wasn't in the best of shape. I was feeling pretty miserable with a high fever, excessive diarrhea, and vomiting. The works as I like to call it. Tuesday morning when the surgeon came in to evaluate me he immediately thought that surgery to remove my colon was necessary. He wanted to perform the operation as soon as that afternoon, and I even had a time scheduled to have the surgery take place. That's how close I was to having my entire colon completely removed. But he said that he would have the GI team look at me first and get their opinion on the situation. When the GI came in they wanted to do everything they could to save my colon for the time being, and quite frankly so did I. I wasn't too keen on the idea of having the surgery, to be honest the prospect of it scares me immensely. During the initial visit with the GI team they said that in all likelihood it's probable that I will eventually have to have my colon removed, but they thought if they could get it so I can get a few more years out of it that it was worth the risk of trying to treat it, and I agreed with them. I at least want to try to keep my colon until I'm married. I figure it's hard enough to find a girl the way I am, and it would be darn near impossible to find one who thinks an ileostomy bag is attractive. So now I figure I better hurry up and find a woman in the next couple of years before time runs out. I figure I have to be much less picky and end up "settling" for a girl, rather than finding the woman of my dreams. But anyways, back to the GI doctor's; we agreed to try treating me with the drug Cyclosporine. (The reason they didn't offer me this drug in Rockford is because if it doesn't work they want you in a place where you can immediately go into surgery). I was skeptical about trying it, and to be honest, I really didn't have much hope for it working. At this point I more or less thought that surgery was inevitable, but I was willing to try anything. I however had my spirits lifted at the end of the meeting when the head doctor came over to me, felt my belly for a little bit, and looked me straight in the eye and said, "I think you're going to be ok." To which I replied, "Really? You think this will work?" He said, "Yeah, I do. I really do. I think you're going to be alright." Hearing those words meant the world to me and I knew that I had to give this new treatment a chance.
They immediately put me on the meds, along with a nutritional IV and took away all my food and drink. This was especially tough as I was starving as it was, and every 10 seconds on TV there was a commercial for a different type of food that made me have incredible cravings for just about anything. I would see commercials for foods that I knew I didn't like at all, but yet at that moment that was the only thing in the world that I wanted. But the nutritional IV was necessary as I had lost a tremendous amount of weight. I usually idle right around 180 lbs. and on the night I checked into Rush I was down to 147. They said that the medicine would work very fast, and in 3-5 days we would know whether or not it was going to work at all. Work fast it did. I started feeling much better in about 2 days. My stomach pain was receding, my bathroom visits were starting to become less and less frequent. So, at this point I was highly excited that the medicine was starting to work, but I was also very skeptical because I had had good days in the past, only to go downhill once again the next day. So, I was looking to put together a string of good days together. When a next day came by and I had even less pain, and even fewer bowel moments I started to get more and more hopeful that the medicine was starting to work. Come the 4th day of treatment I was virtually pain free in my belly and went about 10 hours in between bathroom visits. This was HUGE for me. 10 hours between bathroom breaks for a guy who was exploding at the rate of about once every 30 minutes was absolutely amazing! The doctors were very optimistic at this point and wanted me to finish out the full 5 days on the Cyclosporine IV before they sent me home. Then the next day came and I still felt great and so they arranged for me to be sent home! I have to go back in for a follow up next week to Chicago, and hopefully by then everything with still be going smoothly.
I still am very, very leery about getting onto too much of a high because I am in constant fear of another outbreak. I think it's going to be in the back of my mind, heck the front of my mind, for a very long time. Every time I eat something now I wonder if this is going to set in motion a flare up. I'm also worried that now that I'm off the IVs that I will go back to a flare up. It's just a lot to take in right now, and is all still really very scary to me. I just hope I never have to feel like I did again. I think it does help now though that I know what to look for. However, every little movement, or change in feeling in my belly now I get fearful that it's an attack. Physically, I'm still very weak at the moment and have a hard time standing up for long periods of time. My mother and I stopped at McDonald's on the ride home from the hospital and I needed to return to the car because it was too hard for me to stand in line. Once we got home, I tried going up the stairs and after about 2 steps I was forced to fall to all fours and crawl up the stairs because I was too weak to walk up them. But, I think that's just a matter of me beginning to eat again and getting my strength back. I lost so much of the very little muscle that I had to begin with in the hospital. One thing is for sure though, I'm certainly glad to be out of the hospital. My butt has been invaded more times than I'd like to admit. I'm still trying to find where it is in all the paperwork that I checked the box saying, "Yes, I'd like the Elton John treatment." Some advice for you parents out there if you have trouble controlling your kids, instead of spanking them, try giving them an enema, I guarantee you that after one enema, the threat alone of another one will leave your child on the fast track to sainthood.
Sorry if I took too much of your day with the length of this e-mail, but I just wanted to give everyone an update straight from the source about how I was doing. Right now, I'm feeling good, and feeling good about the direction I'm heading. Again, I can not even begin to express how much you all mean to me, and how truly appreciative I am for all the concern that everyone showed. Thank you for all your thoughts, prayers, visits, phone calls, everything. From the bottom of my heart I thank you all. I know that without your support I'd still be in the hospital right now.
I can't wait to see everyone at Christmas! I hope all is well with everybody, and everyone is in GREAT HEALTH!!! I love you all and hope the best for each of you! Thanks for all the love and support!
With much, much, much love,
T-Bone