A New-Found Independence

     I guess I would have to say that the whole ordeal began back in April of 1995, when my parents went to go see Dr. Barry Shandling at a conference at Hugh MacMillan Rehabilitation Centre in North York. It was then that he explained this new procedure and how it would help people to be more independent in taking care of themselves. That night when my parents came home, they told me about what they had heard at the conference in terms of what Dr. Shandling said about this new procedure. At first, I was skeptical and thought of it as "just another surgery". Though, as time went on, they coaxed me into it, and we decided to make an appointment with Dr. Shandling for the beginning of June. This worked out well, because as I recall, I had an appointment for another test of some sort and it just fit perfectly with our schedule. It was then that we talked to Dr. Shandling. He drew out the procedure on the white paper that covers the examining room table. (We still have the drawing, I think.) We met Helen Richards at that time, too. She went through some more details about the procedure and my parents and I talked with her for a few minutes. It was then that I decided that it would be a good idea if I had the procedure done. So, I was admitted to Sick Kids on August 14, 1995.

     This is the part that I will look back on and probably laugh at whenever I think about it, but let me assure you, I certainly did NOT find it amusing when I was actually undergoing the whole ordeal. When we arrived at the hospital, I had already been on a liquid diet for 2 days prior to being admitted. So, I did not think anything else that was to uncomfortable was going to occur. BOY, WAS I WRONG!!!!

     I will ALWAYS remember that PEG-LYTE that I had to drink for what seemed like an eternity!!! I thought, "Okay, one box is not going to kill me, I might as well just get this over with." Meanwhile, three, YES COUNT ‘EM –THREE BOXES LATER, I was done. This was, by the way, about one or two o’clock in the morning. I was in the bathtub and into bed within a half hour. I was sure that the worst was over then. WRONG, AGAIN!!

     The next day the nurse from the I.V. team came to insert my I.V. for "pre-op" antibiotics. They could not find a vein ANYWHERE. They jabbed me at least four times and, boy was that painful. After a half hour, they finally found a vein and everything went smoothly from that point onwards. During this whole procedure, Helen Richards popped in to say hello and to see how I was doing. We joked around, somewhat at the I.V. nurse’s expense, because she kept forgetting that I had an allergy to latex (she, at first used latex gloves) and also, an allergy to Betadine (she used that to disinfect the area). Helen said that she would make sure that the team downstairs would do that just for laughs. Well, we all just broke up in laughter with that comment. From that point on, I was thoroughly convinced that the worst DEFINITELY was over. Man, I do not know why I kept thinking this because, ONCE AGAIN..WRONG!!

     The time that the procedure was scheduled for was slowly drawing nearer. I was growing more and more nervous with each passing second. Finally, the man from the patient transport team came to take me downstairs to the Diagnostic Imaging Department where the procedure was going to be done. I was expecting to get in there right away, but instead, they were a little bit behind and I waited for about 30 minutes. This allowed my anxiety level to reach new heights and made me most uncomfortable. Then, Dr. Chait came out and introduced himself. He seemed like a really cool guy. He could sense that I was nervous and he asked what was wrong. I then told him that my tolerance for pain was…well…quite frankly…NIL!!! We laughed. Then he told me that they could give me some stuff that would not make me go to sleep, but would make me unconcerned with what they were doing to me. Then they proceeded to take me into the room. It was the scariest looking room that I have ever seen. All of these millions of different machines that you have no idea what they would do. Luckily, they not do anything because they did not use most of them. The thing that I thought was really neat was they they used this camera so they could see where the tube was going in and, although I was half drugged, I was thoroughly interested with this camera. I found it amazing that I could actually see what they were doing inside me without actually opening me up. The only thing I really felt was the needle going into my cecum to freeze the area and that was it. Wow, Valium REALLY, REALLY WORKS, EH?? The whole thing took about 20 minutes and before I could even begin to contemplate where I was, Dr. Chait said that they were finished. I could not believe it!! Someone had told me previously that it took pretty close to an hour and then THEY did it in 20 minutes?!? Unbelievable!!! They took me back to my room where my mother was waiting for me. At the time, still drugged enough not to remember my own name, my mother asked how I was. I just smiled and gave her the "thumbs-up" sign. I was ABSOLUTELY CERTAIN the worst was LONG behind us at that point. NO!! NOT AGAIN!! Why do I keep thinking that??? Unreal!!!

     I had the most severe gas pains you could ever image. I was starting to get the feeling that the final goal was not worth going through all this crap (no pun intended!!) I expected a little bit of gas. Anaesthetic of all types does that to me. However, I did not think it would be this bad. I remember one of the night, I could not sleep a wing!! This in turn meant that my mother could not sleep a wink!! The next day, Dr. Shandling came into my room and suggested that we do a Fleet enema. Remembering what they were like during my early childhood days, I QUICKLY (I CANNOT emphasize that word enough!!) decided against that. However, you try to change a doctor’s mind, it’s virtually impossible. So, nevertheless about 10 minutes later, I was sitting on top of a bed pan watching TV!!! This did not help a bit. In fact, I was now more uncomfortable than EVER!!! I felt so bloated it was NOT FUNNY!!!

     That night, I was discharged to go home. It took me almost ten minutes just to get in the car. When we got home, we did one of our "old" enema procedures and I felt SO much better!! The next day, we started on my medication, Flaggyl (hope I spelled that right) to keep intestinal infection away. I was on that for five days after I returned home. When we started the new irrigations through the "C-tube" I simply could NOT believe the vast improvement!! It was like going from a 40% success rate to a 100% success rate. Just unbelievable!!!

     Two weeks following the procedure, I was involved with a baseball tournament and there were no side effects from the procedure at all. That just foes to show you how quick the recovery time is for this new procedure. I also understand that they are doing this procedure in England as well, but they us a portion of the appendix for their method which means a longer recovery time and a more lengthy operation. I am REALLY glad that Dr. Shandling and Dr. Chait discovered this NEW way of doing this which minimizes the amount of discomfort that the patient had to go through while in hospital.

     About one month after having the tube in, I went back and had a larger tube put in. This is done as an "out-patient" visit and requires no admittance to the hospital. However, let me tell you, this was not exactly fun either. I had very little freezing for this and it was pretty uncomfortable, but it only took about two minutes (no exaggeration, they work FAST in that department!!!). So, I could not do my usual complaining for very long!!! Another couple of weeks after that, I went in to have a button inserted in place of the tube (again, this is done on an "out-patient" basis). This is done because it appears flat against the skin, therefore it is less noticeable and has less of a risk of getting caught on things. Also, with the button, things go even MORE smoothly than with the tube.

     In conclusion, I would like to say something to all of the patients out there who are considering having this done. I am not going to lie to you. This procedure can be uncomfortable depending on your tolerance for pain, but I ASSURE YOU, do NOT let the little bit of pain deter you from becoming more independent. Because I have to tell you, IT WORKS!!! I was (and still am) amazed how a little hole the size of your baby fingernail, and a little bit of tubing can change your whole life. To Dr. Chait, Dr. Shandling and Helen Richards, and to all of their staff, I want to extend a sincere thank you. There are not enough words to express how grateful I am, because you have INDEED given me "a new-found independence".