I was probably a reasonably normal kid growing up on Staten Island in the forties and fifties. There weren’t as many kids then but we were pretty healthy and active. Other than the normal tonsillitis, appendicitis and poison ivy, no significant health traumas are recalled. After high school, I went away to college. During the first year I progressed from mild but frequent diarrhea to full blown colitis. Of course back then doctors didn’t know much about colitis. Generally they attributed it to nerves, stress, emotional instability and other non-specific origins other than medical. This resulted in doctors treating symptoms rather than medical causes because they didn’t really think they existed. Most sessions in the doctors offices consisted of lectures about how I needed to stop worrying about things, get my emotions in order, consider seeing a psychologist, stop eating spicy foods or milk products, etc. Anyone who knows me will attest to the fact that I’m pretty laid back and don’t let too many things bother me. I actually did go to a psychiatrist and decided that he could probably mess up my head to match my lower abdominal disarray. Most of the doctors I saw, being unable, or unwilling, to ascribe my condition to a medical cause, exhibited little sympathy or understanding of the difficulties created by the disease (ulcerative colitis is, and always has been, a disease) and didn’t relate to the plight of a colitis sufferer. What most doctors ignored was the fact that spending hours a day in the bathroom, watching yourself bleed continuously, being too sick to function much of the time and having continuous embarrassing accidents can have an effect on one’s emotional outlook. When you know you can’t go more than minutes without a visit to a bathroom your nerves get over-worked. Life evolves around constant eye contact with a vacant toilet.

During the next ten years I saw too many doctors and specialists to count. If I had one Sigmoidoscopy, I must have had a hundred. (This Dr. Sigmoid guy must have been into medieval torture techniques). If I never taste barium again it will be too soon. One of my pet peeves was the radiology technician who would insert about a half a gallon of barium into my rectum, then say hold it (if I could do that I wouldn’t be there). After exhausting his medical knowledge, and that of all his specialist friends, our family doctor pretty much gave up. He explained that no one knew what caused colitis or how to cure it, so I should learn to live with it (a rather simplistic approach). During these years my parents took me anywhere they heard a rumor of a doctor with more luck treating colitis. In addition to me getting sicker and sicker they got more and more frustrated. By the time I was twenty, my diagnosis had gone from colitis to acute, universal, ulcerative colitis. It was not uncommon to go to the bathroom thirty times a day. Included with this distress were passing lots of red blood, abdominal cramps and pain that would double me over, weakness so bad that I could hardly stand up and all the other symptoms we colitis and Crohns people learn to live with. The result was that I couldn’t sit in a class for forty minutes without running to a bathroom, so college just wasn’t going to coexist with my physical condition and I dropped out after two years of trying to convince myself that I could do it.

Interestingly, at this time the government decided that since I could walk and chew gum I should go into the army and I passed the pre-induction physical. A little sanity surfaced when I reported for service and couldn’t stand in line more than ten minutes without heading for a bathroom. They decided to pass on me and sent me home with a 4F. Then I went to work. I worked in Manhattan and commuted daily on the ferry, getting off the train or bus numerous times because I couldn’t wait to get to the terminal. You have to leave real early if you keep getting off before your stop. I could tell you where every bathroom was from the southern tip of Staten Island to midtown Manhattan. I could even rate them on cleanliness, whether they were open or locked and who had the key.  I will tell you that the ferry and the subway probably were about even for the absolute worst bathrooms in New York, maybe the country. On the ferries, you also had to contend with the perverts patrolling the doorless stalls.

Twenty plus years later, having experienced cycles of remission and severe distress, a routine colonoscopy produced signs of precancerous conditions. This pretty much forces some tough decisions. My brother-in-law, a surgeon, explained rather briefly that if I planned on living much longer the only real choice was to remove the offending organs, which happen to be everything after the small intestine. I never realized that I didn’t need all these “spare” parts like the large intestine, rectum, ileum, etc. That surgery was not a pleasant experience but the result was dramatic. Most people would question how major traumatic surgery resulting in wearing an external appliance with the care and maintenance associated with it is considered a good thing. To understand this you need to really understand what the life of a person with colitis is like. This surgery gave me back control of my life. I was no longer a prisoner of the disease. I could come and go at will and not have to extensively plan my itineraries around bathroom availability. What a relief.

I learned after the surgery that around the time I was twenty-one a surgeon had briefly discussed colostomy with my parents but dismissed it without discussion because of my age. Had I known of this option, and taken it, I would have avoided many years of anxiety, pain and suffering. Just because a person is young doesn’t mean that quality of life isn’t important. Although my wife’s life was very difficult during twenty-five years of my physical limitations, she was always caring, supportive and understanding of my feelings. This was a tremendous factor in being able to deal with my problems. Without this support, I can image someone having a different outlook. My quality of life dramatically improved after recovering from the surgery. My attitude was more realistic. When people would try to tell me how terrible it was that I had all these problems, I would take stock of life. I could see, hear, feel, walk, talk and, finally, eat almost anything that didn’t move. To all outward appearances, I looked normal – whatever that is. My bathroom visits were at my option and usually quick. Not only could I eat anything I wanted, but if I had indigestion or heartburn it only lasted an hour and the offending food was history. How much better could life get. One absolute necessity is to get in touch with food – pre-eaten and post-processed. I soon came to be comfortable with the fact that what came out into my pouch was just the same food I had put into my mouth an hour ago. Why should I feel that it was dirty or in some way untouchable. Once I got over this hurdle, I was able to tell what was going on inside my body by the smell, consistency, color and other characteristics of the pouch contents. This is really valuable if you can bring yourself to accept the body’s ecology.

Alas, nothing is perfect. The colostomy has problems. Moving wrong while sleeping tends to result in an uncomfortable warm feeling spreading across the abdomen. Putting on a seatbelt often was accompanied with the snap of the pouch coming unhooked. Skin irritation is a constant concern. Of course carrying around a sack of unattractive smelling and looking fluid for the rest of your life is less than ideal. While reading the Sunday Parade section of the local paper, I saw an ad with an attractive young woman exercising in a pair of tights with the caption that she had an ileostomy. A surgeon in Florida had perfected a procedure that constructed an internal pouch using the end of the ileum. The result is a continent internal reservoir with all natural components. No more external bag. No more leakage or spillage. Not only was I interested, I decided that I was ready to try this as soon as possible. At this time I was fifty and more attuned to quality of life and feeling that at that age what did I have to lose.

The surgery was being done in several places but Dr. Pollack in Florida had done the most so I went there. As it turned out I was patient number 1000 for this procedure and Dr. Pollack proved to be the best. Notoriety at last. I was in the hospital for 23 days and was treated like a hotel guest rather than a patient. In all the time I was in the hospital I only pressed the nurse call button twice. Every other time I wanted or needed something a nurse was already there checking on me. I’m sure there was pain but the self-administered medication and care were so good that it’s not part of my recollection. I can not speak highly enough of my doctors, nurses and the hospital. After my first experience, this was a breeze.

Since my recovery, which was only a couple of weeks, I am a new person with a new life. I still eat everything I want, come and go when I please, and never worry about accidents or the need to rush to a bathroom. I empty my pouch when I feel it is full with no urgency involved. Depending on how much, how often, and what I eat, I may empty my pouch between two and four times on a normal day. If I don’t over eat this may only be once on rising and once before bed. If I eat a lot or have spicy, gassy food I may choose to empty the pouch more often. If I have a lot of gas I can relieve it by “intubating”, what we call emptying the pouch. This is done by inserting a catheter, about a thick as a pencil, into a small opening located in the lower abdomen well below my belt line to the right of center - pretty much out of the way. The abdomen would be flat if I were thin but being able to eat whatever I want, and as much as I want, alas I am not thin nor is my stomach flat. The buttonhole stoma, as it is called, is so small and unnoticeable that I can shower in men’s locker rooms without feeling self-conscious. I have had the Barnett Continent Internal Reservoir (BCIR) since 1992. I travel all over the country, commit to demanding schedules and never give a thought to physical needs. I’ve never leaked, had an embarrassing situation or missed a function because of physical problems. I do not take any prescription drugs and eat just about everything I want – too much actually, and have reached a very comfortable quality of life – it only took 35 years. Colitis is very difficult to live with. The ileostomy was a huge improvement. The BCIR has all the benefits of the ileostomy without most of the restrictions. While it is not appropriate for everyone facing a permanent coloscopy, I would recommend it always be considered an option.  Most doctors and surgeons either do not know about the BCIR, or have knowledge of earlier faulty procedures with internal pouches. Medical Technology is rapidly advancing with new and better procedures.  Colostomy is a serious step, check out all the options.  I would be happy to talk to anyone who is even remotely interested in discussing this procedure and my experience.