Surviving

This is the second entry on the period in early 2001 when I had surgery for a bowel obstruction. I spent a few weeks at home after my colostomy. Before I went home, the teaching nurses from the Enterostomal Therapy Program made sure I knew how to empty and rinse the bag, and to how to manage the the process of changing the bag which was removing the adhesive seal, rinsing the stoma, measuring and cutting a new seal and applying a new bag and seal. I still have the prescription form for an Activelife Drainable pouch #28209. The seals are very good but taking one off a hairy belly is a delicate adventure. Sometimes the seals would peel away from skin cleanly but they tended to find any hair and take hair out by the roots – and hair kept growing in under the seal. I got some scissors to clip the hairs, if I could get at them, instead of ripping them out. It was also important to try to pick a quiet time for the procedure to avoid making a mess.


I was weak when I went home. Getting into the car was an effort and the drive home was rough. I didn’t have any particular intense pain, but I sensitive to the motion. I think I stopped taking T3’s while I was in the hospital. Towards the end of my hospital stay, when the IV went, I started to take stairs as well as walking the halls. I was able to take stairs in my own house although it was rough at first. I went out for walks – a big parka over a robe and sweatpants worked. I would go for a half a block and back, and then around the block. I had Sorel boots so my feet were warm, but I noticed their weight. The sidewalks were passable, and the cold weather didn’t interfere with short walks.
I was encouraged to eat high protein foods and to take fluids. I had a lot of soups and stews, a lot of tuna sandwiches, milk, hot chocolate. I was acutely aware of any gas pressure, not because it was painful but because it was alarming. My main memory of the weeks before Christmas was the sense of bloating, the constant burping as gas came back. My digestive tract was working, as evidenced by the constant action in my colostomy bag, but it wasn’t working consistently. When I slowed down, I was afraid something else was going wrong. There was one time, shortly before my next surgery, that I became bloated again for a day or so. I had a few medical appointments. I had to attend a preoperative clinic at the hospital, and visit my surgeon at her clinic. Generally my wife drove. I did manage to start driving again. I went to libraries, I drove up Church Avenue to visit the central medical supply depot to get more colostomy bags and seals. I think I managed to shovel snow after a light snow fall.
The operating assumption was that I had a tumour which would be surgically removed. I expected that the ostomy would be closed at the same time, to avoid a third surgery. Depending on the size, location and pathology, I might have had to have chemotherapy alone, or radiation and chemo, starting as soon after the surgery as I was fit. I did some reading about treatment, and I found several Web sites with information about cancer and cancer care. The Cancer Care Ontario pages were informative.
I went through the regular surgical preparation. No food the night before surgery, no fluids after midnight. I took the Fleet products, including the home enema, which felt like I had turned myself into a shit-fired rocket although nothing really happened. It had been two months since any thing got that far down the tract. It was a huge cramp. I think my surgery was 7:00 or 8:00 AM. I had the impression it was a Friday but I have a pathology report that says the samples were sent down on Thursday February 22, 2001 around 2:30 PM. I went through preop, wheeled into OR, said hello to the nurses and went to lala land. I woke up in my bed in the ward. My wife was there, and possibly her mother. She looked like shit. It was around 6:00 PM and I had been in surgery for something like 10 hours for what had been supposed to have been a 3 hour procedure.
The next couple of day are blurred by the pain medication. I still had the ostomy, and I had a catheter. There was a long incision, closed with metal staples. The news as that there had been a large mass constricting my colon, which had been attached to my appendix, small intestine and bladder. The surgeon had resected the end of my bladder, taken off the appendix, and a piece of small intestine, as well as the affected section of large intestine. She also tried to take any fat, lymph and fascia that contacted the mass. The appearance was that it had been a complicated tumour that had left the bowel and invaded other structures. The catheter was necessary after the bladder surgery. I am not sure why she left the colostomy. It may have been a question of what else I could take after that surgery, or it may have been with a view to simplifying life during cancer treatment.
I remembered that I had many odd bowel experiences over the years. Sometimes a full bladder might be followed by bowel cramps. Once I had passed a small blood clot while urinating. It all seemed to fit into a pattern, although there were other things that did not fit the idea of a tumour. For years, I had experienced occasional severe cramps and backaches, which always resolved themselves.
On the following Monday, I received a visit from an oncology resident to talk about cancer treatment. A few hours later my surgeon dropped by, unaccountably smiling. She was short dark haired woman, and at that point probably in the 6th month of a pregnancy. She looked like a combination Buddha and Mother goddess. She said the pathologist had invited her to lay out the specimems and tell them what had been connected to what, and showed her their slides. No cancer. It’s hard to explain the sheer euphoria of that moment. It was a gift, as sense of relief, a sense of sheer grace.
The real story of the obstruction is a medical anomaly or just a mystery. Obviously there had been some inflammatory process causing inflammatory scar tissue to build up attach the bowel to the other structures. It may have started with an inflamed appendix, which would have been be the obvious culprit, but there is no way of telling. As I was working through my memories to write this post, I read the medical column (Vital Signs) in the December 2004 “Discover” magazine which was about caring a newborn which developed a sudden intestinal leak. It implied that there are occasionally congenital weak spots on the intestines. My parents used to talk about me as a very anxious infant, prone to crying. I had a hiatus hernia. So who knows how and when this process started. The leak had been small and slow and it was contained by scar tissue instead of causing a big infection of the abdominal cavity. The infection had come and gone, and the inflammatory mass had built up and started to constrict the colon.
I was out of the hospital within a week or 10 days. There were a couple of new routines this time. I had learned about hospital gowns, the difficulty of rolling the IV stand into the washroom, the small shelves and limited space for shaving and washing in the first round. I was used to wearing a gown and bathrobe around an IV line. This time I had to manage a portable bag on the end of the catheter line. Some days I had to wear pressure hose. I am not sure why. When I got to the hospital the nurses always were shocked at my high blood pressure, but I seemed to have low pressure during and afer surgery. I had to keep the catheter for something like 3 weeks in total, and I had to go back to the hospital one afternoon to have a nurse take it out. What does she hang on to when she pulls the tube? I had to take lots of fluids and start passing water again, which was another interesting experience. It burned, and the muscles that normally shut the flow needed to remember to clamp all the way.
I still had the colostomy after the second surgery and I had to go back a third time to have the ostomy closed. I had more sessions of preop at the hospital. This time, I was looking forward to getting back to work, without having to face months of cancer treatment and surgery. I was trying to get active, trying to get involved with my work again, but I was still weak. An hour sitting at the computer would still tire me out and force me to nap.
The last surgery was frustrating. It was scheduled and bumped twice and I was finally squeezed in on a Friday in April. I was set up for epidural pain control. I remember waking in the recovery room – the only time among the three surgeries that I can remember that. The surgical anaesthetic wore off and the nurses had trouble getting my pain control started. The epidural actually stopped working that night or the next night and I was switched to demerol again. There were a few days waiting to see if all the connections worked, if my colon worked. this seemed to be the hardest surgery to deal with. There was a lot of pain, and I expected to progress faster, and I was frustrated and tired
My surgeon was a little anxious about side effects. She had dissected a lot of tissue in my pelvis and she was worried she might have nicked nerves affecting my bladder and perineal muscles, causing incontinence or impaired sexual function. I remember her, red-faced, asking questions in a post-op clinic. (She was a general surgeon starting her practice in Winnipeg at the time. She drew me, but her practice was cancer surgery and I think she was more accustomed to breast cancer surgery. She was a shy person, very much inside her own head. I remember one Saturday morning visit during my first stay. She brought her three year old daughter and the nurses at the nursing station entertained the child with a Billy Bass – that annoying moving singing redneck fish toy).
I was working regularly by the end of May, and we drove to my wife’s family’s cottage on the May weekend. I was able to get my kayak into the water and to paddle a short distance.
This isn’t the end of the medical parts of the story I didn’t heal well. I developed a hernia on the incision line of the ostomy, and I had a further operation in August 2003. The surgeon who operated in 2003 referred to some of my abdominal fascia as rotten. There may have been some infection and some damage from my quirky bowels over the years. I don’t know. I didn’t get a clear explanation of everything. It didn’t seem to matter.
I had lost weight in December and January. I gained it back in 2001 and 2002 and then lost it when I started cycling in 2003. My life went on.

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