4 years post-op since total proctocolectomy and J-pouch procedure

It has been about 4 years since I had my final of two surgeries used to remove my large intestine and created a new reservoir (the J-pouch) out of my lower small intestine. I can't believe that it has been that long. It is one of those experiences that while in the midst of the drama you can't picture life outside of your current unpleasant circumstances.

I think I started having irritable bowel syndrome and ulcerative colitis (UC) like symptoms since I was 14. I believe that possible stress from dealing with my Dad's cancer and death may have been a trigger to a pre-existing disposition towards UC. I had no idea what was wrong, and would have stomach pains and discomfort off and on. I would complain about some sort of soreness but never really pushed the matter. I think it crept up on me so gradually that I just adapted to the symptoms and considered them the norm. I think the first time I really noticed that something was wrong was when I was 17 years old and hiking with Tim and Bradford in Southfork looking for my Dad's old mines. We got up there fine and everything was great, but then I started having major abdominal pain and problems. I got super sick and nearly fainted. The guys were great and helped me off the mountain (even attempting to make a stretcher), we made it down in one piece even though we ended up getting stalked by a cougar for the remaining 5 miles of the hike (a whole different story). Later symptoms were misdiagnosed as a hernia and a torn groin muscle basically everything but UC. It was frustrating for me because I was uncomfortable and knew something wasn't right but the doctors couldn't find anything, so I felt like a wuss and would just deal with it. I was really naive to the whole illness thing I seldom got sick but when I did it was usually nasty (but I did get fake sick off and on through junior high and High school). Finally in October of 1999 I started seeing blood. The first time you hit the lou and notice blood you kind of panic and run through your head what could be causing it. To make a long story short I went in for a sigmoidoscopy, a smallish fiber optic type camera used to view the large intestine. What an absolute miserable half hour. I laid there on my side and watched the second hand ever so slowly tick, and occasionally I swear, it wouldn't move at all. The diagnosis came back as UC and I was given some sulfasalazine tablets and was told that UC is quite common and easy to maintain with a few meds. I took the Dr.'s word for it and went on my merry way. Well things just nose dived. While serving in England my health really took a bomb and I began to have to use the bathroom 20+ times a day loosing ounces of blood each time. I kept a positive attitude and tried not to mention anything. 6 months over seas and I finally decided I needed to see someone. The socialized medicine was such that someone in my condition was put on a 6 month waiting list since it wasn't that pressing. This was unacceptable and I opted to go to a private Dr. 10,000 quid later and a rigid sigmoidoscopy while awake, and I was told the inflammation was pretty severe and steroids (prednisone) was needed. They started me on my first prednisone doses, and I started a seven year journey of prednisone induced side effects. Some effects included extreme hunger, unstable emotions, sweating, elevated heart rate, insomnia, skin problems (like welts and pits). The drug was terrible but appeared to take care of my symptoms. I would pop a high dose of say 65 mg's and as soon as I was well I would taper off from them. Immediately I would start bleeding again and have a lapse when I was off the steroids. It was apparent that this was a battle best fought in the States. I headed home with the hopes of serving elsewhere at a later date, but I was still naive to just how serious this illness can be to those of us who don't respond to meds.

I found a gastroenterologist at the U and began a series of tests that were beyond medieval torture. I had hoses shoved through my nose past my stomach into my small intestine and then was injected with barium until barium backed up into my stomach making the most violent projectile vomit session I have ever had. I drank gallons of barium while strapped to a table and flipped upside down while a paddle squished the barium all around. All of this while being exposed to huge doses of radiation. I had my first of what would become an almost bi monthly colonoscopy. When all of this torture was completed it was discovered that sure enough I have UC. I was put back on steroids including an enema form of the steroid (a most unpleasant medication). Once again I would roller-coaster through the flare ups and remissions of the disease. Finally it was determined that I am one of a small percentage of people who don't respond well. I began to take various pills of differing doses and ratios. At one point I was taking 35 pills a day. Each pill had its own side effects. I did not take these pills as good as I should have but was fairly on the ball. Still nothing worked. They decided to try immunosuppressive therapy and I began to take similar meds that heart-transplant patients take to prevent the body’s immune system from rejecting the transplant. Only in my case it was my large intestine that my immune system was fighting and my body was very effective at killing it.

During this entire phase of pill popping, I realized there was no chance of serving again so I got a job. I then courted my wife and was married a year later. I started school and began to excel academically. Outwardly I looked fine; you would have absolutely no idea just by looking at me that I was loosing cups of blood a day, often using the bathroom in excess of 30 times a day 15 of which were during the night. I seldom could sit through a 50 minute lecture and not have to high tail it to the loo. The worst part was that when the urge hit me I had only a minute to make it to the bathroom or I was toast (too many stories here to go into for this post). It was a challenge but humans are amazingly adaptive creatures and I began to adjust to my life of pills and pit stops. My energy was extremely low and I was experiencing anemia. I was loosing weight but my steroids caused retention of water so I looked fat. It killed my self image and it was difficult to not get a little depressed, but I focused on my studies and obsessed over my grades and I would not settle for anything but the highest mark in every class and on every exam. I think that I used my education to redefine me and build up my self esteem again. I was still loosing the war that was fought behind bathroom doors. I fell in love with Geology and ditched several other degrees I was previously pursuing (genetic epidemiologist, radiologist, orthopedic surgeon). I found my love of outdoors and interest in the natural sciences made geology the only fit, not to mention my years of prospecting and treasure hunting with my brother.

I finally was fed up with my gastro and changed to one Tim suggested I go to. It was the smartest thing I could have done. He did more tests perhaps my 15th colonoscopy and concluded that my UC wasn't going to kill me but all the meds I was taking would. He suggested surgery. The very thought of it seemed out of question. I was set to graduate school in just under 4 years from start to finish and I was really excelling. I had a nice internship James had gotten for me at the county, and Vye was expecting our first. The Dr. mentioned that my disease was killing me and my quality of life was terrible. It was true. I was struggling to stay focused at school or my job. I was exhausted and fought every morning to get out of bed and do another day. Unless you lived with me, though, you would assume I was perfectly healthy and all was well. It was challenging to not have anyone understand me. I was super sick and was on terrible medication, I had elevated myself as an aspiring geologist to a point that I no longer could discuss my interests with average students; I began to feel quite isolated and alone.

I decided to try one last effort with the meds to see if something more drastic could work. It was about this time that I began to feel the first impulses to become a distance trail runner. I would run with James at lunch and found it to be a ray of light in a fairly dark place. The medication we chose was a batch of leukemia chemotherapy meant to destroy the immune system. I could not get sick or I could be hospitalized or worse. I started taking the new chemotherapy. It was awful! I went from struggling to focus, to someone who was struggling to function. My energy went from bad to worse and I found that running became a chore. A defining moment came as I was studying for a math exam in June of 2005, I had finally reached my breaking point. I could not do one more day in the condition I was in. I was a shattered fragment of my former self. I couldn't study for my math exam because of my fatigue and I wouldn't settle for a poor mark. I called up my Gastro and said lets do the surgery. I was scheduled to meet up with my surgeon Dr. Foley a few days later. He took one look at me and asked when the last time I left the house or functioned normally was. I told him I work and go to school everyday. He was shocked that I was able to live my life in as poor condition I was in. He scheduled my surgery for 2 weeks from our first visit July 7th. A part of me felt like I was giving up the battle like I was defeated, but another part of me was relieved. My body was sick and tired of being sick and tired and I was ready to move on. Vye was 4 months pregnant at the time.

I was told what the surgery entailed. It involved a complete removal of the large intestine, the gallbladder, and appendix. A J-pouch would be created by doubling up the bottom 12 inches of my small intestine cutting the separating wall, and in a sense creating a double wide pouch, and then attaching it to the rectum. Part of the small intestine would be pulled through my abdomen for 6 weeks as a temporary loop ileostomy while my new pouch healed. The Dr. was frank with me, "This is going to suck! You will feel terrible and look worse. It may take months or years to fully recover". He mentioned I would loose tons of weight, and my appearance will be less than attractive. I didn't care I was ready.

I will skip ahead for any of you still following my rambling dialogue written during a bout of insomnia.

The day before the surgery I had to flush my system out one last time. After doing flushing processes dozens of times before, I was not going to be sad to see it stop. After a restless night with thoughts of complications and what if I die? I will leave a wife and child behind etc. You know your typical uplifting pre surgery thoughts. The next morning came and I gathered my things in a bag and we were off. I was really nervous in the waiting room and was nearly pacing. An older woman crept in the office and demanded she receive a colonoscopy immediately from my Surgeon and she tried to bump me. Luckily the nurses hurried me into the prep room and struggled to start an IV in my nervous and dehydrated body. Finally getting my IV started, I sat with my wife for a few minutes. Her eyes were red and she had her fake, I am trying to be brave face on, but she really looked absolutely frightened. Dr. Foley came in and said he was ready. I told my mom and kissed Vye good-bye and locked eyes with Vye until I was around the corner and out of site. The thoughts crossing my mind were very sharp. I remember thinking this is the last time I will have this non scarred tummy, and when I come to I am going to be in a world of pain like I have never experienced. I was not scared just realizing that there was no turning back. This was it, my life was going to change at this exact point and time, I hoped for the better. I was placed under the bright lights and a group of 4 people began to prep me. First they placed foam wedges under my sides and then placed large Velcro straps over my arms and legs. I was pinned and claustrophobic. The anesthesiologist came in and said he was ready to give me my meds. He injected a shot into my IV and instantly the world began to spin and distort. I instantly had a violent allergic reaction and began to projectile vomit. I was strapped down and couldn't turn on my side to prevent the vomit from going back in my throat. The last thing I remember is a bumpy trachea tube being shoved down my trachea while nurses applied pressure to my trachea externally, I was still coherent, and then darkness...

When my eyes opened I was quickly aware of where I was. I could hear nurses scurrying about and I could hear a very annoying moan. I soon realized the moan was coming from my own voice box and a nurse asked me my pain on a scale of 1-10. I think I mumbled something like 50. She hit me with a couple of doses of pain meds in my IV and gave me a button that was on a timer so I could administer my own meds. I think I pushed it thousands of times in those first few minutes. 10 minutes later the nurse came in and asked my pain and I said 10. The nurse said as sweetly as possible "I can't make all the pain go away, you will get used to it honey". Yikes!!! This was not the sort of thing you get used to. You can get used to discomfort easy enough but full on abdominal gutted from sternum to pelvis and from one side to the belly button was not easy to get used to. I was soon wheeled into my room and four people grabbed the corner of my sheets and hefted me onto my new bed. At this point I was wondering where my wife was. After what seemed like forever I heard her and my mom's voices coming down the hall. They had been given the wrong room number, and were wondering where I was.

The hospital was challenging. I read a ton. I didn't watch any TV and mainly just liked to have Vye by my side while I read hundreds of pages a day. The time in the hospital went slowly and I longed to get out of there. I was absolutely not hungry. I never wanted food. I was in shock that they wanted me standing the first day and walking within 12 hours of the surgery. Like the nurse said I became used to the pain and it wasn't too bad. My temporary ileostomy bag would fill up with blood and bile in a few hours and getting used to the whole bag changing thing was a nightmare. There is so much about this experience I would like to share but I think I should wrap up this lengthy post.

I ended up going home 10 days later and stayed with Rich and Tracy since I needed constant care and Vye had to go back to work. I really hit a low spot on my second night out of the hospital. I was unable to eat or drink anything and I was withering away. Finally my mom decided Vye needed some sleep but she was convinced that I might pass away in the night so she stayed awake watching me the entire night out of fear that I would kick over. The following day I went back to the hospital and was told if I didn't eat I was going back in the ICU. I went back to my brothers house and began to sip some ensure. It wasn't until I cranked my Depeche Mode Exciter Tour DVD that I finally felt my body make the shift to recovery. I was 103 lbs and looked like mister Burns from the Simpsons.

I tried to go to work two weeks later but it was nearly impossible. My first attempt ended with my bag exploding all over, and James had to rush me home. What an embarrassment. I think I had given everyone a false sense of timing for when to expect me to be up and mobile again. I said two weeks but I never did feel well enough to do much during that 6 week period between surgeries or six weeks after. Little did I know that my ileostomy had a hole, and it was slowly leaking acid into my abdomen, ultimately ending in the removal of part of my lower right ab muscle.

The second surgery was miserable because I knew what to expect. I was completely wasted from my previous surgery. The worst part about the second surgery was when my small intestine finally woke up from surgery. The pain was excruciating for weeks. It felt like a terrible ripping sensation as my new pouch tried to take on the responsibilities of the large intestine. I didn't want to eat because it meant terrible pain for hours afterwards. Well time went by and I began to heal. It took about 1 year before I felt well again. It took several more years to really get a grasp on this whole pouch thing.

Four years later since the second surgery and I am in some of the best health I have ever been in. I will never go back to how I was before the disease but my quality of life has improved drastically. The surgery was worth every bit of pain and suffering. I still use the lou much more than the average person. I have bad days and even bad weeks when things aren't functioning properly. Now I finally feel like I am in control of my health again. I am accomplishing things with my pouch that many healthy adults can't or won't do, such as long distance running. I am not positive, but I may be the first person to run a 100 mile trail event with a J-pouch. I have finished my degree in the top of my class and I am well into my PhD studies at UVic. Life is good and these struggles have forged me into a stronger more appreciative version of my previous self. I feel I would never have done as well in school if I didn't have something to prove (e.g. I can graduate first in my class with good marks while dealing with a terrible disease). I don't think I would be striving to run 100 milers if I didn't want to prove that I can do anything that anyone else can do. I love to prove to myself that I am capable against all odds.

This experience allowed me to read literally tens of thousands of pages of many different sorts of books. It was a great experience. I wouldn't wish it on my worst enemy, but I feel I have taken a difficult situation and turned it into many strengths. This life is marvelous and to fully experience the lows and the pains, is to make the rest of your life experiences much more flavorful and meaningful. I am happy with my life UC battle and all, and I am proud of what I was able to accomplish in spite of my many challenges. I truly am blessed.