Chris’s Flight To Recovery – From UC to J-Pouch
One airline pilot’s experience of Ulcerative Colitis, colectomy surgery, temporary ileostomy and j-pouch reversal.
As a quick introduction, my name is Chris Lewin. I am a Brit married to Shannon, a Canadian who I met in Greece! We have two kids, Morgan and Sophie and we live in Okotoks. I am an airline pilot, and my wife works as an education assistant.
I am a volunteer with Calgary Ostomy Society’s Ostomy Visitor Program.
My Ulcerative Colitis (UC) journey started in 2013 when I was having some ‘bowel’ issues back in the UK. There is a history of colon cancer on my mother’s side of the family, so I made an appointment to see a GI specialist and had my first sigmoidoscopy. “No issues, probably just a bit of stress due to work/life balance” This was no surprise as we were in the middle of planning a move back to Canada, which required applying for permanent residency, training and testing to get a ‘Transport Canada; Airline Transport Pilot License.’ and applying for work in Canada. Thankfully it all worked out, and my wife and kids moved to Okotoks in the summer of 2013, and I followed in February 2014.
I got a job flying for Westjet Encore, and along with settling into a new country, new schools for kids, a new job for my wife, a new house etc., there seemed little time to notice any bowel issues. Indeed, I didn’t really have many for the first few months I was working. However, slowly they returned – bouts of bloody liquid stools, a few days off of work, weight loss followed by weight gain. This was enough for me to feel concerned and enough for my doctor, with the knowledge of my family history to refer me to a GI.
I first met Dr. Stinton in 2015. After an initial colonoscopy showed no inflammation, she thought my issues were stress-related IBS. This made sense with all the changes that had happened and were ongoing as a result of moving to a new country. Unfortunately, as time progressed things slowly got worse. Flair-ups lasted longer, time oﬀ work increased as did my stress levels due to work and home life. I tried medications, diets, and naturopathic remedies but nothing seemed to help.
In 2016 my wife convinced me to look for help outside of modern medicine. She had found an Edmonton-based business ( a company called ‘Unwind The Belly ) owned and operated by Peter Melnychuk, who worked a couple of days a month in Calgary. Doubtful it would work, but willing to give anything a go I booked an appointment. Using Visceral Manipulation, Chi Nei Tsang and Neural Manipulation (among other therapies available) Peter was able to calm my gut down and return me to a degree of normality. I was amazed at what I had experienced and at the results, an almost total reversal of symptoms at the time. Confused by what I had witnessed, Peter literally talked to my body to see what the issues were, and with a flick here, some pressure there and a slight manipulation somewhere else he was able to reenergize, turn on and get things under control again. To say I was skeptical of anything other than modern medicine when I started with Peter was an understatement but a testament. It is my belief that if I had not seen him I would have had to have surgery many years before I actually did. What Peter does is obviously not a cure. However, I firmly believe that he was able to calm down my flair enough to hold the colitis at bay and prevent me from having surgery for at least a few more years. I still see Peter now and think the Visceral Manipulation is helping to keep my pouch and small intestines in good order. (I highly recommend him. Visit his website: www.unwindthebelly.ca.)
A Proper Diagnosis
Although Peter was able to calm things down, I still kept getting flair-ups. Further colonoscopies showed no indication of anything concerning. Frustrated with the lack of evidence, as to what was going on, Dr. Stinton wanted proof. I had a colonoscopy mid-flair-up in March 2019. This time the result came back with something … Mild Ulcerative Colitis. At last, I had a diagnosis, and a reason as to what was going on, I was prescribed 5-ASA medication. Unfortunately, as 2019 progressed I felt more tired, flair-ups kept happening, the meds didn’t seem to be helping and I was sent for another colonoscopy in November 2019. This time the result was more concerning – moderate to severe UC. This was not Dr. Stinton’s area of expertise, so she handed me on to Dr. Kareemi who does specialize in this area. As I sat waiting with my wife for my first appointment with Dr. Kareemi, we were looking at a chart on the wall that depicted the usual time scale of what to expect with UC. Essentially it showed over a period of time you would have flair-ups, periods of remission, and eventually if unlucky and the drugs didn’t work the possibility of surgery. My wife and I took comfort that I was just a few months into this, and the chart showed that you may have UC for up to 15 years before surgery would be needed if indeed it ever was. Little did we know what the next 10 months would bring.
Dr. Kareemi was awesome, very knowledgeable and experienced. He explained to us what UC was, what was going on with my body and what the stages of treatment were. We left not just with a treatment plan but armed with a book on understanding IBD and UC, a prescription for steroids and instructions to get a Tuberculosis (TB) test. We also had hope that although things had progressed very quickly in the last few months, medication options were out there that have been proven to work well with UC.
It was decided that an aggressive step-up treatment plan was the way to go. Start small, but if that didn’t work don’t hang about, go to the next level or diﬀerent drug without waiting too long. I started on Budesonide, (a steroid that works well on the gut if taken in the correct form) It was a shaky start. The pharmacy initially gave me their generic form of Budesonide, which unfortunately does not work on the gut. After that misunderstanding had been sorted out and I was given the correct medication, we got back on track and started to aggressively try to get things under control. At this time even Peter’s magic Visceral Manipulation was not having much eﬀect.
I mentioned earlier that I had to be sent for a TB test. This is due to the fact that one of the biologic treatments would suppress the immune response that fights oﬀ TB if you had had it previously or been in contact with someone that had TB. It is hard enough fighting UC, you don’t want to have to fight TB as well! My TB test came back positive!!!! Not usual in Canada, but as a European TB is more commonplace, and at some point, I must have come into contact with someone who was carrying it.
The treatment for this is a drug called Rifampin. It is very successful in suppressing TB, and once the course of medication is complete you don’t have to worry about it again. Unfortunately, Rifampin has the eﬀect of reducing the eﬀectiveness of other medications you are on by half, and the course of meds takes 4 months. This was far from ideal, as I was now in a position where we are desperately trying to get the inflammation in my gut reduced whilst taking a drug that was reducing the eﬀect of the drug I am using to do that with! We quickly changed from Budesonide to Prednisone, and rapidly increased the dose of the prednisone to try to counter the negative impact of the Rifampin … unfortunately without success. In March a colonoscopy showed no real improvement from the one taken in November, and I was admitted to Rockyview General Hospital in an attempt to finally get the inflammation under control.
The book I had been given was called Crohn’s and Colitis, Understanding & Managing IBD by Dr A Hillary Steinhart. Having read the book I had an understanding as to what treatment plans are usual and what eventual outcomes to expect, but I was still shocked when in hospital I had a session with an ostomy nurse. Even more so when I met for the first time Dr. Jenkin, a surgeon who specialized in creating ileoanal pouches.
I recall it was a Friday when he came to see me and talked about what options I had with regard to surgery. Either a permanent ostomy or a J-Pouch creation. He also mentioned he had the OR booked on Sunday with a spot-free, so If I wanted I could book in, there and then!!! I remember thinking ‘hold on, that chart on Dr. Kareemi’s wall said I had 15 years before this was needed. It’s been 4 months … how am I here!!!? Because I was still on the Rifampin and hadn’t started any biologic treatments I decided that at this point I did not want to have surgery and that I wanted to give the medications a good chance of making a diﬀerence before choosing surgery.
Although the IV Prednisone had worked a bit, it had not done the desired task of completely reducing all the inflammation in my gut. I was still having frequent, urgent and painful visits to the washroom.
However, it was time to press on with the biologic drugs to see if they would work. I cannot remember the order in which I tried the biologics, but suﬃce to say Infleximab, Vedolizumab, Toficitinab and Inflectra all failed to get things under control.
Throwing in the towel
In July of 2020, it was decided that we had given medicine a really good try, but my UC was untreatable, and that surgery would be my next step. I walked down the corridor to see Dr. Jenkin (Dr. Jenkin & Dr. Kareemi share a building) and reintroduced myself. The options and risks were discussed again, and a booking was made for September 14th for a 2 step ileoanal pouch construction surgery, with a temporary ileostomy. All the while we were talking, I was thinking of that chart that had indicated I may have 15 years. I had managed just 10 months.
Getting my life back
I loved having an ostomy! What freedom from pain, from urgency, from being tied to a nearby washroom and having to plan every move, every trip so as to know where the next washroom was. I had some issues. Skin breakdown around the stoma made the whole area sore, but nothing compared to an anal fissure! My stoma was very active, and as such changing the appliance was a challenge. It didn’t seem to matter what time of day I chose, as soon as the box of supplies came out of the cupboard Boris (the name I gave my Stoma) started acting up! But these issues were manageable, and it felt like I had my life back. Walking the dog, grocery shopping playing golf and even skiing were all activities that didn’t require military-level planning! I did have one self-imposed setback – a skiing accident that resulted in multiple broken ribs. This made my last 4 weeks with a stoma very painful and uncomfortable.
I am undecided on my j-pouch. Yes, I don’t have the issues that came with changing an ostomy appliance every 3-4 days. Yes, I don’t have a bag hanging oﬀ my stomach. BUT – I am back to having 10-12 bowel movements a day, so back to planning any activity or travelling around where the washrooms will be. I suﬀer from fatigue and tiredness, as well as the dreaded ‘Butt-Burn! However, I have been lucky in so much that I have so far avoided pouchitis, and the few blockages I have had have been partial.
We all know that there is no one road on the journey that we are on. That our experiences are all diﬀerent. We understand that there are similar struggles, but what adversely aﬀects one person will have no eﬀect on another. For those new to j-pouches the only thing that will ultimately prove if the pouch has worked is time.
I feel it is also important to mention my mental health. This is never an easy topic to broach, and my mental health has not been great for periods of time over the last 20 months. I have struggled with the fact that I can not work. A cockpit in a commercial airliner is not the place for me to be at the moment, and at times this has made me question my identity. I like to think that I am quite a pragmatic person and that I am able to rationalize what is happening, and most of the time I can. However, sometimes the dark thoughts are too much and I find myself in a spiral of negativity. It can be tough to climb out but having family and kids helps. Rides need to be given, meals cooked, laundry done, and perhaps most importantly dog walked! I find doing these tasks, having small successes each day, as well as the exercise from walking the dog helps to keep me feeling positive.
I would also like to mention the role the Calgary Ostomy Society (COS) plays in maintaining good mental health. I signed up to join the COS whilst still in the hospital! I know how important it is to be in contact with people who are going through or have gone through similar situations. It is humbling and inspiring to know that there are others willing to give their time and knowledge to those of us who are new (thank you Kevin for advising me to get a bidet – what an invaluable thing to have in the fight against ‘Butt-Burn!’), and I hope to be able to contribute in the future. I know it helps my mental health side to know other people are out there managing, contributing and living successful lives with an ostomy.
Initially, I much preferred the ileostomy, but as time goes on, I seem to be warming to my j-pouch. If things continue as they are, with 10-12 BMs a day, with the associated fatigue and tiredness my j-pouch will be considered, in medical terms, a failure and I will be oﬀered surgery to have a permanent ileostomy. I will politely decline, knowing that for me this new way of living is working, I am able to live a full life and I hope to be able to return to work. I will also have in the back of my mind that anytime I deem it not to be working I can ask to have the reversal surgery.
I feel in control of my life again.
Chris is a member of the Calgary Ostomy Society, and a volunteer with our Ostomy Visitor Program, a service offering support to persons with an ostomy or j-pouch.