When I first sat down with my surgeon before my first operation in 2010, to discuss what a temporary ileostomy involved, he told me in no uncertain terms that I would be back to see him again in a couple of years for the full monty: a panproctocolectomy. At that time, I only had the courage to go through with an operation that had the potential to be reversed – it gave me some hope. I was scared of surgery and having a stoma, and wasn’t ready to make it permanent quite yet – it had been a big enough decision to agree to the temporary ileostomy. I therefore dismissed the surgeon’s talk and was confident that I wouldn’t have to have anything quite that serious.
A panproctocolectomy is a big operation to remove the colon and everything downstream (rectum and anus, which is then sewn up), such that a permanent ileostomy (stoma) is formed. The temporary ileostomy I had in 2010 retained, but bypassed, my colon such that my stool came out of my stoma at the end of my small intestine. This was to give my diseased colon, rectum and anus (where my Crohn’s disease was active) a rest in the hope that they may recover sufficiently so that my stoma might be able to be reversed to plumb me back together.
The problem was that fifteen years of Crohn’s disease had taken its toll, such that the gut wall of my colon was damaged from the significant inflammation over the years, and my rectum and anus were badly scarred and narrowed. Investigations, including an MRI scan, confirmed that these organs were not recovering. So even though the inflammation in my colon had subsided (owing to food no longer passing through it) the likelihood was that my Crohn’s would become active again if I were to be plumbed back together, and that the scarring and narrowing in my rectum and anus would cause the same problems as before.
Along with the symptoms of fatigue and exhaustion from my Crohn’s disease, the symptoms of pain, bleeding and incontinence were the worst to contend with as they gave me little control over when I needed to go to the toilet. One of the best things about my stoma was that it gave me back that control.
In addition, I was still suffering from intense and debilitating fevers that struck about once a month. The doctors thought it was a viral infection that was deep-seated in my colon and would be very hard to shift. The fevers would wipe me out for a couple of days with rapid swings in temperature, shivering, heavy sweating and vomiting. As the main function of the colon is to absorb water (as well as some salts), not having a functioning colon (i.e. because it was bypassed by my stoma) meant it was more difficult to control my hydration. Normally this wasn’t a particular problem as long as I was sensible enough to drink regularly but my fevers wreaked havoc and caused intense dehydration.
Once I had lost this balance of being well-hydrated it was very difficult to regain. Drinking anything that wasn’t the ideal isotonic balance led to greater dehydration as it would draw out further liquids and leach salts from my body, resulting in a very high volume and watery output from my stoma. Dioralyte was the answer! Many litres over a number of days would eventually stabilise my hydration and get the output of my stoma under control (back to a output with a consistency of porridge and of a reasonable volume).
Despite these fevers, my general health was better than it had been in years and I was no longer having to take a toxic cocktail of drugs to attempt to keep my symptoms at bay. The temporary ileostomy alone was giving me respite from the symptoms of Crohn’s disease that had plagued me for a long time, enabling me to do lots of things (triathlons, cycling sportives, a half marathon, skiing) that I had only dreamt of previously. I therefore saw my stoma as my saviour – my fears of what it would be like were unfounded and for the health benefits it gave me it was a minor inconvenience to live with.
With a bleak prognosis if my stoma were to be reversed, with the recurrent fevers, with my prolapsing stoma and with my pleasant surprise of how good life with a stoma was, in the end it was a very easy decision to make to have a panproctocolectomy. The surgeon was to be proved correct (though by then I was happy to accept this).
After the great year that was 2012 in which the twins were born, I did all my sporting events raising thousands of pounds for Crohn’s and Colitis UK, and I passed my professional exams, 2013 was all set for the big operation.
Mum and Dad travelled down on their wedding anniversary to stay with us and I had my operation the next day. Remarkably (modern medicine is fantastic!) it was all performed laparoscopically (i.e. via keyhole surgery) such that I now have only four tiny scars on my abdomen where the surgical instruments were inserted (they also used the hole in which my stoma was formed – which they made smaller afterwards to stop my stoma prolapsing, and the hole they cut in my bottom to remove everything through). The whole procedure took over six hours.
In order to provide pain relief after the operation I had been given an epidural. This, coupled with the effects of a long period under general anaesthetic, meant that I awoke from the operation very drowsy and with little feeling in the lower half of my body. The first few days in hospital following the operation were a bit of a blur, clouded further with morphine for added pain relief. It’s a very strange feeling and difficult to describe, but every small movement became a great effort such that I could not even summon the energy to wash myself or change my own stoma bag (this all changed a couple of days later when I had a leak and one of the nurses got fed up with me and told me I needed to start doing some things for myself!).
It took me several days even just to get out of bed. My epidural had been removed and so feeling had been restored to my legs, but the after effects of the surgery seemed to have taken away all my core strength. It was a monumental effort just to swing my legs off the bed, to gradually slide my feet to the floor and to stand up. It was going to be a long recovery…
I would do this each day and gradually shuffle a few metres further down the ward, using the drip stand to steady myself and carting all my various attachments with me – just going to the toilet was an expedition! At first, though, one of these measures was taken care of for me: owing to the epidural I had a urinary catheter inserted, which is as pleasant as it sounds. This was removed a bit after my epidural but for some reason my waterworks did not want to resume operation again.
A few hours later, despite many valiant attempts to urinate, my bladder had reached capacity and things were getting extremely uncomfortable. Keen though student doctors are, they are often not skilled or practised enough in the basic husbandry that nurses are (I have had similar trouble with cannulas being inserted). It was thus an excruciating period of time (probably only about ten minutes, but it felt more like an hour) while a very patient, but lacking-in-the-vital-skills-department, student doctor fumbled around trying to reinsert the catheter to relieve my soon to explode bladder. He succeeded eventually, to my utter relief, and fortunately the next time the catheter was removed everything worked as nature intended.
I remained in hospital for ten days, with some very welcome and kind friends and family visiting. The biggest thrill was to see the twins, though their wriggling at nine months old needed some careful management on my tender wounds. Although my time in hospital was generally restful, an elderly man who was in a bad way and quite upset about it had made the nights somewhat disturbed. I eventually made it home where my recovery continued for the coming months, although the healing of one particular part of me would turn out to take much longer…
Another big week for my marathon training: four runs with a total distance of 68 km, including another 20 mile weekend run. Next weekend I have a half marathon race, so this week is rather easier to give a short taper.
Monday: 12.7 km in 56 minutes
Wednesday: 14.4 km in 63 minutes
Thursday: 8.6km in 40 minutes
Saturday: 32.1 km in 2 hour 23 minutes