In Spring 1977 I turned 21 and had reached the halfway point of my college degree. During the summer I worked in a local factory and by the time I returned to college was feeling very fit. Then something changed. I found myself having to dash off to the bathroom frequently.
Eventually I plucked up courage and, in October, sought medical advice. I think it was the thought of discussing bodily functions with a stranger that made me hesitate. Very few doctors, let alone members of the general public, had heard of Crohn’s disease. The first attempt at treatment was Imodium but that didn’t work. By now I was feeling very weak and always cold to the touch.
It was decided I needed to have a “procedure”, my first ever, and a lovely one with which to “break my duck” - a barium enema. X-rays were taken and when the diagnosis came through it was “spastic colon”, nowadays called irritable bowel syndrome (IBS). The doctor decided this was due to “nerves” and prescribed a drug called Nacton. It didn’t work, which is hardly surprising as it was used to treat peptic ulcers. I should have questioned the doctor’s judgement but in those days doctors were gods and you treated them as such.
Over the course of a year my weight dropped from 73 to 54kg. I went to see the doctor again and luckily he was on holiday. I saw a locum who was shocked at my condition and arranged for me to see a consultant the following day. He was similarly shocked and said I needed to be in hospital. Two days later I was sitting in Croydon’s Mayday Hospital, ostensibly for tests, but I think it was also an excuse to give my system a complete rest. It was July 1978.
After three days I was told I had Crohn’s disease. It meant nothing to me but the consultant explained they didn’t know what caused it and there was no cure. I would have to live with it from now on. They were in no hurry to discharge me whilst I slowly regained some strength, helped by four units of blood. I was started on a combination of Salazopyrine and codeine phosphate.
Again the drugs didn’t work and in September 1978 I started my long-term relationship with Prednisolone, at 30mg/day. It worked! I completed my finals and started my first real job. Things were looking up.
Fast forward to June 1979. One morning I started getting a terrible lower abdomen pain. It was so bad, I thought ‘it must pass’ - but it didn’t. An ambulance was called and rushed me to Croydon General Hospital with suspected appendicitis. The surgeon prepared to do an appendectomy but once he had made the first incision he found a perforated gut which had leaked into the abdominal cavity. What should have been a simple, routine operation had suddenly escalated to another level.
The surgeon’s notes made depressing reading. My intestines were in a very bad way. There was even a mention of finding two strictures near my terminal ileum. The decision was taken to repair my bowel, clean out the cavity and then sew me back up. The appendix was left in position as they didn't want to risk septicaemia. I never found out why the strictures were left alone.
Once back on the ward I spent most of the next three weeks being fed intravenously. I returned home for further recuperation. By mid-August I was well enough to go back to work and was now managing on 15mg/day of Prednisolone.
The quiet years
Then followed a relatively quiet period of nearly 20 years! I had a few flare-ups but never severe enough to end up in hospital. I kept trying to reduce the steroids to 5mg/day but could never get below 7.5mg/day without having problems.
At the end of 1997 I started complaining of abdominal pain and underwent a colonoscopy. It showed an ulcerated stricture in my terminal ileum. There was talk of doing a balloon dilation but it was decided to wait to see if it worsened. For the first time the consultant mentioned giving me Azathioprine instead of steroids. The problem was the frequency of blood tests required, something I simply couldn’t fit in with work. I continued with the steroids but jumped to 50mg/day.
In May 1999 the abdominal pain became dramatically worse. The steroids were increased to 60mg/day, the highest I had ever been on, whilst I waited for a barium follow through. It showed that the stricture had further narrowed with my small intestine down to the size of my small finger. I saw my consultant a few days later and he gave me a stark choice - start taking Azathioprine (the “last resort”) or have surgery. I didn’t fancy another stay in hospital so chose the drugs.
After a few teething problems - flu-like symptoms, aching joints - the Azathioprine worked well and life returned to normal. I was holding down various stressful jobs, which included trips to locations such as Algeria and Kazakhstan. My hobby was also fairly full-on - competing at carriage driving.
In 2000 we moved house and my care moved to East Surrey Hospital, just 10 minutes away. My health returned to equilibrium for another eight years.
In May 2008 a routine blood test showed my platelet count was dropping. We weren’t too concerned at first but more tests showed that the level continued to drop. I was diagnosed with thrombocytopenia and the Azathioprine, the most likely culprit, was stopped. Given that this was the “last resort” before surgery I prepared myself for “interesting times”, as the Chinese would say. My consultant said that in the absence of Azathioprine I should self medicate with steroids.
A year later I was starting to get back pain that was keeping me awake at night. My consultant decided it was time for a CT scan. When the radiologist’s report came through it said “complicated ileal disease with suspicions of fistulas”. My consultant said it looked like it would be surgery but there was one “final last resort” we could try - Infliximab. The problem was the cost and getting Primary Care Trust approval. He sent off the request. I waited a week but heard nothing so decided to take matters into my own hands. I managed to find out who I needed to contact, rang them and within an hour or so had the necessary signature.
After the first two infusions my consultant wrote “he is a changed man”, but after the third one I relapsed and there was only one choice left. I was told to prepare for surgery, at East Surrey Hospital, within four weeks. My wife and I were asked to attend a meeting with my consultant, his boss and their surgeon, to discuss surgery and timing. When we got there they had some surprising news. Having reviewed the CT scan again they did not believe the hospital had the necessary facilities for my recovery. They were referring me to St.Thomas’ in London. A bit of a shock.
Off to London
I went up to London to meet the surgeon to get accepted onto his list. I immediately took to him. He was very matter-of-fact about the whole process and it helped put me at my ease. Having been given the operation date, October 11, 2010, he wanted to carry out a flexi sigmoidoscopy as he was concerned that my small bowel was fistulating into my colon. He warned me that I might need a stoma depending on what he found. Two weeks later he scoped me and was pleased to see that the colon was intact.
St.Thomas’ runs an Enhanced Recovery Programme with the aim of reducing recovery times for patients undergoing colorectal surgery. You can choose to be treated under the regime or go the conventional route. For me it seemed a no-brainer. My next meeting was with the Enhanced Recovery Nurse (ERN). She spent two hours with my wife and I going through all aspects of the pre and post operative care. She took us into the ward, on the 11th floor, where I was expected to stay. The first thing that struck us was the amazing view across London and the River Thames.
I had a further three visits to the hospital before admission. Two for pre-operative assessments, to make sure I was fit enough for surgery, and the third with the stoma nurse to mark the best position for the stoma, should I need one. I came away with a large, black cross on my abdomen.
Around this time I started writing a blog - www.crohnoid.com - recording the lead-up to the surgery, in the hope that it might enlighten other inflammatory bowel disease (IBD) patients about to follow a similar path.
I arrived at St.Thomas’ the evening before surgery and was put in a private room but told not to get used to it as it was strictly one night only. I sat eating my final meal watching the sun setting over the Houses of Parliament. I was very relaxed about the whole process and managed to get some sleep. Early the next morning one of the surgeons came to introduce himself and tell me that I was last on the list for surgery. My next visitor was the anaesthetist who talked through the risks of using an epidural and got me to sign consent forms for both the epidural and the operation itself. He expected that I would go down to theatre about 11:30am.
That start time slipped by an hour and I was taken down to theatre at 12:30pm. Within a few minutes of arriving in theatre I was drifting off into oblivion as the anaesthetic took over. I was hoping that the large black cross on my abdomen was still intact when I woke up. The operation lasted about four-and-a-half hours and the surgeon later described it as “complex and enjoyable”.
I woke up in recovery violently shivering. One of the surgeons came over to see me and lifted the sheets. The black cross had gone and was replaced by a stoma. Another new experience to deal with. The medical team were concerned about my temperature, wrapped me in a “bear hugger” and gave me a warm drink. At around 8pm I was allowed back to the ward. I was feeling great on a drug-induced high.
It was planned I would be in hospital for a week after the operation - but it worked out closer to two. My digestive system went into lockdown (post-operative ileus) for several days which delayed my discharge. It did however give me more time to learn how to cope with a stoma.
The discharge note spelt out, in technical terms, what the operation involved: “He underwent laparotomy, ileocaecal excision of locally perforated Crohn's mass/stricture and excision of enter-enteric fistula. There was gross right para-colic and midline fibrosis with terminal ileum drawn into a chronic abscess/fibrosis. An inflammatory mass was fistulating into a more proximal ileal loop, closely adherent to the recto-sigmoid colon. A double barrelled ileo-colostomy was formed in the right iliac fossa.”
In layman’s terms they removed 14cm of my terminal ileum and ileo-caecal valve and formed a temporary ileostomy. The difficult bit was separating the Crohn’s mass from the surrounding tissues and muscles, including my back muscles. It’s a tribute to the skill of St.Thomas’ surgical team how quickly I recovered and how well I have felt since.
Living with a stoma
I quickly got into the routine of changing pouches. My confidence grew rapidly. There were a couple of problems along the way. One saw me end up in A&E with my pouch filling with blood. It turned out to be an abscess which had burst and nothing like as serious as it first looked. A bit later the stoma started to prolapse, which was brought under control with an elasticated waistband. Life continued.
After Christmas I went to see the surgeon and agreed a date for the reversal operation - early April. There was one proviso, that the haematologists at East Surrey were happy for the operation to proceed given my low platelet count. This rang alarm bells. Try as I might I was finding it impossible to see the haematologist quickly. Once I had seen him I needed to get the letter giving his agreement. The planned surgery date was getting ever closer and my frustration was rising. Eventually the ERN at St.Thomas’ rang to say that the operation was being cancelled. You can imagine my feelings.
I kept pressing to get the letter and it finally arrived two days after the original operation date. I rang the ERN for a new date but was told it was down to when the surgeon could fit me in. Time for some more direct intervention. I emailed him with a copy of the haematologist’s letter and asked for a new date. A couple of days later the call came through - 13th June, later than I had hoped for but at least I had a date.
I knew what to expect this time. The operation itself was fairly simple and only took around an hour, arriving back in recovery at 1.30pm. I then had a long wait to have a platelet infusion. Once back on the ward I was given supper. It would be interesting to see if my system went into lockdown again. Yes it did. The nausea was worse than before, bad enough to have an NG tube for a weekend. This again delayed my discharge and I was in for a total of 11 days.
During my stay the opportunity arose to move my outpatient care to St.Thomas’. I jumped at the chance and have never regretted it.
Since the operation I have been taking no Crohn’s medication apart from Loperamide. Two follow-up colonoscopies have shown no signs of inflammation - Rutgeert’s score - i0. I have, however, been getting an ache around the rejoin but I’m told that is only to be expected and is purely mechanical.
I was expecting my digestive system to return to normal. I’d been told that I would need to take additional vitamins and have B12 injections as the section of bowel removed usually absorbed them. I don’t recall anyone ever mentioning that this same area was responsible for re-absorbing the bile acid produced in the digestive process. Many times I would find myself with an “upset stomach” and wondering if I had eaten something dodgy, picked up a bug or the dreaded Crohn’s was flaring.
It wasn’t until Autumn 2014 that I was sent for a SeHCAT test. The result came back - “severe bile acid malabsorption”. Suddenly it all fell into place. I have managed to keep it in check by taking an extra Loperamide capsule when needed. I want to try and avoid taking the specialist medications, such as Questran, if possible. So far so good.
Not the whole story
Compressing nearly 40 years into a few paragraphs has been a challenge and I’ve had to miss out the likes of portal vein thrombosis, liver and bone marrow biopsies and possible PSC.
A couple of years ago I decided, for my own interest, to see if I could obtain copies of all my medical records since diagnosis. Surprisingly, apart from a few early x-rays, they were all available and inspired me to write a journal from day one to the present. The writing process has been very cathartic and I am now turning it into a book. It’s very close to completion. Once done I can put it on a shelf and get some sort of Crohn’s closure - albeit of a temporary nature.
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