I was 16 when I started having stomach cramps, diarrhoea, bleeding and fatigue. As is often the case, doctors were initially unsure as to whether I presented with Crohn’s or ulcerative colitis and it took two years to reach a definitive diagnosis. I’ve forgotten more surgery than I can remember! Most of the time I was admitted for bowel resections, resulting in a colostomy at the age of 18.
In later years, a major flare resulted in an ileostomy and this was subsequently made permanent by a total proctectomy. There have also been other symptoms connected to the Crohn’s including a longstanding perineal fistulation, which warranted multiple plastic surgeries and a urological condition also requiring multiple surgeries, two of which were major urethral reconstructions.
Put alongside other challenging medical complications, the unrelenting battle with my health has been such that The London Clinic has become a ‘safe haven.’
I discovered The London Clinic after Dr Andrew Thillainayagam (Dr T) was recommended to me by my previous doctor Professor Derek Jewell at the John Radcliffe Hospital, Oxford. Dr T and I hit it off quickly; he’s an amazing guy! Dr T is always interested in the bigger picture, beyond what is facing him in clinic, and is quick to spot other ‘side-line issues,’ for example the need to treat my anxiety and depression when it all got too much.
The London Clinic’s holistic approach to care is something I will always value and be appreciative of, as well as the extra effort made to ensure my wellbeing. When the pain was really bad, and admission unavoidable, I could always call The London Clinic and jump into a taxi.
With Dr T’s team expecting me and instructions issued as to my immediate treatment in advance of his arrival, I would arrive all checked in with my room prepared.
What I love about The London Clinic is the continuity and consistently high standard of care. Going back and forth over 15 years I know all the people taking bloods, the porters, the catering staff, the nurses, anaesthetists, pain management teams and the radiographers.
When you’re constantly in and out of hospital, your life can be turned upside down and you worry about job security and finances. It’s easy to become rather intolerant and a little resentful of the fact that there seems to be no let up, and small comforts and kindnesses make all the difference.
Dr T and consultant surgeon Roger Springall are like old friends, even in the most trying circumstances, it’s always a genuine pleasure to see them!
Your mindset is really important in dealing with this disease. My Crohn’s has been about as bad as you can get but I have always tried to stay positive. I’ve been in situations where the level of urgency to go to the toilet has been so bad I’ve been in tears and doubled up in pain.
When this happens without warning, and particularly in a public space, the accompanying panic and mental stress is simply awful. There were times when I didn’t make it and all I could think was, what do I do now? I’ll never forget the blind panic and consequent embarrassment and humiliation, but it’s really important to remember that you do cope and you do get past it.
Crohn’s has been a battle for me but I’m happy to say I’m in a good place right now. I’ve a wonderful wife and adorable children, a good job and my most recent checkup with Dr T was really positive.
There is no cure for Crohn’s but I am currently in a period of prolonged remission and am hoping this continues for as long as possible.
It will always be really important to me to be treated by the best people, in an establishment fully equipped to deal with the complex health problems I have faced and continue to face. I trust The London Clinic and all the dedicated professionals that work there implicitly and I know I’ll be comfortable and well looked after when I’m in their care.
DR T’s PERSPECTIVE...
Mark was referred to me after moving to London. He’d already had a terrible time developing Crohn’s disease in his late teens and despite the outstanding care he’d received at the Royal Berkshire and John Radcliffe hospitals, Mark had not responded to any of the standard treatments.
He’d had loads of steroids, he’d failed immunotherapy and didn’t respond to infliximab, which was the first biological agent to become available.
Mark is a very stoical guy and he’s had a lot to put up with. He’d had extensive surgery even before he came to us at The London Clinic. Since then, he has undergone elective surgery to remove his colon and its admirable how he just takes all of this in his stride!
Over the last few years Mark’s been going in the right direction. He’s now responding well to biologics and his disease has stabilised. Biologics are now standard care in difficult cases like Mark’s.
In my professional lifetime they have helped significantly reduce the number of patients I’ve referred to my surgical colleagues to operate on. If they’d been available 10 years earlier, Mark may not have lost his colon.
The London Clinic is well-placed to help people like Mark. At The London Clinic we are fortunate to be able to offer state-of-the-art investigation and treatment. Even for Crohn’s patients who need acute treatment, we can provide specialist urgent care and get them admitted very quickly to see the right experts.
Crohn’s flare-ups can happen at any time and it’s reassuring for patients of The London Clinic to know that they can contact us at any time to rearrange or make appointments or voice a concern.
My colleagues here are all very experienced and are excellent diagnosticians and surgeons. They have a thorough understanding of what modern treatment can achieve, in terms of restoration of wellbeing and quality of life.
Our aim is to influence the natural pathology of the disease, using innovative therapies and approaches to help our patients live as normal a life as possible and, where we can, avoid surgical intervention.
Identifying and treating Crohn’s early can help slow its progression and prevent more damage. Unfortunately, the symptoms of Crohn’s can easily be mistaken for other conditions and diagnosis can be challenging.
Many people present in primary care with symptoms of abdominal pain and diarrhoea but there are several warning signs to look out for that may suggest further investigation is warranted such as rectal bleeding and unexplained weight loss.
If testing identifies faecal calprotectin, and reveals that a patient is also mildly anaemic or has iron or B12 deficiencies, then it is probably worth a referral to a gastroenterologist.
The future is looking brighter for people with Crohn’s. With more and more pharmaceutical agents becoming available, the armoury of therapies for Crohn’s is far more extensive than it was 25 years ago.
With new research helping to further our understanding we are increasingly able to control the disease and avoid complicated surgery for many people.
Any views expressed in this article are those of the featured consultant(s) and should not be considered to be the views or official policy of The London Clinic
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