Finally we had an answer and it was time to go back to school. Thirty years ago the reaction of schools was very different to how it is today. At morning assembly they left an empty seat next to me in case other pupils could catch what I had. The same would happen in lessons and for me the very last straw was being dropped from the school sports teams because they thought I wouldn’t be able to cope. They didn’t even ask me how I felt about things; they just took a decision without talking to me. What a difference from that attitude and at the responses of people today. Today a sportsman with ulcerative colitis became captain of the England Rugby Team. Another captained Manchester United and Scotland and another became a 5 time British Olympic rowing gold medallist. None of these people ever let their conditions affect their ambitions in life and that is really the mantra on which I have tried to lead my life.
Being someone who spent much of the next few years in hospital or on very high dosages of steroids, made it very difficult to maintain friendships or keep up with school work. The side effects of steroids made me bloat up and to others I probably looked like someone who had permanent teenage acne. The one thing that I always say to patients of Crohn’s or Colitis is that it is always as much of a mental challenge as a physical one. You learn from an early age that pain does go away but the effect of coping with Crohn’s does not. You can either be a person who lets their illness define them; you can be a continual sufferer of Crohn’s, or you can be a person determined to live your life despite your illness. You can be someone who copes with it. I have always chosen to live my life.
There were times in my working life when I had to leave jobs due to my Crohn’s. In the end I decided not to hide it from employers. Of course I would underplay it and tell them that it was all under control. I guess that I knew if they did ever Google the condition then they could find out the truth but most employers took my word. Having to stop and start a career definitely stopped me progressing up the corporate ladder. Eventually I had to work for myself as it was the best way. At least the boss knew my problems. My Crohn’s though never stopped me travelling to factories in China, making quick trips to Europe, or standing for 5 days at trade exhibitions. Sure I took with my own toilet roll and my case was full of medications; I just feel it is so important to try and get on with things.
Sure you face plenty of barriers. My private health care company stopped covering me pretty quickly. I cannot get critical illness cover at work. Any forms that you have to fill in and state that you have Crohn’s leads to either a massive increase in premiums or an outright no to even starting a policy.
If you move the clock forward 30 years, times have changed enormously. New drugs come on the market at a far greater rate than previously and surgical techniques have advanced massively. I have been unlucky in that prior to my last surgery I had over 20 different operations. My first few were in my late teens/early twenties, where I would lie in bed post-op until the bowel started working again. In my case that could be 4 wks. Now they get you up the day after surgery. Wow what a change. The thought of having to drag yourself out of bed 24hrs after major surgery is perhaps one of the biggest mental challenges you could ever face in your life.
Unfortunately after all my surgeries I found myself with a very short bowel and eventually with intestinal failure. My life at 42, married to an amazing women with 3 wonderful kids, was going to be one on intravenous feeding known as TPN and a relatively restricted daily life. I know that plenty of people cope well on TPN but for me I wanted to be a normal dad running around with the kids and a husband that did everything he could possibly do. I guess that maybe I'm not that good at compromise. I didn’t want to be a long term patient if I could help it.
I had been in hospital for nine months. It was one of the largest, most modern teaching hospitals in England yet despite their skills I had missed my kids’ birthdays and school shows. I hadn’t been able to be a proper husband to my wife and although the family coped amazingly I was determined to get my life back. So what could I do next was my question to the doctors? I was told that a bowel transplant was out of the question, it was still 5 years away. My wife and I decided to get another opinion and off we went, TPN packed, a massive suitcase of drugs and our fingers crossed, to see a doctor in New York.
The doctor spent a full day with us reviewing everything. He had expected to offer me a menu of options but at the end of the day he said the only solution was a bowel transplant. He also said that had I been a patient in the USA I would probably have had it before now. In the USA they seem to place a greater emphasis on quality of life and this doctor could see that we had no quality of life.
After a journey to USA and with our heads spinning with what to do next, my wife and I found ourselves at The Churchill Hospital, Oxford, England, sitting in front of their bowel transplant surgeon and transplant coordinator. Amongst everything he said that day there were 5 words that have stayed with me to this day. "I can change your life". And he has!
The criteria for a bowel transplant are obviously quite strict. However this surgeon, who had been trained in the USA, and his team, placed a great deal of emphasis on quality of life. I still had some line access available to me so technically that could have been a stumbling block. However the clinical director and transplant team placed great emphasis on taking patients who would have a realistic chance of getting a normal life back.
A bowel transplant was not even something we had contemplated but here I was on my journey from Crohn's Disease to a bowel transplant.
I decided that the best way of explaining to friends and family what was happening was to start a daily blog. I was a computer dummy at the time but I gradually realised that blogging was also my therapy. It was my way of telling everyone how I felt especially in the build up to such massive surgery. If you like, it was the start of my journey into social media, and over the last few months I have come to realise how important patient-to-patient interaction is in helping people recover. Patients and their families want to and need to hear that other people have gone through the same as them and in a lot of cases have worse issues.
Late last year I became the 11th patient to have a bowel transplant in Oxford. Nothing can prepare you for such surgery and what you go through afterwards. Without doubt it has been the toughest challenge of my life. You need though several things in order to keep going.
1. Total faith in your transplant team which I still have to this day. My surgery lasted just over 10 hours. The walk to theatre was the worst moment of my life. I gripped my wife's hand so tightly but was determined not to cry as I didn't want to worry her. I knew she was shaking too. I also knew that the next ten hours were going to be even harder for her than me but we both believed in our team and that this surgery could change our lives.
2. You need to have incredible support around you. I couldn't have done this without my wife and kids and without the incredible support of family and friends. Going in to it you feel that you can cope but when you are actually in the thick of things, having people around you to help makes life that bit easier. My wife also took over my blogging whilst I was in hospital. Again it started as a way of keeping everyone updated but also it became a source of therapy and a way of letting off steam. Slowly but surely the numbers reading the blog began to grow.
3. This is the final component but is without doubt the hardest. You need mental strength. When you are told that the whole journey might take up to a year with ups and downs on the way you think, yes I can do that. It is very different when you are in the middle of it and having the mental strength to keep going and to help boost each other is so important.
As the weeks went by I started to improve and after 3 months I left hospital. By that stage I began to realise that my blog was being viewed around the world. I made a conscious decision that aside from keeping everyone informed of my progress, I wanted it to be a vehicle to help others. To let other Crohn’s and Colitis patients out there know that there were people who knew what they were going through and also to explain what a bowel transplant is and the effect it has on you and your family. I am simply the unlucky one who has been through more than most but I hope that my experiences can inspire others to stop feeling that having an incurable chronic condition is not the end of their life. I now spend 2 or 3 hours each day talking through social media to patients all over the world.
Quickly I realised that members of my medical team were also reading it to keep up to date with my progress but better still they were telling other medical students to have a read so that they could understand what transplant was really like. I am now very privileged to be involved with a number of Crohn's/Colitis/bowel transplant patient forums around the world. I have met some amazing people. I now use Twitter and Facebook and various other social media sites, and I even pinned a picture of my Stoma on Pinterest which became one of the most talked about pictures on the site.
Frustratingly I am unable to be with you today as I am here in hospital recovering from various infections. The IMPACT survey commissioned by the EFCCA is absolutely essential in understanding what we as IBD patients go through and how to improve our quality of lives. Information is essential. For my own part I really believe that in this current world social media can and should play an important part in patient recovery. I am in a very fortunate position to talk to people in both Western and Eastern Europe; in USA and Canada, in Russia, India and China, and once you take away the language barrier and strip everything back we all want the same thing - The right to have a decent quality of life. There still seems a big difference to what medications we all take. Much of this is obviously governed by finance and healthcare systems. In the UK although Crohn’s is a chronic condition I am not entitled to free prescriptions for my medications. Even now as a transplant patient I am still not entitled to free meds yet I have to take life sustaining drugs on a daily basis for the rest of my life.
If you would like to read my blog then please go to: http://beingapatient.blogspot.com or follow me on twitter @mjseres or http://www.facebook.com/groups/bdoneglobalfamily/
Thank you
Michael Seres
