Well I have been home from hospital now for 2 days. It is very weird when you come back after such a long absence. You think that life stays still and waits for you but in reality things just carry on. In my bubble of bowel transplant world these last few weeks have been some of the hardest to get through. Initially I thought that I would be in for a few days and as you all know one thing led to another and five weeks later I came home.
Physically you deal with things, pain, infections etc they get sorted. It just felt on one large mental roller coaster and actually this time I think it hit Justine pretty hard too. The ups and downs never stop, it really is like supporting QPR. Oh and by the way we did stay up this season!! The saving grace has really been our kids. They are three incredible children. One of the proudest things I heard was that the school had spoken to Justine and said that unfortunately they were used to tough family situations and having to watch out for different kids and their reactions. They did though single out our three for being incredibly level headed, lovely kids to teach and very unaffected by what they have had to go through. Yes I had the bowel transplant because I was fast running out of options but time and time again I have clung to the belief that I am doing this for Justine and the kids just to get back to an ordinary boring normal life. Believe me it is worth every moment of pain to come back to your family and just see them smile when you walk in. Mind you, I lost control of the TV remote inside one hour and once the hugs were over life just drifted back to normal; which is exactly as I would have wanted it too.
Coming home this time, has though, been stranger than before. Why? Well this time my stomach is open for business and this new transplanted bowel is expecting some serious action. What you somehow forget is that if you haven't eaten properly for 3 years then you don't just open the tap again. Apart from taking it slowly the thought of actually eating food doesn't enter my mind. It feels a bit like I need to reboot the part of my brain that says eat. Luckily I have a wife who will appear in front of me at regular intervals with a plate and a bit of food on it. My nutritionist said cake is a very good start and so far I have had two cakes baked for me in two days, how many slices can a man eat? Actually as i am typing this I can hear shouting in the kitchen, sounds like one cake has gone badly wrong. Guess you can't get the staff these days.
The strangest part is just not being sick after eating. It just doesn't happen at the moment. What a fantastic feeling that is, bizarre but fantastic. I am also though still on my enteral feed and over night fluids so with a bit of luck I should be starting to gain a bit of weight. I'm guessing that the team at Oxford knew that it was going to feel strange. I had a text from the surgeon and email from dietitian inside 24 hrs of being home just checking up on me.
The other thing about being home is that there are no typical NHS stories to tell you. I don't sit in our hallway waiting for transport to arrive three hours late and so far (to my knowledge) no one has tried to mix radioactive liquid with my food. And, I don't walk in to a room and watch my kids line their soft drinks up on the window sill and then put on hand cream. Actually I have no good gossip to share. Unless of course you would count my daughter having a tantrum over the dress she was wearing for a party. She chose it, she put it on and then she decided she looked terrible. See- definitely not as good as radioactive eggs!!
As most of you know, I do seem to spend a bit of time on social media but over the last few days with extra good reason. May 19th was World IBD Day and as you can imagine that has huge meaning in my life. Living with an inflammatory bowel disease for 31/43 years is a long long time. For me it really is a chance to try and raise awareness of these incurable debilitating disease, say thank you to those who have helped me and most importantly encourage others who are going through similar problems to me. I really want people to know that you can live a great life despite the hiccups.
My usual tweeting to every celebrity under the sun got a few responses and re tweet but perhaps not as many as I would have liked. We then decided that it was the perfect moment to try and bring together as many people as we could from around the world with a connection to bowel disease. We set up a facebook group called Bowel Disease One Global Family.Currently we have 500+ family members so if you want to join please do so. You are all welcome.
It is so inspiring reading what other people have been up to and very humbling to hear all the stories. Believe me this global family is going places, each and every one of them are heroes and heroines. I feel very lucky to be in some small way part of all of your lives.
My personal inspirations remain my wife Justine and kids Aaron, Nathan and Lauren. Oh and all together please wish Aaron good luck with his GCSE exams. He did 4 last week and has 6 more exams this week.
I can't let this post finish without though mentioning Oxford. I have been told that I can tell you who the transplant coordinator is so please say hello to Lydia Smith (who, if a bowel transplant is a serious option you should contact at The Churchill Hospital,Oxford); but how cannot I not talk about Marion, undoubtedly the world's expert in nutrition pre and post bowel transplant and the kindest genius surgeon you could wish for in Anil. These guys already have and continue to change my life for the better. For me there would be no better tribute to them on World IBD day then to recover quickly and get back to normality. As one of my twitter friends said "what actually is normality?"
Right, it is almost time for dinner. Maybe a bit of ice cream tonight. Not sure if we have Ben and Jerrys but I have been informed by my kids that there is a screwball waiting for me in the freezer. Not sure if they were referring to me or if it really is the name of an ice cream.
Till next time