Bowel Transplant wise it has mirrored our British summer and been a mixed bag. Come to think of it aside from the last few days I would have settled for a mixed bag weather wise the truth is it's been like the inside of my stoma bag........
As far as eating goes things are definitely improving, I am trying more foods and am slightly more adventurous than I have been. Mind you I still can't stand cooked broccoli much to the annoyance of my wife who told me that my reaction to her putting a piece on my plate was worse than a baby's. It's not as if I'm giving you poisen she exclaimed! Might as well have been in my mind though.
My frustration with food is that it seems to recycle in to my stoma bag within 30 minutes. Some might say that is a good way of keeping the food bill down but my concerns have been about how much is being absorbed and therefore how much nutrition I am actually keeping inside me. Although my weight hasn't had a dramatic falls it hasn't had any dramatic or even tiny increases. I am still on an enteral feed and also on these pro biotic shots so my calorie in take is pretty good per day therefore in my little (and I emphasise the word little) brain I should be gaining weight. Yes I know it doesn't always work like that but hey you can't blame a man for trying. My dietician isn't worried so maybe I shouldn't be. I think that is the trouble that sometimes with bowel disease so much comes in to play on a daily basis that can affect your nutrtional levels, rates of absorbtion and other factors. So even though I have been a patient for so long and think I know my body in truth there are still many unanswered questions.
I have been on a different antibiotics for the last couple of weeks again addressing the bacterial issues. I haven't noticed any real changes though and I am constantly being told and reassured that these things can take months. I am a man on a mission to try and get back to normal life as quickly as possible so knowing things can take months is really just another mental battle to overcome rather than a physical one. Bizzaely as things improve so on occassions the mental challenge becomes harder. You know what it's like once you taste a bit of something you haven't had in a long time when it then gets taken away, or in my case when a few bad days creep in, it isn't always easy to keep going. Mind you I should be used to it being a QPR fan. So much to look forward to when we win again and I dream of back to back victories only to lose the next three.
So finally the sun arrives in England. We all feel better! Men and women walk the streets at 8am in anticipation that the temperature will rise further wearing clothing that would usually be associated with lying on the beach. What do I do? Start to dehydrate. Flipping typical. There I could be walking down the high street in my David Beckham sarong, flip flops on and baseball cap titled at 45 degrees with the label still on the peak, instead I am putting in around 4 litres of fluid a day through my pej with a rucksack hanging off my shoulder. I know how important staying hydrated is for the normal person so when you are a Crohnie and bowel transplant patient the emphasis is even greater. Yes, I know it is so typically British to moan but it does get frustrating that when the sun is out and I should be chilling or as my daughter says "chillaxing" I'm chucking fluids in to keep my shiny new bowel hydrated. Actually as I write this I can still hear my wife's voice in my head going "why aren't you drinking, why is that glass not empty?" In truth she is right but there is only so much a man can drink...
My hydration issues and absorbtion problems should help when I have my ileostomy reversed. I'd love to tell you when that will be but I still don't know. My transplant surgeon wants the colorectal surgeon in with him so coordinating diaries is proving tricky.Why?.....hey it's the NHS.
Away from my body issues life has been pretty good. I have just been awarded an E-Patient scholarship to attend a conference at Stanford University in late September, something that I am incredibly excited about. It will be a chance to meet other exceptional people and talk about the future of patient to patient interaction and the use of social media in healthcare whilst at the same time shaing my own experiences.
Finally before you nod off; oh you have already, well wake up as I want to mention something incredible important to me. Last Sunday was the finish of our 3rd Paris to London charity bike ride raising money for research in to Crohn's and Colitis. It is called Guts In Motion and there is a link to the right of this page. Click on it, I dare you!
This year the ride has so far raised over 90,000 and in three years has raised approximately 250,000. It is generally supported by sponsors which ensures that every single penny goes directly in to research and patient programmes. We spend nothing on admin. Whilst I am incredibly luck to be the chair of the charity, 4 inspirational and truly incredible friends help make this happen. You know what, no matter how tough you may think things get to be blessed with such incredible friends as my family and I is the most wonderful feeling. Paul, Andy, Bern and Perry - thank you for helping turn my dream in to a reality.