"My journey from Crohn's, via bowel transplant, to normal life....."
About: NHS Blood and Transplant NHS Blood and Transplant
Posted by QPR (as ),
Sunday 2 September 2012
From crohn's via a bowel transplant to normal life
How do you define normal life? I'm pretty sure that my idea of normal life will be different from yours. When you are recovering from long term illness and major surgery the phrase that keeps popping up is "don't worry you will soon be back to a normal life. "
After having a major setback a couple of weeks ago I have now been able to have some unbroken time at home and return to that phrase "normal life. " Now that I've had my stoma reversed going to the toilet has taken on a whole new meaning. Somewhat frustratingly though I still can't always control when I am going to go and stepping in to the shower at 3am is still a relatively regular occurrence. I know that things will settle down sometime soon but it isn't always as quickly as I would like and I can feel the frustration brewing inside me at times. Like everyone I have my good days and my not such good days at the moment, though I think some of my not such good days are as much trying to cope mentally as my frustrations with the physical problems.
Whether it is as a result of my crohn's, my intestinal failure even my bowel transplant if I'm perfectly honest I have days now when I wake up feeling worn out by it all. I just want a normal life but as I said earlier what is normal? I mean the football season has started and my team qpr have lost 2/3 games which I guess is normal for them. I'd like seeing them winning a trophy to be normal but that would be more like a miracle.
I can always rely on my kids to inspire me and shake me out of a strop. Thankfully our eldest Aaron did very well in his GCSE exams. Yes some of you will still remember the old "O" levels and these exams are the equivalent. We all went out on the weekend to celebrate and it was so lovely to be a family again celebrating something for a change. Watching my daughter consume a pizza in record time sounds silly but actually it was fab.
A few days later we had our first proper day out in ages. We decided to go up to a museum to see a tour that never happened. (usual incompetencies) From there we went to Westminster and walked along the river. I was more knackered that you could imagine but it was so important for all of us to have this day out and be a "normal" family again. By mid afternoon I was flagging but loving it. So many things that we just take for granted in life become very important again after you haven't had them for a while. We sat and shared a plate of nachos whilst sitting on a boat anchored near the Houses of Parliament. For me it was an ideal place to drop my anchor and just take stock of how lucky I really am. A few jokes about the new bicycles that are now part of London life and we headed for home.
Throughout all of this dehydration has still continued to bother me. I am putting litres in on most days. Yes I still have the odd spoilt child, I can't be bothered strop. Something isn't quite right and my mouth is constantly very dry. The issue of the haematoma at the site of the stoma has not yet cleared and is flipping painful and then there is the saga of having this Mickey tube fitted. I know that I talked about having it done in the last post but the ability of the NHS to coordinate two doctor's diaries continues to amaze and frustrate me. In fact don't get me started as I can feel a rant coming on. Suffice to say, it hasn't happened yet.
So there you have it, my attempt to get back to normal but I am still not sure what that normal is actually meant to be. I have never wanted to be a person defined by my illness yet I know I am bowel transplant patient and that has to have an impact on my life. Right now I am trying to work out how all the pieces in the jigsaw that is my life fit together. The one thing that I am passionate about is using my experience to help others. For me that will always be part of my normal life.
Till the next time
reading my blog. www.beingapatient.blogspot.com