From Crohns disease to a bowel transplant being a patient isn't easy-240312 (From St Albans & Harpenden Review)
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From Crohns disease to a bowel transplant being a patient isn't easy-240312
It has been a few days since I last updated you from bowel transplant HQ. I was back at Oxford yesterday for a further scope and biopsy. I have realised that I often says these words and some of you may not realise what that actually involves. Well a scope is basically a camera that goes in through the opening in my stoma and down about 10cm in to the new bowel. They look at the villae in the bowel and in layman terms, in other words my language, if the villae look all separated and almost individual then it means they are healthy. As far as the biopsy is concerned a further lead it pushed through down the side of the camera and you can see it in the bowel. They then grab and pull a tiny bit of the bowel out which is then put on a little glass slide and sent off for testing. It is actually amazing that the most minute piece of bowel can so far been able to say that I had mild rejection, that I have a bacterial problem and most important that it is healthy. Apologies if this already known to so many of you but some people have asked me not to assume everyone knows exactly what I am talking about.
Prior to the scope a series of bloods are always taken and from those they can check that all the appropriate levels are ok and whether my anti rejection dug levels are ok.
That was a brief summary of the two main things that get done pretty much every time I go. However in the build up to this visit our main concern had been my stomach and the fact that it wasn't working so well. I had the barium swallow which had shown a problem and had been texting my surgeon back and forth about our worries. I felt that for both Justine and my sake we needed a plan of action. There I was with this new transplanted bowel but I couldn't get enough food or drink down to it. I guess it was kind of like having this amazing new Aston Martin in the garage but you can't work out how to open to put the petrol in. Actually maybe that was a bit of a random analogy but you get my meaning.
Throughout my whole transplant journey I tried to be very honest and open about each step of the way. Before this visit it felt that I was entering perhaps the hardest mental challenge of the whole process and I know that Justine felt the same way. Although generally everything has kept going in the right direction when you live through it you don't notice any dramatic changes on a daily basis. It becomes very challenging mentally, very tough to keep positive, keep the spirits up and just focus on the big picture. I found that I was beginning to fall in to a rut. I ended up getting up at the same time most days, taking the dog out at similar times, sitting in the same chair and basically becoming a bit stale. That may sound odd when you are recovering from something so major but truthfully these mental battles are the hardest to overcome. It also gets harder for the family. In a way watching you recover from ten hours of surgery and go through everything you do in hospital is almost something you expect to happen. However when you start to get better but are not yet well enough to resume normal life it is very tough. Inevitable arguments occur, frustrations come out and some of the time you lose a bit of your perspective on life.
For me, as Justine reminded me, I have had Crohn's since the age of 12. Yesterday I reached the very young age of 43 and of course it was only right and proper to celebrate with my nearest and dearest, the transplant team at Oxford. Since the age of 12 I had been used to stays in hospital, recovering and getting back to normal, then hospital again and so it went on but this latest episode has effectively been 2 years and 1 month of constant medical stuff with no "normal" time in the middle. That is a long period for any family family to cope with. Believe me I know there are plenty of people who have it far worse than me so I am not complaining, I guess what I am simply trying to articulate is that is becomes tough mentally as well a physically.
So bringing all of that back to my stomach, the fact that it was causing us such concern was simply a real pressure cooker of emotions building up. I have to say that it felt like my surgeon and the transplant team knew this and when we eventually arrived on the ward we actually didn't have to say a word he had a plan for everything. His feeling was that my stomach issues had actually probably been around for a very long time. Basically the muscles at the bottom of the stomach where it empties in to the intestine had become increasingly thick. So if I put anything of any volume down it can't really go down anywhere so I just bring it up. At the time of my transplant my intestine was so matted down and blocked that it had failed and was never going to work again so that even if occasionally the stomach did work and let things through they couldn't go anywhere so I was just sick continually.
The plan to correct this now makes complete sense. We are reducing quickly all the things that slow down the gut such as loperimide so see if that has any effect at all. Assuming it doesn't then there is a relatively new procedure whereby a balloon can be put down in to the end part of the stomach and the muscles thinned out so far that effectively they can fall back on themselves. This should make an immediate difference. It is a procedure that may need to be done a few more times in the future but we went away very happy to have a plan in place. I think that is all you need. Being a patient isn't easy and you constantly need to feel that there is a goal to aim for or a plan of action in place. For me that is what keeps me going and I think for my family to know that there are solutions makes life a great deal easier.
So that was plan one. The next plan is an earlier stoma reversal than I had thought. This is simply because I cannot absorb enough of my fluid and I need the colon to help me. I only have half my colon left so it won't be a completely perfect solution but it will at least help. In the meantime it is all about stopping me getting dehydrated but injecting more fluids through my tube in to the bowel and hoping I can avoid going back on the drip.
Apologies if today has been a bit of a long one but there was loads to catch up on. Hope I didn't bore you too much.
Catch up again very soon x