My biggest frustration of late has been the speed of output through my stoma. I am trying very hard to continue to get out and about and in some cases venture further a field than normal but the one thing you can't legislate for is the gurgle, then........ Well it's like pulling the plug out of a full bath, the water pours out and within 20 seconds I can have 300-400 mls in the bag. Oh and to top it all no real warning. You would think that my stoma could at least have the courtesy of tapping me on the shoulder before pulling the plug or even gurgle for half an hour just to alert me. Does this happen to any of you? As you can tell from my opening statement, time management isn't my forte but I am now an expert on hotel toilets and train stations that have easy access facilities. I always wanted a specialist subject on quiz nights and now I have found it. Joking aside though planning where you can stop off is the only way to have piece of mind in these instances.
I have also been learning more about the relationship between my head and my gut. I started talking about this last week and I have to say that I have gone from complete sceptic to someone who now does understand that you need both to work in unison. The only way I could start to understand things was by going back to basics. Most of us, especially those with IBD will get butterflies in their stomach when they are nervous or when they are going through a stressful situation. Well there is the link. Your brain is telling you one thing and your intestines will react in a way that isn't great for you. So even an old fashioned boring old fart like me, who always believed that if you have a medical problem only a medical solution will solve things, now understands that once the medical treatment is underway there are other things you can explore to help you as well. It is a times like this that I need to turn to President Bartlett for advice. You remember him? My boss from the show The West Wing (yes I still think I am Sam Seabourne) he would know what to say.
The new feed that I have been taking has also had interesting effects. The plus side is that I don't have to stay on an enteral feed for 15 hrs as I now have the regime down to about 6 hrs. The down side is that it definitely stimulates more stoma output during the time it's on. What I could really do with is a sort of internal time switch that would regulate the times more evenly. Instead I get a feed that kid of treats my insides as a toilet unblocker or a drain cleaner and as soon as it goes in the pipes unblock very quickly. Come to think of it maybe it is domestos for the intestine. Whilst the overall volume across the day remains constant, domestos doesn't just kill all known germs dead; it flushes them out faster than Usain Bolt can get out of his starting blocks.
Talking of Mr Bolt it leads me perfectly on to London 2012 Olympics. See how I smoothly moved this post in a different direction..... Yes today I received my official torch bearers uniform and confirmed time of 2.05pm on 8th July. Now it's actually getting very exciting. I knew that it was a huge honour to have been chosen but with just over a week to go it now feels real. I have said it before and I mean it I am simply lucky to be the front man on this occassion for all of us who cope with bowel disease and bowel transplant. Hopefully by me walking it can raise awareness of everything we all have to go through on a daily basis. Couldn't resist the attached photo. Ignore the face I can't do anything about that and have a look at the pyjama top I am going to wear.
I am extremely proud of the fact that our own on line community is growing and helping so many people. There is still time to join us at http://www.facebook.com/groups/bdoneglobalfamily/ In healthcare today patient to patient interaction is growing at fantastic pace. We may not have the medical knowlege or skills that geniuses such as my transplant surgeon have. However we do have real life experience and that can be just as powerful tool for patients and their families as the medications people need to take.
Ok enough from me. I know I am making progress along this bowel transplant journey. There are times though when I get very fed up of being a patient. I know I still have a personal battle to overcome in trying to reduce my anti sickness meds. In truth I am doing something about this but don't want the pressure hanging over me with a specific time frame. It is a huge challenge to overcome and in a sense there is a race to get it done before my picc line either burst, gets infected or clogs up and has to be taken out. Going cold turkey doesn't appeal, that is something usually reserved for boxing day and the left overs after a christmas meal.
Catch up soon, I promise! Don't sigh you know you like it really.