Health Blogs | Crohn's Disease


June 22nd, 2012 by michael seres
It has been a bit of a funny week in my bowel transplant world. I went back to Oxford on Wednesday for an MOT but really came away with more of an oil change a few spark plugs replaced as opposed to the full service. What I mean by that is I didn't have a scope and biopsy but did have long discussions with the dietitian and transplant coordinator over changing my enteral feeding regime and trying to tinker with my medication routines. Does that make a bit more sense now? Probably not but humour me anyway.

For me the biggest breakthrough will come when I can reduce my reliance on enteral feeding and not have to walk around with a rucksack and feeding tube for 15 hrs. However the transplant team have slightly different thoughts as to what breakthroughs they would like to see. Ideally for them it would be the removal of my picc line and therefore a reduction in my dependence on anti sickness medication 3 times a day. So there lies the dilemma that I guess many patients have. What becomes so important to a patient is not necessarily the same priority for a surgeon or your medical team. Given that we are all in this together I suppose it is a bit like a football team. The defence's priority is not to concede goals but the attackers priority is to score loads. Both parties want to win just in slightly different ways. Have I confused you even more now?

The plan of action agreed is to try out a new feed that will give me the same level of nutritional input and calories yet be able to go on for half the time. This is then supplemented by shot drinks to give me a calorie boost. Yes I did say shot, not vodka or tequila but a thick drink that tastes like very strong peanuts.All of this will then free up more time for me. Amazing, fantastic, jumping round the room in delight..........No. The free time is now taken up with up to 2 litres of water a day going down my tube and with each litre 8 sachets of dyralite are added to ensure better absorption. So when you add it all up, compute it on to an excel spreadsheet it works out that I am still on some form of tube feed for 14 hrs a day. So that service that I went in for has saved me the grand total of an hour a day. An hour I hear you shout, yes a whole 60 mins, wow I am a lucky man. I do write this with a degree of sarcasm as the team at Oxford are brilliant and they really are trying to find ways of getting me back to normal life as quickly as possible. I guess we all have days or periods when we get hacked off with things and I think today was just my off day - apologies!!

On a positive note dates are now being looked at for my stoma reversal. Soon Stanley the stoma will be sent to stoma heaven and Ian the intestine will be put back inside where he belongs. Will keep you posted on dates once I know them.

I have been spending a bit of time talking with a lovely lady about the relationship between your mind and your gut or more specifically your connection between your sub conscious and your intestine. A few people that I highly respect have talked about needing to solve emotional and phsycological issues together with the physical medical problems. Only when both are mended can you be fully sorted. For me this whole area has been a real step in to the unknown. It feels like I am jumping out of an aeroplane with no parachute and no idea if I will land in a beautiful green field or a field full of horse poo. It does make sense but it is taking me places that I have never been before and they are not Hawaii or  Mauritius or the Caribbean for a new year break. Let's see how this unfolds.

As you all know I have blabbed on about the state of food in hospitals and patient involvement and I had my very first step in to the world of NHS administration this week. I was asked to join our health care trust's patient group. This group is the over arching body that ensures there is patient involvement in all key decisions of health care here in UK.The government have now made it a priority to ensure that patients views are taking in to account in every aspect of health care. The meeting was definitely an OMG moment! I never ever knew that there were so many committees involved in every single aspect of care. There are even committees that make recommendations to other committees. There are committees that are formed but are not allowed to make any decisions at all. Crikey it is a wonder that anything actually happens, yet in the NHS region where I live we have a fantastic C.O.O and some really amazing people doing amazing work. At the moment I have the enthusiasm of an England fan who has just reached the quarter finals of a major tournament and I feel that I can make a difference. Hey the NHS medically has been very good to me so it is about time I got off my arse and put something back. The thought though of having to wade through a thick treacle of committees doesn't exactly light my fire though. So let's see what happens!

Right time to go. Please do not forget to join our facebook group if you haven't already. We have just crashed through the 800 family member mark. http://www.facebook.com/groups/bdoneglobalfamily/ and if you fancy a look at what Tom Cruise will look like in a few years please check out my You Tube channel http://www.youtube.com/user/michaelseres?feature=mhee.

Catch up soon
< Previous Blog Post
Being a patient isn't easy... 10.45am
Next Blog Post >
8.51pm Being A Patient Isn't Easy

Tags: Crohn's Disease

Post a comment
*HTML and links not allowed in comments