From Crohns disease to a bowel transplant being a patient isn't easy-170112

We have been trying to work out what my calorie in take is per day to see whether when we meet the dietitian that things are definitely going in the right direction towards reducing my reliance on the feed. That though raises so many questions. Some foods go in and then seem to come straight out, does that mean I still retain a few calories or was that meal useless? I reckon that one day I could have up to 500 calories but the next day it might be down to 200. Again should we be amortising the total amount over say a week or again does it not really work like that? Also the feed obviously contains many other nutrients, how do I know whether I am getting these from the food I eat? Thankfully we are seeing the resident brilliant dietitian on Wednesday so hopefully all of these questions will be answered.

Aside from food I am trying to do a little more around the house. Hopefully my overall strength is picking up and the steroids seem to be doing their job in making my face more puffy which people feel suits me. Unfortunately they also cause a few rashes to appear and although I doubt it is the steroids my hair has started to thin out again. I don't think total baldness would suit me so if it does get worse I might have to trawl the net looking for a good hair extension kit. My wife will probably look for a new model entirely.

I think that my ulcers are improving a bit which might indicate that they were from the 2nd anti rejection drug. On the other hand they are still bleeding quite a bit so we will have to see if the surgeon wants to take a biopsy. I know that I am due a scope and biopsy this week anyhow so maybe he will take them from multiple sites in the bowel.

Somehow we have got past the three month mark which is a real milestone. Potentially only nine months to go and my stoma could be reversed. That is probably thinking to far ahead but I can't wait for that to happen. The siting of my stoma is relatively low which means that I can't work out how I can wear anything other than trackie bottoms. I can't wear my trousers below the bag as you would have the horrid site of seeing my underwear and bum. I can't put the waist band at the correct level as it would be right over the stoma and hurt and can you imagine if I had my waist band above the stoma, it would be like wearing my trousers under my arm pits. Only Simon Cowell can get a way with that. I have tweeted and googled to ask other patients what they do but it seems their stomas are a bit higher so they can wear the trousers just below it. Someone did mention baggy trousers and a set of braces. Takes me back to the film Wall Street when braces were the rage. Trouble is that was about ten years ago and I pride myself on being a trendy dad, despite what my kids think. So if you have any ideas please let me know.

Please forgive me for constantly putting up our charity bike ride with my blogs. I am trying to encourage as many of you as possible to ride.

Till tomorrow

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