From Crohns disease to a bowel transplant being a patient isn't easy 230212

Anyhow I woke up today feeling a little brighter but still pretty uncomfortable. I guess that by sleeping so much yesterday I had got a little dehydrated but it was off to Oxford for my usual check up. There is one lady in the blood test room, Helen, who is amazing and always seems to find the tiniest of veins. Thankfully she was around today so things weren't too bad in that department for a change. Without Helen its usually 5 prods and then revert to the picc line but today she was there. Only problem is that she is going away again soon - I can feel the bruises starting up already.

After a good catch up with the transplant coordinator it was time to see the dietitian and my surgeon. There was also a visiting dietitian at the hospital today so she was brought in to the discussions just to see if she had any new thoughts. You know that I think they are all great but somehow after each visit they still manage to make me feel like they are in control and will always solve things. We discussed with both the coordinator and the dietitian my problems with food. They both totally understand that this is a long term problem that will eventually solve itself. Shoving food at me or constantly asking what I am eating won't work over time it has to come from me. So one of my homework's over the next couple of weeks is to make myself something, whatever I want, each day and eat it without anyone else suggesting food or making it for me. It is not the volume that matters just the psychological fact of trying to do it myself.

We also discussed the problems with the feed and bacterial overgrowth. The output issues are caused by the bacteria problems and not by the feed itself. The fact that I cannot seem to tolerate the feed is not down to the contents of the feed. In fact I could be eating steak and chips and with the bacteria problem as it is at the moment the output issues would remain. So I am now on a new lot of sachets to take. It may be that they will also have to be joined by antibiotics and eventually the good bacteria will get stronger and the bad bacteria will disappear. That is the theory so I am happy to go with it.

I also had a scope which in general was ok. A few of the vilai in the bowel were not quite perfect but overall the surgeon was satisfied. Hopefully no more scopes for another month!

Another piece of homework is to continue to inject water in to the bowel on a daily basis. It now needs to be 1.5litres per day plus whatever else I can drink myself. My urine output remains relatively low and they just want to ensure that I don't cause any damage to my kidneys.

So as you can see it was a thorough MOT today and now that all my parts have been checked I am good for another two weeks.

One of the things I am discussing with Oxford is to create a bowel transplant support group. I am incredibly lucky to be linked to so many wonderful groups at the moment, it would just be fantastic if I could help and support others who might need to go through what I have been through. Will keep you posted when I know more. In the meantime though it has just been agreed by my kid's school that the Transplant Coordinator will go in to the school and give a talk about transplants and bowel transplants in particular. Am very excited by this and can't wait to see and hear the talk.

Finally here is one image that won't freak you out. One of the main reasons for having the stoma is that it provides access to scope the bowel. This was one of my first scopes. It may look a little blurry but the surgeon knew what he was looking for!

Till tomorrrow x

Readers who submit articles must agree to our terms of use. The content is the sole responsibility of the contributor and is unmoderated. But we will react if anything that breaks the rules comes to our attention. If you wish to complain about this article, contact us here