From Crohns disease to a bowel transplant being a patient isn't easy - 190112

Despite being completely knackered from taking my daughter to and from her rehearsals every day, my wife somehow dragged herself in to the car and we headed for Oxford. On arrival I had the usual dozen or so test tubes to be filled with my blood. Finally after a couple of goes the lady that somehow manages to sort my veins out had a go and succeeded. Taking bloods isn’t getting any easier. I think that my veins go in to hiding about 5 miles from any hospital.

After bloods it was time to meet the transplant nurse for a quick overview. My weight had remained fairly stable I had dropped a little but thankfully no one was overly worried at this stage. As I am not really able to tolerate the feed they are monitoring my weight to ensure that it stays stable.

From the nurse I then saw the wonderful dietitian who was her usual thorough self. She wanted to go through exactly what I have been eating, what the stoma output is on days with feed on and how it differs when the feed is off. I had to tell her exactly what I am able to drink, and how much water I am able to inject through my feeding tube. My urine output (sorry if that’s too graphic!) is too low at the moment and apparently the wrong colour. No it is not green or blue but the wrong shade. So the first thing that she has asked me to do is to try and inject up to 1.5 litres of water and/or dyralite per day. I need to get my kidneys working better and output should be considerably higher. The only positive is that my bloods don’t show any kidney problems.

As far as the feed goes it is a bit more complicated. The dietitian explained that the bowel is very complex and there are no easy solutions. Having talked to the surgeon it is possible that the 2nd anti rejection drug could have caused the feed to react and increase the output. The combination of both anti rejection drugs, as they suppress the immune system, can cause a lack of absorption in the bowel. Although I have been off the second drug for nearly two weeks the effects can stay in your system for that period of time. This means that they don’t know if it is the feed itself causing me problems or the feed and drug combination. I should know by the weekend when the drug should be out the system. I feel that it is the feed but we need to rule out the first option before changes can be made.

I have been given a trial of a new feed to start on the weekend. This feed gets injected in to my feeding tube at around 100ml per hour. No one can be sure that the new feed will work either. It is more concentrated that my existing feed and the Osmolite (think that is the correct spelling) may increase the output. So it is a bit of a trial. If the new feed doesn’t help my output then I will go back next week and we will look at the next option.

Their attention to detail is amazing and it does give you real confidence in the team every time we go there.

I also saw the surgeon who join our meeting with the dietitian. He checked my stoma and confirmed that the ulcers are at last improving. He took photos of the stoma for his records but decided against the scope today as he didn’t want to upset the bowel anymore by interfering with it. He will let us get the feeding regime right and then will scope and biopsy again in two weeks. Obviously if there are problems before that date then I am to get back in touch and they will see me again.

So the juggling still goes on. I have probably written a lot but not actually said much. That is really because there are no exact answers with the bowel. I am beginning to appreciate how complicated treating the bowel really is and it serves as a constant reminder as to how difficult the bowel transplant really is.

I guess overall things are going in the right direction. It is just there is always a complex issue to solve, at least we know that it will get sorted.

Finally I did query why my hair is thinning out and falling out. This is also due to the immunosuppressants. Eventually my body will get used to them and it should stop. I just need to keep an idea to ensure that my biotin levels remain ok. I guess going bald is preferable to rejection so it is no big deal. As the surgeon said it is worse if you are a lady and I suppose he is right.

Ok it is now time for meds so I will sign off. Hopefully I have explained everything fairly clearly, if not let me know. I’d hate to think that my blog is getting to complicated and starting to bore you all.

Till tomorrow

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