From Crohns Disease to a Bowel Transplant how did it happen?
Posted Apr 28 2012 6:25pm
I suffered with Crohns Disease for 30 years and after over 20 operations I ended up with intestinal failure. I recently became the 11th person to have a small bowel transplant, at Churchill Hospital in Oxford. Post transplant I am learning to eat again and am on a feeding regime that goes via a tube directly in to my new bowel. I inject myself 6 times a day with anti sickness drugs. Having the transplant was the hardest thing I have ever been through but it has given me the chance of having a normal life again. Being a patient isn’t easy.
I have charted my story in a blog in the hope that it can help other patients and their families. The blog can be found at http://beingapatient.blogspot.com However this is the latest post that I hope is of interest to you.
Today feels for the first time as if I have gone backwards since my bowel transplant. As you know my original picc line burst and I had been waiting for a few days before I could get a new one inserted.
I get my lunch time anti sickness injections about 1.15pm and sure enough we started them on time and the vein tissued (medical term for basically collapsed vein). This meant that the canular had to come out. It was my 3rd one in about 4 days and my veins have been getting harder and harder to find.
As luck would have it, or so I thought, the team inserting my new picc line arrived by 1.45pm and so the new line could be put in and my meds could then be given in what would only be around 45min late. It transpired that putting in the line took longer than planned. No one's fault but finding the right vein on the ultra sound equipment wasn't so easy. About 2.30pm the line was finally in and all I needed was an x ray to check that it was in the right place.
After waiting for a porter for ages I ended up walking to x ray to check the line. Getting a doctor to review the x ray was easy as they were all on the ward when I got back.
I was about an hour and a half later than I was supposed to be with my iv meds so to say I felt sick was an absolute understatement.
Finally I get told that the line is 6cm too far in. Not a problem I thought. 4 hours after my meds are due, with me totally fed up I try and find someone to do it. What am I then told. Sorry we can't do it, the line team have to. When are they coming I ask? Not sure is the response but it should be in office hours. By now I had been sick twice and had over 400ml of output and counting.
To say I'm fed up is an understatement. You know that it is not really like me to ever moan about my second home but for me this has really been an administrative shambles. My nurse has been great trying to sort things out but surely someone more senior could have helped.
I think also that it is my frustrations from the last few days also boiling over. I was told a couple of days ago that in all likelihood my Stoma reversal would be delayed. My levels of nutrition are not good enough and if I had the reversal soon it would be much harder to correct the levels post reversal. I am caught between a rock and a hard place. I need the Stoma reversal to bring my colon in to play as it will help to absorb fluids and my surgeon is keen to do this quickly. On the otherhand as well as nutritional issues I also have bugs in my system and therefore joining right now my old colon with my new transplanted bowel could cause bugs to move around my system and make it harder to treat them.
On top of that is my stomach issues. I am now scheduled to have botox injections. However these can't be done straight away as the stomach needs settle from the dilatation.
As you can see it all gets a bit complicated trying to fit all the pieces of my transplant puzzle together.
Right now I am due home over the weekend but have been given lots to do. My feed now has to increase in both volume and rate per hour. This means that it will now be on for 15hrs a day. Every 4 hours I have to squirt pancreatic enzimes in to the bowel as this should help keep the right nutritional elements in the gut. Finally I also have to push in over a litre in fluid to try and stay hydrated.
I know that it will all be worth it in the end but right now the end does seem a bit of a distance away. Still let's focus on the positives, I will be home soon to my family and the infections are improving.
Sorry for the rant I just needed to get it off my chest. Who ever said that a bowel transplant was easy.