So as I have said, I had to be re-admitted into hospital for a second time. I was absolutely distraught as I felt like my body was simply not playing the game despite being given all of the tools to be able to do to so!
I was first admitted onto I believe AMUH which is more of a transitionary ward and so I knew that I was going to be moving off this ward but I spent a couple of nights there I believe… I am writing this blog a couple of weeks after hospital and so I can’t quite remember. I was lucky enough to have my own room in AMUH as well as I was going to the toilet a lot again. If I am totally honest my second time in hospital was much the same as my time in hospital the first time only with different nurses!
This time however the consultants were a little bit more serious about my condition as I was no longer responding to the oral steroids. I was put straight back on IV steroids and waited for the Consultant to come and see me. This time when he came round the conversation was ever so slightly more severe (well it felt that way in my head anyway). This time he was talking about the use of immunosuppressants, needing to start on Ciclosporin ASAP and also partly started discussing the need for surgery in a lot more depth. The idea of surgery for me as a 26 year old woman was scary, with the idea of a stoma being even more scary. He was giving me all sorts of descriptions of the surgeries that I might have to have and which bits they would need to remove. Being majorly uneducated in all of this, I didn’t really know what he was talking about and it was overwhelming.
Before surgery though, there were other options and as I have said, I was continuously asking the Consultant for whether there were more options before having surgery.
I was put on a 24 hour infusion of Ciclosporin which is an immunosuppressant. This meant more IV access which as previously discussed, my body is not a fan of. I then had to have a pole with me at all time with a tube that went into my arm giving me medication. This had to be changed every 6 hours as apparently the medication is that potent that it starts to rot away at the tube. If it is doing that to plastic tubing, what is it doing to the inside of my body?!
The infusion seemed to work very quickly and the symptoms seemed to go away, no more blood, toilet attacks were a lot less frequent, I was feeling a lot better.
The infusion was highly inconvenient, I had to take the pole with me wherever I went (I certainly got some looks in WHSmith!) and it beeped a lot and needed to be plugged into the wall. I kept saying that I felt like some sort of superhero before they become super. They usually get filled with some kind of noxious chemical before they become super!
The Ciclosporin seemed to work and I was doing well on that and the steroids but as with all of these things, would the change from IV to Oral steroids cause problems and we would be back to square one?…
After a full 48 hours on the infusion of Ciclosporin, I was moved onto the oral medications. The tablets are huge and they smell absolutely disgusting as well, they smell like weed in fact. Due to the problems that I had previously moving to oral medication, they kept me in the hospital for a longer time to make sure that there were no ill effects. By this point I really wanted to get home but I was also aware of how quickly it can go downhill and so I stuck it out and didn’t complain (too much) about the extended time in the hospital. As we all kept our fingers crossed for no ill effects from the change in medication, I held my breath to see whether we finally had something that would work.
I made it through to being allowed home and finally I was discharged into the outside world. What an ordeal it had all been though!