Would it really smell as sweet?
I want to preface this post with the headline that there is good news contained within. It is a long, long while since I have had something really positive to share, so I am going to enjoy every second of the process.
You may remember when Nelly first appeared on the scene, I had my own predictions that we would have parted company and gone our separate ways within a few months. In my mind, it was to be something of a quick-fix. Little did I know. Here we are, exactly six months on, and Nelly looks set to stay indefinitely.
I am, perhaps surprisingly, okay with this. In part, because I have grown so used to life with a tube, but also because I know that Nelly is doing its job.
The reduction in symptoms was almost immediate; I went from half-hourly doses of morphine every single day, to very sporadic need for such strong opiates within the first couple of days with Nelly. After about thirteen weeks, it started becoming easier to eat, and I felt sick far less frequently. Around the five month mark, I really started to notice myself gaining weight.
Then there were the results of the capsule endoscopy test I had recently. This is just baffling to me, the way medicine has advanced even within my lifetime. Earlier this month, I went along to hospital, having made sure to starve myself for twenty hours, and swallowed a rather large, flashing capsule. I had visions of eighties movie, Innerspace, picturing tiny scientists piloting a spacecraft through my intestine.
The reality was far less exciting. There was actually just a tablet and a digital receiver pack that bore a striking resemblance to some kind of bomb gear. Let’s just say: I’m lucky to be a white female, as nobody batted an eyelid at the contraption I was wearing.
So, over the course of eight hours, photographs of my innards were being rapidly snapped and stored in order to be examined and analysed by a team of professionals.
An Unfamiliar Word
Just at the end of last week, Lovelyman and I went along to the hospital. It was time to see my consultant and see what was what. The first hurdle was the weigh-in but I knew I was doing alright on that score. I’ve been doing my own weekly weigh-in so we can keep a close eye on any fluctuations, so that was all fine.
We were called in. We’ve been here so many times before, and there is always something bad. There have been varying degrees of badness, but never anything other than bad. So you can imagine our surprise when the consultant began by telling us that the endoscopy results were great.
I’m sorry? What?
The photographs that were taken showed my bowel to be healthier than it’s ever been. We are more on top of the Crohn’s than we have been at any point in the thirty-three years since diagnosis, and things are under control.
As if all that wasn’t enough, the consultant went on to use a word I have never even dreamed would refer to me. She said that enteral feeding had done exactly what she had hoped it would, and induced remission.
Both Lovelyman and I sat waiting for the but and when it didn’t come, we went into a gently shell-shocked state. That was more than we had ever dared to hope for. We had read about the use of tube feeding in severely ill IBD patients, and had found case studies detailing patients who reached remission within two weeks. Yet, we had never allowed ourselves to imagine that we might share the same success. For us, the tube was being put in to help me gain weight, build myself back up and give my intestine a rest.
This was more than we could really process, and we spent the rest of the day in and out of disbelief. Could that really have been my appointment? Did she use that word for me?
What does it really mean?
I suppose here’s the rose by any other name conundrum.
It is a common misconception, that to be in remission means to be cured. Such is our propensity for attaching even greater meaning to words, particularly those with a medical basis, than is actually deserved.
Of course, I know that isn’t the case. Even if I hadn’t spent the last three out of five nights, awake in abject pain, I would know because I really can’t ever hope for a cure for my Crohn’s. The very nature of the disease is that it is incurable. So the best I can hope for, is this period of respite.
I keep having to reassure my mum when she asks: But why are you still in such bad pain? First of all, I explain, the pain now is nothing compared to the pain I had. And secondly, I still have Crohn’s Disease.
What the dictionary says
Remission : a temporary diminution of the severity of disease or pain.
The way I see it, I’d better make the most of it for as long as it flipping well lasts.
And, as for the roses by other names, I happen to think they would smell every bit as sweet. Any way you dress this up. Nelly is working. After well over seven years of on-going chronically active disease, six months with Nelly has put me back on the straight and narrow. Believe me when I say – I intend to stay here, with or without Nelly.