Sunday, 6 April 2014
So it's been a long time since I last posted, and the bygone months have been the most dramatic, jam-packed ones of my life, without a shadow of a doubt. I spent the majority of it in hospital and have since been diagnosed with gastroparesis and intestinal failure.
On 11th December, I was admitted again to the same hospital and the same ward by my gastroenterologist, and stayed there until the end of February when I finally came home as a HPN patient. I still can't believe that "this is me" and that this is nearly the end of the road in terms of what can be done for my quality of life. Looking back and thinking about the things I've lost over the last few months is really difficult and I am sad in more ways than one for the sacrifices I've had to make.
I was tried and tested with nasogastric and nasojejunal tubes, then had a jejunostomy/J-tube placed, which proceeded to be unsuccessful on the nutrition front. I dropped to 38kg, at which point TPN became a life-saving means of treatment and we had no choice but to have a Hickman line placed for this to be initiated. Since then, I have gained about 6kg and although my symptoms are plentiful and extreme at times, I am back at home and enjoying my privacy, peace and quiet.
Gastroparesis and intestinal failure have really torn my life up over the past few months and have forced me to defer my place at university until September. I learned how much I really do love food and how it is the centre of nearly all social gatherings and occasions. I have learnt much more in terms of life and giving back, but I won't go into that for now.
I'll slowly fill my blog in with what's happened over the next few weeks when I'm feeling up to it. At the moment, everything is a struggle, mentally and physically, and even getting up and dressed takes more effort for me than it should. But anyway, just checking in - I am still alive and just about kicking!
Friday, 6 December 2013
Right up until I was diagnosed with severe gastroparesis, I could tell that most, if not all of the doctors I saw suspected that I was anorexic. A few years ago, I was "healthy", albeit quite overweight with a BMI of around 30. In October, it was 19, and today, it's 16.
"Do you exercise excessively?", "Are you afraid of weight gain?", "Do you count calories and restrict your intake?", "Is your self-esteem correlated with your body weight?"
To all these questions, I always say the same thing - no. However, it's difficult, because to some extent, I do restrict my intake, for the very reason that eating too much makes me sick. Of course, I would eat normal portions if I could tolerate it, but because I know what they're getting at, I say no anyway.
I know I've written about prejudice and chronic illness before, but I must reiterate how frustrating it is to want to be somewhere that you can't, just because of people's assumptions.
I must highlight that there is absolutely nothing wrong with being anorexic, and that I'm not trying to make mockery of people who suffer from anorexia nervosa or other eating disorders, but am merely speaking about how it's used as an "easy label". For both anorexia nervosa sufferers and people with gastrointestinal disorders, it's a shame that far too many doctors are so quick to "diagnose" anorexia nervosa.
The sad fact here is that there's nothing that we, as patients, can do about people making assumptions. Assumptions are the reason that I chose to leave my previous gastroenterologist, since he made me very nervous and I was worrying so much before, during and after his appointments that we were never going to get to the bottom of my problems. In fact, there did come a point when I began to wonder if I was indeed anorexic. Here we are, with one of, if not the country's leading doctor of neurogastroenterology, and straight away, he is "teasing" for underlying problems (I quote).
Similarly, what if I just have a small appetite or a super-high metabolic rate? I am certain that there are people in a healthy existence who are slightly underweight but don't have anorexia nervosa. All I'm trying to say here is that while patients with functional and psychological problems may present with similar symptoms, it is not only foolish, but in fact irresponsible, to jump to conclusions and make assumptions.
Thursday, 5 December 2013
I can't believe I last posted in August... Since then, a lot has happened for me:
- I've moved out into my own apartment, by the riverside.
- I was diagnosed with a severe gastroparesis.
- I passed the year as a merit student.
- I was diagnosed with autonomic dysfunction and a persistent low blood pressure.
- I got a new gastroenterologist!
I think that's quite enough for now, even though I'm sure there's more things. I would include the fact that my arthrodesis was unsuccessful, but it's not something that's "happened" as such, more something that hasn't happened!
The best thing for me has been moving out. I do miss my family, but I love it. I live right by the river and there's a beach downstairs, even though it's not the type I can imagine myself sunbathing on!
The biggest thing has been the diagnosis of gastroparesis. I had so much trouble with my old consultant thinking I was anorexic and asking me really leading questions and making clear, assumptive statements about my weight loss. My new gastroenterologist was on the verge of making the same conclusions, but I was saved (even though it's not a good thing) by the gastric emptying study. There was no transit within the timeframe and finally, anorexia is out of the picture. Similarly, I have a colonic dysmotility and a probably small bowel dysmotility too.
Apart from the wobble we had with almost going down the anorexia road, my new gastroenterologist and I get on really well. He is a really lovely person and the centre I go to happens to be a reasonable distance from my home and is also one of very few specialist centres in the country. When I undergo my small bowel manometry and if I do have small bowel dysmotility, then it's likely that parenteral nutrition will be used to bring my weight and nutritional status up. If my small bowel is still functional to some degree, then I think we're looking at jejunal feeding. I think I'll post separately about my feelings towards this, for fear that this post could get too long!
As for my autonomic nervous system... I've started on two new drugs for it and am not really doing much better. They can increase the dose of the latest one, but I have to wait a few weeks to let it really work, before they can adjust it. I love my neurologist too - he's absolutely hilarious and we always end up making jokes and laughing through the appointments, which is always pleasant!
Anyway, my studies haven't been going so well lately. I've taken lots of time off and have so much to catch up on. I've been feeling a bit down, emotionally and physically, but I hope I'll bounce back soon.