Treading carefully: anorexia nervosa and gastroparesis

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.

Been a while...

I can't believe I last posted in August... Since then, a lot has happened for me:

1. I've moved out into my own apartment, by the riverside.
2. I was diagnosed with a severe gastroparesis.
3. I passed the year as a merit student.
4. I was diagnosed with autonomic dysfunction and a persistent low blood pressure.
5. 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. 

Reality

I'm pretty sure everyone reaches a point where they feel like they have no choice but to be upfront, honest and real with themselves, and to everyone else. Whatever it is, and whoever you are, there must have been a time in life when you've had to stop the "brave face" and just acknowledge and face a situation.

For me, I think that time is now, or is about to be upon me. I haven't written a personal update post for quite a while, and I think this post will be one of those.

As far as my osteomyelitis goes, the surgery I had in June seems to have worked - or at least stopped any infection from spreading. I still have pain, and it still burns, but it radiates less and the joint is more stable. However, it's gone wrong in a way that I never thought nor expected it would.

Because of the debridement, there was less bone remaining on the right side of the bone than the left side. And because of infection, my wires had to be removed earlier than the time that bone fusion took place (and they were removed sans prior X-ray). Post-wire-removal, the distal fragment has moved, towards the right side, and subsequently fused, leaving the joint at a 30* angle. Now, it needs to be fused again because of the poor result. I won't go much into my surgeon and what exactly happened, but I'm left feeling disappointed and deflated at how things have gone. How many more "last time" surgeries will I have? How many more people will I have to seek out before finding one who can really do this?

I'm hoping that my old surgeons can rescue this, now that the osteomyelitis is at bay. They were unwilling to do the surgery as it wasn't their super-specialty to deal with osteomyelitis. Now, I need a "simple" fusion. It just sucks so much to feel like this. I've dropped my coping mechanisms and am a combination of upset, frustrated and disappointed that I'm in this situation. I'm facing the situation with a real mindset and I can't deny that I feel really rubbish about what's going on, because surgery for me is a big deal because of my bleeding. Not to mention that I'm losing weight again and my GI tract has been giving me real trouble lately.

I hate feeling so down about things, because I'm not that kind of person. I'm sure this is a phase I'll get through, but for now, these are my raw feelings. It's just one of those "why me?" moments, when I feel just a bit more negative than normal.