So... What's been happening?

My life has completely changed since my last post in September. Here's some form of an update. Today is also New Years Eve: so I wish the best health and happiness to everyone. My resolution last year was to 'not be as sick'- which I obviously couldn't keep. So this year, my resolution is to write more frequently. To fundraise even more for charities that matter to me. and to be better at raising awareness about disability. 

I set up this survey for a cool lil blogpost I'm writing in the new year- if you haven't already, I'd appreciate as much responses to this as possible [though it's not as pressing as a survey for a dissertation!]. If you've already done the survey, thank you. 

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Switching on my laptop for the first time has made me incredibly sad.

In one set of internet tabs is everything I was looking at the day before I went into hospital: some webpages about surrogacy agreements, a source list, the library search bar- once showing a long list of resources, books, journal articles- but now showing an error message in bright red, timed out over two months ago. In another window is youtube, a three hour loop of Paw Patrol clips, paused of course. My laptop one of the only sources of entertainment for my sister who just turned three, staying in my small flat filled with legal textbooks, not children’s toys.

On the 24^th of October, I was in Glasgow getting a tattoo. On the 25^th of October, I collapsed and my GP admitted me into hospital. ‘Just for the weekend’. I hadn’t eaten a full meal in about three weeks- not on purpose. In September, I began feeling uncontrollably sick after eating. What I was eating would come back up. I would have a slice of pizza, and be uncomfortable for the rest of the night, as if I had the full £30 deal from Dominos all to myself, in one sitting. I was being sick, and my routine blood tests showed slight inflammation. That bloody crohn’s I was thinking when will it ever go into remission? I was admitted onto the acute assessment unit with a bag of fluids, and the gastroenterologist on call was my own, Doctor Cotton. He came to see me, guessed that it was the crohn’s- knowing that I wasn’t fully in remission since I had returned to Dundee, and admitted me onto the gastro ward, to be seen by the consultants in the morning.

I stayed there until December. I was discharged on my seventh week in the hospital.

What we thought was my crohn’s was completely different: a severe case of gastroparesis. This literally means ‘stomach paralysis’- food, and drink, sits in my stomach. It doesn’t digest, it doesn’t move into the bowel, it sits. And potentially ferments. Which isn’t something your body wants to digest. Dr Cotton and the majority of his colleagues were expecting this result, but my emptying time was severely delayed, worse than they were expecting. The normal gastric emptying time for the test I undertook is 60-90 minutes. A lot of people who will be diagnosed with gastroparesis will have somewhere around 160 minutes- nearly double the ‘normal’ slower emptying time. Mine was 603 minutes. Over ten hours- ten times as long as it should be. 

Here are a couple of photos of gastric emptying scans- the test I had to diagnose my gastroparesis. The test involves eating some radioactive scrambled eggs, and having x-ray style photos taken at regular intervals. Funny story: six hours after my scan, I vomited, and it was the radioactive eggs. This was just more evidence to confirm my condition to Dr Cotton.  I have taken these photos from this blog, and they are not mine.

A normal Gastric Emptying scan- radioactivity has moved from the stomach to the intestines

An abnormal gastric emptying scan- the radioactivity is still in the stomach. My images probably looked something like this, but darker, as nothing had moved from my stomach at all. 

My life would probably never be the same, Dr Cotton said. He handed me an information booklet, with a recommended diet, foods to avoid included cheese, vegetables, fruits, porridge, meats. The food I would be allowed to eat was very bland, somewhat processed; as long as there’s low fat, low fibre. But that’s if I would be able to move onto food. First, we would do a clear diet- a stock cube, essentially. Then maybe soups. And if I managed that, we could blend and puree food. He referred me to the dietician.

Fuck.

That’s not right.

We tried to work with this- some medications can speed up gastric emptying time. One medication gave me really low mood, bad mood swings, dissociation- which isn’t good when you’ve just been given a potentially life long diagnosis- telling you you’re not allowed cheese anymore when you live for cheeseboards. Another I had already been on for months, because of my Crohn’s. Another we couldn’t try, because I had already tried it for chronic pain and it caused my chronic migraines. We settled on an antibiotic, but one day I vomited after eating my clear soup, and the bright red tablet was floating in it- two hours after the medicine round. We moved onto the liquid form of this antibiotic.  There’s no other medical way to deal with this condition.

I still couldn’t tolerate my food though. And I was still losing weight rapidly. Nearly a third of my bodyweight.

By my fifth week in hospital, I was dropping quickly even though I wasn’t going anywhere. I was sick and tired of being on Ward 2, but if I left the ward, I’d have to return quickly because stars would start clouding my vision. I had outstayed everybody else, almost all the nurses knew me or knew of me. And I was losing strength to even talk. So, I came to a decision that I didn’t want to make, ever in my life.

I opted for a nasogastric feeding tube. Temporary measure, hopefully, to get me home. This was something I had been warned against since my first week. On the second day of me being in hospital, I spoke to a lady with Crohn’s who had been started on TPN- nutrition straight to the heart- and spoke about how scared I was of living such a strange way of life. She agreed. Nutrition support puts you in an awful mindset. You would be dead if you lived a hundred years ago. Natural selection would wipe you out. For the nasogastric tube, actual insertion of it is traumatic. I was sick on the student nurse, and then it came out- so it had to be placed again. The student nurse didn’t come in the second time. I don’t blame her.

Whether artificial nutrition will be temporary for me, we’ll have to see. I came home and my dietician suggested placing a surgical feeding tube, because we aren’t making much progress with my oral intake. I’m utterly terrified. I know girls who’ve lived in hospital for months and months and months. One girl has the combination of EDS-Gastroparesis-Crohn’s. Now she’s experiencing full intestinal failure. The idea that this could be my life- my future, is absolutely terrifying.

I am of course so grateful for modern medicine- it saved my life when my electrolyte levels were too low- and it’s still keeping me alive, by giving me my nutritional needs. But what is life when you’re connected to a pump for 20 hours a day, unable to study or work, getting little more than a sip of liquid an hour, and this might be life for the rest of my life? It’s not the worst thing that can happen, there are sicker people, but if I disconnected my ‘feed’ and didn’t put another one back on- within a few days or weeks I would be dead. Does that make me one of the sicker people?

Nearly two months in a hospital bed seems to suggest that.

I can’t comprehend just how ill I have been. Just how ill I am. Telling this to my dietician, she says that’s understandable. “You were probably quite out of it. People who are malnourished don’t know they’re malnourished.” I nearly died. It’s wild. A big meme. But it’s not funny.

My whole life was put onto hold- I return to uni next September. Even though I had a half-written surrogacy essay to submit a few days after my admission.

There’s nothing I can do about it- except try to get better. And even then, I don’t know how to do that. It’s a waiting game. Maybe my stomach will kick in soon, and I’ll tolerate some soup, or even my feed at a rate that means I can just run it overnight. But I’ll never sit down to a regular sized meal again. And maybe I’ll never tolerate food again, or my feed at a normal rate. Who knows? My doctors certainly don’t.

What a meme.

The NHS saved my life in November, and continue to now. I owe so much to the ward 2 nurses and staff for working hard, giving up their breaks and staying for overtime, for missing meals and time with their families. For the conversations that made me feel somewhat normal. For carrying and measuring countless sick bowls, keeping an eye on my intake and my electrolytes to make sure there weren't more sudden severe drops. For looking out for my mental state. And for remembering that its the liquid paracetamol I can swallow. 
If only every single person appreciated the service as much as I do, it would be treated with the proper respect from patients and politicians alike.