17th Aug 2018 Gastroparesis and Lupus - Gut motility disorders

Well... I never thought I'd be feeding Elise mush. Mush, liquid meals and mush. I felt like Robin Hood with my big plastic bag over my shoulder, leaving the hospital taking the booty - lots of Resource drinks to tie Elise over to next week (it was heavy). For those who don't work at a nursing home or hospital - Resource drinks are for people who can't eat or don't absorb much.

Today the dietitian from the hospital rang to setup a special account so we can get them cheaper - $2.90 each normally - she is on 2/day. This reduced to $1 or $1.30 depending on the flavour. Elise likens them to strong cordial, so she dilutes it 50/50 with water. Apparently, peach and wildberry flavour are the go, chocolate is OK, the rest are vile (Elise's opinion after spitting out a coffee flavoured one, it was pretty bad). The drink is high energy,  with electrolytes and supplements. Low fat and fibre.

I am learning a new term - gastroparesis. It really is a general term which doesn't indicate exactly where or why Elise's GI system (gastrointestinal system) isn't working much. While we were waiting for a gastroscopy .... Elise on the bed and me looking smart in my surgical cap ... I asked the senior Gastroenterologist some questions. Actually I grilled him because it was my only chance. Usually we just see the ward junior Gastroenterologist and they pass everything by him for decisions - cheaper that way. Fortunately we will see him at clinic. Anyway, I didn't miss the opportunity for every question I could think of, he was very patient as he waited to cart Elise off to theatre.

Yes, the Lupus is probably the cause, Elise's Lupus seems to love the nervous system and the GI system has plenty of nerves. So nerve damage probably everywhere - stomach, small intestine, colon, esophagus. However, if the stomach works...most of it follows. The new drug - Motilium or domperidone is a dopamine antagonist - it works by blocking the nausea signals and stimulating the stomach. So far it is working, she is eating probably 50% of normal intake.

The stomach empties usually in about 1.5hrs. So for gastroscopies you usually fast overnight. If the stomach still has food in it after 4hrs, then you may have gastroparesis. Well, after about 16hrs fasting Elise still had some food in the stomach - definitely a problem.

So in comes the mush.

If you have a GI motility disorder, you have to have a low fat, low fibre diet. Small meals, about 5-6 times per day. Fat and fibre slow the stomach emptying down and increase nausea. Ideally a soft, mushy diet - lots of soup, liquid meals, nibbly things. I am trying to be balanced and are ignoring the low fibre idea somewhat - some fibre is necessary... otherwise the other end will have another problem.

Then comes in the protein shakes.

Limiting food with a vegetarian diet, means not enough protein. So we are experimenting with shakes.

When I carried my booty out from the hospital, I digested the news Elise told me. When she was in hospital school before I collected her, the maths teacher revealed that she had diabetes type 1 and gastroparesis. They had a great chat about medications... comparing notes and problems. God really knows when to reach out and touch someone.

In summary, Elise seems to be picking up. She has more energy, went to school for a full day today and managed, is cracking jokes and can eat. Things to rejoice about.

10th Aug 2018 When eating is tricky

Finally, I had a good night's sleep after several days of troubled tossing and turning. Pushing the send button... a text to Monash Children's Hospital, was a huge weight off my mind. Now it was someone else's problem and I could relax.

This morning Elise sat at the table, head down, strawberry in hand... "I'm just too full, I can't eat it mum." Mum... "well, maybe later you can try again."

Elise managed just two strawberries for breakfast, half a glass of fruit juice and a few water crackers till lunch. It was better than nothing. The rest of the day followed a similar pattern.

Eating, it just isn't that hard... but it is when you're always full, feel nauseous when you eat anything and if you push it, it may be returned to you.

So Elise has been in hospital for 5 days now, drinking lots of meal replacement drinks and answering loads of doctors questions. The problem is, with any serious illness, when you get one, usually more follow. One stressed system overloads another.

Reading the blogs, it makes Elise's experience sound just wonderful (and some of it has been)... but there is another story. A story of struggling every day to get up, to do the basics like eating, dressing, schoolwork. Then there is the other story of social rejection, stunted growth, brain fog that just rolls over her fatigued mind like a smothering blanket and hospital trips after hospital trips. Sometimes I just hope that life will stabilise... all our lives, so we can move on... more than survival mode. Maybe... we pray.

After 2 days of super sweet liquid meals, Elise started really perking up. I noticed it straight away when I arrived at the hospital day 2... the note.

 The note said it all. Rita...you are late :-(  Well, Elise is back, an organised list, dry humour, energy to write it and get the letters down on the page correctly and neatly. Something she has found difficult lately.

From a medical point of view, Elise's gut (stomach and probably small intestine) aren't functioning properly. Lupus damage, probably. Spinal damage, maybe. The food just isn't moving down and just sits around for a while, meaning that she feels full and can't eat. Sometimes labelled Gastroparesis (paralysis of the stomach), but it is too early to say whether she will own that label. Eating for Elise has been an ongoing problem since she was diagnosed 3 years ago, probably meaning the Lupus has a lot to blame for this.

She has lost quite a bit of weight and at the moment can't eat anything that requires chewing. Fruit, vegetables... nearly everything. So she's having very wet soup, puree fruit, saltanus, nibbling on crackers and the liquid meal replacements. For some reason, liquids are ok. This is typical of this condition, no idea why.

Yesterday she started a new medicine Motilium, which reduces the fullness feeling, nausea and apparently helps stimulate the muscles to move things along. It may not work, it is the first thing to try. On Monday is scheduled a Gastroscopy to check is everything looks ok. Hopefully by then she will be feeling a bit better.

So that is where we are at, Stuart is taking her on overnight leave from hospital on Saturday down the coast for a much needed change of scene. Then back into hospital to see how things pan out. On a cheerier note, they are keeping her busy in hospital... hospital school each day, art classes and on Tuesday I think she got to paint one of the Hawthorn football club member's fingernail's pink. For everyone else, this was a "wow" moment but as Elise isn't really into football, she wasn't that thrilled!

Stu put together a little video of the snow trip:

https://photos.app.goo.gl/cUtS46ncp7bh8uoZ8