Last updated: Monday November 5th, 2018
Hi! My name is Diane and I am suffering from Neuro Plexopathy, (among other things mentioned below).
Necrotising Pancreatitis and Diabetes and Ileostomies! Oh My!
In 2008, my life was forever changed when a gallstone turned rogue and somehow had a beef with my pancreas, so it decided to wage war against it. As a result, I was rushed to the hospital with a really serious case of acute Necrotizing Pancreatitis. So serious, that the doctors gave me a 6% chance of survival as several of my internal organs were starting to die. To say I was in critical condition would be an understatement. Obviously miracles do happen because I’m here today writing this. ;)
5 months later, after a month long coma, 1 night in an Icelandic hospital, 1 medical plane ride to Canada and 11 major surgeries, I was finally released from the hospital. Coming home was rough, though. I had to learn how to walk again. The pancreatitis had left me with only 15% of my pancreas left, which caused me to develop Type 1 Diabetes. Since 9 of my 11 surgeries were situated in the same region of my stomach, my abdomen wall collapsed and created an incisional hernia from all of the scar tissue.
During this (and for a year afterward) I had an ileostomy. That is basically a ‘poo bag’. It was weird to poo from my stomach into some bag. Thankfully that wasn’t permanent and I had surgery to reverse it. Now I have a large oval shaped (about 4.5 inches in diameter) scar in remembrance. ;)
My ileostomy (poo bag) and some fresh looking scars circa mid 2009.
The worst was now over and I began the long walk (wheel?) down the road to recovery. Learning how to walk again was quite difficult. Since I was bedridden for almost 4 of those 5 months in the hospital, my feet developed foot drop. Foot drop is basically what is sounds like: my feet were dropped and resembled that of a ballerina’s foot (or so I’d like to think). Trying to walk unbalanced on my toes was beyond hard – even with a walker! And with my weakened muscles and bulging hernia, it made basic tasks, like dressing myself and bathing, next to impossible.
My stomach after the whole aftermath of my 11 surgeries. Where did my belly button go? After all these years, it’s still MIA.
Sepsis and Neuro Plexopathy – Walk Like A Gimpgyptian
Let’s jump to 2013. I still had trouble walking with the foot drop, even with the aid of a walker/cane, and had some numbing neuropathy in my legs. However, I did manage to make a little progress from 2009 (thank goodness!).
In June I had a dental appointment to remove a wisdom tooth. Afterwards, I developed a bad infection from the missing tooth which led to a blood infection (Sepsis). Again, I was hospitalized for a week until the infection was treated and cleared. That week was frightening! I don’t remember several of those days because I was drifting in and out of consciousness. I was told that I kept repeating myself over and over. I also was apparently found laying unconscious in the bathroom because I had been walking around – and falling – and had hit my head on the sink! Ouch!
My swollen face/dark circles as the sepsis was setting in – unbeknownst to me.
When I returned home, I noticed I had even more difficulty walking. I was dizzy and felt nauseous. I started to experience excrutiating pain in my back and legs that prevented me (and everyone in my house) from sleeping at night. I was miserable! Then one day when I stood to go to the washroom, I fell. I just collapsed, my legs simply gave out from right under me. I dropped like a sack of potatoes. I stood up, and collapsed again. Stood up – bam – on the floor again. Repeat several times. I just could not walk, and with the added leg/back pain, I was terrified as to what was happening to me. I was hospitalized again.
My bruised body from falling repeatedly.
The doctors were stumped as to what was wrong with me. I had symptoms similar to one illness, but not enough to diagnose and so on. I had 3 MRI’s, 2 CT’s, numerous tests and a spinal tap, and still no diagnosis. At one point they thought I might have Lupus, and when that was dismissed they gave me an HIV test. I was terrified I had contracted some deadly illness! I knew that on top of my previous medical issues, that it wouldn’t take much to injure me permanently – and fatally.
After two months of putting me through every test known to man, and finding nothing conclusive, I was discharged and referred to another specialist – a neurologist from another hospital. The new neurologist was basically an “end of the line” specialist, which means he was very good at what he did and only saw patients who were in dire situations, similar to mine, that no one could diagnose. After some thorough examinations and tests, I was diagnosed with Plexopathy, which is an auto immune deficiency that makes one lose motor skill function and experience terrible pain and numbness (that’s me!).
Sleepover time! Chillin’ at the hospital with my Hello Kitty comforter.
Today, I am at home using a wheelchair to get around because my motor skills are still somewhat absent. I still have terrible pain in my legs, feet and back and am on hydromorphone in an attempt to lessen it. It still isn’t very effective, but we are currently testing out different dosages to see what works. I am also on a cocktail of other medications, which I hate having to take, but am aware I must do that in order to get better.
Lastly, I have nurses and physiotherapists visiting me at home for small treatments and to perform basic exercises. A personal care worker comes a few times a week to help me bathe and stuff. And let me tell you – there is nothing more humiliating than having a stranger wash your bum. In the hospital you get used to it because of the environment, but at home it’s absolutely embarrassing (and I can’t believe I am actually sharing this detail in public). :/
Gastroparesis – Thy Name is Puke
As if what I was experiencing wasn’t enough for a single human being, in December 2015 I started vomiting each morning after a sip of water or a bite to eat. We went to the ER only to have the doctor send me back home (this was after I was so delirious that I laid down in the ER parking lot – only to have that same doctor help me up and STILL send me home). Naturally, I returned a few hours later via an ambulance – vomiting my brains out.
Waiting to get my Gastric Emptying test done. The test included 2 powdered eggs with 2 pieces of dry toast. You are supposed to eat all of that under 10 minutes (with only 1 sip of water). For someone having difficulty eating, that was a nightmare!
It was then that I was admitted directly into the hospital. I remember very little at this point and woke up about a few days later in some strange room. Apparently, I had slipped into a coma from complications of Gastroparesis and Diabetic Ketoacidosis (DKA) and was transported to St. Joseph’s Hospital to the ICU. I was hooked to every machine ever imaginable and very confused at to what happened. To make matters more confusing, a priest then entered my room and remarked that I looked much better than the dire condition in which he saw me last. That freaked me out because I was thinking, “Why would a priest come visit me? I must have been near death’s door”. And near it I was.
Overcome by the frustrations of not being able to eat and/or drink (Gastroparesis).
And thus my Gastroparesis saga began. During 2016, I was admitted to the hospital a total of 9 times – each visit lasting anywhere from 2-6 weeks. It was not fun. At one point my weight dropped to 116 lbs (which for someone 5’8″ is grossly underweight). But I’ve found if I stick to IV medications, a soft diet (and a 15-20lb weight gain) that this is manageable. And since 2016, I have only been hospitalized twice for Gastro. I will sometimes have attacks at home, but they usually last for only a few hours – and THAT is a major improvement!!!
So a basic summary: I am stuck at home with chronic pain. My social life consists of doctor appointments, home care visits and an IVIG treatment at the hospital a few times a month. Because of the Gastroparesis, I can no longer take oral medication – so I have a PICC line inserted into my arm so I can take my medications via IV. My pain medicine was switched to subcutaneous – or sub q – (a liquid injected under the fat tissue in your thigh/arm). I also am on a soft diet, because many foods (which conflict with the diabetes) will trigger vomiting because my stomach tends to empty very slowly.
But it’s not all bad – being trapped at home let’s me spend more time with my parents, which is always a good thing. I shudder to think where I’d be without their care… :(
And that’s it for now. My back just suddenly started to hurt really badly, so that is a sign that I should not sit here anymore. :D That is my life in a nutshell. I’ve left out a lot of big details, but I’m sure they’ll come out in later entries.
Thank you for reading. Diane.
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