In June 2011, I almost died from pancreatitis. Then for the next decade I was extremely ill, to the point of being disabled. This is my story.
At the end of June 2011 I woke up one day with the worst pain imaginable in my stomach, to the point where I could barely even breathe. I was supposed to work that morning but I was in way too much pain so I told my boss something was wrong and that I couldn’t work right now as I was going to have to go to the hospital because I knew something wasn’t right. As I was doing this, Madison (13 at the time) took her little brother, Wes (9 at the time) to school and then ran back home to help me. By the time she got home, I could barely talk or breathe or function, my husband was at work in Toronto (which is about 2 hours away) and he’d CARPOOLED to work, so he couldn’t just come home and take me to the hospital, so Madison called 911 and then called a family friend to come meet us at the hospital.
In the ambulance, I threw up and was in immense pain, but they got me to the hospital in more or less one piece, and when I got to the emergency room, they immediately hooked me up to an IV and fed me morphine and then they gave me a CAT scan and an x-ray and they came to the conclusion that it was pancreatitis. Pancreatitis like I had only occurs for two reasons: alcohol and gallstones. I don’t drink, so in my case it was a rogue gallstone that had lodged in my common bile duct (which is shared between the gallbladder and the pancreas), which made my pancreas inflame. They said that pancreatitis goes two ways: it either clears up really fast or it goes south really fast. The treatment for pancreatitis is basically starvation. If you don’t eat anything, the pancreas doesn’t have to process anything, so by starving yourself, you give the pancreas a rest and the inflammation goes down, so that’s what they decided to do.
While all this was going on, my husband, Blake, took a subway, then a bus, then a cab to where his car was parked and THEN he got to the hospital. It took him like, 6 hours to get there. Meanwhile, our family friend, Ronny, had taken Madison back home and they picked Wes up from school on the way and Ronny just looked after them until Blake got home from the hospital.
At about 10:30pm, Blake got a frantic call from the hospital saying that he had to come now because they didn’t know if I was going to make it through the night. They told him to come say goodbye. 😢 Remember when I said that pancreatitis could go south really fast? Well that’s what happened to me.
When Blake got to the hospital, I wasn’t breathing on my own and they were trying to insert a central line, which is a big IV in the neck. Our little local hospital basically couldn’t deal with what was going on with me, my respiratory system was crashing fast, and the bigger hospital closest to us couldn’t either, so they loaded me up in an ambulance and drove me to a big, scary hospital in Toronto called St. Mike’s, which is a pretty big fucking deal. Like, you know if someone is at St. Mike’s, they’re knocking on death’s door.
I don’t remember St. Mike’s though, because I spent from June 25th-July 25th completely unconscious. I was intubated, which means I had a breathing tube down my throat because I couldn’t breathe on my own, and I was tied down and sedated because I kept trying to pull the breathing tube out. This is apparently instinct and everyone does it, except in my case, I succeeded more often than not.
When I was in the ICU at St. Mike’s, they wouldn’t let me eat or drink anything because the pancreas had to rest. Instead, I was fed through a tube in my nose that bypassed my stomach and went straight to…actually I’m not even sure, I just know that it bypassed the digestive system to give the pancreas a rest. I had this feeding tube until mid-August. Also while I was in the ICU, they said I was probably the sickest person there, which is pretty scary considering where I was. They said that 70% of people who were as sick as I was with what I had, died.
With pancreatitis, there is often an issue with fluid building up in the body and this fluid compresses the lungs, making breathing extremely difficult and in my case, almost impossible and almost fatal. At the time I got sick, I weighed probably between 150-160 lbs but with all the fluid that was collecting in my body, I weighed 220 lbs. On July 5th, they had to do something drastic to save my life, so what they did was cut me right up the middle of my belly to extract this fluid. Right off the top, they extracted 4 litres of fluid, which is TWO big bottles of pop worth! I’m not sure how they did it, but they continued collecting fluid through this big wound in my belly until the swelling in my body went down considerably, then they dressed the wound with something called a “vac”, which is this foam that is covered by plastic and then a vacuum is attached to the middle of it and fluid is sucked through the vacuum and collected in a little canister which they hooked at the end of my bed. I would have this dressing until the beginning of October, changed every Monday, Wednesday and Friday.
During this time, my kidneys failed so I had to have 8 hours of dialysis per day. They didn’t know why they failed, they just did and then 2 weeks later, they just started working again. The body is weird, man, we know so little about how it works.
At the end of July, on the 25th, I had improved enough that I could be moved to a hospital closer to home, so I was transferred by ambulance to Royal Victoria Hospital (RVH) in Barrie, Ontario, which is about 35 minutes from our house. I would be put in the ICU of course, and since I had no recollection of ANYTHING that happened at St. Mike’s, when I woke up in RVH and Blake and my mom told me everything that had happened and that I’d missed an entire month of my life, I just cried. I still cry even thinking about it because it was just so goddamn scary and my mom and Blake and my kids went through so much, not knowing if they were going to get a call one day saying that I’d passed away.
Pancreatitis = Tracheotomy
So in the ICU at RVH I still had the feeding tube, although this one went straight into my stomach, and I had the vac dressing on my abdominal wound and I had a trache, which I’m going to explain in case you don’t know what it is: A tracheotomy is when they punch a hole through your throat and hook it up to oxygen because you can’t breathe on your own. The one that I had initially at RVH didn’t allow me to speak, so I had to mouth my questions to Blake and my mom, about what had happened at St. Mike’s. I was so drugged up that I couldn’t write, so that wasn’t an option either. Eventually they would put in place two other traches, one that allowed me to speak like an android and then one that allowed me to speak normally, and then none at all.
When I was first at RVH, they wouldn’t let me eat or drink anything, but after a while they took the feeding tube out of my nose and allowed me to eat things that were a pudding consistency because since I hadn’t eaten anything in so long, there was a danger of choking. I couldn’t even have water because it was too liquid. After a while of that, they did a test to see if I could swallow solid foods and they found that I could, so solid foods were added to the menu, which I was grateful for. They also gave me all the water and Coke I could drink.
I still had the vac dressing, which got changed every Monday, Wednesday and Friday and one day I convinced a nurse to take a picture of the wound with my cell phone. Here it is if you want to see it, but I’m warning you that it’s pretty gross and graphic:
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I was on a LOT of drugs, including high dosages of morphine, so a lot of my hospital time is pretty much a blur, but two weeks after being transferred to RVH’s ICU, they moved me to a general surgery floor because I had improved so much. This was a very good, very surprising thing because at St. Mike’s they said I wouldn’t be out of the hospital until Christmas, but I sure showed them! The problem though, was that I couldn’t walk. I hadn’t used my legs in almost 2 months so I had to re-learn how to walk, which was a long, really frustrating process. I had to walk with a walker on wheels until mid-October.
Finally on August 25th (I don’t know what it is with hospital personnel and the 25th of the month), they let me go home. It was almost 2 months to the day of when Madison had called 911 and I was eager to go home. Once home, a nurse would come to the house every other day to change my vac dressing and to make sure I was doing okay.
The vac dressing came off around the beginning of October (I think), which was fantastic because it really sucked carrying around a canister of fluid everywhere you went, especially since I kept dropping the unit and almost broke it many times.
When they cut me open though, they cut through the muscles of my abdomen so they herniated and my guts were all out of place and swollen. I got crazy stomach pain because of this, which is why I was still on the morphine.
To make matters worse, due to poor nutrition (because my guts were so screwed up, until recently I would throw up just about anything I put down, so essentially I was bulimic), my hair started falling out. A LOT. In chunks. I still have a bald spot on the back of my head.
The good news though, was that my wound was healing really well. Up until a couple of weeks prior to writing this, a nurse would come every day to clean the wound and change the dressing, but now Blake does that every other day and a nurse, named Siske, comes Monday, Wednesday and Friday to also clean the wound and change the dressing and just to make sure that it’s healing okay. We had a setback where the new tissue started breaking down due to too much moisture, but that seems to have been corrected by using different material to dress the wound.
Believe it or not, this is a REALLY REALLY condensed version of everything that happened, but I’m trying to keep it as brief as possible.
UPDATE: 13/10/2012
On the July long weekend, I was in the hospital (again) due to a pancreatic attack and they did a CAT scan on my abdomen and as it turned out, the pseudo-cysts were gone from my pancreas so that meant I didn’t need the procedure to drain them anymore and my surgeon, the brilliant Dr. Hanrahan, could go ahead and repair my hernia and put my guts all back in place. The surgery was officially called “repair of massive ventral hernia with mesh/component separation + cholecystectomy” which meant that they would be putting in something called a “Cook’s mesh” and sewing my stomach muscles to it to hold them together. They would also be removing my gallbladder.
So on (I believe) July 19th they did the surgery and I was in the hospital for a few days (which was torture!) and then I came home and had a homecare nurse named Cheryl looking after me until the middle of September.
Here’s a video of me having the drains in my abdomen removed a few weeks after surgery:
Now I have a 9 inch long scar vertically down my abdomen and a deformed bellybutton because I was insistent that they leave me one as…and this is cheesy, my MOM was attached to me there, and that was kind of important to me.
I’m always going to have a protruding stomach because they couldn’t put my guts ALL back where they were supposed to go since they all kinda got used to being where they were for a year. When I was sick, my abdomen looked like I was about 8 months pregnant or more but now I look maybe 3 from the side if I suck in my stomach muscles, which I can now do because of the mesh inside me!
I have pancreatic enzymes I take when I eat greasy foods or meat which helps prevent future pancreatic attacks and I’m happy to report that the July long weekend was my last episode and I’ve been experimenting with foods I used to eat since then now that I have these enzymes. Unfortunately my system is now super sensitive so I have to be careful. The last pancreatic attack was triggered by the radioactive stuff they injected into me when they were doing a test on my kidneys for example, so something as simple as even a flu shot could send me to the hospital and make me very very sick so I have to be careful.
But all in all, health-wise, I’m feeling pretty good. I should probably start doing sit ups to strengthen the stomach muscles attached to the mesh but I’m not a particularly active person so I’m not sure how realistic that is. I do plan to resume yoga once our instructor has an opening for us and it’s financially feasible.
It’s been a long, painful journey, but finally life is starting to normalize and that’s a very good thing. Oh, and I got my job back. Only part-time (I was full-time before), but that suits me fine.
UPDATE: 14/01/2014
So after surgery, things were going pretty good and I started yoga again and things were getting back on track and I even got up to the point where I could have one or two alcoholic drinks maybe once a week with dinner or something without any pancreatic repercussions. This made me cocky. I’m not much of a drinker. I don’t see the point in drinking and not getting drunk. And when my birthday rolled around, the first birthday I would actually be able to celebrate in a really long fucking time, I decided to get completely shitfaced. I had a great time and one hell of a hangover. Three days later I was in the hospital with a full blown pancreatic attack and ever since, heartburn, nausea and vomiting have become a daily part of my life because every time you have a pancreatic attack, your pancreas is being damaged further. I didn’t know that. If I don’t keep those three things under control through diet and drugs, a pancreatic attack will follow, which will require at the bare minimum 3-4 days worth of hydromorph contin, fasting and vomiting. Fun, yeah? This is called chronic pancreatitis.
I’ve tried every anti-nausea medication both prescription and over the counter that is available in this country and none of them work. My heartburn medication works, but is very expensive. But when the anti-nausea meds don’t work, YOU THROW UP! So there goes all my other meds, including my bipolar meds which I require to keep a firm grip on reality.
After almost a year of this I decided to try marijuana as a medicine. I had been an on again/off again recreational user before I got sick so I knew what to expect as far as being stoned, but I didn’t expect to feel better within one minute of smoking a bowl (of a pipe) during the tail end of a pancreatic attack.
It’s cheaper than all of the anti-nausea meds (that don’t work), it’s cheaper than my heartburn medication (that I don’t need if I smoke cannabis), um, IT WORKS, and best of all I can’t throw it up.
After a few months of experimenting with different strains (types) of cannabis and figuring out what worked for me and what didn’t, I went to my doctor, said everything I said here and he wrote me a prescription for medical marijuana, which is legal in Canada. So if you see me discussing cannabis or marijuana or pot or weed or la la la or whatever term you prefer, that would be why.
Update 07/07/2020:
It’s now been 9 years since my initial pancreatitis that almost killed me and truly fucked up my life. I basically have to be a vegetarian now, with meat saved for special occasions, because if I don’t, my pancreas freaks out and I get a pancreatitis flare up, which sucks. I have to take pancreatic enzymes with almost every meal, so my pancreas has to work less. One sip of wine can easily put me in the hospital because my pancreas is so sensitive to alcohol. Stress can cause great illness.
During a pancreatic attack/flare up, I vomit green bile and any water I’ve taken for hours. I dehydrate *fast*. I have these oral strips called Zofran that you put under your tongue and they taste awful, but being sublingual, I can’t throw them up. The problem is, they don’t always work. During all of this, I am in the worst imaginable pain. It feels like a hot, steel rod being shoved right through my solar plexus and radiating out my back and it feels worse when I breathe in. It is 10,000x more painful than childbirth or endometriosis. Doctors have told me pancreatitis is the most pain a human being can be in and I believe them. Surgeons even have a rule about the pancreas because it’s such a sensitive organ, they say, “don’t fuck with the pancreas,”. My surgeon told me that and then I also saw it in an episode of Grey’s Anatomy.
My pancreas is so damaged that if I didn’t make serious dietary changes and start taking enzymes, I was looking at life with a feeding tube. It’s all still really new, so right now I pretty much live on raw veggies and cheese because those are the only things I know for sure are safe.
Right now I’ve been able to stay out of the hospital for 4 months, so hopefully this trend continues.
Update 21/10/2023:
I was diagnosed with type 1 diabetes in April 2021, during an emergency room visit. I was there because I was having bad pain on my left side, which turned out to be an abscess they think was caused by scarring where my mesh was stitched in, when they fixed my abdomen in 2012. They drained the abscess, put me on antibiotics, and referred me to an endocrinologist.
You would think since I almost died from pancreatitis, then had chronic pancreatitis that left me disabled for a decade, that I would have already seen an endocrinologist, but no, I had never seen one before. Sadly, if the hospital or my family doctor would have hooked me up with one when I originally got out of the hospital in 2011, I probably could have avoided a lot of everything above, and almost certainly could have avoided damaging my pancreas so much that it stopped making insulin. 😢 I somehow slipped through the cracks and I’m pretty angry about it because it makes issues with Canada’s healthcare system pretty glaring. (Please vote NDP! 🙏🧡)
When I was diagnosed with diabetes, my A1C – the amount of glucose (sugar) in my blood over a 90 day period – was 32 mmol/L. “Normal” is between 4-7 mmol/L. “Good” for a diabetic is under 10 mmol/L. 😕 My endocrinologist told me my kidneys and liver were shutting down, and I was close to needing dialysis. During COVID about 50% of my hair fell out, and he said that was why. Due to my marriage turning upside down, combined with an eating disorder, all I was eating was candy, and I was down to 100 lbs. If the universe hadn’t have intervened with that abscess, I probably would have rotted in my house from the inside out, until it was too late to do anything. Being agoraphobic and rarely leaving the house for 20 years, I’m not even exaggerating. ☹️
People are always surprised to hear I’m a new diabetic, because usually type 1 diabetics are born this way and diagnosed as children, but I like to put the qualifier “new” on it, so people don’t expect me to be an expert or to have it totally under control.
I take 2 different types of insulin:
Long-Acting: stays in my system 24/7 and keeps my baseline blood sugar under 10 mmol/L. One needle/same dose every night at 11pm.
Rapid-Acting: stays in my system for 3 hours. One needle every time I eat to avoid blood sugar spikes. Dose depends on what my blood sugar reading is before I eat, and the amount and type of food I’m eating. I read a lot of labels and do a lot of math. 😅 (I’m also bad at math and wrong a lot, so I overdose myself on this one constantly.)
Giving myself injections was a learning curve for someone who’s deathly afraid of needles, but with my partner Harry’s help, I got used to it. I still can’t watch a vaccine being given, or someone giving me a blood test, though. 😬
My last A1C was 6.1, and I’m currently a “perfect” (to me) 120 lbs. (I’m 5’1, so this means my eating disorder is under control, which is essential for a diabetic). I don’t eat a lot of dumb stuff anymore, compared to how I’ve eaten my whole life, because often doing a needle and potentially dealing with low blood sugar after, isn’t worth whatever tasty thing is in front of me. That said, frozen peanut butter cups are still essential to my well-being, have the same amount of carbs in them as a juice box, and you will have to pry them from my cold, dead hands. 😤 Also, when I have low blood sugar, peanut butter cups and 5-Alive juice boxes are my go-tos for bumping up because they have the same, predictable amount of carbs in them. Juice boxes, being liquid sugar, are fastest; peanut butter cups work slower but keep my blood sugar up longer. So, sometimes it really is my medical imperative to eat peanut butter cups! 🤷🏼♀️😁