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. 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 intibated, 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. This is me after removing my breathing tube. I was proud of myself (I was pretty drugged up) for removing it so I asked Blake to take a picture:
This is me in the ICU:
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 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 45 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.
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 (see an example of an attempt at writing here: http://www.wildrumpusday.com/SunnyPage.jpg), 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.
I was (and still am) 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 now they’re herniated and my guts are all out of place and swollen. I get crazy stomach pain because of this, which is why I’m still on the morphine. These pictures are what my stomach looks like now because of the surgery, but I’m warning you (again) that these ones are semi-nude and not safe for work. I basically look like I’m 6 months pregnant and I need surgery to fix it but it’s a waiting game because I also have cysts on my pancreas because of the pancreatitis and I have to go BACK to St. Mike’s to have a surgeon drain those cysts before my surgeon up here can fix my stomach. Right now we’re waiting for a bed at the hospital so they can run some tests on me and then do the cyst-draining procedure. Very soon after that, I’ll be able to have my “big surgery” to fix my guts, which I’m really scared about because I’m going to be in a lot of pain afterward and there’s going to be a long recovery time when it’s all over. I’m also going to have to stay in the hospital during most of the recovery and they’re saying that that’ll be around 2 weeks. :o(
During this whole ordeal, I lost my job. I was a customer service representative for a website, working from home, and it was a pretty cherry job. Technically I was a sub-contractor (from another country, no less) so it was perfectly legal for them to replace me and I don’t blame them, they needed someone to fill in the gaps that were missing because of my absence, but at the same time, we are now down to only living on Blake’s income and that’s almost impossible. We’re putting groceries on credit cards because we truly cannot afford them otherwise. We’re going into debt pretty fast and it’s really really scary.
To make matters worse, due to poor nutrition (because my guts are 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. Here’s a pic:
The good news though, is that my wound is healing really well. Up until a couple of weeks ago, 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 a few weeks ago 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. Here’s a pic of what it looks like now, that weird bit on the right is actually my BELLYBUTTON. They’re going to build me a new bellybutton when I have my big surgery because my old one is so messed up.
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.
Here’s me just before Christmas, after putting on about 10 lbs because I stopped throwing everything up:
SO, things are improving, I’m just really waiting to have these two surgeries so I can go on with my life. I’ve been extremely depressed and my psychiatrist thinks I have post traumatic stress disorder because of everything I went through and I don’t disagree with that.
If you’d like to read backposts on this whole ordeal, click here.
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 pseudocysts 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. For more backstory on my surgery, click here. Especially this post and this post.
This is what my abdomen looks like now:
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!
Also, this week I got my first period in 15 months which means that my body is finally (FINALLY) healthy again!
I have pancreatic enzymes I can take when I eat greasy foods which will help 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.
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 0r pot or weed or la la la or whatever term you prefer, that would be why.