Going to completely put heart on sleeve here. Maybe this will help someone else. Do NOT ignore gut issues, I’ve been having gut pains and other issues for years but ignored it for the most.
To preface – I’ll be naming a few doctors in this write up that you may want to research – before actually allowing them to work on you. One is Dr. Clifford Sample. Another is Dr. Erica Haase. Dr. Stephen IP is another. None of these doctors showed any real care but were my primary caretakers through most of 2020. In August 2020, I had a botched surgery performed by Erica Haase, and was diagnosed with one of the worst cases of peptic ulcer disease world wide. Doctors really didn’t know what to do with me, and it was exacerbated by all the covid nonsense going on. This is my story.
As you are reading this, understand that I have a very high tolerance to pain. I’m currently 135 pounds, up from a low of 110 pounds 2 years ago but still 40+ pounds shy of my target weight. I will never see 180 pounds again. At 5’11”, I’m able to wear size 28 jeans and they are baggy. Doctors are confused as to how I’m still alive after what I went through in 2020 and to be honest – so am I. I think it’s pure spite and morbid curiosity that’s keeping me going. So, here we go.
Over Christmas 2019, my neighbor below me got what she thought was the flu, it was a good one. I went down to take care of her knowing that I would likely catch what she had. I did, and it was a doozey – I tend not to get sick very often. The symptoms didn’t go away for a month – or what I thought were symptoms. By mid February 2020, I was puking up blood, weak and confused, and passing out. Passing large black stool that would rip the anus apart. Went to the hospital, was a 24 hour wait for an endoscope but they figured I had a bleeding ulcer somewhere. Loaded me up with blood transfusions and fluids and I went home. By the end of February, I started passing out again. I’m not talking “I feel faint, I need to sit down” – no, it was walking and everything went black – and crashing into whatever was in front of me – no warning. Woke up after some time with my poor dog freaked out licking my face. I’ve had more serious cuts in my face and head than I can count. Broke 3 ribs and stretched the cartilage between them, hard to breathe for 4 months solid. Had a few concussions. Everything would turn black, and the last thing I felt was my head hitting something but it wasn’t painful – just a dull thud. I suspect this is what death feels like and this went on near daily for 6 months. Back and forth to the hospital for fluids due to severe dehyration, I’ve had more blood transfusions than any person should – and lots if iron infusions.
Went back to the Grey Nuns Hospital, my neighbor took me in at the end of February – I’m passing out again. They did the endoscope. When I woke up, a nurse approached me asking if they could look at my pictures – I didn’t even know they could take pics. Fill your boots. When I seen 20+ nurses standing around the station with looks of shock on their faces, I figured something was seriously wrong. My neighbor is a nurse, she went for a peek but decided to let a doctor break the news.
The first doctor that came in demanded that I confess to being a hard drug user – I’ve never touched hard drugs in my life. Lately it was cannabis for pain and sleep. 2 more doctors demanded the same. Told them to do a blood test, only cannabis or Tylenol in my system. They then started asking about drugs like aleve or ibuprofen and others that can affect the gut – I don’t take any of it.
By now, it’s been 3 hours since I woke up and nobody is talking and I’m getting peeved. Finally, a doctor came in, told me that I had a 3 cm to 4 cm deep crater bleeding ulcer in my duodenum – they tried to clamp it off but failed. They had never seen an ulcer that big and it was in a bad spot – and they had no idea how it happened and no answers for treatment. Topped me up with blood and iron again, and sent me home. Then I met Dr. Stephen Ip, on surgical rotation for gastro, if you ever hear that name, run away. All I heard for months was take your pantaloc, that’s all he did. In April/May 2020, he called me at 9 PM telling me about thickening of the stomach walls and that it’s highly likely to be stomach cancer – when i was scheduled for an endoscope the following day – it wasn’t cancer. But that idiot scared the crap out of me and mine. Had to drag my mother out of bed at 2 am her time and break the news. Now bear in mind, through all this, I’m starting to lose weight. My proper weight for BMI is 180 pounds and by August, I lost 70 pounds. Didn’t know why. They were trying to feed me laxatives in early August by mouth – how did anyone not see that my stomach wasn’t working at all? That question haunts me to this day.
In April or May, I started puking up for different reasons. No nausea, just a full feeling and very little warning on when it was going to happen. The stomach can hold alot of stuff and when it all comes out in one shot, it hurts… I’m still passing out from blood loss that they can’t do anything about – so it’s constant in and out of hospital for blood transfusions, iron infusions and Saline. I didn’t know at the time that my stomach wasn’t working and didn’t know until August that year. The pantaloc likely didn’t matter anyway at that point.
I know now that my pyloric sphincter has been scarred shut since about May 2020, nothing was getting from the stomach to the bowel – not even water. Now between internal bleeding, dehydration and starvation for some 5 months, I’m left wondering how it is I’m still here, how am I still alive? Pure spite?. Doctors were amazed that i could actually walk into the hospital in that state.
In June, I was in the hospital at Dr. Ip’s request – I was still bleeding, the ulcer isn’t healing and he wanted me on a pantaprazole drip to see if it would work – it didn’t of course. During this time, another gastric doctor approached me with a novel procedure where they would endoscopically inject epinephrine around the ulcer to try to shrink it to stop the bleeding and coated with some kind of protective coating. Well, that seemed to have worked – but “may” have lead to worse things. Waking up from that procedure was some of the worst pain I had ever felt in my life. Woke up screaming in agony and my pain tolerance is high.
In July 2020, I woke up in pain – nothing unusual. The pain got worse as the morning went on. By noon, I could barely breathe with the pain, so I asked the neighbor for a ride to Grey Nuns. She couldn’t enter the ER due to all the covid protocols. Within a half hour of entering the front doors of the ER, I had a cat scan and x-ray and was in an ER room heavily medicated.
Dr. Brett Mador is one surgeon I would trust to work on me again. He came in with the news and he asked if I wanted it straight up or should he butter it over. Give it to me straight. The ulcer in my duodenum has ruptured and blood and all the digestive juices are leaking into the belly. If they don’t operate, I’m going to die. If they do operate, 10 to 20% chance at best of survival. None of the surgeons had done an operation like this – and they had no idea what they were going to do. Ok, let me chew on that for a bit. As bad as it is to say, life has been such a gong show since that – a part of me wishes I had refused the surgery. The pragmatic side of me believes that sometimes death is preferred to living.
When they wheeled me down to the ER staging, the anesthesiologist came to see me. How I wish I could remember her name, what a nice woman she was, but more importantly, she was calm. She read my chart, was a little shocked at the results and for the first time in my life, I had a breakdown. If that’s what a panic attack feels like, I really feel for people that suffer them all the time. She injected me with something to calm me, gave me a hug and asked for me to tell her what transpired. She said I had her “A game” as I was wheeled into the OR and hers was the last face I seen. Would I wake up? Well, wouldn’t be typing this if I didn’t. From the sound of it, Dr. Brett Mador drew the short straw for the surgery and I’m glad he did in a way. They had no idea what they would do until they got in there. From what I understand, he laparoscopically packed the hole with the bit of fat they found in me (there wasn’t much left), added a mesh and stitched everything to the duodenum.
I started passing out again by late July, with no IV to replenish. I wasn’t bleeding anymore, but remember, my stomach wasn’t working at all and food and water couldn’t get into my system. August 1st 2020, I passed out in the underground parkade – was getting something from the car. Neighbors picked me off the floor, they thought I was a homeless drunk. Had smashed my forehead into the concrete giving another mild concussion and a serious cut, but left no blood on the floor. You know you’re dehydrated when you don’t bleed.
My weight entering the hospital on August 1 2020 was 115 pounds, and hadn’t had a bowel movement in at least 4 months. You need food going in to push poop out – and I’m not able to eat. They were feeding me laxatives by mouth – in August. My stomach hadn’t been working since at least May of 2020 and I had multiple endoscopes during that period – and they are trying to feed laxatives by mouth. I need help understanding that one – why didn’t they figure out I was starving to death? By the time they operated, I was 110 pounds. Met Dr. Erica Haase – she was supposed to be the one best gastro surgeon in Western Canada and she supposedly had my back. How I wish I hadn’t let this surgeon operate on me – here’s why. All I heard was that she was so great – in hindsight, I should have asked for Dr. Brett Mador. Haase gave me the plan, they were going to do a billroth and at least a partial gastrectomy (removal of the stomach) and reroute the bowels. But when she opened me up, she found there was too much scar tissue and opted to do a gastric bypass instead. She cut a hole in the bottom of the stomach and a hole in the jejunum and stitched them together. Well, she had too much bowel and not enough stomach. When she stuffed it back in – it left me with a bad kink in the bowel – and from what I am told, it’s not fixable due to scar tissue. I’ll get back to that in a bit but I will tell you, she didn’t give two shits about me once that operation was done – she botched it and never once apologized. I have never gotten a straight answer out of anyone.
To top that off, when I woke up from that surgery, I was laying in a puddle of blood. The catheter that they inserted must have torn something on the way out and I was bleeding from the penis like a stuck pig. When I woke up, I shouldn’t have been moving but went to the toilet. When the nurse came in and seen a steady flow of blood, she panicked. Doctors didn’t care, they were trying to push me to take blood thinners cause I would be staying in bed for a while. They are trying to push a blood thinner on a man that is bleeding profusely and they won’t even look at it?
The bypass that Hasse put in between the stomach and jejunum closed up and all I heard from the surgeons is that we need to wait til it opens on its own. Now, I’m not a doctor but have had enough cuts to know that once something starts to heal – it doesn’t magically pop open. I’m still starving and dehydrating – and begging them to feed me through a central line. 2 or 3 weeks went by and a head popped in the door asking if I was Robert. He was another gastro doc that had been watching my case closely but was uninvolved. He said the bypass isn’t going to open on its own (big surprise), that he was going in endoscopically to force it open. And that worked. For the first time in 5 months, I could eat and it would actually hit the bowel. I could actually drink and it was going into my body. What interesting sensation that was starting out. But not being puked up. Of course the surgeons decided to take credit for that one – didn’t once mention the man that bypassed protocols and and put his neck on the line for me. I wish I could remember his name too.
Once the food started going in, that first bowel movement was pretty epic. Remember, I hadn’t had a bowel movement in at least 4 MONTHS. When you have to flush a large hospital toilet 3 times in order to not clog it… Yes, I took pics, but I will refrain from posting them.
Getting back to the kink in the bowel – this is what’s causing me hell at the moment. Refer to the following image. Bear in mind, I’m not a doctor, so this is my understanding as to what I’m living with because of Dr. Erica Haase.
Number 1 is the pyloris or pyloric sphincter. This sphincter stays closed normally, only opening to allow digested food and such from the stomach to invade the bowel. Stomach acid is pretty strong stuff so the liver, the spleen, the pancreas and gall bladder all release juices into the duodenum allowing the bowels to finish the job and take the PH levels down. My pyloric sphincter has sealed shut from scar tissue since at least May 2020. Nothing can get from the stomach into the bowel – not even water. So through the months I was vomiting daily and then some, facing weakness and passing out – this is the reason why. I’m literally starving, dehydrating and bleeding to death – and all through this covid nonsense. To top that off – is my stomach is still producing acid? If so then it’s not being negated by the liver. If acid is hitting the bowel direct. But some days I’m in constant pain to varying degrees throughout the bowel.
Number 2 is where she did the gastric bypass that sealed up and she was none too concerned. That site leaked after the operation – verified through flouroscope so that’s another part of the job that she botched. As I’m drinking that bad tasting fluid, I’m watching the fluorscope live on a TV in front of me. Watching the fluid slide down to the esophagus, into my stomach – and keep on going out through the leaks. I can still remember the techs words – “well that ain’t none too good.” Yeah, my stomach is leaking into my gut – been down that road couple of months before.
Number 3 – the kink she left in my bowel is just before the gastric bypass. It’s a big kink. Now let me explain what this does. The pyloric sphincter is sealed shut and the other end is the kink. The liver, spleen, gall bladder and pancreas all secrete juices into the duodenum – and mine is blocked on both sides – all those juices get trapped. When this fills up, it can hold about 2+ liters of fluid. It always amazes me at how fast the body can produce fluids. I can watch my veins/arteries start to collapse as fluid is pulled from my body – and I know it’s coming. The juices build up until it can’t hold anymore – and I have to vomit – force it. It takes violent vomiting to force that fluid from the duodenum – and break through that kink – and it comes up through the mouth – and it really hurts. I am thoroughly amazed that through all that pressure buildup – nothing has broken yet. If I do that twice or more a day, I’m losing over a gallon of fluids. One liter of water weighs approx 1 kg – on the scale, I’ve lost 10 kg in one day due to vomiting. I’m dehydrated all the time. Do you know what it takes to hydrate through that? To replace a gallon of fluid and add what you need daily on top of that? This has been my life since I met Dr. Erica Haase – vomiting, can’t eat much of anything, and near constant dehydration for the last 2 years. If they could fix the kink, I could actually live somewhat of a normal life. I haven’t had a single phone call or follow up from Dr. Hasse, Dr. Sample or Dr. Ip – or anyone else for that matter.
The amount of pain I dealt with in the hospital through all this was immense. Dr. Hasse and Dr Sample both decided that I no longer needed pain meds – they believed I was a drug addict. I still remember those almighty words from Dr. Sample – “meditate through the pain”. They even sent a shrink in to talk to me – unannounced – about my “addiction” to dilaudid. Even the shrink said they were crazy and recommended I be put back on pain killers. Another surgeon added dilaudid pills to the regime in pill form.
They ejected me from the hospital in late October 2020, now I’m non-surgical due to too much scar tissue. They can’t do anything else for me – I’m now on my own to try to survive and figure things out. In order to have surgery, one needs two clean and viable ends – I don’t have that. If anything breaks like it did in July 2020, I’m a dead man – and that’s exactly what I’m waiting for. That’s how I live day to day – is this the day that I die.
The only joy I can get through all this is helping dog owners with their dogs when I can, when I feel up to it.
Update: I write this on August 15, 2022 – I threw up a blood clot a few days ago, that’s always good news. I don’t know where it came from but this past weekend, I thought I was done, figured this was the end. Threw up over a gallon of fluid on Saturday, and I’m still trying to hydrate with whatever I can find. Been living on buttered toast and hydration drinks for the last few days til it blows over.
Started getting acid reflux after the botched operation. Now, you haven’t experienced acid reflux until you’ve had mine. That pressure builds up, and the dam will break offering a big leak. Sound asleep, I would puke in my mouth, the burn was incredible and bitter and it was aspirating into my lungs – burning the heck out of them. Yes, my lungs are shot through all this too. I’m choking on vomit trying to get to the bathroom cause I need to vacate the 2+ liters of fluid built up between the kink and the pyloric sphincter. Can’t breathe, fingers down the throat til cleared then pass out on the floor in extreme pain gasping for air. Yeah, that happened many times in 2020 – and the last 2 years – I never know if I would wake up or not.
I’m pretty sure the Pantaprazole was actually making things worse. I think it was December 2020, I ran out of pills and was too sick and dehydrated to go get more – stopped taking them. Puking up 4 or 5 times a day at that point, severely dehydrated all the time. After 2 or 3 days, some of the puking was subsiding. Started to feel better.
The stupid part of all this is that I can eat anything, digestion isn’t a problem. But there is something about food in general that triggers this response in my bowel. There are very few foods that don’t trigger a response.
Still can’t eat much of anything. Bread doesn’t bother me. Any kind of whole meat like steak, chops or chicken will have me puking for days, same goes for most vegetables. The only meat I can eat for the last 2 years is highly processed like baloney or wieners and they have been a daily staple. I am so sick of baloney. Tuna is ok, peanut butter and a few others that don’t make me sick. Pretty limited on different sources of protein. There isn’t a chance of putting the weight back on, just can’t get enough protein.
And to ice the cake, I have a good case of gum disease stemming from all this starvation and puking. Have lost a few teeth and a couple of molars are loose. Mouth is in near constant pain and I can’t afford to take care of it.
If you’ve read this far, congrats. This is going to kill me at some point and there is nothing that can be done about it. I live life day to day, waiting for that day. With what’s been happening lately, I suspect it’ll be sooner than later.
This is my life day to day and I have zero support from the medical community at large. Every day I’m dehydrated to some degree from mild to severe, can’t think straight, let alone drive some days. Can’t do any heavy lifting, even carrying a couple of pounds of groceries hurts. Can’t get a full time job, who is going to put up with someone calling in sick every other day?
The only thing that helps is cannabis and dilaudid. Cannabis can give me a grip on the pain most days – and I smoke nightly cause laying down for excess periods causes gut pain. But on the really bad days or night, it’s a combination of dilaudid and cannabis. Doesn’t leave much room to do anything.
These pictures are from August 2020 at 110 pounds – after a 70 pound weight loss. This is what I looked like a couple of weeks after the bypass operation. At this point, the bypass had sealed up and I still wasn’t able to eat. You can see the surgical scars from the bypass.
