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I'm dying

Foreigner

Foreigner

Bluelighter
Joined
Mar 18, 2009
Messages
8,305
I've been given a few weeks to live, for a condition that's otuerwise treatable, thanks to a corrupt, shitty, inefficient and incompetent health care system. I don't know why people tout Canada's health care as a gift from god. It's a piece of shit and has nothing but morons working in it.

I have ulcerative colitis and it's bad. To keep a long story short, I was having a gradual bowel hemorrhage and the emergency room sent me home twice, despite crazy bleeding.

Tried a different hospital the third time and ended up there for a month. They put me on high dose prednisone and gave me inadequate calories every day, so I starved. I went from 180lbs to 130lbs in weeks. Every day I was pressured by doctors to let them surgically remove my entire colon, and I would say no.

After much battling they gave me the immuno suppressant rescue drug remicade, which is expensive and needs special approval. I only got two of the three doses I needed and each dose was followed up by an intervention that completely sabotaged its success. For instance, one night I was feeling hot and I had a bit of a temperature, which is a side effect of prednisone. The night doctor freaked out and put me on a heavy duty IV antibiotic, which brought back all my diarrhea and colitis symptoms.

My GI doctor recently cut me off from remicade, saying that I'm not gaining weight and recovering fast enough for his satisfaction. He will only permit me to get surgery. He gave me a bunch of scare tactics about bowel rupture, abscess, infection, yada yada... but my MRI showed no evidence of that.

I'm not letting these fascists take my bowel because it's more cost effective than giving me remicade. But I am dying, very noticeably. The surgery would be big risk at this point, I am so malnourished from their neglect. I have people rallied all around me at home providing whatever I need, but my prednisone dose is still high enough that it ravages my tissues and my bones. Almost every part of me has atrophied, and I can't walk without a device. I'm 30 fucking years old and they want me to live with a shit bag hanging off my body the rest of my life.

If this were Europe I could get just the affected bowel piece removed and resectioned. But here in Canada they take your whole damn colon, and the reasoning is "other parts will just get inflamed later, this is the only way to cure it." I hate modern medicine for what it has done. In Europe I would've been on remicade from the get go. Here there is so much red tape , and they are so giddy to cut into you, that proper care is neglected.

So I'm writing this in case I disappear from here. If suddenly I never post again you know why. The medical system fucked me over, the one time I really had to place my welfare in its hands. I am so sad that I'm on my way out, but the pain I'm experiencing... I would never wish on my worse enemy. I have degenerated into a shell of the man I once was... I look like a "save Africa" commercial. I can't live this way, and I won't let them cut me up.
 
Foreigner, I am so sorry to hear that you are suffering and even more distressed to hear that you do not have medical care which you have faith in. That must be a completely helpless feeling. I'm sure with your own knowledge as a healer you are familiar with most of this info but I'm linking this guy's site anyway:http://www.drdavidwilliams.com/ulcerative-colitis-natural-treatments/ for diet based support for U.C.

Is there absolutely no way to find a doctor that would agree to only take the affected part of your intestine and colon? I had a similar situation years ago with a uterine tumor and I was able to finally find a doctor willing to preserve both my ovaries and cervix and just take the uterus--it took looking and asking a few doctors but I finally found one that was somewhat ahead of her time (now this is standard for younger women).

Are you receiving any mental support for all you are going through? Prednisone is a bitch of a drug on the mind. My husband is on it for lymphoma symptoms and I definitely notice that it makes him much more anxious and angry than is his natural state. That anger and anxiety produces hormones in the body that cause inflammation--the very thing the prednisone is supposed to treat! So getting someone to help you with the emotions connected to this ordeal would be a very proactive step to take.

Best of luck and keep us posted if you can.<3
 
My thoughts to you Foreigner. If it makes you feel any better; I also might share my quite fresh medical story, even though your condition is much more fatal and I totally understand why you choose NOT to have a surgery.

At the moment, I share the same bitterness & hate towards the medical system as whole even though we live in different countries.

I was diagnosed this monday with a connective tissue disease caused by a surgical mistake when I was 2 years old. The surgery was performed by my nursery doctor so that I would not have inflammation and problems in the future. The surgery was a complete disaster and actually caused more inflammation and bleeding ( which I did not have before, it was called PREVENTIVE MEASURE for a thing my healthy body NEVER had )

22 years later, the infection has renewed itself in the wound, this I found out monday. This same medical system is now offering me only one option: to have corrective surgery. The very same medical system that mutilated me in the first place.
The doctors cannot even tell can the "corrective surgery" even correct anything, because the sad and bitter part is that it is a possibility that I had no problem in the first place when I was an infant: It was simply preventive measure that actually caused more infections to begin with. These surgeries are not even performed today, but things were different 20 years ago.

I live in a very socialistic country. I'm reading American newspapers at the moment where people with 100% same case and symptoms as mine have sued the doctors and won millions of dollars. I cannot sue my doctors, I live in a very socialistic country where normal people like me don't have any chances to even sue state-funded medical system: it is like one man suing the whole medical system for a mistake they do not admit. My father told me that only explanation they were ever given was that "The surgery was performed correctly, but complications caused the damage and doctors cannot be blamed for it" etc.

I'm 24 years old myself and in few months I've lost everything, including my job, and have to move probably back to my parents because the pain is getting more severe daily and there are not other cures than this corrective surgery. Like you, I will probably not even accept it even though my insurance would pay all the fees. I simply do not trust them. It is not much better here in Europe even though you might think so.
 
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Fucking hell man, don't know what to say except hope for some kind of turn around but I've had my own medical shit (don't romanticize Europe, I live here) and I know all too well about the medical fuck-ups you speak of. I'm not a medic and don't understand the full consequences of your condition or treatment but I will say your stand on demanding the final say on what goes on with your body is the right one and I respect you for doing what you feel is the right thing for yourself. I had to do that for myself with cancer and I know how much opposition I faced both from the medical establishment and indeed from my own family and friends.

Respect Foreigner. Fight the good fight. I seriously hope you win. And if you don't win the ultimate argument with life itself...peace. <3
 
Really hope you get better soon. I couldn't imagine being put in that situation I would feel the exact same.
 
Im so sorry to hear this Foreigner <3

Im with OTW on this. I know the surgery is the last thing you would want to do, but sometimes we are forced to undertake the last thing we would want to do.

One of my Fathers friends just had this done and he is recovering nicely. At first he was really upset that this needed to be done, but he is certainly glad he had the surgery at this point.
 
What kind of quality of life will you have if you get the surgery? I don't know anything about what t-hey recommend, but having a bag of shit strapped to your body for the rest of your life doesn't sound good. Is that what would happen to you? Is there no way to get a different doc who is willing to do a different procedure?
 
Well, I´m deeply sorry to hear about what you must be going through. I really hope you can somehow find ways to get better.

I personally met someone who is old but lives with some sort of equipment attached to his body.
He travels to see his family and from talking to him I swear I couldn´t see anything wrong, apart from his old age.
I believe there must be some alternative out there. It´s very easy for me to say this, but I only trying to give you some real expectations.
Try to search Google and see if there are others like you and how they handle(d) their situation.
You are too young and maybe in some other city in Canada you may get qualified help. I´m almost sure.
Good luck!
Erik
 
I'm so sorry dude. I've liked what you've had to say on these forums, you seem like a great person and I hope you pull through this.
 
Damn man I'm not a doctor and you understand your situation better than anyone elseso I won't comment on that aspect. If you really do only have weeks to live then the question becomes how do you want to live them? I am really saddened your going thru this. I have always enjoyed your posts. My thoughts are with you.
 
The reason why I am not going for the surgery is because it's not a lifestyle solution. They take your whole colon out and then run the remaining piece of your large intestine out of your body and attach it to an external bag. It's called an ileostomy. The stub outside your body can get infected, the bag can leak, and there's no guarantee I won't get inflammation in some other part of my intestine down the road. Initially they told me I had Crohns because they found inflammation in many parts of my GI (a feature of Crohns)... then when they saw Colitis in the last portion of my bowel, they conveniently ruled it was ONLY colitis... which means, hey, let's take out his colon to "cure" him, because colitis only affects the colon! In reality the inflammation could happen again anywhere. Imagine having a shit bag and then suddenly I end up in the same agonizing pain anyway down the road!

Secondly... they offer reconstructive surgery. They make a fake rectum called a J pouch out of your small intestine, so you have no bag at all. It requires a second surgery. This let's you at least have the appearance of a normal person. However, you still are shitting 7-8 times a day, mostly liquid, and you have incontinence so you need to wear pads and whatever else. I mean really, I'm 30 years old, do I want that?

Modern medicine is barbaric, and in socialist countries it's all about cutting costs. Instead of giving me the rescue drug - which is $900 per dose and I would need to take it once every 2 months indefinitely - they push surgery because it's cost effective for the system. They don't want to spend money on real medicine that restores functionality, so they opt for the knife. I refuse to give them their pound of flesh, when there is a non-invasive solution. I already got approved by the government to get this rescue drug, but the GI doc won't give it to me anymore. He says I'm too thin, he says the risk of things going wrong is too high... blah blah blah. He was very quick to refer me to his colorectal surgeon friend at the hospital, and he expected me to literally leave his office and go to the hospital for surgery THAT NIGHT. This guy is one of "the best" GI docs in the city, or so I'm told. Honestly... these people are robots. They are totally left brained and don't care what your personal experience has been.

The last dose of the rescue drug I was given, it was working wonders. Then I got a bit of a temperature at night, which is a side effective of the prednisone, and the attending physician put me on heavy duty IV antibiotics thinking it was an infectious fever. She was too fucking stupid to even know prednisone's side effects. I was on that shit for 7 days, and all my diarrhea came back... antibiotic diarrhea is so common, and it sabbotaged my rescue treatment. I tell this to my GI doctor and he won't even hear me. He says, "That's correlation, not causation. There's no scientific evidence to prove what you're saying." !!!!!!!!!!!!!!!!! It's like that movie Idiocracy, where everyone is dumbed down. This is a DOCTOR I am talking to, and he is dismissing an obvious piece of conflicting medical evidence.

I CANNOT, WILL NOT entrust my body to these people. Not after their numerous fuckups already. Not after their refusals to listen to me. And not after denying me a treatment that was working.

So yes, I may die in several weeks. But I will die with my body undefiled by these assholes. I won't live with a shit bag because of their grave mistakes. My only wish is that if I die, I don't die angry. In a few weeks I should be almost completely tapered off this evil prednisone and maybe I'll feel more like my original self.
 
Get lots of different opinions before operations, surgeons love nothing more than sharpening there knives and lining their pockets, Wishing you the best health possible both mentally and physically and to be pain free..best wishes
 
This isn't just their decision, it's yours too, so in this challenging time you got to do your best to differentiate what is in your best interest. It's a strange dance between the will to survive and acceptance of that which can't be changed. This is intensely personal, and any decision you reach is a powerful statement that needs to be respected, both by yourself and others. If your decision changes that's perfectly fine, just change it out of greater clarity. I almost died once, so I'm just trying to give you some pointers that might have saved me confusion in the flood that arises when mortality knocks. Shine brightly dude, you're in my thoughts.
 
Im sorry for your trouble..i enjoy reading your post on here they are very informative and u have a great perspective thats very open minded..wish all the best for u man.
 
falsifiedhypothesi said:
I'm so sorry dude. I've liked what you've had to say on these forums, you seem like a great person and I hope you pull through this.
Click to expand...

Exactly but not only here. Find groups within this subject and try to get different outputs, hope!
 
You can call modern medicine barbaric but if you do I don't even know what adjective you would use to describe old medicine. Your life is on the line so you should spare no expense in getting the best treatment possible. Come to the United States and get an opinion if you have the means. We are not socialized and money talks here. Personally I think your insane to not have the surgery. Your being overly paranoid about the doctors not having your interest at heart too. As smart and well read as you are these people know way more about medicine and your options than you do. Dying to spite them is only costing you your life. I have a friend with crohns who now has a colostomy bag and you would never know it if she didn't tell you. Plus in 15 years you don't know what new surgical procedures may be developed to repair your bowel function. I urge you to reconsider your decision. Your not proving any point by choosing to die because you think a doctor fucked up. I also think the prednisone is affecting your judgement. You should discontinue that drug if possible.death is permanent man and if you fuck around and wait too long to get treatment it may end up being too late for anyone to help you.

Your a valuable member here foreigner I really don't want to be posting in your shrine thread. Of you want to talk or vent pm me and I'll give you my phone number.
 
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