I feel angry

I agree with you completely.

That is a horrible story. But it is what my husband and I have been saying for years, doctors want the easy answers and if it isn't the obvious thing they aren't interested in digging for the problem. They just want to send you on your way and hope that the next time you show up they aren't the doctor treating you. I have been having constant problems since February, but the source is a mystery, so I just seem to get passed from one doctor to another. No one wants to really dig to find the real problem, meanwhile I just have to wait until I get sick enough for someone to actually pay attention.

Wow! This never should have happened, but it does. I feel for his family. In 2004 I had the same pains as he did, I was unable to eat, was so weak. I went to my GI dr at the time. He told me to stop complaining and overreacting, that everyone has to eat. This was after he'd already diagnosed me with Crohn's Disease. Then he put me on a dose of remicade. A week later I called his ofc again, he was out of town, but another dr in his ofc saw me. That dr immediately put me in the hospital. Turns out I had perforated twice and had two abscesses. I needed 2 pints of blood. I was in the hospital for 3 weeks and had 1 foot of my small intestine removed. My primary care dr fired my GI doc telling him he should've been paying better attention. If it were not for my mother and sister watching out for me and being my advocate I don't think I'd be here.

I'm lucky that I have a very good GI doctor but unfortunately my local GP surgery is very hit and miss. It is the only one in my town and you are not allowed to register at one outside your town so I'm stuck there. There is one great GP who is the senior partner and she is brilliant, so if I have a problem I will see her, she knows if I see her then there is something very wrong that I can't fix and that I'm not just going for a cold or something simple. Only problem is that she is so popular that you have to wait a month for an appointment.

Oh and I forgot to say, it was shameful it happened in Britain, it hurt my old British heart:(

Heya,

I have almost died a few times myself, no that is not a joke, or an exageration, clogged bile ducts, 2 years pancreatitis, turned to acute pancreatitis, iron aneima defeicency (almost bleed out in my own home)

I suffered from pancreatitis for 2 years and was misdiaganosed by 4 Gi's, over 30 or so ER visits and my GP, although in the GP defense she just sent me to specilists.

In those two years, I was told I was crazy, I was hypertensive, I needed to workout more. i needed more water. I was a narcotic junkie. I was a hypocondriac. I had vertigo. I had gastritis. I needed to eat better. I needed to hydrate better. On and on. Yes this really happened.

My attacks which took me to the er were so painful I was screaming at the top of my lungs. I had approximately 20 to 30 pancreatic attacks over those 2 years.

I was not diagnosed with crohns at the time, obviously. I was not diagnosed at all. Except with nonsense diagnosis, The only thing the er ever did was hydrate me, narcotic me and telll me to quit being such a baby. This is not a JOKE.

Every doctor I saw after a while started by saying "I understand you are hypersensitive to pain" or "have you gotten off meth yet? (no I dont do meth or any other ilegal strret drugs" or :have you reconsidered psychological help"

Of all these doctors not one considered ever checking my pancreas, they just saw a guy with "supposed" stomach pain and assumed I was there to get my narcotic fix on. (I dont take narcotics, I am intollerant)

I have asked for charge nurses (supposed to be on your side, bs, she tossed me out of the hospital).

I have seen patient advocacy reps. She offered me a cane to help me walk out of the hospital. Really? Wow, just wow.

I have complained to member services. I just get letters in the mail saying your complaints have been reviewed by espert panels and dismissed and you may appeal, blah blah blah.

All while literally dying from pancreatitis. I quit eating, obvisouly. I dropped 60 pounds that first year.

After about 2 years on my umpteenth attack this old grey haired doc came in, I swear I thought he was going to kill me, he looked exactly what I thought an old KGB cold war agent might look like. He was portly, looked well fed, pockemarked face, looked old and weather beaten, nose slighty twisted to the side like he had been a fighter at one time, gravely low tone voice.

Then he said the most surprising thing to me, he said. "I ran some tests, you have pancreatitis"

I was stunned, just to ahve one doctor actually believe me, run the right tests and have an accurate answer, and I wasnt going to a gulag? I think if I was a chick I might have married the guy at that moment.

I was admitted and stayed overnight, in the morning my lipase levels came down and..... wait for it....

A new doctor told me it I was fine and released me. I screamed, I cried and I begged. He said that if the levels came down then I dont have pancreatitis anymore and Get out. Wow, just wow.

The depression and aguish this caused me were beyond my emotional capability at that time. I was devastated. I had quit. I was going to die at home screaming in pain, jsut like the uk guy, because some jerk off at a hospital didnt give a darn, or perhaps as noted above, had a tee time at the local golf course and just couldnt be bothered.

My GP called out of the blue and suggested I go see what she thought was the smartest GI she had ever met, said the entire hospital considered him the leading GI doc (ok, this is just scary, so that means all the others are subpar but I saw them anyway, why wasnt this "smart guy" the first guy I saw?)

So, and his name has the work Kraken in it, come on Kraken, greek mythology, the guy must have some mojo right?

Turns out, he believed the pancreatitis and went in for an ercp to find that my bile ducts were completely clogged with what he called "Sludge" (2 years of this just to keep you remembering the timeline), apparently different from a stone but still obstructing the ducts and backing up lipase into my bloodstream, again or those of you in the know, this can kill you.

My bile ducts were but open, cleaned out, and widened. Stents were discussed, but the GI didnt want to go to crazy at first, so we stuck with that.

I awoke from the ercp in quite some pain, foggy and barely able to know who I was, I knew for sure I was in pain and had to go to the bathroom badly. I rolled from my bed with nurses yelling at me about saftey this and, let us help. Sorry my brain only knew I was going to the bathroom, a complete reflex now from my current home situation which has me in the bathroom most of the day.

I was in the bathroom for about 30 mins, with nurses constantly checking on me. (Odd that nures seem to have the one thing doctors dont, compassion) I finished and was still in pain. I was told it was from the procedure and the pain would go down. I was discharged immediately.

When I got home I fell asleep imediatley, I awoke hours later in more severe pain, something was very wrong. At this point in my long standing relationship with the hospital, I am of the oppinion that I pay them, they are my employees and Ill be damed if I am going to die at home because of another human being making the call.

I went back to the er, my pancreatitis had blown into acute pancreatitis, I was told I had possibly hours to live and had a 50/50 chance of surviving the night.

I remember everything, even through the massive narcotice. My GF was at my side through every step, all 2 years, still with me today 15 years later. She never let go of my hand, never left my side.

I begged her to not let me fall asleep, I was terrified if I went to sleep I would never see her face again. That one thought, never seeing her again, was the one thought that kept me focused. Every time I would start to fall sleep I would wake gasping for air. I really think they over narcoticed me. I could literally feel my heart stopping, my breathing stopping, like I was dead and then suddenly awoke gasping for life. It lasted for several hours that way.

One week of starvation and hydration and narcs in the hospital is apparently the cure for acute pancreatitis. I was out and alive, but only because I wouldnt take no for an answer from a hospital that clearly did not care, does it really matter what the reasons are. They were willing to let me die.

I will make the iron anemia thing short, long story short, had been bleeding for months analy. Started passing out and feeling like death. Er told me I had vertigo and to go home. i was so mad that night at the er I ripped my own iv out of my arm and stormed out. I will nto deal with inept er people anymore.

I called my Gp in the morning, she ran blood tests that day, she called me hours later and said, get down to the er now and get transfusions for iron loss or you wont make it anothe coupel days, yeah it was that bad, i couldnt even stand without passing out, which the er doctors saw in the er but ignored as "acting" for their benefit.

4 days in the hospital bed geting 5 blood transfusions, must say, felt alot better when I had blood in me again :)

I am alive and I am thankful for that, the story about the UK guy is jsut wrong, sad, horrific and unbelievably accurate for lord knows how many or us out there.

THe hopital just gets to write a check and all is well if things go wrong and then they just go and do it all over again.

Let me jsut ask this, if you are practicing something for your job in your own backyard do you get paid? Probaly not, your not on the clock.

So why in the world can the medical system have the audacity to claim they are "practicing" medicine and get paid, if they are practicing then shouldnt my treatment be free, I mean it comes with the risk of them killing me....

Oh right, you sign away your life when you go in, allowing them ot kill you legaly if they want when you are at your most vulnerable state.

Did this hit a nerve with me, yes. Do I have more stories, yes. Have I gone on to long in this post, yes.

My hospital, and Im not afraid to name names, is Kaiser hospital, a total freaking joke, If I am alive today and stay alive in the future, the majority of decisions will have to be made by me, no srewing around, if I think its a problem then I am darn well going to make them understand the seriousness of it.

I should go now, the medical systme world wide has such large gaping holes, I don't even know how you could begin to fix it.

Thanks

Jon

 

Post Edited (Blue Velvyt) : 9/3/2011 11:22:09 AM (GMT-6)

 Cindy,

Here in the UK we don't need insurance, some people do have private medical insurance but by in large we all get treated on the National Health Service.

As for all your recounts, it makes my heart bleed. From what I have seen/heard those suffering with Crohns have a pretty high pain threshold(guess you have to really) and almost because of that you are fobbed off with 'it's all in your head' or it is simply a stomach bug. If only they walked in your shoes!

If GPs don't know what the problem is, why don't they refer you immediately why do they simply dismiss the fact that anything is wrong.What I find even more abhorrent are the so called specialists that appear to be ignorant in this disease.

Zanne-I hope someone starts to really work with/for you real soon

Jon-it really doesn't bear thinking about what you have gone through and I am sorry that you have had such a rough ride(and your gf sounds like a gem :) )

tsitodawg-you have really been through it too, good on your new best friend.

Firecracker1, so glad that you had relatives to fight your corner for you.

Stripey-our GP surgery is a bit hit and miss, although have now learnt to 'work' the system and depending what ds' problem is, will make an appointment to see whichever GP I think is most appropriate for the problem.

Sniper-lol. Although again another story that could of been devastating you still manage to tell it with humour :) How's your wife doing now?

Missjen-thank goodness for med students. I guess that at the start of their career they are young and eager, give them a few years, boredom sets in and as long as they get a good wage..........................

 I totally agree that unfortunately these events appear to becoming the 'norm' and that really is sad. Ultimately we go to 'professionals' as they are supposed to be well informed and educated. I guess the lesson for all of us is not to take 'there is nothing wrong' as an answer but when you are having to fight this disease the last thing you want to have to do(or have the energy to do) is fight the medical profession for answers and suitable treatment.

I hope that you all have someone who will fight your corner and that ultimately you all receive compassion and understanding, appropriate testing and ultimately treatment, resulting in a better quality of life