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Avatar universal

I know I'm dying.

Don't really know why I'm posting this. The only issue on my mind right now is how to "end it" before the end comes and takes me. I'm not trying to elicit sympathy from anyone and have no realistic expectation of anything so this isn't even a cry for help. I know I'm dying and that's about it. I haven't been formally diagnosed yet but the signs are too painfully obvious. And I mean "painful" in all senses of the word. Here's a bit of background for what it's worth.

I live in the UK and 45 y/o male. Presented to GP with diarrhoea before the summer. Got Dx'ed with H Pylori and accepted the treatment as an act of faith - notwithstanding the fact that sudden onset of diahorrea is not a typical symptom of H Pylori. But you have to play along with these things so I did.

As I predicted my problems did not go away and so the doc gave me the expected IBS bullsh*t. They tell you IBS so you'll go away until such time as you develop more serious symptoms. It's a cost-saving tactic for the British National health service. Make the patient feel stupid and "anxious" so they feel bad about asking to be referred to a consultant with all the expensive diagnostics that would entail.

Well, his ploy worked and not wanting to make a fuss I did go away. But only to develop a DEEP VEIN THROMBOSIS in my lower leg a few weeks later! Now, you would think that any (insert expletives here) worth his salt would have seen RED FLAGS by now! Unexplained DVTs can be a strong indicator of malignancy especially when accompanied with a dramatic change in bowel habits. But oh no! My flippant doctor shrugged it off as a mere "coincidence" and sent me on my way again.

This did not diminish my worries so I returned to the surgery and reasserted my concerns. This time he did refer me for an ultrasound but made it quite clear that it was a "waste of time" and tried to make me feel guilty by telling me how much it was going to cost the NHS to have this done! £250 if I remember correctly. Well pardon me for being such a burden on the health service that I fund with my own taxes!

4 weeks later my ultrasound appointment and blood tests revealed a slightly fatty liver and mildly raised liver ALT. By now I had started to develop scarey PALE STOOLS. Aha! I thought! This was bound to make my GP take notice.  Pale stools can not be explained away by anxiety, H Pylori, IBS or any of that jazz I thought. But wrong again! The stupid man completely ignored this new symptom. However, after much prompting, he did eventually refer me to the local hospital where I saw the registrar who noted my symptoms and booked me in for the colonoscopy. Question in mind now was, what the heck is a colonoscopy going to tell them about the reason behind my pales stools! The answer was simple. My idiot GP had written "Rectal Bleeding" on my report. Even though I denied that I had ever had bleeding, the registrar was already fixated on sticking a tube up my backside.

A couple of weeks before my colonoscopy appointment I went back to my GP with a new symptom - an excruciating pain in my back!  Alarm bells ringing anyone?? ABDOMINAL PAIN -> BACK PAIN -> DIARRHOEA -> PALE STOOLS! WEIGHT LOSS! BLOOD CLOT! I was certain my GP would now agree that a colonoscopy was NOT the logical next step and book me in for some kind of imaging or upper GI investigation. But the stubborn fool would not budge. I told him I knew I had all the symptoms of a pancreatic problem or at least a billiary disorder of some sort but he kept telling me I "didn't have the symptoms". I started to wonder if this was a qualified physician I was dealing with!

So anyway, I was reluctantly forced to undergo the colonoscopy which revealed a little diverticulosis and not much else and I was given a follow up appointment for February. By now my back ache was much worse and accompanied with a horrible malaise, flu-like symptoms and dibilitating bouts of acute fatigue. During these episodes if you asked me how close to dying I felt on a scale of 1 to 10, I'd have to say an 8 or 9! Several times I thought about admitting myself to the emergency department but held back. But I just knew I couldn't wait until Februrary for my follow up appointment. I was in too much pain and distress.

In the end I referred myself to a private gastro consultant in London and told him the story. He agreed me with me that given my symptoms I should have had some upper GI testing to investigate my pancreas as this was the main concern. He was actually baffled by several of the decisions my GP had taken throughout the course of my illness. Amazing how much more intently doctors LISTEN when you're paying them by the hour!

Anyway, I had an EUS (endoscopic ultrasound) just before Christmas fully which imaged my pancreas and revealed...wait for it...a "normal pancreas"! I would've been jumping for joy and celebrating but realistically, my problem is still there and I am deteriorating a little every day. In the last 3 months alone I have lost 25lbs in weight. The pale stools have started again, the back pain is killing me, I have muscle twitching, spasms and a host of other symptoms which are immediately identifiable with cancer. Whenever I try to put cancer out of mind I'm reminded of my blood clot. I'm still waiting for my post warfarin treatment thrombophilia blood work but I'm not sure what that's going to tell me.

Last week I dropped into my GP surgery again in a terrible state of mind and body. Thankfully, my GP was on Christmas leave so I saw a very good Locum instead. He was particularly concerned about my weightloss and back ache and immediately ordered a chest xray and more blood work to rule out other less "serious" stuff like Hyperthyroid which might account for a few of my symptoms... but it's really clutching at straws. There's nothing benign that could be causing all this.

So what do I think is wrong with me?

I'm almost certain that I have Lung cancer. So certain that I don't even need to know the result of chest x-rays. And anyway, regular xrays rarely detect lung tumors until they're too advanced to treat, that is. I was a smoker for 20 years before quitting 3 years ago and there's not much else that could explain the deep penetrating pain I'm experiencing in my upper back that seems to go right through to my ribcage and lungs. Put it together with all the other cancer flags I've experienced and it seems pretty clear cut. The only question in mind is if the cancer got is primary or whether it's metastasised from a close by organ, possibly liver - which would also explain the bowel problems.

If I have the faintest hope it's that it could also be a pulmonary clot. Who would have thought something as serious as a clot on the lung would be a source of "hope". But it's the best I can hope for.

Right now, I'm emotionally and physically drained to the point of paralysis. I don't even know what day it is. I keep googling phrases like "painless ways to commit suicide" on the internet. It's scarey, but that's where I am right now. I'm not married but my immediate family is close. I'd hate to do that to them but, equally, I can't bear to put them through seeing me go through pointless, soul destroying chemo treatments and the like. What's the point. The end result is always the same. I'm just not a fighter and would probably refuse treatment anyway. You probably think I'm crazy, but I know my own body and I can feel the inevitable creeping up on me. While typing this I've had several episodes of pain and sickness. This can't go on and I can't let my family see me like this for much longer. I love them too much.

I'm sorry about all this pointless rambling. I fully understand if the moderator wants to remove my post. It is a bit depressing. Just needed to tell my story to an anonymous someone who wouldn't be hurt or affected by it.
16 Responses
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Avatar universal
I am really interested to know if they found what you were suffering from and how you are now. Please update, if you are here! Thank you
Helpful - 0
Avatar universal
hi i am a 16 year old girl from malaysia. when i read your article, i had a weird feeling.. it was like there is someone else suffering like me. i don't have lung cancer, but i suspect i have other disease cuz i a not the real me. i have been diagnosed for migrain but it's not getting any better and when i check for symptoms through the internet, i can say that i have all of them. but none of my family members cares on what happening to me. they keep on putting pressure on me and make me more depressed. now, my mind is all about dying. i just wanna die!! i had attempted suicide for 9 times but sadly i am still alive. anyways, i am very clear that i am gonna die soon due to either stroke, coma, aneurysm or any other major illness. i am also ready to die cuz i have no mood to live any longer especially in my family where i get no trust.
Helpful - 0
Avatar universal
hi i am a 16 year old girl from malaysia. when i read your article, i had a weird feeling.. it was like there is someone else suffering like me. i don't have lung cancer, but i suspect i have other disease cuz i a not the real me. i have been diagnosed for migrain but it's not getting any better and when i check for symptoms through the internet, i can say that i have all of them. but none of my family members cares on what happening to me. they keep on putting pressure on me and make me more depressed. now, my mind is all about dying. i just wanna die!! i had attempted suicide for 9 times but sadly i am still alive. anyways, i am very clear that i am gonna die soon due to either stroke, coma, aneurysm or any other major illness. i am also ready to die cuz i have no mood to live any longer especially in my family where i get no trust.
Helpful - 0
Avatar universal
I  can only tell you this, from the other side of your story the pain is immeasurable.  The news that your pancreas is alright is wonderful, a blessing beyond words.  With only a vast amount of suspicious causes for your aliments please don't do anything irreversable such as ending your life.  That is agony.  A torment you yourself will never know.  Many difficult yet treatable conditions can cause your symptoms.  I know, for I went for years with undiagnosised lupus and epilepsy.  Sometimes it takes the right doctors, and not just in the UK the US can be difficult  to find them too.  

My sister did have Liver cancer and Panceratic cancer.  She did not share the pancreas diagnosis with us.  The pain over took her, without a good bye my best friend left me.  I am left with knowing her pain is gone.  But on that day, a different agony began for me.  I looked out and over her my whole life.  I am not angry, I am devistated.  It's been 2 years and  everyday I am so sorry I didn't get to tell her goodbye and I love you.
Don't just leave in such a way that you believe it's better.  Say goodbye to the ones you love, if that is a choice that no one can talk you out of.  Personally, I would never do it without knowing for sure what is going on with my body, it might be treat able.  Either way.  God Bless and I wish you well.
Helpful - 0
1189289 tn?1264556577
I feel the same way you do sometimes, well most of the time.  I have RA, MS, FA, OA, UC, and depression and now a compression fracture of L2 from a fall last month when I was walking my dog at 6am, I slipped and fell on my bum on an icy sidewalk in front of my house.  Speaking of house, I would love to have a doctor like HOUSE too!  Those vicodin he takes, maybe he would share!  That is what I need, immediate relief pain med.  I currently am taking oxycontin, but low dose 15mg 2 x daily.  Not barely touching my pain.  See my ra doc friday, will talk to her about getting a ir med.  I can't take any tnf blockers or typical ra meds because of the MS I have now, due to taking Humira back in 06 for 3 months along with methotrexate which weakend my already compromised immune system, with sicknes, lots of lung associated viruses.  
  I too had 6 month spell of chronic diareah, 20 times a day.  Had to start wearing depends,  or just not go out.  Which was more likely the case, now my husband does it all almost for out 15 year old daughter.  I had an upper gi and colonoscopy, removed a couple of polyps, and they found an ulceritive colitis, yet another symptom of RA,. Spinal tap indicated some other gunk.  When you start getting bilateralo pains and aches, it could be ra or fbro.  Have your RF factor and sed rate checkied.  Make sure you surround yourself with professionals that care.  Gooe luck, everybody dies, just don't want to die slowly in so much pain, with not enough goood care and relief.l  By for now, Nancy in Redmond WA ps I am having a lung ct on Friday to see if my coughing and wheezing that is lingering on from viral pneumonia and bronchitis had since end of November, could be rheumatoid nodules in lungs or the big C. Do you know Dr House's phone number!
Helpful - 0
Avatar universal
Wow,
WHat a story and I thought things in the US were bad medically and they haven't even got started on the new health care stuff. I have no medical insurance so I don't go to the Dr for my pain unless it gets so bad that I can't stand it and have to go to the ER, I am
scared with what I am feeling and my family history and have no idea what to do.
At any rate, im so sorry you are suffering like this, Someone were you are has got to find what is wrong with you so please DON'T ever think about taking your own life because  its not worth it in the end for you or any one else concerned.
Take care
Helpful - 0
Avatar universal
I appreciate your taking an interest in my story. It does help to talk about it.
FYI, my chest x-rays did not show anything and there were no abnormalities in my blood. I was tested for Thyroid, FBC (CBC), ESR etc. My GP has now put me on Gabapentin for the back pain. Maybe he suspects it's neuropathic pain. I don't know. This drug makes me feel like a zombie and I'm still very unwell and in pain. I frequently feel feverish (without having an elevated temperature). I have a very distracting and unusual backache. It almost feels like I have some kind of spinal or central nervous system infection. It's a deep penetrating pain that doesn't feel muscular-skeletal and is sometimes accompanied by bouts of sudden acute fatigue - the kind that makes you feel like you're close to death! I have visual migraines and other sensory symptoms, muscle twitching, inner tremors etc. They are very MS'ish in presentation. But I've had 2 brain/spinal scans in the past 2 years and there was no indication of MS. I should mention that I was DX'ed with an intercranial tumor in my temporal lobe hence the MRI scans. Opinion is split over whether the tumor is responsible. I tend to believe it is. All I've been told is that it's small, not cancerous and it's not growing.

As you can see my case is complicated and preplexing. It's almost like something from an episode of the medical series "House"! Sometime I wish I had a physician like Dr House who could think out of the box. But in real life there's very little continuity in medical cases like mine. In getting shoved from one specialist to another you tend to lose continuity and relevant information gets lost along the way.

It's kind of ironic that my bowel problems which was my original complaint are now secondary to everything else - even though I still do suffer greatly from stomach pains and digestive issues at times. But I can't help thinking that everything is all connected in some way. I absolutely do believe that I have some kind of partial seizure activity due to my brain tumor and I've heard that this can affect bowel function, or so I've heard.

As for the H.Pylori, I now wish that I'd asked the endoscopist to take a sample of my stomach tissue to test if I still have this bug. I wonder if he even bothered to look around my stomach while he had the scope down there, because his report only mentions my pancreas (which was normal). My understanding is that stool and blood tests are not definitive because a positive result may only indicate a previous infection but not necessarily an active one. As I don't want to have another scope down my throat i may have to insist on a breath test to see if it's been eradicated. Even if I do have it, it doesn't explain all my symptoms.

In summary, I'm feeling a little bit better in myself because of the clear xrays and blood tests but then I'm still sick and incapacitated. Other considerations for my back ache are Fybromyalgia. I do have bilateral muscle pains at times. In fact, I developed a lot of musclar pain just before I suffered my DVT. I'm still waiting for my thrombophilia results which will tell me if I have any clotting issues.

I'll let you know how things go. Thanks again.

Helpful - 0
Avatar universal
Dear Medicated,
We look forward to hearing about the results of your tests.  I wish to clarify, because from your reply it appeared I may not have communicated my thoughts well enough, but I think it is STILL the H.pylori in your system that is causing your digestive symptoms.  Therefore, as I said, they should take another stool sample and draw blood to make sure you don't still have either H.pylori in your intestines or some other bacteria.  See, I believe part of the reason you are having all these symptoms is because your guts are still infected.  So, I hope you will schedule to have H.pylori re-tested to make sure it's gone, and also to look for any other digestive issue that has gone undiagnosed (other than that IBS jazz).  I think if you can get your digestion straight, you will recover most of your decline in health very quickly.
GG
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Avatar universal
Thanks for your advice. I've been screened for Celiac already. I'm trying very hard not think the worst. We'll see where this thing takes me!
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Avatar universal
I did admit myself to ER a couple of weeks after my blood clot first presented because I was having similar symptoms. Unfortunately, the triage nurse was a complete bitc* who chided me for using the ER rather than seeing my GP. The ER doctors debated giving me a scan but thought the risk of exposing me to CT was "unwarranted". When I later visited my GP he mentioned that my hospital report said I was "bordering on hypochondria". I just don't want to be offended like that again! There's only a few days before my x-ray and bloodwork comes back so I'll brave it out for now. If there's no conclusion then I probably will go back to ER and try to be more assertive.
Thanks for your input.
Helpful - 0
Avatar universal
I appreciate your support. I did have 3 months Warfarin therapy which is the standard protocol for treating DVTs. They then took me off the drug and waited 4 weeks before giving me another blood test to investigate any underlying clotting issues. I haven't had these results back yet. The thing I'm dreading the most now is the result of my chest x-ray which should be due back this week. Your right about being me worn out. I seem to be in a spiral of bad health and it's affecting me terribly. Thanks again and be well.
Helpful - 0
Avatar universal
Thank you for your postitive response. I don't know how I'm going to react to whatever it is I'm facing but it's a bit difficult to develop a positive attitude at short notice. I know my attitude is totally wrong. Hopefully a merciful God will be forgiving of our frailties.
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Avatar universal
I don't know how the medical system works in the UK, but you have ERs. Go use one - NOW! Yeesh! A heck of a lot more affective than killing yourself, and, I'm not at all going with lung cancer. Are you a doctor or have you been googling your symtoms for months now? I'm guessing the later.

Sure, your doctor is an idiot. No kidding - like doctors can't come in that form, too? More than one doctor? Right? Get yourself to the ER and don't let them dismiss you until you find out what's wrong. And, for crying out loud, have them check your gall bladder! I'm no doctor either, but back pain, pain below the ribs, irregular BMs - those point to that as a possiblity. And, yes, it feels like you're dying, but you aren't - unless the gall bladder does die and goes gangrene.

There was a reason you posted this on an gastroenterology forum - even you aren't completely convinced it's lung cancer, the original symptoms are related to the intestinal tract, and you still want to live. So do something about it. Get your butt to the ER and don't leave until they figure out what's wrong. You could actually be fine by February, if you but do that.
Helpful - 0
483733 tn?1326798446
I am sorry you are getting such a run around.  It is amazing how much we need to advocate for our own health care these days.  Don't give up just yet.  I would really encourage you to ask for blood tests for celiac.  Gluten issues can cause many of your issues.  If you change your diet to gluten free before testing the tests will not work though.  Also, gallbladder/pancreas issues can result from a gallbladder not operating or bile duct issues.  A HIDA scan can tell if that is the case.  I do hope you can get some answers soon.  Try not to think the worse.
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Avatar universal
Wow, what an amazing story, you poor thing.  I have heard of intestinal tract problems causing DVT, the clot you have in your leg.  The chest X-ray may have been to look and see if some of the clot broke off and went into your lung.  

But first thing i thought of was, they didn't get rid of the H. pylori.  So, your current doc needs to do a stool sample to make sure you don't still have that, because lots of times it takes a whole new round of new antibiotics to get rid of it, it can be stubborn and resistant to some antibiotics.  Also, your doc should be giving you a medicine for that blood clot in your leg.  In addition, they should look for cancer in two ways:  Do a CAT scan of your body (not just the chest, not just the abdomen, the WHOLE body) and do a blood test to look for cancer cells in the blood, then they do more involved labwork to figure out where it's coming from.  Finally, the chest X-ray will find if a clot has gone up in there, in case that's how come your chest hurts.

I personally think, from my own experience of being unbelievably sick from a car accident, that since you've had diarrhea and weight loss and yellow stool, this means that your body has run into the ditch.  You are wore slam out.  You are not getting your nutrients and this is making you feel really down and ruined.  So, I can tell you that if they can get your digestive issues straight (the H. pylori or whatever bacteria or anything in your guts), then maybe you can get some benefit from what you eat, and that will help you feel more like yourself.  I was on a medicine that gave me diarrhea a dozen times a day for SIX MONTHS, nobody knew what was wrong, and I thought I was gonna die.  I was actually getting my papers and money in order just in case.  Which reminds me, review side effects of medicines you were on when you got this diarrhea.

Anyhow, I just wanted to give you a little support, a possible first-choice solution to what is going on with you.  I personally think they ought to put you in the hospital and give you some I.V. fluids and I.V. nutrients and I.V. antibiotics and do all the tests necessary to RID YOU OF whatever is making you sick.  Hope this helps a little.  Oh, and put the phone number for the Crisis Intervention Center by your telephone, and next time you feel like doing away with yourself, just give them a ring; that's all they do is talk to folks who feel sick like you do.  See, the worst thing about being sick is nobody listens.
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Avatar universal
hi, stop for just a second, if you think taking your own life is the same as dying naturally or by disease, your wrong, the destination of those who commit suicide is forever torment, anyway leave that aside, lets look at ways of easing your current dilema, everything your describing happened to me including weird nerve sensations pins needles sharp chest pains lower back pain kidney infections, pale face fatigue just to name a few, i also thought of the worst possible scenarios inclding lung cancer, after years of suffering symptoms and being accused of lying and being a hypochondriac, going through countless tests, stds, gluten, sciatica, liver scans, you name it, one test no-one ever mentioned to me was lactose-intolerance, once i was diagnosed and took the correct action, all of the symptoms went away, p.s. everytime i read about a certain disease, id say ive got this and that and stress about, but no more, only you and your body can heal together, reverse psychology is the cure, no disease can overcome the combined strengh of body and soul. goodluck friend.
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