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Hi I'm a 48 year old man at the end of my tether & absolutely desperate for help. Hoping someone can advise? Medical history is very long so for ease of reading (& typing) I've bullet-pointed my story:-
~1997 Heartburn after certain foods.
~2001/2 severe heartburn
~2004/5 tested & diagnosed with H.Pylori. Prescribed antibiotics. Presumed clear ??
Heartburn persists. Prescribed Omeprazole, then Esomeprazole. Symptoms kept in check
2009 injury while lifting heavy object - can't poo for nearly a week, abdominal cramps. Feel like I've seriously injured my back. Prescribed laxatives which cause considerable pain but no relief. Resort to self-administered large dose of painkillers (800mg ibuprofen) nearly lose continence while out on a shopping trip! Feel like I've torn something below my sternum. . terrible pain like I've had a punch to the gut - this comes & goes for several weeks. Shearing pain from lower sternum through into back.
2009 - 2015: consult numerous doctors (my surgery is a training practice) describing my symptoms dozens of times to dozens of doctors who (in no particular order because I've lost track) order the following tests:-
2 endoscopies (one opted without GA!) 3cm hiatus hernia visible + inflammation down into duodenum.
3 ultrasound scans looking for gall stones/liver or kidney problem/etc. All clear.
3 MRI scans - abdominal/lumbar/ lower thoracic/ cervical. Some herniated discs but no nerve compression.
Blood tests (not sure what for) All clear.
Dental xrays & examinations due to serious questions over practices of my dentist back in the mid 1980s. Clear.
Chest XRay. Clear.
I'm literally at the end of the rope now. I feel so desperately ill that nothing alleviates the permanent abdominal cramping/difficult to control & severe heartburn + tearing sensation across my shoulders & down through my sternum. The only way to convey how this feels is to compare it to a moderate toothache from my neck down to my upper abdomen right through my core. A toothache that whilst it might be tolerable in the short-term, I've endured for years. The dripping tap is now water torture.
There is no normality to life, no answers & no end in sight. I've told two doctors that I want to die because I'm so miserable but they can't seem to join the dots & see that my desperation & depression is down to pain & frustration, not the other way round. Prescribed Amitryptaline low dose. No effect.
I've always been physically pretty tough & psychologically stoic but I've all but lost this fight. The only only way out of this is the hope that I find a doctor with a new perspective. And a magic wand. That doesn't seem likely so I've made definite plans to take my own life. I've said as much to at least two doctors & they didn't seem overly concerned. I record all of my consultations now partly because I need my wife to hear what is said, (just in case I forgot what was said) & partly because I have zero trust. Maybe the autopsy & ensuing lawsuit will reveal the problem? ?
I simply cannot equate the severity of my symptoms with test results. Someone has missed something, perhaps as many as 30 or more times. Deliberately? I'm really, seriously starting to wonder. Will they open me up & find me riddled with cancer? A broken back? Ruptured splean? I would be happy with ANY diagnosis right now, at least I would have some starting point to work from.
Sorry for ranting.
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Just so you know you're not alone.. Doctors tend to find this stuff tricky as they don't believe use when we tell them how much pain we are in etc don't ask me why, I couldn't tell you! However you are entitled to prescription strength pain killers if you ask for them.
I noticed you said you'd taken ibruprofen which you really shouldn't take if you have a stomach problem. It really irritates the stomach and can make you feel a lot worse and cause a lot of pain. Stay away from asprin too!
I know that you think it's all physical but the way you talk about how you think it's something more sinister does sound like you're anxious.. I have the same thing for a year I was positive the doctors had missed something awful. Truth is if anything like that was lurking in our bodies, the scans and blood tests would show it:m. Anxiety can cause all kinds of gastric symptoms which are awful. It's taken me over a year to accept that part of my problem was anxiety and after I did and started to treat it I became much more relaxed and the pain lessened as I was less tense, I don't feel too sick any more.
It sounds like you've gone through a great deal and you shouldn't have had to do any of it. If you're concerned about the internals ask for an X Ray and another MRI for peace of mind. But you need to trust the results, if they come back clear there's nothing crazy going on! Also, get re tested for H Pylori.. It's nasty and doesn't always go away with 1 set of anti biotics!
Really hope you start to feel better soon
Much love to you too chris...
I'm in agreement with abbie you should be tested again for HPylori because antibiotics doesn't always get rid of HP. HPylori is a bacteria that has a spiral tail (flagellum) that can burrow into the stomach lining and duodenum and hide and the antibiotics can't always get to it.
Yes, also stop taking ibuprofen it is a stomach irritant and if your stomach is already irritated by acid reflux its a no no.
Are you careful with what you eat?.....such as leaving out foods that will cause your tum to react adversely....leaving out spicey foods, citrus fruits, fizzy drinks, alcohol etc. Changing your diet can help and de-stressing will help too. You have to stop getting anxious as this will not help your situation.
I suggest you go back to your doc and get another HPylori test via stool or breath test....because you only assumed, initially that it had cleared...best wishes Chris...for a speedy diagnosis.....
To address your comments, what I said about ibuprofen was a one time thing, I've known about NSAIDs & their inflammatory effect in the gut for a long time so generally avoid them, as well as aspirin. Was prescribed 30mg tabs of codeine phosphate but they make me extremely nauseous. Don't get me wrong, they are superb for relieving abdominal cramps but I get pretty sick even on the minimum dose.
According to several of the doctors I've seen (including one recently visited doctor who has an identical relatively symptomless hernia), the moderate hiatus hernia I have shouldn't produce such profound symptoms.
Anxiety: no correlation between environment at the time & symptoms. It can come on out of the blue, doesn't always correlate with what I've eaten or drunk. Onset of pain can be on waking. It frustrates me that I can't pin down what exacerbates or relieves symptoms. It definitely isn't a psychosomatic or anxiety issue.
No obvious injury has been detected so that leaves infection or possibly genetic condition.
One again, thank you all for your replies! Back to the doc to check for H.Pylori I reckon. Antibiotic bombing from orbit might be in order!
finally scope showed intersticial cystitus , serious bladder inflammation.
treatment improved 90percent, and l,m not unique, many others with ic and other conditions gone on many years with different misdiagnoses, many dont show on blood tests, xrays,scans, some not even with scope, the worst seeming to be immune conditions. Sometimes its about finding gps who have open minds, prepared to examine and question then at least thinking of diagnoses for rarer obscure conditions as opposed to ones who go to phycalogical when blood tests scans some back clear. l hope for you it can be as simple as pylori thats come back, and know that can happen. l and others are in simular situation if not same symptoms, but suffering and bad affects on lifestyle, and have had blood tests ok, scans ok, tried different meds, changed diet, some help a bit, some dont, but still left with symptoms and no diagnoses, and it does wear away when it goes on and on. l,m on my own so struggle with practical as well as phycalogical, sometimes my little naughty dog makes me laugh and battle on, but also lve no one else to rely on me and can go my own pace routine or lack of it, but with younger sufferers others often reliant on them, so lve less stress in that respect, swings and roundabouts. But l am resistent to anxiety causes, if l feel even half reasonable l want to be out and about doing things, enjoying myself, and lve done that at times and actually fallen asleep with fatigue pain whilst trying to have a social life, , l also find it an ongoing battle with gps, and like you my trust erroded and tried to tell them how bad it is, they switch off, and despite them making huge mistake over my diagnoses or lack of it in the past, they dont take any more care or go to trouble with extra testing to look for the rare conditions in present, with many on mbs, who go on months, years with obscure or rare conditions hard to diagnose, budgets also influence. l hope you can get diagnoses soon and keep battling on for one, Take care lynnex
Hi Chris my name is Nawal. I am going through the same s**t. I am at the end of my tether too. Stomach feels like it's coming out of sternum. Constantly retching and nausea. No appetite......
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