I have just heard some appalling news from the IBS Self-help Group bulletin board, where I am a moderator. One of our members, a 13 year-old girl, has died following emergency surgery on her bowel.
This is tragic news in itself, but what makes it even more terrible is the way in which she was treated before she died. Doctors told her that her illness was psychiatric, and because of this assumption they failed to properly investigate her problems.
This is my heartfelt plea to the medical profession - call IBS a psychological disorder, tell us it's all in our heads, well that's fine - but please, please make sure that you have diagnosed the patient correctly, that you've made sure that it's not celiac disease or endometriosis or lactose intolerance before you leap to the psychiatric conclusion, and that you then offer some solutions. A pat on the head and a reassuring smile really ain't gonna cut it anymore.
I have reproduced below a quote from one of the 13 year-old's last posts. I hope she wouldn't mind me quoting this here, as a tribute to her and also as a warning to anyone who makes lightning quick assumptions about what really lies behind our symptoms.
This is also a warning to patients: if you have symptoms this severe, always, always ask your doctors for further help. Weight loss in itself should have been a warning sign, as it's not usually a symptom of IBS; and anyone who has pain so bad it makes them scream deserves a lot more than a psychiatric referral.
"I am 13 and three months ago I started vomiting after eating, vomiting in my sleep, having severe pain in my abdomen making me unable to walk. I lost about 30 pounds. I went to my doctor and he explained that my pain was psychiatric without attempting to help me. I was basically wasting away by the day.
He sent me to be evaluated by an eating disorder clinic because he told me that usually people who have head problems like IBS have other psych problems (SO untrue). Of course I was told that I did not have an eating disorder and my doctor still told me I did. One night my pain got so bad that I was screaming bloody murder. I was taken to the ER and admitted to the hospital that night.
It turned out my doctor was wrong, I have chronic infection in my gallbladder and appendix. I was in the hospital for four weeks and got extremely sick. Because of my IBS and the stereotype put on it I almost died."
oh my god...how tragically sad, a pointless and totally avoidable waste of a young life. I hope her dr gets the royal pants sued off of him. That won't bring this child back, but like I wrote before, $$ talks and seems to be what doctors understand. I am so very sorry for her family. Also--how scary and what a wakeup call, this could be happen to anyone who has symptoms while the doctor believes they're "head cases"!
so very sad my heart goes out to her parents this is such a tragedy
This is truly awful, I guess we can only hope that something good might come of it, and that this message might hit home to doctors who read about it. That's just terrible.
x
My prayers and thoughts go to the family at this most terrible time.
x
i would invite that doctor to come and sit outside my bathroom any morning, about 9 o'clock - and no way could he dismiss the moans issuing forth as something to do 'with my head' - they are a direct result of the acute lower abdo. pain that I am experiencing !!! I feel very sorry for that family and also feel that their faith in modern medicine must be totally shattered. Is it a case of 'let's get the patient out of the surgery as quickly as possible' or a total lack of understanding of what is going on ? Mainly the latter I think - I would not wish IBS. on anyone, but perhaps if that doctor could experience what we all go through, he (or she!)would think more than twice about dismissing it all as something in the head.
My most heartfelt condolences to this girls family. I want to say "Wow, I can't believe it", but of course I can. I am a relative IBS-baby, having had it just under 2years, but have already experienced this agonising dismissal by a doctor who felt my problems were 'nothing serious'. Luckily for me I have private medical insurance through my father's employment, and I went back and insisted to be referred to a consultant. He did all the relevant tests, and diagnosed me with 'Post Infection Disorder', as I had had 2 very severe cases of gastroenteritus shortly before my symptoms started.
Whilst he did not give me any help, such as medication or diet advice, at least I had the peace of mind that every investigation possible had taken place and that I need not worry it was something life threatening, like that poor girl.
I am stunned that, in this day and age, when IBS is more understood and easily diagnosed than ever, this could happen. What would it have taken to diagnose this serious illness in this girl - maybe one investigation? It is absolutely tragic that, through a doctors ignorance and small-mindedness a life is snuffed out before it ever got the chance to really get going.
Maybe, if we all talk about this as much as possible, and post it on every bulletin board and forum we come across, something can come of this tragic and unnecessary death - maybe doctors will finally realise it is JUST NOT GOOD ENOUGH to dismiss someone like that.
I am so sad and angry. I can't even imagine how that girls family is feeling.
Shocking.