Newly diagnosed. Gp didn't take me seriously!

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I have just had my Crohns disease confirmed following an MRI scan and colonoscopy. I was called to see the consultant for an emergency appointment after the MRI and he confirmed crohns and wanted to operate that same day and do a right hemicolectomy before my bowel erupted. Such a massive shock. I have had symptoms since I was a teenager and I am now nearly 40!!!!

My question is has it been hard for anyone else to get taken seriously by their GP. I was told I had IBS when I was 19 and that diagnosis followed me for nearly 20 years. Something only happened when I went to the GP and made a massive fuss insisting they refer me to someone. They did, a dietician!! She took a few months and put me on various diets but nothing helped. Eventually my GP agreed to do a blood test ( ESR and CRP ) and also tested a poo sample. My inflammation levels were through the roof.

I am now three days post op hemicolectomy. I was so lucky not to have to have a stoma as that was really have finished me off.

I feel so disheartened by my Gp's lack of interest in my symptoms and I blame them entirely for my emergency surgery. If I was diagnosed and treated muchvealier it may not have come to this.

I am yet to discuss treatment and future prognosis as it has happened so quickly. Awaiting an appointment!

Does anyone else have similar experiences with diagnosis or have I just been unlucky?

Any advise regarding treatment, alternative therapy would be greatly appreciated. Thank you in advance. X

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  • Posted

    Hi, I started with various symptoms when I was 21 and I just turned 40. Initially I lost almost 2 stone and weighed just 6st 12. I was told I had ibs, referred to a dietician, told I had anorexia, u need it I had it. Eventually I collapsed during an interview and in a+e they found I had B12 deficiency low iron and Foliate. I was treated for this and referred to gastro at my local hospital. This did normal xrays and discharged me saying I had ibs and malabsorption. I was in a lot of pain in my right side yet they said the xrays showed nothing. Several admissions via a+e with a high white cell count and they took my normal appendix out!! All my records say "regional enteritis" but nobody has ever said I actually have crohns. Once again I was discharged. The same pain continued, my GP refused to refer me back. I have regular bouts of diarrhea and vomit. I now have a diet reduced to ham sandwiches rice and gluten free pasta basically! Last August I begged to be referred once more. Reluctantly they did as I asked. In almost 7mths, I've had 2 appointments, a colonoscopy 5 days ago and a small bowel barium 10 days ago. Both were "normal". My stool samples show inflammation yet it looks like I will be discharged again :'( Nobody appreciates the pain I am in daily. I wish u a speedy recovery, I'm sorry they got it so wrong for you
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    • Posted

      Hi Jo

      Thanks for your reply. I intend to take it further with my GP surgery. It just isnt good enough.

      Have you still not been diagnosed?

      You get yourself back there and insist. It was the only way I got any answers A little too late admittedly but it could have always been worse I tell myself.

      The whole diagnosis regime needs to be improved for us all. Such a evil disease. Good luck and hope they sort you out!!

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  • Posted

    I'm having the same problem however not had to ensure anything as drastic as you! I do feel that it's a similar scenario and I find no one is taking me seriously, not even my mum. As a fellow sufferer you'll understand that it's not something that we want to have but my mum seems to think my I'm over exaggerating. Its becoming quite a depressing scenario to be in pain, not be taken seriously, fobbed off with excuses then still be in pain.
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    • Posted

      Hi Stace

      When you are suffering go to A&E or your GP. They will eventually do something just to get rid of you. Don't leave it any longer. Sit in the GP surgery until they refer you to Gastro. Gp's are so consumed with budgets they forget about the patients sometimes. If your mum won't support you, take a friend or other family member. Dont go through it on your own. Make an appointment, even if it isn't crohns you shouldn't need to suffer like you are. Be strong and don't be fobbed off!! Xxx

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  • Posted

    No diagnosis yet Sally no sad I'm really not sure how much more I can cope with in all honesty. I've taken ibs meds for over 20 yrs now and whilst they do help when I'm crampy, nothing shifts the toothache type pain deep in my right side. I don't see how they can discharge me after saying I have inflammation in my stool but that's what I got told after enduring the delights of Mondays colonoscopy!
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    • Posted

      Colonoscopy is so horrid but worth it for me anyway. Ibs medication did nothing at all to help me. Try and be positive and keep fighting. As I said to Stace go to A&E when you are really bad. Let them see what you put up with. I admit I didn't and suffered in silence believing it was only IBS. I speak from experience Get it sorted. Keep going u til they get to the bottom of it. Good luck xx
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    • Posted

      That's my next plan of action but I'm a single parent and my children see me suffer enough. I keep going to maintain normality for them as much as anything. A stint in hospital would really upset their routine sad i will keep pushing for further tests. Thanks for the advice. Good luck to you x
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    • Posted

      Thanks Sally, I think I'll keep doing that. U feel like it's actually causing me to feel depressed, do you ever get feelings like that?
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    • Posted

      Hi Stace, I just joined the chat with Sally7777. I too suffer with Crohns, and have done for a while. Sometimes when I was I'll my friends and family seemed to turn a blind eye, as if I was imagining my pain etc. This got me right down, when my GP didn't diagnose my condition straight away, this made me question myself, am I really I'll ??? The answer was YES..........if in doubt, seek help, visit a&e, get it sorted asap, you know your body if its telling you " hey Stace, fix the poison that's causing this pain ". I hope things improve, and that depressing thoughts become positive happy ones, looking forward, into a future of uncertainty, you gotta smile and banish the depressive thoughts you battle against. Best wishes, Paul.x
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    • Posted

      Your children would want you to be well and it wouldnt be forever. They love you and want you to get better. They will adapt to a new routine. Kids are great medicine as well, makes you want to get better quicker for their sakes. I have two children myself and they have been just remarkable. Do not underestimate them. Xxx
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    • Posted

      Hi Stace

      you do worry me. I have had times of depression but I am so lucky to have wonderful parents and sister and my fantastic husband and amazing kids. If I was going through this on my own I don't know where I would be. Surely you can chat to your friends or siblings if you mum can't help. You are never alone. If I could I would be there with you. Keep battling on......promis? xxxxxx

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    • Posted

      Hi sally, will keep battling on. I'm just finding that everything that is going on has kind of made me question my sense of who I am. My story is a pretty confusing one, they believe I have ended up with something like ibs or crohns after I nearly died from septic shock last year. I don't think I've really every got over the idea of waking up in intensive care and in some senses I get angry with myself as I feel that I've almost been given a second chance and I'm not fulfilling it. Also the icing on the care was my boyfriend breaking up with last year during my second stint in hospital. The whole thing stresses me out and people seem to think I'm just milking it. But who genuinely wants to be Ill you know? I also get annoyed with hospitals and GPS perhaps more so as I'm studying health and social care and I'm leaning about correct procedures and practices and just see so many bad (as well as good) which is annoying! Thanks though, will try and talk to my friends but always feel like I'm bothering them going over the same stuff again. Xxx
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  • Posted

    Hi Sally, As a fellow Crohns sufferer I know exactly how you are feeling, and know first hand what you are experiencing. Like yourself, I first went to my GP when I was a young 19 !!! I had been really I'll for about 6 weeks, I had sickness, diarrhoea, and I lost a lot of weight. I visited my GP for a third time, he just told me to eat some toast and I will feel better in the morning. The next day my condition deteriorated. I booked an emergency appointment at my doctors, this time seeing a locum doctor, her words were " paul , you look like sh*t", she sent me straight to hospital, and I, like yourself had an emergency right hemicolectomy. This knocked me for six. I was a fit, young, live life to the full guy, then bang.....Ill for months with Crohns. I was diagnosed with Crohns immediately, unlike you, and I really feel for you not knowing the source of your problems. Twenty years on, and I still receive treatment for the disease, I've had two resections, my right hip replaced (due to the steroids, prednisolone, disintegrating my bone....ouch). And countless MRI scans, colonoscopys and infliximab treatment. My mum passed away two years ago with cancer, after suffering with Crohns for many years, having a stoma etc. She always lived life to the full though, and that is my outlook on life, you will get through this Sally, only last tuesday I had a colonoscopy and Christ it hurt (even with sedation), but tests like this are sooooo important. As for my GP letting me down, yes he did. I made a formal complaint but got nowhere, when my mum passed away, who was under the same GP, and he didn't detect cancer, my dad complained to the local health authority and he got struck off. Good riddance !!! We have such a lot in common. I hope you keep smiling and never let this disease get the better of you. Paul?xx
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    • Posted

      Thank you Paul. A very similar story indeed. I will never let it beat me. I have too much to look forward too. Just so discussed at my GP-s negligence and doubt in my symptoms when I knew something was definately wrong.

      I am now in the right hands and things can only get better. Yet to start treatment so that is the next step. Thanks for your reply and I hope thing go okay for you in the future. X

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