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 sally7777 I had same thing being fobbed off with IBS diagnosis for years. Eventually a different GP suggested proper investigations which resulted in a crohns diagnosis. A year later after two partial blockages I also had a resection and had the diseased section of bowel removed. So far 5 years on I have been doing ok, had the occasional problem but nothing like before. Hope you keep well and take it easy it's a big operation and takes your body a while to recover.
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    • Posted

      Thank you nannylin.

      One thing I have learnt is that my husband makes a wonderful nurse and he CAN work the oven and washing machine after all.

      Always look on the positive side. Lol xx

      Thanks for you reply. X

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  • Posted

    Sally we are all just in that exclusive club where you end up ill yet nothing seems to be the course of it they thought i had a grumbling appendix but refused to take it out I had been ill for years before that on and off from about the age of 23 but it had cost me jobs as I would be rushing to toilet boss would say you've just been and had no idea or compassion I used to fall asleep at my desk as after each toilet break I felt drained then I got diagnosed with ibs which was docs way of saying I don't have a clue and taking easy option thankfully I moved and got a different doc and he started investigating properly he realised I was becoming depressed with it too and dealt with that think i was 28 when i finally collapsed again with a suspected appendix then finally day of the op a specialist said he didnt think it was that so i had a ultrasound to check then the fun started with in a week i had a colonoscopy and all sorts of tests found a swelling in the lower bowel I still have arguments now as I feel ill so regularly yet I'm told I'm in remission so I give them hell each time plus joining this site I realised most sufferers are not pain free and still have good and bad days that put my mind at rest more and I have it under control at the minute
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  • Posted

    I'm glad you're feeling better after your operation. I've had Crohns for nearly 40 years. Before it was diagnosed I was taken to hospital many times only to be told it was constipation. The last time I had collapsed and they decided it was my appendix, only when they'd opened me up did they realise it was Crohns. I had a bad couple of years then remission for nearly 30 years but it came back with a vengeance. 2 years ago I had most of my intestines removed and part of my bowel. My surgeon was excellent and I dont have a stoma so am very relieved. Early or late, Crohns catches up with you eventually but hopefully now you've had your operation you'll go into remission again. It's 2 years since my op and I feel great, I'm tired most of the time but I can live with that, it's just nice to be pain free. I wish you well for the future x
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    • Posted

      Thank you Chris. Be lovely to be in remission for a few years. I have had so many years being in pain I had forgotten what it is like to feel normal. I am seeing my Crohns Consultant for the first time some my operation on Tuesday so hopefully he will have some good news for me.

      I hope you stay pain free for some time as well. Makes life so much more pleasant.

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    • Posted

      Before my operation I was in hospital so many time I got to know all of the nurses and families. I didn't think the operation would make such a difference but it did. I've asked what will happen when it returns but they dont want to discuss that yet so I'm keeping my fingers crossed. I still take lots of medication, humira, salazopyrin, methotrexate to name a few. I hope your consultant comes up with the right stuff for you, lifes too short not to be able to enjoy it xx

       

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    • Posted

      Hi Chris

      After seeing the Consultant yesterday he has not started me on treatment which I was surprised about. Suggested possibly I start Azathioprine or no treatment. He has left me with that decision. I am undecided but thinking if I can not take medication and be ok i will do that. No point putting drugs in me unless I have too.

      He thinks I am in remission now but still a little early to definately say as still early days after my operation.

      Will see what the future holds and maybe hit the hard drugs when and if symptoms reoccur. For now think I will stick to Aloe Vera and chocolate!!!! 😃

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    • Posted

      Go with whatever you think is good for you. The first consultant I saw all those years ago gave me some good advice - put up with it as long as you can because once they start operating it carries on. I put up with it for over 35 years but in the end even the medication didn't help so I went for the op. They were suppose to remove a stricture about 18" long but ended up taking most of my intestines and part of my bowel. Saying that, I feel better now than I have in years. I'm still taking tablets but things are going well. You know your own body and how much you can take, listen to it and be guided by your consultant x

       

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    Hi everyone I've been reading all your posts and can't believe how much it sounds like me. I've been suffering with bad stomachs as long as I can remember my whole teen years have been full of doctors visits I got diagnosed with ibs when I was about 15 but I'm not better. I've just been discharged from hospital after a 4 day stay where abomial pain seen me in a&e and the doctors just say we don't know. I'm battling with consent water infections and contact pain, my work don't like me having so much time off which gives me more stress to deal with
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  • Posted

    Hi Sally, sorry to hear that you were ignored for so long. I'm in a similar situation. I'm 20 years old. When I was 8 I had extremely painful anal fissures. They came back a few times but I can't remember it that well. I've had excruciating pain through my teens but always put it down to menstrual or growing pains. I went to the doctor when I got on and off diarrhoea and constipation. They told me I had IBS. When I was 17 it became extremely painful to eat and I lost weight. I was refered for a colonoscopy and endoscopy which showed that I had a stomach ulcer. I was given omeprazole, the doctors didn't really talk with me about it but on my medical records it says that it was NSAID induced. Which is rubbish because I only ever take paracetamol and that's a rarity. I don't drink and I don't smoke or eat spicy or irritating foods. A year later the pain returned I had another colonoscopy and endoscopy. I had yet another ulcer, inflammation and bleeding around my lower stomach and start of my small intestine which they said was duodenitis. I was given lanzoprazole this time. I was tested for celiac disease (negative) and told to try loads of different diets. I tried everything and nothing worked. The pain returned when I was pregnant in mid 2014 I had another colonoscopy which showed inflammation in my rectum. The surgeon told me he thought it could be IBD. I had never heard of it before so he told me a few websites and gave me a leaflet. I was refered to a gastroenterologist. In the meantime I did research and I seem to have nearly every symptom of crohns. It made sense to me. IBS has left a lot of symptoms unexplained. I'm extremely tired, I cannot stay awake for more than 5ish hours at a time. I have on and off anaemia. I am losing blood in my stools and that's to make a few unpleasant symptoms. A few weeks ago I was admitted to A&E because the pain was so extreme. I was told the hospital was understaffed because of the strikes and that they didnt feel i needed emergency surgery so i was sent home with codiene. They also found out I had a UTI and told me they would hurry up my gastro appointment because they did think I needed urgent attention. I went to see the gastroenterologist last week hoping to get some answers. The gastro doctor said I was just experiencing bad IBS and that I should try a low fodmap diet and peppermint tea (I have already tried both and neither helped) I felt very angry, but stayed composed and I told her that I was told it could be IBD and that I agreed with that suggestion. I've given a stool sample for faecal calprotectin tests and she said she can get me an MRI but after that she doesn't think I need further tests. I'm really upset because I am in so much pain and I'm exhausted. I'm also losing blood every time I pass stool. She just seems to be brushing this aside. I passed watery diarrhoea earlier and i lost a lot of blood. Around a cup full. Does anyone have any advice? I'm in the UK by the way.

    Sally I'm glad you finally got treatment I really hope things get better for you and I'm sorry it took so long for you to get diagnosed.

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