Could I have Crohn's? :(

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For the past 6/7 years I have been told I have ‘IBS’ I have been to my GP’s several times over the years with excruciating symptoms. I can’t cope any more.

The abdominal pain and swelling is so severe, I can go from a size 10 to looking like I am about to give birth in the matter of seconds and it can last up to a 10/14 days at a time. They don’t go hand in hand, I can have both at the same time or pain without the swelling and vice versa.

I have diarrhoea/loose stools every day, they have blood and mucus in it more often than not. Sometimes it’s just purely mucus (Sorry for being so graphic).   

There are days I can’t get out of bed, my body feels so heavy, this exhaustion just washes over me and I feel so unwell and weak. When I do force myself to go to work or get up I feel sick and dizzy and get so disorientated it’s like I can’t think straight. It gets so bad in work sometimes I have to go to the toilet and lie down on the floor in the cubical. Other times I go in and cry with the pain, I feel like I’m in labour.

It’s really starting to ruin my life. I have had a few ‘accidents’ over the last couple of months, now I get serious anxiety about going ANYWHERE and always carry an emergency pair of trousers and pants everywhere I go.

The doctors have told me its IBS; I have been sent to dieticians and been on every diet under the sun, Low Fodmap, Gluten free, Low Fibre, High Fibre, No lactose. I don’t smoke, drink fizzy drinks or caffeine. You name it I’ve tried it!

I had an Endoscope and colonoscopy a few years ago (Maybe 5 or 6), as far as I’m aware the Endoscope was clear and they couldn’t complete the colonoscopy (I don’t remember the reason). The symptoms have always been there but now I feel like each episode is getting worse than the last.

I have been given Buscopan, Peppermint Oil, Omeprazole, Mebeverine, none of which help the pain or swelling or relieve the symptoms. I was once referred to a gastro at the hospital and when I went to my appointment it honestly lasted no longer than 3 minutes and she sent me away with a prescription for medicine to help loosen my stools? (I never collected it, it’s the last think I need) I came out and burst into tears. I feel like I am trapped inside my own body and no one is willing to help or listen.

I have been to hospital 3 times with these symptoms, twice I was sent home with Buscopan (No tests, just an initial examination) the last time which was January of this year my GP sent me straight to hospital after taking my blood pressure and feeling my stomach, he said he couldn’t rule out a suspected appendicitis. When I got there they took blood tests and admitted me. It wasn’t an appendicitis but I was told my bloods were ‘UP’ and that I had to stay in.

There were no beds in the gastro ward and so they found me a bed in a surgical ward. Each morning when the doctors were doing their rounds I was told to fast as I was scheduled for a colonoscopy/ Endoscopy and that gastro would come down and get me. They never did, every day I was told the same thing and at around 6 o’clock each night I was told that actually gastro were really busy and that I would get my tests the next day (I never did).

Since I was admitted I was told to hand my stools each time I went to the toilet so they could send them away for testing. There was of course blood and mucus in it (which is completely normal for me).

There was one surgeon that kept checking in on me while I was in, he told me that my history and symptoms along with my blood and stool samples made him think I had Crohn’s Disease but that I was a gastro case - he would constantly tell the nurse to call up stairs and let them now I was still here waiting. This is going to sound strange but I honestly felt so happy, like for the first time I finally had an answer for everything that was wrong….However L

After spending 5 days on the surgical ward a gastro doctor came and seen me for the first time and I told me that I actually had food poisoning and that I was being discharged. How is that possible??? It was the same symptoms that I get over and over, surly I can’t be getting food poisoning constantly…Can I????!! I burst into tears when she said this and actually asked her if It was possible to keep getting food poisoning. Her reply was that yes it is possible to keep getting campylobacter if you have HIV? I was so stunned, so she took blood and told me she would send for a HIV test and off I went. (I don’t have HIV fyi).

My discharge letter said I was admitted with a CRP count of 98 and abdominal pain and swelling and that if symptoms reoccur within 2 months I was to go back to my doctor. I did this and she referred me back to the gastro at the hospital again, and took more bloods. I was called a few days later to let me know my blood tests showed that I have a vitamin D deficiency but still don’t have the gastro appointment yet?

Its ruining my relationship, my career, and by everyday life. I have no idea what I can do. The first time I ever heard of Crohn’s was when the surgeon mentioned it at the hospital and since then I have read up on it. To be honest I am convinced I have it. I can relate to other sufferers symptoms and flare ups. BUT on the other hand I’m not a doctor! Is it just IBS, is it food poisoning? It’s came to the point that hate going to my doctor I feel like a nuisance. I can’t believe no one has suggested Crohn’s before. Or is there a test to completely rule it out, as this could have been done via the blood tests, maybe, which is why they haven’t mentioned it?? I honestly don’t know.

I am sick again and have been off work for 4 days because of all the symptoms I have described. I guess I am writing this for some advice and to half vent. Sorry for the long post but I really am at my witts end.

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12 Replies

  • Posted

    Hi

    I think you need to change your doctor and they can tell if you have Crohn's from your stool sample and blood and a colonoscopy

    The fact that they didn't complete it makes me wonder if they have missed it because when I had mine they didn't find Crohn's until they got right to the end of the bowel so I think you should go back and tell them you want it done again properly

    I had the same symptoms as you and everything the doctors said it wasn't like appendicitis so I think you could well have Crohn's

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  • Posted

    Hey Jennifer,

    I have just read your post and am so sorry to hear of such an awful time you have been having.

    I was no way near as bad as you, but have been suffering with horrific abdominal pains and bloating since April, urgency to go to the toilet and generally feeling unwell. I was on omeprazole for a few weeks, admitted to hospital 4 times due to the pain, my CRP was going up and up and all they could suggest was gastritis. After countless visits to the doctors and being told to avoid acidic foods and drinks (this did not help in the slightest) I decided to pay privately to see a gastroenterologist.

    I haven't experienced half of what you have, but I couldn't take the pain anymore and needed to find out what it was. It was very expensive to see a consultant - but I booked a colonscopy for 5 days later (again - very expensive) but had to be done!

    I received my biopsies yesterday but was put on steroids immediately after the colonoscopy. This helped with the pain a lot! More than any other medication they had given me. Had no idea it was going to turn out to be Crohn's after months of being told I had an acid reflux and gastritis.

    I know that not everyone has the money, I certainly didn't myself - but for me - paying to go private was the only option and they are now feeding me back onto the NHS for other tests which hopefully I won't have to pay for.

    I would suggest looking for a private gastroenterologist local to you and they may be able to help you from there. Going private is very different to the NHS because they have the time to actually look at you individually and someone may finally take you seriously.

    I hope that someone is able to help you and you start to feel better soon.

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  • Posted

    So sorry to hear you're having such a sh*tty time (no pun intended) I think you should change your doctor or ask to see someone at your practise who specialises in gastro things. Voice your concerns about Crohns. Ask if you can be tested specifically for it (if you haven't already) Don't let them fob you off... it's your life being ruined, not theirs! It took over a year for my crohns to be diagnosed It's 26 years ago now so hopefully tests are better nowadays. I felt like they thought I was making my symptoms up! Have you had any weight loss?

    Good luck, keep us updated... and don't give up! x

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  • Posted

    First of lety me say that I a very sorry for what you are going through. It appears to me that both your doctor and consultants are not experienced enough. I am firmly convinced that IBS is just an excuse when the don't know what it is. As I have now said many times on these forums I have had crohns for 52 yrs and in those days there was little known about this complaint, like yourself I had never heard of it

    ?Another similarity to your self was that I was rushed into hospita with suspected appendicitisl.I had my appendix removed but it was during that operation that found that I was also suffering from crohns. It seems that expority surgery is one way of making sure..  I would certainly look into finding another consultant with more experience of this complaint, I cannot believe some of the thing that they have come up with, food poisoning indeed.that has lasted for 5 yrs. I am appalled how long it is taking to diagnose patients.  There is a new procedure out now where you swallow a capsule that incorporates a camera and takes photo's of yout whole gastric tract where endoscopy and colenoscopy can some time miss out some parts of the tract. I hope that you soon get a diagnoses so that you can start getting the correct treatment.I am sorry that I cannot be of more help.Keep me informed as to your progress.

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  • Posted

    Sadly your story does not sound unique...

    I struggled for years, about 10 years ago I had a colonoscopy & told on the day that I had Crohns disease. However when I went back a few weeks later for the lab results I was told they were normal and had IBS.

    Eight years later & a new GP who I'd seen a few times re IBS & I described the pain in comparison to the birth of my two kids without pain relief. His words were almost a relief "That's not IBS!". A few months later I was diagnosed with Crohns!

    I wouldn't accept the food poisoning line - do you share a house / meals. Anyone else at the same time? That was one of my arguments, odd time you may get a bug & the rest of the family escape it but a dozen times? I now know they were Crohns flares and obstructions due to strictures. You need to push for repeat of colonoscopy or an mri scan. Blood/stool samples need to be tested for inflammatory markers.

    Good luck

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  • Posted

    Hi Everyone,

    Thank you so much for taking the time out to reply. It means so much to have people that understand.

    I think I'll go to the doctors and beg one last time for more tests and then seriously think about going private, i can't go on like this!! It seems everyone has had a hard time of being diagnosed sad. Of course it might not be it Crohns but all I want is for someone to take my serious and get to the bottom of what's causing this!!! Xxx

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  • Posted

    Hi Jennifer,

    How awful for you. I really can sympathise. It took a while for me to get a diagnosis - if you click on my username I think you should be able to view my other responses that detail everything.

    Have you had a calprotectin stool test? You can ask your GP for this. A high calprotectin level indicates inflammation in the intestines ( IBS does not cause inflammation but IBD does so this is a good indicator and I think is the only reason that I managed to get a referral to a GI for further investigations) ( it's also worth noting that other things can cause inflammation in the intestine - the key thing is that if your calprotectin level is high then they cannot just tell you it's IBS).

    I agree with the other post - if you can afford to it is worth getting a private appointment to see a GI consultant. I did this. I paid £250 for a consultation and was able to get an appointment the following day. I then asked to be referred back to the NHS ( was kept under the same consultant).

    All of my blood tests, colonoscopy, MRI came back clear. I became so ill and honestly wondered if I was imagining things were worse than they were or if I was just being a bit pathetic. Like you I was having to go back to bed during the day.

    I eventually managed to get the pill cam procedure done ( capsule endoscopy) on the NHS ( it costs around £1000 if done privately) and got my diagnosis from this. It showed that I have Crohns in my proximal, mid and distal small intestine. I have extensive ulceration, mild stricturing and cobblestone mucosa ( meaning I've had it for a long time) ( incidentally, my pain started around 7-8 yrs ago in my appendix region) and have been told that I wouldn't be a candidate for surgery as the whole of my small intestine is affected. ( both my mum and aunt have had surgery to remove an affected section of their intestine and both are med free now).

    I still find it hard to believe that all of my tests were coming back clear yet my disease was so extensive.

    This disease can be difficult to diagnose but don't give up. Keep pushing - I know how hard it is when you are feeling so ill. I eventually went back to my doctor again and told him that I had reached my limit and couldn't cope with the daily pain anymore - he was very good and helped to speed up getting the pill cam results through which can take around 4 weeks normally.

    Once I had a diagnosis and treatment things improved very quickly.

    I hope that you can get some more help. Please do ask for the calprotectin test. Even if you have had it before, if your symptoms are getting worse it may have increased even more.

    I had one doctor tell me that they'd expect something abnormal to show in my bloods if I was so ill - don't let anyone tell you that - I knew it wasn't true as my mum had clear bloods yet had to have emergency surgery for her Crohns ( it took years for her to get her diagnosis and she also ended up going private as her gp was prescribing anti - depressants!)

    Sorry it's such a long post. I hope that something I have mentioned might help.

    xxxxx

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  • Posted

    Just another thought. It might be worth contacting Crohns & Colitis Uk. I think they have a contact number online - they may be able to give you more advice xxxx

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  • Posted

    I'm so sorry for the trouble you're having getting diagnosed.  I had horrendous trouble 32+ years ago, I kept repeatedly going to a GP and he kept brushing everything aside, weight loss was because I was running around after two young children: substantial hair loss, (I thought I was going to go bald) skin rashes and sores, period problems all being exagerated, abdominal pain that was IBS, my own fault I was worrying too much etc, etc.  I was treated as a hypochondriac.  He never once took blood tests or even my blood pressure that I can remember.  It wasn't until my husband bluntly told the GP he buried his mistakes that we abruptly changed surgeries.  We were accepted by a new surgery on Friday afternoon, I saw my new GP Monday morning and he called for an ambulance from the surgery.  The excessive pain and swelling in my tummy was being caused by Crohn's abcesses forming, bursting and bleeding into surrounding tissue.  It took time to sort out what was going to happen next.  Eventually I had surgery and I've never looked back.  Okay I get very jittery and worried from time to time, but I'm so lucky..

    I think you are now at the point you need a different GP.  I wish you good luck and I hope someone somewhere will diagnose what's wrong and how it's going to be treated.

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  • Posted

    This sounds so much like what my son is going through.  He is having Calprotectin done but the doctors think its pubuerty, IBS, or anxiety.  They don't know my son.  Having severe pain to me where you can't bend over, wake up in the night, cannot participate in PE, Etc seems more to me than what my son's docotors tell me.  They refused the MRI, refused the pill cam, refused the colonoscpy.  I feel like no none cares about the pain my son has been in since January.  

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    • Posted

      Hi Michelle,

      I am so sorry that your son is going through this. After posting on here I found the encouragement I needed to make an appointment with another doctor and basically demand further tests.

      I guess I just needed people to confirm that I wasn't going mad!

      After going to the doctor I burst into tears and just told her I couldn't live my life like this Ny more. She ordered a stool sample and referred me for an urgent hasbro appointment (I'm still waiting on this)

      I guess just try the same thing. Go to the doctor again and tell her you are at the end of tether. Your son deserves to be taken seriously. sad I really hope he gets the tests he needs! X

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