IBS turned out to be IBD

[STC789]

Hi all,

I thought I would write a little post about what happened to me in the hope it will help others.

For a good few years now, my stomach has not been normal. I had on and off diarrhoea, constipation, blood in stools, mucus, cramps, aches and pains- you name it! The past 6 months, the symptoms quickly became worse and after about 7 or 8 trips to the doctor (and failed attempts to 'cure' using anti spasmodic pills, laxatives, stool softeners), I finally got a referral to the hospital.

I got an appointment for a Flexible Sigmoidoscopy (just the large bowel) and the nurse found moderate-severe inflammation so done a full colonoscopy there. They took biopsies and said it looks like Ulcerative Colitis and they're surprised at how long I've managed to cope with it. The inflammation levels in my blood was at 130 when it should've been under 5 and I was admitted to hospital straight after my appointment. I was given a drip with steroids to bring the inflammation down. I was also anaemic because of the blood loss I had been experiencing.

This came as a complete shock to me and I felt very upset by it all. I thought it was IBS and was trying to treat my symptoms by cutting dairy/wheat, taking amitriptyline and all these other pills. i hope this encourages people to consult their doctors and push for testing, I wish I had managed to get a referral much sooner. Since my diagnosis, everything has moved so quickly. I'm now back home after a week in hospital with medication. I've heard this is a good thing as it can be treated and people can go into remission for years.

I wish everyone all the best. Please do not be afraid to push your doctor for a referral and don't try and diagnose yourself. I've been very poorly for about 6-8 months now and I keep thinking it could have been avoided if I had been seen quicker.

Xx

[patientj]

That's great news. Really happy that you've got a diagnosis, even if it has taken this long. One question, though: did your GP never take any blood tests to rule out signs of inflammation? For you to have a score of 130 and for something to have been missed out sooner is extremely surprising...

[STC789 in reply to patientj]

Thanks for your kind words. That's what I'm confused about too. I had blood tests done back in March but they came back normal. The doctor said that I could have been in 'remission' then and wasn't going through a flare up. Or the inflammation has just come up in the last couple of months. I've to go for a follow up appointment next week so will find out more.

[Mazer]

Hi, so glad you've got a proper diagnosis which can now be treated. Did you have a stool sample tested for IBD before the hospital visit? I've recently had one sent off (not got results back yet) so wasn't sure if they're accurate or whether I'd need a biopsy to be sure. I've been suffering for about 8 months now back and forth to the doctors. I actually think I may have mastocytosis or histaminosis, but feel the doctor may not even know what they are and just ignore me when bringing them up.

[STC789 in reply to Mazer]

Hi Mazer, thank you- it is a bit of a relief! I done a stool sample and blood tests around 6-7 months ago to test for coeliac, crohns and colitis but they came back normal. The doctor thinks I may have been in 'remission' at that point or the inflammation just came around the last few months. I had to get biopsies to confirm my diagnosis through a colonoscopy. I done a stool sample whilst I was in the hospital but they never said much in the way of the results from them, only the biopsies. I would push to be referred, once I went into hospital, everything went so quickly. I wish you all the best x