Advice needed please!

Hi everyone,

Some advice and any resources etc that could help me (based on your own experience/diagnoses) would be really appreciated! I haven't been diagnosed with IBD but would like to push GP for a colonoscopy or something of the like to test for IBD, I'll outline my reasons below and hopefully my symptoms will ring a bell with some of you and any advice as to whether I should ask to be tested would be great!

I've suffered with fatigue that isn't corrected by sleep for nearly the past 5 years. Have been suffering from bad episodes of abdominal pain for the past 2.5 years- it's not constant, I can have days or weeks where I'm fine pain wise, but then can have periods of weeks where the pain becomes unbearable and absolutely floors me.

I have a mix of diarrhoea (mostly) with some constipation- I say constipation, it's not like I'm blocked but my stools are almost like little rabbit pellets- not overly hard but just this small size and shape. Have had blood mixed in the stool and also when wiping- not all the time. Maybe once every week I spot this. More frequent when the pain is bad. Have also had streak of blood in mucus when I wipe. Bloating and nausea are major problems.

My blood results have all been 'normal' at GP but none of these bloods have been taken when my pain is very bad. However I have borderline low folate, ferritin and B12. Haven't had any other vitamins tested so unsure if I'm deficient/borderline deficient in anything is.

B12 results have been 180ng/L (2012) and 192ng/L (2015)- 180-1000

Ferritin was 20 in 2012- range 10-300

Folate was 10.6 in 2012, 7 in 2015 - range >4

Technically none of them are deficient (except B12 as am currently 18 so child reference values state I would be deficient). However it appears as though there could be an absorption problem across the board (??)

I have never had a colonoscopy or endoscopy etc done. Had pelvic ultrasounds and a CT ureter/kidney/bladder scan- scan in October stated my small intestine was swollen/inflamed- GP said this would've swollen because I felt pain? And not to worry about it. Confused by that.

In 2015 I was supposed to be referred for IBD testing if antibiotics didn't clear my pain but it never happened.

Is it just me being crazy, or does anyone on hear think from my symptoms I have the grounds to push for a further investigation of this?

6 Replies

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  • I would find it easier to respond to this and other requests for opinions if I knew in what country the writer lives. As a U.S. resident, I know just enough information about the health system in the UK to know that navigating the health system there is different than the one here. With my insurance here in the U.S., I would not have to present grounds to push for a further investigation of my symptoms. I would just state my symptoms and my medical provider would investigate further.

  • Ah sorry about that! I'm 18 and from the U.K. 😊

  • I think that the mention of "Have had blood mixed in the stool" would get a response from any medical provider and warrant further testing. You are wise in wanting a colonoscopy.

  • Hi, my name is Tommy, I live in Scotland. I have had Crohn's disease for 10 years, from the age of 45. I pretty much constantly have mucus and blood in my stools and huge amounts of flatulance because of the Crohns. I can spend 2 or 3 hours in the toilet most days. I would say as soon as you see blood in your stools you ask for further investigation from your GP!!!!! Blood and mucus is my biggest problem, and how often I have to run to the toilet. When I say run, I mean run! I have had numerous tests and at least 4 colonoscopies. I have been getting methotrexate injections for about 2 years, but they are not really helping and in a week or so I will be starting Humira. I have heard good thing about this drug and am praying that it helps me. I hope you get your tests, not knowing what the proble is, is torture. Good luck friend.

    Tommy

  • Thank you so much for your support and advice, I hope your new medication will help alleviate your symptoms. Whilst on one hand I don't want to have an illness such as IBD, it would be nice at this point to have a certain diagnosis so I could start treatment of whatever this issue is.

    Amy

  • Push for the colonoscopy!! You really must. I wish I had 18months ago when I started to be really poorly. The only test I had was a gastroscopy which said I had gastritis and that test was a month before I was sent to hospital resulting in an emergency operation. If I'd have had tests earlier maybe my bowel wouldnt have perforated etc etc. So you push for it and I also think from my own experience of the doctors I saw up to the day I managed to see my own doctor is that they're not that clued up on it!! Example I saw a doctor 6 days before I was admitted to hospital. I had a large lump sticking out of my left side! I told him I was in a lot of pain and what should I do!! He said hot water bottle!! Hot bath and good posture!! I took his advice!! I put a hot water bottle on it and I was very poorly all weekend. 4days later, perforated bowel, abcess as big as a rugby ball!! My surgeons words not mine!! Colostomy bag!! Anyway moral of the story is look after yourself!! Don't be fobbed off you need to have that test done. Good luck with it all.

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