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Undiagnosed and frustrated

This began in November. I was so constipated that I had to manually evacuate. I also vomited a couple of times, then had diarrhoea. I couldn't stand unsupported, was close to fainting, knees to chest with abdominal pain, mainly left sided but also around my navel and when my GP examined me 4 days later I was tender on the right aswell. I lost 14 pounds in 9 days, was more exhausted than I've ever felt in my life, and was also passing blood and mucus. This came hot on the heels of an incredibly stressful time in my life.

My GP did some tests and my calprotectin came back at over 2000 with a CRP of 16.8. I had a colonoscopy which showed slight rectal inflammation and nothing else. The biopsies have come back normal.

I continue to have pain ( left sided and around my navel), tenesmus, have up to 8 bowel movements a day (average of 4 which can be anything from a pile of ' mush' to something hard and the size of a raisin) and haven't had a normal bowel movement since October. Every BM since this started has had a distinctive odour which is chemical/ ammonia type (My elder daughter's nappies used to smell a bit like this when she was teething!). I'm still passing mucus but the bleeding has stopped. I'm tired, my joints ache, I spend much of the night throwing the covers on and off as I'm hot despite not wearing anything and not having heating on. I still have no appetite and haven't regained any of the weight that I lost. I'm eating because I have to, not because I want to.

I see the consultant again soon and have been prescribed suppositories (prednisolone and mesalazine) despite being told that I don't have IBD!

Nothing seems to add up, and I'm feeling very frustrated as I just want to know what is wrong with me.
 
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fuzzy butterfly

Well-known member
Aw I'm so sorry you are having to deal with this.. I feel that IBD is what you have. Keep on telling them how this is affecting you and all of your symptoms. If you don't get the help you need, get a second opinion.
I hope you can get this sorted out soon. Best wishes n hugs 💕
 
Thankyou for replying.
My GP says it is beyond a coincidence that I had the raised calprotectin and CRP and all the symptoms of IBD. The consutant admitted that he thought he was going to find raging colitis when he did the colonoscopy. I'm counting down the days to see what he says when I see him again at the end of the month. I'm not holding my breath for anything of use though as he didnt listen to everything I was telling him the first time I saw him. He jumped on the left sided pain when I mentioned it and ignored the fact that I also had pain above my navel.
Yet again, where my health is concerned, I don't fit into the neat box that the health care preofessionals expect me to !
 

my little penguin

Moderator
Staff member
Did they do any imaging of the small bowel -CTE or MRE?
Some only have disease of the small bowel which can't be seen by a scope
 
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