Worried I have ulcerative colitis or something else.

[Macca1utd]

Hi everyone,

I have been suffering with symptoms for around 2 months now. I have recently done two stoop samples. 1st sample 185 calprotectin and 2nd sample 131 calprotectin. I've been very worried and my anxiety is really high at the moment. I was wondering if anybody could tell me what symptoms they have been experiencing with ulcerative colitis if they wouldn't mind? My symptoms are : upper back pain, lower back pain, chest pain, loose stools, change of bowel habits, abdominal cramps, abdominal pain behind the belly button, ulcers on my tongue that come and go.

I had a colonoscopy around 6 months ago which was all clear, I've had an abdominal ct scan around 1 year ago, ultrasound which checked, pancreas, gallbladder, spleen, appendix and also a chest xray which was clear. I've had numerous blood test which have all come back clear and also a fit test last week which has come back clear.

I've got an endoscopy booked in for next week on Thursday, worried is an understatement! I was just wondering if anybody could shed some light on any of my symptoms.

Any advice or comments would be really appreciated.

Thank you.

[Shoeysmum]

Hello Macca

I was diagnosed with UC in 2017. My symptoms were extremely mild and involved passing a small amount of blood - less than a teaspoon full as well as passing an extremely small amount of gas each time I sat on the toilet. I went to my GP who arranged a colonoscopy. From the colonoscopy I was diagnosed with moderate UC and the procedure brought on my first flare.

During a flare you do have loose stools which consist of a lot of mucous as well as blood. It's impossible to control your bowel and I had several accidents. Yes, there was a lot of gas too.

Thankfully I've only had one flare since but it went on and on so I was eventually put on predisolone which stopped the flare in its tracks immediately.

That's my story and I'm sure others' stories will be quite different to mine.

Good luck.

[Frank121 in reply to Shoeysmum]

Hi Macca.

I Just wanted to wish you well for your scope and you get good results. I know how worrying this can be. Before I was diagnosed with UC, my main symptoms were really frequent and urgent! bowel movements along with blood, mucus and generally a lot of gas. I didn't really suffer from any pain IBD does affect us in different ways and can also depend on the severity and which part of the system is inflamed.

You have a lot of tests and scans which have been clear so that's a good thing; hopefully you can just find the cause and get it treated. Best of luck mate and wish you feel better soon!

Frank

[Macca1utd in reply to Frank121]

Hi Frank, thank you for the well wishes, i am very nervous as its tomorrow and I still don't feel any better from the first day it all started. Hopefully I will get some answers tomorrow and it won't be to serious.

Thank you very much for your kind reply.

[Macca1utd in reply to Shoeysmum]

Hi shoeysmum,

I'm not sure what's going on with my insides to be honest, I havnt had any blood in stool but I do have the urge to go every now and then and I have noticed mucus in my stool before. My mane concerns are the belly gurgling and chest and back pain. I'm due for the scope tomorrow so hopefully nothing to serious.

Thank you very much for you're kind reply.

[bantam12 in reply to Macca1utd]

I’ve had UC for 50 odd years, back, chest pain or ulcers were never symptoms, occasionally abdominal cramping in a flare up but otherwise it’s just diarrhoea and urgency. Obviously I’m not medically qualified to diagnose but as you’ve been lucky enough to have numerous tests done ( it’s usually a battle to get even the basics done!) and nothing has shown up then maybe you have IBS which causes similar problems.

Good luck with tomorrow’s test.

[Stef1980]

They should check your small bowel with capsule endoscopy. UC was clearly not your case , because you already had a colonoscopy. You have constantly mild raised Calprotectin and the best way to find out where is the inflammation is via capsule endoscopy. According to your calprotectin the inflammation can be upper . Of course you can have upper endoscopy , but that cannot check the whole small bowel. I'm surprised that your doctors did almost everything, but did not propose capsule endoscopy.