Need help x

[Charlltd]

Hi, I'm 23 and since the age of 16 I have had bouts of approximately 3-4 months at a time of explosive diahriah (20-25 times a day at its peak) and sickness, I turn extremely unwell with it and even become inconvenient with the pain, the only way I can describe the pain I feel is like late stage labour pains, the episodes have come closer together to the point where now it's happening once a year.. Inbeteeen the episodes my stomach isn't what you would call normal but it's manageable, my fecal caprolactam stool test came back as 894 when I was unwell and they said anything over 100 indicated ibd, my colonoscopy was normal and my MRI structure was normal the tech put on the report but gastro doctor has not yet looked at the photos but I'm guessing there be normal too then? Does it make a difference of I'm not having a flare up because the colonoscopy and MRI has been done when I'm well, My question is really shall I just accept that it's not ibd bassed on this? My nans friend had the same problem for years and years back and forth and ended up giving up and then she had somthing rupture inside her had to have surgery and then diagnosed with Crohn's, I'm unsure what to think anymore, what's your opinions? X

 

[scottsma]

Hello and welcome.Your calprotectin level suggests inflammation.As you've had gut problems for such a long time, and explosive D,and pain,I would not let it go undiagnosed. When things clear up after a bad episode it's easy to just be relieved and carry on with life.But IBD has a reputation for creeping up when least expected,and IBS itself is not a pleasant illness to have for such a long time.To make it easier for yourself and your medical team,I would keep a diary of symptoms,that way you won't forget to mention things that could be important.You know if you don't feel right so don't be fobbed off.Best to you.

 

[ronroush7]

Hello and welcome.Your calprotectin level suggests inflammation.As you've had gut problems for such a long time, and explosive D,and pain,I would not let it go undiagnosed. When things clear up after a bad episode it's easy to just be relieved and carry on with life.But IBD has a reputation for creeping up when least expected,and IBS itself is not a pleasant illness to have for such a long time.To make it easier for yourself and your medical team,I would keep a diary of symptoms,that way you won't forget to mention things that could be important.You know if you don't feel right so don't be fobbed off.Best to you.

I agree.

 

[Charlltd]

Do you think it could just be ibs? I know it's nothing like other people with ibs, I think I know myself it's not but with. The tests being negative it makes me doubt myself, but how could ibs be this bad, I'm happy for good results but frustrated because I just want to know what's wrong with me, it's affecting me so bad my anxiety is through the roof X

 

[ronroush7]

A couple of years ago, I was having symptoms but the tests came back negative. They said IBS. I kept having symptoms. They asked if I wanted to be retested. I said yes. They found out my Crohn's disease was active.

 

[Charlltd]

Do my symptoms sound similar to yours? X

 

[ronroush7]

I would keep pushing for answers. I would have frequent trips to the bathroom. I think I was having incontinence

 

[Charlltd]

Thankyou for your reply

 

[scottsma]

As far as I know you won't have an elevated calprotectin level with IBS.Although yours isn't overly high it's still higher than the 50-60 normal UK range.Mine was 400 at last test,others have results over 1000.

 

[eleanor_rigby]

IBS would not cause that fecal calproctectin result

 

[Charlltd]

Does anyone know if it's made a difference having the tests while I'm well? Would I of had a different result if I had them done while I was in a flare up? I go like seriously ill with it I know it's not normal I go unbearably unwell the only reason i refuse to let the go admit me to hospital when they tried was my daughters severally disabled and my son has chronic lung disease so they both need me home otherwise I would be in hospital on a heart beat because I get so bad, I'm happy when I've had clear results but then sad because i know it will come back again and without a diagnosis I can't be helped x

 

[eleanor_rigby]

It shouldn’t make much of a difference having the tests when you feel well. It might be that the problem could be more in your small bowel unable to be visualised by the colonoscopy. I have ulcers in my small bowel and the MRI didn’t pick them up. You could try a pill cam.

 

[Charlltd]

I think that is my doctors next port of call, I don't want there to be anything wrong and I get a relief when I have has these two tests back clear, but at the same time I just frustrated because I know I need help bad, a doctor prescribed me asocal I think it's called years ago and it got better but then another doctor took it off me saying I had no diagnosis x

 

[Jabee]

Have you been tested for any immune deficiencies? Hypogammaglobulinemia can result in recurrent GI and upper respiratory infections. IBD, especially crohn’s, can be hard to diagnose, particularly if it’s located in your small bowel. Some doctors think it’s necessary to have a biopsy that is positive for granulomas in order to be diagnosed with crohn’s but a minority of patients with crohn’s have granulomas. I hope your doctors agree to further testing and that you get some answers soon.