Going through diagnosis

[Crafty.Pie]

Hi I'm a newbie poster here. But long time lurker.

Having a rocky journey on the way to being diagnosed. As I'm beginning to understand is the norm! I've always had a complicated health history. Without going into too much detail I'm going through the medical dictionary.

Diagnosed with IBS at 16. (Now 29).

Last 6 months habits have been changing. Been getting left handed flank pain rendering me in hospital. Was suspected kidney stones. CT showed wasn't the case.

Referred to Gastro. Usual tests done. CRP and bloods came back normal.

Calprotectin surprised us all at 142.

So now being told due to my family history (Dad has Crohn's) I have Crohn's.

Endoscopy Monday. Excited as theroy is all my other medical conditions may be misdiagnosed and I've had low lying untreated Crohn's since age of 16!

I am confused on calprotectin levels as mine seems quite low compared to some of those I have read on here. And bloods are normal.

Also don't have loose motions anymore. In fact the opposite nowdays. But that has changed in the last 6 months. Tmi!

Any thoughts or stories will be really appreciated and helpful. And good health wishes to us all

 

[scottsma]

Hello and welcome to the forum.I'm glad you haven't ignored your symptoms and are on the road to diagnosis.Calprotectin levels vary.My last test was 300 and I was "upgraded"
from Proctitis diagnosed in 2006,to Crohns Colitis.A months course of steroids brought my inflammation down.I think the normal level (in the UK) is about 60,so it looks like you have inflammation somewhere in your digestive tract.A lot of people on the forum have levels over 1,000+.Please keep us updated as you can be helpful to others who are new to this dratted disease.Good Luck.

 

[Crafty.Pie]

Hello and welcome to the forum.I'm glad you haven't ignored your symptoms and are on the road to diagnosis.Calprotectin levels vary.My last test was 300 and I was "upgraded"
from Proctitis diagnosed in 2006,to Crohns Colitis.A months course of steroids brought my inflammation down.I think the normal level (in the UK) is about 60,so it looks like you have inflammation somewhere in your digestive tract.A lot of people on the forum have levels over 1,000+.Please keep us updated as you can be helpful to others who are new to this dratted disease.Good Luck.

Hi thanks so much for the reply. Yes others seem to have levels of over 1000! Do feel for them. Will definately try to keep updated. Love to year of others with lower calprotectin levels and what there diagnosis was. Kind wishes

 

[Plittler]

Hi crafty pie, welcome, I'm a newbie waiting for diagnosis too.
I've had 'IBS' symptoms since around 16 too and now 34. I finally got a gastro referral in November and had a few tests since. The first was an MRI which showed a lesion in my bowel and then 2 colonoscopies showing stricture/ulceration but biopsies from those were inconclusive. I also had blood/faecal tests but don't know the results of those. As my case was not classed as typical Crohn's and they had not been able to rule out a cancerous lesion I had surgery to resect part of bowel 2 weeks ago. I am recovering well but still waiting for an actual diagnosis. I hope your journey to a diagnosis is not too long!

 

[ronroush7]

Hi crafty pie, welcome, I'm a newbie waiting for diagnosis too.
I've had 'IBS' symptoms since around 16 too and now 34. I finally got a gastro referral in November and had a few tests since. The first was an MRI which showed a lesion in my bowel and then 2 colonoscopies showing stricture/ulceration but biopsies from those were inconclusive. I also had blood/faecal tests but don't know the results of those. As my case was not classed as typical Crohn's and they had not been able to rule out a cancerous lesion I had surgery to resect part of bowel 2 weeks ago. I am recovering well but still waiting for an actual diagnosis. I hope your journey to a diagnosis is not too long!

I wish both of you the best and hope it is not too long until a diagnosis.

 

[Crafty.Pie]

Hi crafty pie, welcome, I'm a newbie waiting for diagnosis too.
I've had 'IBS' symptoms since around 16 too and now 34. I finally got a gastro referral in November and had a few tests since. The first was an MRI which showed a lesion in my bowel and then 2 colonoscopies showing stricture/ulceration but biopsies from those were inconclusive. I also had blood/faecal tests but don't know the results of those. As my case was not classed as typical Crohn's and they had not been able to rule out a cancerous lesion I had surgery to resect part of bowel 2 weeks ago. I am recovering well but still waiting for an actual diagnosis. I hope your journey to a diagnosis is not too long!

Thanks so much for sharing your story. Sorry to hear your going through this too. Hope that your recovery is going well. I cannot wait now. Colonoscopy Monday. Really hoping for some answers but it doesn't look like they come that quickly. Looks like getting the diagnosis is the hard part! Wishing you all the best with yours x