How long did your IBD diagnosis take? Worried about untreated inflammation.

[Sammy2021]

Hello, thanks for reading. In 2007, I began experiencing IBS symptoms at the age of 18, shortly after the birth of my child. I visited GPs many times, but I wasn't really given any tests (other than for coeliac) and they prescribed medication.

Fast forward to 2016/17 and I began experiencing diarrhoea after eating which was more watery and more frequent than it had been. I also noticed a little bit of blood occasionally. GPs told me it was IBS and internal hemorrhoids (without examining me) and again gave me medication. I kept pushing and they finally referred me to gastroenterology. The first test they did was a calprotectin test which came back as 200. This was repeated a couple of months later and it was over 2000. Long story short, after a clear PillCam and failed colonoscopy, my level dropped and I was discharged.

In 2019, my levels came back as around 100 twice and I went back to gastro, who told me it was nothing to worry about.

In January this year (2021) at the age of 31, I felt fine but saw blood in the toilet after passing stool. Did another calprotectin which was 2030. Attempted colonoscopy again, but this failed again due to pain (even with sedation). They took biopsies from the area they got to (up to the first big of the sigmoid) and it all came back as clear.

I did another calprotectin test in April, and that came back as 2300.

I have spoken to another gastroenterologist who is an IBD specialist. She was very thorough and told me that it sounds like IBD, but that due to the lower bowel looking clear and biopsies being normal, it's pretty much ruled out UC and microscopic colitis. So she's thinking crohn's.

I'm now terrified that it has been IBD since 2007, and that as it's been untreated, it's progressed to cancer. I have read that after 10 years of symptoms, 3% of people with IBD will develop cancer - and that is presumably with treatment too. So because of this, after symptoms have existed for 6-8 years, you should get a colonoscopy ever 1-2 years. I have potentially had this for 14 years I also noticed some blood mixed in with my stool a couple of times recently which looked like small bits and one bit looked like it has almost skin attached, so I'm scared that was a bit of an ulcerated tumour. I have also had tenderness in my upper right (where my liver is) for months which prevents me from lying on my left due to the pain. Also, I have been alcohol-dependent for 10 years (drink about half a bottle of wine every single day, often more at weekends). So I feel like I'm pretty much guaranteed to have bowel cancer.

The gastro has ordered a CT of my small bowel and I think large bowel too so she can see the part that they have struggled to get through during colonoscopy, so I just have to wait for that. But I'm so scared and angry (that I wasn't referred sooner) and guilty/ regretful (for drinking too much).

Not sure why I'm posting. I guess I was hoping to hear from others who have taken a long time to be diagnosed but didn't have cancer. I feel like I'm losing my mind.

TL;DR - Scared I have bowel cancer due to long-time undiagnosed IBD and drinking too much alcohol. (Stopped the alcohol now btw).

[FRreedman]

Well done for reducing the alcohol. I went 4 years undiagnosed, and have now been diagnosed (with Crohn's disease) for over 50 years. As far as the statistics go, the figure you should concentrate on is 97 out of every 100 sufferers do NOT get a diagnosis of cancer. I wish you well and stay safe.

[Sammy2021 in reply to FRreedman]

Thank you for replying to me. Hope you're doing OK with your crohn's. Trying to stay focused on that 97% figure. I have health anxiety anyway, so my mind takes me to the worst places! Thanks again.

[bantam12]

Took over 30 years to get a diagnosis ! all started when I was 12 and not formally diagnosed until I was in my 40s !

[Sammy2021 in reply to bantam12]

Thanks for replying. Wow, that is a long time, sorry to hear that. Hope you have yours under control now that you're diagnosed.

[Skye22]

Shameful that people are presenting with symptoms of Bowel disease and going undiagnosed.I was diagnosed with colitis and serious Bowel dysfunction in 2015 after haemmorage from Bowel. Took more than 30yrs of endless symptoms, tests and doctors to get diagnosed.

The mind is a powerful thing and you do get anxious and convinced that your symptoms mean that something serious going on.

Advice would be if you are unhappy with your doctors ask for a second opinion. I changed doctors and hospitals to get my diagnosis.

Stay strong and hope you get a treatment that works for your symptoms!!

[Sammy2021 in reply to Skye22]

Thank you for responding. Sorry to hear it took your so long too. Hopefully things have improved for you since being diagnosed. I completely agree with have unacceptable it is that patients are being diagnosed with IBS with no tests even when they have symptoms that IBD/ other illnesses can cause (in my case, blood). The doctor who finally referred me to gastro after I pushed for it basically laughed at me, shook her head "I don't think you need it, but if you're insistent then I will do this time just to put your mind at rest" (my symptoms at the time were diarrhea, pain, mucus and blood which was new, and she didn't even order a single stool test while a simple calprotectin test would have shown I had inflammation). Trying to stay positive for now, but not knowing for sure is so stressful!

[jakelayla]

Hello there, it takes ages to get a firm diagnosis for this condition. My symptoms started about twenty years ago, with pain, bloating and heavy bleeding from back passage. My GP did not examine me just told me I had piles and Ibs. This was in the days before the internet, and knowledge at our fingertips, we tended to go along with whatever our Dr's told us. Bleeding was either bowel cancer or piles. I was relieved to think it was piles, and went through loads of suppositories and peppermint for bloating. Fast forward to three years ago, when I became extremely ill with IBD. It took six months from first GP app't to having a colonoscopy. My Gastro Dr saw inflammation and said I had Crohns, but biopsies point towards MC. When I told him about all my old symptoms, he said I probably have had mild Crohns, for years which is now changing into MC. It doesn't appear to be uncommon for people to suffer this condition and be misdiagnosed for years. Try not to worry...you are far from alone. Sending lots of best wishes to you.

[Sammy2021 in reply to jakelayla]

Hi, thanks for responding. Sorry to hear it took you so long to be diagnosed. Hope you're doing OK now. It's so frustrating to hear that GPs are diagnosing people with IBS without doing any tests. I didn't know crohn's could change into MC, so that's interesting.

[jakelayla in reply to Sammy2021]

Hi, I didn't know either. But the Dr who did the colonoscopy, saw inflammation which you wouldn't expect to see with MC, he prescribed Salofalk which caused a massive flare up. Two weeks later I ended up in hospital. Whilst there my histology report turned up indicating MC, apparently it is good for Crohns but not MC. This disease has so many twists and turns. Wishing you the best of luck as you navigate this confusing journey, hope you make a speedy recovery!

[jakelayla in reply to jakelayla]

Mean't to write Salofalk is good for Crohns but not MC.

[Shoeysmum]

Having read the replies to your thread I must say that I feel VERY lucky to have been diagnosed with UC just a few short weeks after first experiencing mild symptoms.

When I told my GP I was bleeding from my rectum he examined me and referred me for a colonoscopy via the 2 week route and it was from that colonoscopy that I was diagnosed with UC.

Can they not perform a colonoscopy under general anaesthetic?

[Sammy2021 in reply to Shoeysmum]

Thanks for replying. Sorry to hear you have been diagnosed, but at least it was found so quickly! I may have been diagnosed years ago when they first attempted a colonoscopy (that was still 7 years after my initial symptoms though!) but when it failed, they pretty much just stopped looking as my calprotectin level had dropped. They're doing a CT scan next to look at the small bowel but also the large bowel, so she can see if there's any narrowing on the bit they're struggling to get through. Hopefully that won't be too long now, but who knows!

[Twinkle_Little_Star]

I was diagnosed with irritable bowel syndrome back in 1990. I spent 2 years having 20 bowel movements a day. I was told in 1995 my diagnosis was incorrect. My MRI scan and colonoscopy confirmed it was infant Crohn’s and colitis. I’m aware that there must be so many people with IB that are wrongly diagnosed

My GP then made me aware losing 3 stone and putting myself at risk should I require surgery I wouldn’t make it.

What I’m saying IB is easier for a doctor to treat. Only when ure very sick only then will you be taken seriously