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20 years old, had IBD since I was at least 14, thought I had lymphoma, soon to be diagnosed with IBD.

My first clue was at 14, I had gotten a blood test for fatigue and it revealed I had a low level of B-12 and was given folic acid supplements for 3 months. At that time I hadn't had any symptoms that I wouldn't have brushed off as stress... But I now know Crohn's commonly starts in the ileum and this is where B-12 is absorbed. At the age of 16 I went to my GP because I had noticed my stools were almost always too wet and sometimes I thought I needed to go and only passed mucus and at least once I seen blood and of course stomach cramps. I was told it was probably IBS and that blood and mucus was normal with IBS. I was given buscopan (common IBS med that slows down intestinal movements) It didn't work of course and I went back to my GP, she basically tried to scare away by saying "look if you come back I'll have to refer you to a surgeon for a colonoscopy" and gave me a look in response to my shock (which a 16 year old would naturally have when something like that is presented to them in the way that it was) like she was saying 'good, now you can take the repeat script for the buscopan and leave'. For about 4 years I went on thinking this was life with IBS. I hadn't actually had any further blood that I could see so I never thought my symptoms were anything more than IBS and never went back to my GP about it. About 4 months ago now I went back the GP's (a different one of course) because I had enough of the fatigue and for a year and half I was having drenching night sweats, I had only just concluded it's noting to do with the weather as many different seasons had come and gone and no matter how cool the room was I would wake up needing to change my bed and go for a shower. I had also noticed my lymph nodes in my groin had been enlarged for sometime (but this is most likely a symptom of the regional 'chronic infection'). At this point I thought I had lymphoma or leukaemia, as the symptoms of inflammation can feel like the same. I had overlooked my bowel symptoms as the last GP made me feel like it was nothing to worry about, but thankfully this GP asked the right questions... Initially I thought he was another GP who wasn't taking my concerns seriously, but at first he could only do things to a procedure. I got bloods and they called me 2 days later saying my white cell count was high and that I need to go for a chest X-ray, this was quite scary at this time because so far it was pointing towards cancer. Fortunately the chest X-ray was clear (if it was lymphoma then by that point enlarged lymph nodes would be seen in the chest), so I was to have a repeat blood test and my blood would be screened (they would check for abnormalities in the cells). The repeat blood test was normal in terms of the cells, but my white cell count was still high and at this point I was told it was the monocytes were high (this is usually a sign of chronic inflammation). The GP had read on my notes about the past bowel complaints and decided that my stool should be tested for inflammation (Calprotectin), if it that was normal then I would have to see a haematologist as my blood was abnormal. I then done some googling and had an ah-ha moment... I realised not only that my bowel was messed up and that what I was experiencing was clearly IBD, that I had joint pain, blurred vision and itchy eyes that came and went. I still wasn't going to assume anything, I had a week to wait for the results of the stool test. A week later my doctor called and told me the calprotectin was very high, it was over a 1000, that's when I told him about the extra intestinal symptoms and he said it's most likely a form of IBD. I have been waiting 13 weeks, I have just gotten a letter about a gastro appointment in July. So this is my story so far. Just wanted to put this out there a cautionary tale, if you're young and a doctor tells you that your next step is a colonoscopy, do not freak out and let them let you leave, even if it seems like they want you to be scared about. And just because you had something like bleeding only once and never again don't let that shadow over whatever else is concerning you, you don't have to be at rock bottom to be taken seriously... So part 2 awaits in July. Thank you for reading.


Staff member
I'm very happy to hear you are seeing a GI doctor, I hope you feel better soon. Welcome to the forum, keep us up to date with how you are doing. I'm glad you shared your story with us. Feel free to come here and talk any time, this is a good place to find understanding and friendship.

Lynda Lynda

Senior Member
Hi lee 🙂
I am glad that you are standing up for yourself.
It sounds like you are headed in the right direction.
You have my support. 💕

Lynda 🌻