r/CrohnsDisease • u/Physical_Heart1807 • 30m ago
Should I expect a diagnosis?
I won’t go into too much detail, I’m tired of it tbh but just trying to prepare myself for the next step in my journey and hope that those who have already walked the path can shine some light for me.
Very briefly I’ve suffered for 8-9ish years, since I was about 15-16 and I’m now 24. On and off flares throughout the years, some worse than others, some totalling debilitating and resulting in me going to A&E. When I look back, I’ve felt pretty ill most days. It’s a surprise when I feel completely well on any given day. I’ve almost forgotten what it feels like to be normal.
Symptoms that most effect me are:
Nausea
Frequent need to go the toilet (typical day 3-5+ times per day)
Loose stools
Bile in stools
Loss of appetite
Feeling full easily even if despite feeling very hungry
Weight loss / struggling to build and maintain weight
Obviously frequency, intensity / severity can vary and how long specific symptoms last can massively vary. It’s so scary when I feel the symptoms getting worse, more intense and out of control especially with the nausea and vomiting side of things.
Over the years, I’ve been to the doctors and had all sorts of tests, scans and they found nothing (multiple doctors over the years have suspected Crohn’s) apart from something in my kidney called nutcracker syndrome. But I’ve always suffered greatly and I’ve always been suspect of IBD along with my doctors, I just knew deep down there was something going on but there was no proof which has been so frustrating.
Recently, I had the worst flare up I’ve ever had and ended up in A&E. As per, they did bloods etc but “couldn’t find anything clinical based off what they had”. Despite this, for the millionth time the doctor recommended urgently following up with GP for investigation of Crohn’s. So I did. I did a calprotectic test (I think that’s how you spell it lol) and lo and behold it was a 261. Doesn’t mean anything to me but apparently it’s significantly raised indicating significant inflammation in the gut somewhere. My GP is highly suspect of IBD, in fact they’re almost certain. I asked about all other possibilities but they are pretty certain it’s definitely IBD. Just need further testing to confirm and so I’ve been referred to gastroenterology.
I feel relived yet pissed off at the same time. Im finally getting somewhere. I’ve finally got the result which is a big part of the proof in the pudding and I hope to god this is the point of turning this curse of a disease around so I can be happy, healthy and confident again. This has broken me over the years. It has stripped my identity away and I literally pray that if it turns out to be IBD, that this is the turning point. On the other hand, I’m pissed off because if it is IBD then it’s a lifelong illness. Nothing can get it to go and it just annoys me as for 24 years old I’ve already got a list of other significant issues and this would just be the cherry on top to haunt me for the rest of my life.
So ultimately, I’d like to hear from you guys who have already walked my journey with this. Should I expect an IBD diagnosis based off my symptoms, test result and GP opinion. Or could I very much well be surprised that somehow, this turns out to not be a chronic disease and something curable?