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Desperate newbie looking for help

Hi,

i dont even know where to start, so I'll start off with a bit about myself. I am a 21 year old female, currently a student at university with a provisional diagnosis of Crohns disease, looking for some sanity and advice from this whirlwind journey!

I'll start from the beginning. It all started in February 2012 when i had my first suspected flare; stomach cramps, pains on right side, passing blood with stools, vomiting, fevers, fatigue etc. At the time there was a big outbreak of norovirus where I live so it was just put down to this by the doctors. This went on for a few weeks with medication not helping but it eventually went away. Well not completely as from then on I was still passing blood with my stools and with out to much information I was also passing stool from the wrong end, pleasant I know! but as this was very confusing and embarrassing for me I never told anyone...

Until April this year when things were getting stressful with deadlines at University. all my symptoms came back with a big huge bang. right abdominal pain, diarrhoea that made me run to the toilet every 5 minutes (i was going at least 10-15 times a day), fevers, nausea, just generally feeling so unwell and tired all the time. So I went to the doctors. When telling the doctor my symptoms she told me there was no possible way i could be passing stool from the other end but sent me for some blood tests. These came back that I was anaemic, that i had an infection and inflammation. my doctor, who lets just say couldn't be bothered to investigate me any further told me I had a bit of IBS. So I went to a different doctor for a second opinion and he mentioned to me about having a fistula and referred me. to cut a long story short it took 4 months and a few hospital stays until i was seen by general surgery.

they sent me for a MRI of my pelvis, a colonoscopy and some other tests. my MRI showed some inflammation but otherwise normal and no sign of a fistula, but by this time the passing of stool from the other end had stopped so possibly could of healed itself. but they did find an anal fissure. The Colonoscopy is where it gets interesting, they found ulceration and inflammation in my ileum and thats where i was given the provisional diagnosis of crohns, waiting for biopsies for official diagnosis. so as I wasn't in any need of surgery right now i was seen by the IBD specialist nurse last monday who was very lovely and believed that I do have crohns disease and wanted to start me on treatment but when discussed with the doctor he said he didn't want to treat me blindly and wait for my biopsy results which is fair enough. but i got the phone call yesterday that my biopsies from my colonoscopy have come back clear?

This has thrown everything up in the air and although i should be relieved that they came back clear i burst into tears which none of my family could understand. but it feels like one week i got a diagnosis and was going to get treatment to make me better and the next its all been taken away and I'm back at square one which is so frustrating! they are going to take my case to panel and they have also sent me for more tests as symptomatically and visual evidence i have all the factors of crohns. my symptoms are still very much present with a hospital stay only last week. I just feel helpless as its affecting my life in so many ways. Especially my studies, I've gone from an a grade student to not even doing the work i just have no enthusiasm or energy left in me to keep going and i just want to give up.

if anyone out there has any kind of reassurance or advice for me or has been in the same situation and could give me some answers of what to expect next would be very much appreciated as I am now just so lost and confused and at the end of my tether.

apologies for my very long winded post but honestly this is a shortened down version, and Thank you for your time.
 

DJW

Forum Monitor
Hi Jollie. Welcome to the forum. I'm sorry you're having such a difficult time. The early stages are the worst. It effects us physically, mentally and emotionally. Keep pushing for answers so treatment can start. Lean on trends and family. Sending you my support and a big huge. Hope you start feeling better soon.
 

David

Co-Founder
Staff member
Hi Jollie and welcome to the community. Wow, you've been through so much. I'm really surprised your biopsy results came back clear. What I'm worried about is that they weren't able to take samples from your ileum which sounds like where a lot of the inflammation is. I'd ask your doctor about utilizing a pill cam. The big thing is DO NOT let them put this down as IBS and send you on your way. IBS DOES NOT CAUSE INFLAMMATION like they have seen on tests. I know this is frustrating, but keep fighting for a diagnosis.

We're here for you.

*hugs*
 
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