Hi guys, here is my story

basically i started noticing classic crohns disease symptoms after taking a medication for my acne (roaccutane) after only 4 days. I stopped taking the medication but the problems persisted. I then had all of the blood tests and they came back clear. I then had a colonoscopy which found crohns in my ileum. However the biopsies came back normal.

I then had a barium follow through which didn't even show the scarring which i saw with my own two eyes when i had the colonosopy.

I was then given the firm diagnosis of IBS. I am now seeking a capsule endoscopy which I am going to have to pay for myself as I have heard that this is the best way to diagnose Crohns if it is in my small intestine.

Having suspected Crohns is bad enough but to be told you have IBS when all of the meds for this haven't worked is just getting me down if I'm honest. Earlier in February I had to suspend my course at university halfway through my final year and now it doesn't look like I'm even going to be diagnosed by January (when I am supposed to return) let alone feel well enough to study.

Anyway has anyone else sought out a capsule endoscopy privately that can give me any advice etc?

Thanks for reading and hope to get to know you guys better soon!

Hi jammy, have you had a 2nd opinion at another hospital, i know what your goin through your story is identical to mine , ive still not been diagnosed 100% like my colonoscopy found it in the caecum, sigmoid and rectum, but also like you my biopsies came back normal, ive got a 2nd opinion and goin through tests now, what i will say is my sister has been having what everybody has put down to IBS for years, one colonoscopy was void, but in the last 2 weeks she was admitted to hospital in pain and couldnt take anymore, they give her nothing but pain killers, and did a colonoscopy and found ulcerative colitis, and in a bad way, so dont give up keep goin i know its a long road, mines a year now and ive been very depressed and anxious with it all, which doesnt help the situation. tc and let me know how you get on, dont forget everybody is allowed a 2nd opinion just ask for it. XXXSUEXXX

Capsule endoscopy, fantastic things!, no tubes, nothing invasive and painless, its kind of weird taking a tablet thats the size of a horse pill, and it flashes too - the only thing you have to do is cut out iron tablets week before at least so that the "pill" won't get sucked into a black oblivion and cant see anything.

No hospital stay, just swallow and go home

You pass it painlessly.

Hope it go's well for you and you get the opinion you need

Jo

Hi
I  have had a similar experience, last 14 months have been very frustrating. I started suffering with severe pain in my addomen last july and was given a Endosocopy in the August.  They found found 3-4 small superficial ulcers in my T ileum and recommended small bowel imaging. I then had several other small bowel studies, barium follow through, MRI, altra sound i also had a Endoscopy all of which were inconclusive.  However after the intial Endoscopy i was told by the consultant that he recommended a 'capsule endoscopy' but the hospital was not very forthcoming with this perticular precedure. After some consideral pressure from me my doctor wrote a letter the the consultant dealing with my case requesting the capsule endoscopy precedure.  A few months later i was given the procedure and three days ago i had the results, they found multiply ulcers in the small bowel and i have been diagnosed with Crohns and at last i have been given medication to deal with it instead of relying on pain killers.

I do have sympathy with you, i strongly believed that the capsule endoscopy was what i needed to get a full diagnosis. I did consider going private for the procedure but my persistance with the hospital and doctor eventually paid off.  I was told when being fitted with the equipment (small computer attached to a belt which the swallowed capsule transmits picturers to) that the hospital only carries out a few of the procedurers a month because of the expense.

I hope get answers soon

DazN