Finally diagnosed

After 6 years and after 3 colonoscopies, ultrasound, CT and MRI scan, blood tests, stool tests, Vitamin B12 injections I have finally been diagnosed with Crohn's disease, i have 50 cm of the small bowel badly inflamed with stricturing and chronicity my specialist put me on Budenofalk for 3 months and after only a few days symptoms have nearly disappeared and now leading a normal life, I will be taking them for another 2 months and gradually reducing the dose, my specialist will then put me on Azathiopine. I feel so much better. Also moved to a plant based diet with high fibre. Has anyone experienced the same

[Viklou]

Really pleased for you. At last an answer to your issues and a treatment that's working xxx

Hope things continue to get better and better

[Hidden in reply to Viklou]

Thank you Viklou, i am very optimistic now

[Skye22 in reply to Viklou]

Really pleased for you that you got a final diagnosis and a treatment that is working for you.

Sad that you had to wait 6yrs for this and reading other posts it seems standard that most of us sufferers have to fight to get tests done, getting a doctor to actually listen and believe your symptoms and then get a comprehensive care plan.

I finally got diagnosed 2015 after many years of endless tests, procedures and various doctors. I have colitis, levator-ani syndrome and Dysfunctional bowel /bladder compromised with adhesions. I have a great care team now and good treatments that help me manage my symptoms.

For all the fellow sufferers out there never give up hope of getting a diagnosis, stay strong and stay well!!!!

[Hidden in reply to Skye22]

Thank you Skye22, key message = never give up

[Pipinha in reply to Skye22]

what are your symptoms? in blood tests didn't you accuse? they were normal?

[wittsend0]

Glad to hear you found something that helps, I'm surprised, they are suggesting Hi fiber.

I have always been told for colitis or ulcerative Colitis, to avoid seeds nuts, high fiber, anything that will irritate the lining.

[Hidden in reply to wittsend0]

Yes I was surprised by the high fibre recomendation but its seems to be working, but I should imagine it would not work for everyone

[Alie4343]

Hello KWEls,

I was also diagnosed with what « seems » like Crohn's after 4 years of IBS with normal stools (once a day) but bouts of very painful gas that kept me sometimes up at night and low ferritin levels.

My 2 colonoscopies ans gastroscopies were normal, but they saw 6 cm of the small bowel (ileum distal) on the entero scan that seemed inflamed.

The gastro thinks its Crohns because I had high calprotectin levels (328) and high CRP (15) when my bloodwork was done.

I am feeling very well at the moment (its been 8 weeks that I feel great apart from the anxiety) but he still wants me to take Pentasa. I have to say that I've also changed my diet (lots of fibre, fruit, vegetables, etc., probiotics, vit. d,ç and iron supplements plus a little Metamucil before going to bed).

Would you know if the protocol is the same in the UK? (Suspected Crohn's and medication right away?) Shouldn't he aks me to do another calprotectin test to see if the inflammation has resumed ? The last result of the CRP test was 3. Anything below 5 being considered « normal »...

Thank you for any information you could provide. I think I'd like a second opinion.

Kind regards.

[Hidden in reply to Alie4343]

I am on a plant based, high fibre diet and feel better for it, good luck

[mPerdue in reply to Alie4343]

We’re your stools a little hard or “normal” i suspect chrons but all i read is Diarrhea diarrhea diarrhea. If you’re still sore normal or hard that might be why they told to do the high fiber

[Pipinha]

what are your symptoms? in blood tests didn't you accuse? they were normal?

[mPerdue]

Did u have constipation with your crhons?