Newly diagnosed with Crohn's
So after a long battle to get any help I was finally admitted to hospital to find out I have Crohn's was in hospital for a week on intravenous steroids to be discharged with oral steroids and started on infliximab I'm a little worried when steroids course ends my symptoms will come back but hopefully infliximab will kick but still scared as last time one steroids 3 weeks into course my symptoms returned hence why I ended up in hospital any advice would be much appreciated I'm also finding it hard mentally to cope with this all as I have been made redundant from my work and this is just to hard to deal with there is not enough help around me
Hello,
, I'm so glad you reached out here. While getting a diagnosis of Crohn's can bring with it a lot of complicated feelings, having a diagnosis means that you and your doctor know what you're dealing with and can treat the Crohn's and its symptoms. It makes sense that you're worried about the medication and steroid aspect (especially give your previous experience of feeling the symptoms come back while still on the steroids). Please don't hesitate to reach out to your doctor if you feel your symptoms aren't getting more, or if they start to get worse. While I am not a doctor, and can't speak for yours, some of our community members have found their doctors will extend the steroids as needed until the other treatment/medication is started.
Also, I wanted to share this article with you from one of our advocates with a thoughtful message she would go back and give her newly diagnosed self, https://inflammatoryboweldisease.net/living/newly-diagnosed-support. And another advocate wrote an article with. some of her advice for those newly diagnosed, https://inflammatoryboweldisease.net/living/diagnosed-with-crohns-colitis.
The emotional and mental aspect of living with a chronic condition like Crohn's can be lot, so those feelings you are having are ones that many in our community understand and can relate to. In fact, another of our advocates wrote this piece about it "being okay not to be okay" that you might appreciate, https://inflammatoryboweldisease.net/living/its-okay-not-to-be-okay. I hope some of the people here can come and share their experiences and thoughts with you as well. It's okay to be having a hard time coping right now. I hope that you are able to be gentle with yourself.
Please know that you are not alone! This community is here for you, so please don't hesitate to reach out if you have questions, need to vent, or could use some support. Sending you gentle hugs. -- Warmly, Christine (Team Member)
Hi
. I don't have a whole lot to add to the excellent information from Christine. I just want to note that the Crohn's and Colitis Foundation notes regarding infliximab that "It may take up to 8 weeks after starting this medication to see an improvement in your symptoms. However, a lot of people see improvement sooner:" https://www.crohnscolitisfoundation.org/EMR/remicade-infliximab. The actual Remicade site states "At Week 2, nearly 6 out of 10 patients achieved response with REMICADE:" https://www.remicade.com/crohns-disease/learn-about-remicade.html.
I also want to note that a full and happy life is absolutely possible. Here is an article from our patient leader Julie Marie on the full picture of Crohn's and sharing victories: https://inflammatoryboweldisease.net/living/full-picture-life-with-crohns. It also includes an excellent comments section. Please know that people here get it and this community is here for you. Best, Richard (Team Member)
