Newly Diagnosed With IBD .. scared, upset, & shocked
Hi all, First time posting on here! After been rushed to hospital with severe abdo pain and bloating last week, I found myself explaining that this had been going on for a few years but has got progressively worse and that day was the worse ever!! I was given a CT scan and after 12 hours in A&E I was told the results of my scan had found that I had severe inflammation in my bowel and then i heard the words.... Inflammatory bowel disease... in all honesty I was not phased by this because i thought she meant that i had IBS, and to be honest, i switched off to what she was saying as i knew it was more than IBS, but then she said the word, Crohn's! which i had heard of but i had no clue what it really was. I was told i could go home but have to go back to hospital for a colonoscopy (deep joy!!) and biopsies!! When i returned home and after sleep and a cuppa, I looked on trusted sites for the term's IBD .... i was so shocked that it is a life long disease and effects everything from eyes to gums to bones & bums !! which in hindsight i have been suffering with sore red eyes, achy/painful joints, headaches, bloating, changes in bowel habits, and extreme fatigue for a long time !! ... I put off going to the GP as my mum has a terminal diagnosis with colon CA so this has made me put my problems to one side for a while, but it hit me like a train last week when the pain was so extreme i had no choice but to be rushed to hospital!.... i am sorry for the long message, however, i wanted to get my back story across so that anyone reading this will hopefully understand and offer some comfort, i am so scared and i keep crying for no reason .. i have just become so low and feel rotten and no matter what i do to tell myself to stop it and think positive etc etc its not working !!.. i feel like i have been given the diagnosis and left to get on with it and i have never felt so alone in my life ..... i am really hoping for some peer support ... please 😀
w x
Hello and welcome,
! While I am so very sorry to hear about your recent diagnosis, I am so very glad that you've found (and joined) our community here. Getting a new diagnosis can bring with it a whole host of emotions -- which is sounds like you might be feeling -- so the tears and feeling rotten and anything else are you're going through are valid and understandable. Please, please, know that this community is here for you!
What an ordeal it sounds like you've been through! I just want to say that my heart goes out to you, both with the physical symptoms and emotional stress, as well as the diagnosis your mom is currently dealing with. That sounds like it would put a lot of emotional stress on you as well!
It certainly is a lot to take in, and please be gentle with yourself, if you can. It's okay not to feel positive all the time, especially right now as you're adjusting to this new diagnosis. The good news is, is that inflammatory bowel disease is treatable and, while people do live with it life-long, many people can experience remission given the right treatment (whether that's with medication or dietary/lifestyle changes or something else). Of course, I should include that treatment is highly individual so what works for one person won't necessarily work for another, so it can take some time to find the best treatment option.
I hope it's okay with you, but I do want to share several articles from our community with you. This first article was put together with some of the advice our health advocates have for those newly diagnosed, https://inflammatoryboweldisease.net/living/advice-newly-diagnosed. I also want to share this article written by one of our health leaders with her advice, https://inflammatoryboweldisease.net/living/newly-diagnosed-uc-advice. (She specifically talks about ulcerative colitis, but the advice applies to any inflammatory bowel disease.) And finally, as far as newly diagnosed advice goes, this one has five tips for the newly diagnosed, https://inflammatoryboweldisease.net/living/5-essential-tips-for-newly-diagnosed-patients.
I also wanted to link some information on treatments. This article from our editorial team goes into a brief overview of different types of treatments, https://inflammatoryboweldisease.net/treatment. And this article, https://inflammatoryboweldisease.net/treatment/treatment-type-ibd, goes into a little more specific based on types of IBD.
Okay, hopefully I haven't bombarded you with too much information. But please, please, reach out if you have other questions, or need to vent, or could use some support. (You can also search for articles an information in the search bar in the upper left corner of the website.)
Hopefully some of our community members here can also share any tips with you, and/or share their support with you as well. We have some great community members here!
Sending you gentle hugs! -- Warmly, Christine (Team Member)
Hi
. On top of all the excellent information from Christine, I just want to note that, as overwhelming as getting the diagnosis may be, it is also an opportunity to start to make things better. There have been a lot of advancements and, as you will see from the articles Christine shared on the topic, there are quite a number of treatment options. Hope is real.
I also want to acknowledge that it is clear that you have been under a lot of stress, particularly dealing with your mom's condition. As a friend with a different autoimmune condition says, stress doesn't do a body good. Our patient leader Stephanie wrote about IBD and stress here: https://inflammatoryboweldisease.net/living/stress-ibd. While it is of course understandable that you want to help a loved one, it is important to take care of yourself in order to do so (kind of like the instructions on the airplane to put your oxygen mask on first before helping others). Hopefully you can find a treatment to start make things better. Please feel free, if you like, to keep us posted on how things are going and to ask questions - there are plenty of people here who have been where you are and this community is here for you. Best, Richard (Team Member)
