Got diagnosed with mild terminal Crohn’s

amother

Brickred ↓

Tue, Jul 12 2022, 1:50 am

OP, it's a very scary diagnosis, but know that from here on it only gets easier! You know who the enemy is and can finally fight back..

When my married brother was diagnosed with Crohn's, he was also told it's terminal. It was a very escalated and severe case. He suffered a lot. It goes back over 10 years so I don't remember the details of the diet but I will ask him in the morning and let you know.

But what I do remember is the fear after the initial diagnosis. My mother cried nonstop. The doctor said that it's something he'll deal with for the rest of his life.
let me tell you, as soon as he had the diagnosis, he looked for the right diet (I think also vitamins) and he felt MUCH better and it got SO MUCH better over a few months. After maybe 2 years, he had no symptoms ever since. I will find out if he is still on a diet. Definitely not strict enough cuz I see him plenty.
You're still in shock and in unfamiliar territory so it seems more scary than it is.
Wishing you much hatzlacha in finding the right diet and feeling better very soon!

amother

↑ Brickred

Tue, Jul 12 2022, 8:24 am

amother [ Milk ] wrote:

the word terminal in the diagnosis refers to the location of the disease on the terminal ilieum. it doesn't mean what you all are thinking.

I used the word 'terminal' wrong, you're right.
I meant chronic / incurable / something he'll live with for the rest of his life - but it is completely gone BH

amother

↑ OP

Tue, Jul 12 2022, 9:18 am

amother [ Brickred ] wrote:

Trust me, I know a lot about chronic illness. Unfortunately, this diagnosis is a drop in the bucket. But I am happy there are ways to manage it unlike other issues in my health.

Happy your brother is doing better bh.

amother

Freesia

Tue, Jul 12 2022, 8:10 pm

Got diagnosed with moderate to severe crohns in the terminal ileum 9 years ago.
Please don't undermine the difficulty. It was so hard.
For me diet was not the answer. I let go, and let gd. I'm on a medication that's my lifesaver.
Another huge factor I haven't seen anyone mention is taking care of your emotional health, and how helpful that is for auto immune conditions. Therapy helped me tremendously.
If you need any support/ advice, feel free to ask me. I can find a way for you to contact me anonymously if you would like.

Also remember that you did not chose or cause this condition. I see many ashamed to share and a lot of stigma involved. It took me a bit to come to terms with it.