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[amyg85]

Hi All

I was finally diagnosed with crohns disease yesterday after having been in and out of hospital for the past 6 years. Ive had 29 admittances in total so its good to finally have a diagnosis but im really scared right now and dont know how to feel as a friends of mine lost her father recently to this horrid disease.

Was wondering if anyone could offer me any support and tell me what to expect etc....

Thanks:sign0085:

 

[tiloah]

Hi amyg85. Welcome to the forum! You'll find lots of support here.

29 admittances is a lot! Hopefully now that you have a diagnosis they can start getting you some treatment that will work. What treatments have they given you in the past? Do you have a treatment plan going forward?

Sorry to hear you have this awful disease but you've come to the right place. Hope you get some good treatment and start feeling better.

 

[RFarmer]

Hey amy.

It's unfortunate about your friend's father, but I wouldn't worry about death if I were you. It's very rare for someone to die from Crohn's, and if you were anywhere near that, whoever diagnosed you would have done something.

Diagnosis means treatment. Which means that eventually you'll start to get your life back. Expect hell though. This disease sucks.

There'll be pain. Likely embarassing things will happen. Weird things you don't understand. Crohn's doesn't just affect your intestines, because your intestines affect every part of your body. This means you can develop malnourishment, and many other weird problems.

But hang in there. You'll get through it eventually.

 

[ameslouise]

Hi Amy and welcome!

I agree with Ben - death from Crohn's is rare, and usually only happens when things are left too long and there's a rupture, or there are complications that are left unchecked. Many of us here have it pretty bad on day to day basis, but there are also many of us who have our disease under control and live nice lives!

If you let us know where you are located, and what meds or treatment plan the doc has for you, we can let you know what to expect. Well, as much as our experience allows as this disease is unpredictable and different for everyone!

You have come to the right place for support. I hope we can help ease your fears a bit.

- Amy

 

[amyg85]

HI All thanks for the replies. My treatment is at first a 2 week course of steroids which i am just starting to take. Apparently this will hopefully instantly relieve some of the pressure and enable the doctors to see what my reaction is like to them

I also got told chances are i will have to have a colostomy bag fitted for a little while to allow time for the inflammation to go down so i guess right now thats what im worried about. Im terrified of it bursting or my partner being repulsed by it and pushing me away.......

Amy

 

[ameslouise]

Amy - Thanks for the add'l info. Steroids are usually used short term to knock down the inflammation and to tide you over until a more long term treatment plan is in place, like Remi, Humira, Imuran, etc.

As for the ostomy bag - an ostomy can be a great relief from symptoms and give your body a chance to rest and heal. It's likely you will feel so good, that you won't even care about the ostomy.

If your partner is repulsed and pushes you away, you are with the wrong person. You are you - good and bad, sick and healthy, bag or no bag. If he/she doesn't understand or accept that, then you should really think twice about being with that person. This is a hard disease to deal with and you need to surround yourself with caring, supportive, understanding people. Have you talked to your partner about what's going on and the possiblity of an ostomy?

Leaks happen occassionally, but bursting is rare! Check out the ostomy thread for more info and to see what life is like for us on a day to day basis!

Good luck - hang in there! - Amy