Another newbie !!

[Sunshine90]

Hi all stumbled across this site and i ve a feeling it will become invaluable to my day to day life living with crohns . Im 20 yrs ols and newly diagnosed ive had symptoms probably all my life when i think about it but persistently since i was 17 i ve suffered , my mum is also a crohns sufferer . I am currently not on medication had an appointment with my consultant y day and gave me a prescripton for entocort ....i feel exhausted at the moment the road to gettin a diagnosis was long and frustrating which it seems to be for nearly everyone ?!
I still feel so inexperienced when it comes to this i have no idea the kinds of questions i should be asking and what action i should take going forward . Any advice would be greatly appreciated

 

[Crohn's 35]

Hey Sunshine !! Welcome. My family has IBD and IBS,I have Crohns and my older sister does too. It can run in families. Entocort is mild and hoepfully that should work, most people are on that and or pentasa. Everyone is different and we are not doctors but we do know of pain and most drugs. Glad you are here, ask any questions, so sorry you are a victim to this disease, hang in there!

 

[dreamintwilight]

Hi Sunshine! Glad you finally reached a diagnosis and can start to sort through what's next.

I would search around the forum some more, which might give you some ideas for what questions you should/could be asking.

Some suggestions might be:

1. What happens if Entocort doesn't work?
2. What long-term medications will I be on?
3. Where is my disease located?
4. Are there any modifications I should make in my diet (I find docs don't have much to add here, but it can't hurt to ask)?
5. How often will I need colonoscopies?

Those are just some of the general questions that come to mind without knowing more of what sort of tests you've already been through.

Hope it helps some and welcome to the forum!

 

[KaLa]

Hi Sunshine, and welcome. Hopefully your mum can help guide you, as she has Crohns also. It would probably be a big help to take her to the doctor when you go.

 

[xJillx]

Hi Sunshine and welcome! Marisa's questions are excellent, especially what long-term medications should you take. Entocort is not to be taken long-term, and you will need something daily that will help keep inflammation at bay. I suggest checking out the Treatment forum to become familiar with the different options, therefore, you will be on the same page as your doctor when he/she discusses your treatment plan. I wish you luck and hope you start feeling better soon!

 

[Sunshine90]

Thank u guys so much for the warm welcome to the forum its nice not to feel alone in this ....those questions are exactly what i needed thanks Marisa.....ill be sure to check the treatment forum thanks for the heads up Jill
Sunshine xx

 

[dreamintwilight]

You're welcome

I'm sure you'll think of more detailed questions as you wander around the different threads. Don't be afraid of coming to your doctor with a list of your questions either. Their time is limited, but you shouldn't leave feeling like none of your questions were answered. And if you're like me, I tend to forget my questions, so it's easier to look at them and cross them off.

 

[Sunshine90]

Yeah thats definitely my plan from now on when i was sitting in his office i was still kind of shell shocked .. i acted like everything was fine when really my walls have just caved in . Looking to the future appt so i can be more pro active.
Thinking of u Sunshine x

 

[ameslouise]

Hi Sunshine and welcome to the forum!

I hope the entocort gets you feeliing better soon. I agree that Marisa's questions are good ones. You'll find lots of good info on this forum, good advice, and people who have been thru just about everything. So if you have questions, just ask and it's likely someone can respond with their experience!

Hope you and your mom are both doing okay!

- Amy

 

[CDDad]

Hey Sunshine - love the name- so bright and shiny!

My Mom has Crohn's too - we've been doing this journey together for over 20 years. She just went on Humira for the first time and it seems to be helping - Yea!

My advice - if you trust your doc - listen to him and take your meds. If you don't like your doctor, find another.

Good luck!

 

[Sunshine90]

Thanks joe things much better at the mo ... taking advice from my mom and also listening to da doc/everyone here when they say everyones diff at the mo mines mainly in my terminal ileum ...mom s is all over
thanks 4 all the advice everyone really appreciate it