I'm Brand New to Crohn's disease!

[Reese1603]

Hey everyone. I am 21 years old and just got diagnosed with Crohns disease over the past week and a half. I have been dealing with stomach pains all my life and intestinal cramping over the past year or two. Also was dealing with diarrhea and constipation - sometimes both in the same day. (mostly diarrhea, though)

So in early march I had an edoscopy and they found that I was swollen but otherwise fairly normal. That did not please me because my sypmtoms were very real. After several more appointments and some weird looks from my docs (my main doctor thought I was making it up this whole time) they finally referred me to a GI doctor. He thought I had IBS but decided to do a colonoscopy just in case because my inflammatory marker was elevated in my bloodwork.

Had the colonoscopy on June 18th and the doctor found my instestines very inflammed, bleeding in some spots, and ulcerated. He suggested I had crohn's disease, took some biopsies and scheduled me for an abdominal CT scan.

Had the CT scan last tuesday and both the biopsies and the scan came out positive for crohn's disease. I go in on tuesday to find out what treatments I have available, but in the results they sent me in the mail the doc mentioned putting me on Entocort or something like that. Has anyone ever been on this medication? I know its a steroid...which has me worried!

 

[Guest]

hi Reese - i also welcomed you in another thread just now lol

steroids are an extremely common form of medication for Crohns, and often used on newly diagnosed patients to calm things down. they can be really effective, so i would say just put your faith in them and hopefully the meds will bring a lot of relief for you.

with this forthcoming appointment being your first since diagnosis, i'd be tempted to go armed with a list of questions and worries you have - as Pen says, education is the key, & the more info you can get from your consultant, the better. good luck!

 

[Isla]

Welcome and howdy ho. The diagnosis can be scary but as you will see you grow accustomed to living with it.

 

[Reese1603]

thanks! I did a lot of online research and found a bunch of information, including vitamins and supplements to go along with the meds the doc will give me. I am still a bit nervous....but hey, it can't be as bad as the colonoscopy, right? haha

 

[H20 86]

Hey , I'm about ur age too and its good u've been diagnosed. It took me years to find out what the hell was wrong with me. But stay strong and try to fix/taken care of ASAP. Medication is the first step to see how ur doing, i've been on medication for 2 years now and it seems like surgery is going to needed, this month im hoping to have it.

Best advice for now is, take your medication and watch what u eat. Do research to keep urself more educated on this matter. I learn new things everyday on this forum.

 

[elizabeth__]

Will you be taking Entocort orally or as an enema?

With it being a steroid, you'll probably be put on a dose that will decrease over time, so I wouldn't worry to much, as it decreases the inflammatory response occuring in your body.

Keep a food and general "how i'm feeling" diary, it helped me learn how my body responds to different things and try and deal with my symptoms.

 

[butt-eze]

Entocort is the better alternative. I myself was never on it long term but I know the side effects aren't as bad as prednisone.
Discuss your concerns with your doctor and see if they would consider something else if you don't want entocort. I started on Asacol but failed that therapy.

Amy

 

[FruitLoop]

Hi - I am on Entocort at the moment (Budesonide in UK) - there are no noticable side effects apart from not being as tired as usual with three kids but it's not the "mania" that pred gives me.

 

[mikeyarmo]

Hello Reese1603,

Welcome to the forum! I am sorry that you were recently diagnosed, however hopefully this brings an end to the years of stomach issues you have faced.

Looking forward to seeing you arround the forum!

 

[ericajones80]

welcome Reese....i know how the stomach pains are. You came to the right place!

 

[Nancy Lee]

Welcome

Welcome to the forum Reese!!

Sorry to hear about your diagnosis but at
least you're in good company here!

We've all been through those first days and months
and know what you're feeling.

Don't worry about the Entocort. I was on that one after Prednisone.
It is a milder steroid and lets just hope it does the trick.

Please come in any time and if you have questions....ask away!

Once again welcome!

Healing hugs~Nancy

 

[Babe123]

hiyer! sorry to hear you have crohns hun!

im 18..have all the symptoms of crohns but nothing is showing up! my mum and doctor think i am making it up..but as you know it isnt made up at all!

i hope everything gets sorted for you
x

 

[Reese1603]

Thanks, guys! I've been on the meds for over a week now and the only thing I've noticed is I feel tired all the time. Also, if I don't eat enough before taking it I get a horrible stomach ache.

Symptoms have not gone away yet though. Hopefully it'll start helping soon!

thanks for the encouragement!