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Just Diagnosed- Any tips/words of wisdom?

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Ulcerative Colitis
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Posted 2/1/2015 8:08 PM (GMT 0)
Hi there!

My name is Grace. I'm a 20 year old student who was just diagnosed with UC last week after a colonoscopy (after two years of thinking I had hemorrhoids...yikes) I'm glad to finally know what's going on with my bum issues, but honestly now that I research UC more I'm getting a little freaked out.

My doctor prescribed me Rialda 3x/day, and a hydrocortisone enema for 21 days (which I will start tonight). I also take 20 grams of lactulose before bed and multivitamins daily because of low iron. I know this is very vague and everyone responds differently--but it would be nice if I had a heads up as to what I should expect for this new medication. I have an anxiety disorder as well, and taking medications freaks me out (I start to think I'm dying and have an accelerated heartbeat/full on panic).

I just want to live a long and healthy life and this has been pretty discouraging. I also had Juvenile Rheumatoid Arthritis when I was younger... is it possible that these two auto-immune diseases are related?

Not really sure what my point here is, but any words of encouragement/tips would help, especially if there are people out there who were diagnosed at a young age/how they've dealt with it.

Thanks a lot,

Grace

p.s. so far the rialda has made me uncomfortably gassy (woke up in the middle of the night last night and literally had to fart nearly 10 times before I could fall back asleep because of abdominal pain).... is it okay to take gasX or beano or something to help with this?
Posted 2/1/2015 8:14 PM (GMT 0)
ALSO- forgot to mention. According to the colonoscopy, I only have UC on the lower descending colon/sigmoid colon/rectum. Is anyone else here like this/what has your experience been like?

Thanks again,

Grace
Posted 2/1/2015 8:37 PM (GMT 0)
Hi Grace, welcome to the forum, sorry you have to be here.

I'm glad you finally got diagnosed! That must have been an unpleasant 2 years.

Your medication plan sounds alright. I'm glad your DR prescribed rectal meds, because they are going to be the most effective part of your treatment. Once you're done with the hydrocortisone enema, you should ask your GI for a prescription for a mesalamine enema. That will be the medication that keeps your rectum happy forever.

Mesalamine is the active ingredient in the Lialda that you're taking by mouth. That's what will be treating the descending colon. The retention enemas will treat the rectum and sigmoid colon.

I'm sorry you had gas pain in the night time. That could have been from the enema too - a trick I learned here is to squeeze all the air out of the enema bottle before you insert it into your rectum to deliver the dose. That will minimize any gas pain.
Posted 2/1/2015 10:06 PM (GMT 0)
Hey Grace, welcome to the wonderful world of colitis!

I was diagnosed at 15 so have learnt to deal with things through school / college etc.

My best advice would be to take your meds, listen to your body (wether that be cutting out certain foods or managing stress etc), take a strong probiotic accompanied by an omega - 3 supplement, try and excercise keeping fit will give you that boost of energy that makes the difference and most of all do not be shy or anxious about dealing with your symptoms. This thing is part of you now so just own it, control it and beat it.

Have faith, it gets easier in time :)
Posted 2/1/2015 11:43 PM (GMT 0)
Hi and welcome. Sorry you had to find us but this is a great forum.

It can be overwhelming no doubt, but you will learn to understand everyone is different and responds different to pretty much everything.

I have UC from the rectum just into my sigmoid. Asacol + mesalamine enemas kept me in remission for 3 years...flaring now but working on a new plan. What you are doing now sounds right but as suggested above...if the oral med + steroid enemas get you into remission, ask for the mesalamine enemas for maintenance. You will always need maintenance.

Best of luck!
Posted 2/2/2015 2:07 AM (GMT 0)
Hi there, really sorry to hear you're having a hard time!
I was diagnosed with UC at 18 in 2013 and it completely freaked me out too. I'd never heard of UC before my diagnosis and from what the doctors told me I was convinced my normal life was over (I also have an anxiety disorder like you).
However, after overcoming my initial fear of all the new medication, it soon sunk in that this is just my 'new normal'... which once I reached remission wasn't much different to my life before UC. It was actually better considering I knew why I'd been feeling unwell for so long before.
You'll be okay. UC sucks, and there will be tough days, but you can absolutely live a normal life with this disease. You'll soon learn about your UC and what foods/situations (if any) trigger it, and the medication will quickly become part of your daily routine.
Just do your best to relax, I know it's hard. This forum really helped me come to terms with my diagnosis, so just know that you're not alone. Good luck, I hope you feel better very soon :-)
Posted 2/2/2015 6:40 AM (GMT 0)
If I could offer one piece of advice to anyone that was recently diagnosed, it would be to get on to the correct medications as soon as you can. I messed around with diets, supplements and stubbornly resisted meds on principle for at least a year, thinking I could fix it myself. I was wrong!
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