COLITIS

[louise88uk]

I had a colonoscopy yesterday and was diagnosed with colitis
I was feeling OK about it until I read the future outcome risks on the NHS website which has made me feel a lot worse.
I'm 25 & I'm dreading having to have a stoma in the future & shocked at the higher risk of bowel cancer. The last few months have been awful so I'm hoping the medication starts to work soon as I start a new job next week and I just want my stomach to be back to normal. I never had any problems at all until having my daughter 2 years ago!

Just looking to hear from other people with the same condition & how you avoid flare ups, how you know when you're having another flare up & good outcomes.
No horror stories please x

I think Dr Google will scare you to pieces.

DD has had colitis since she was about 19 and has gradually learned to know how to manage it herself. She went through a far rougher time then she needed to though because it was misdiagnosed as IBS for over 5 years while she was at uni.

The increased risk of bowel cancer are I believe, if it is left untreated for around 10 years.

Hopefully your medication will kick in soon and you will start feeling a lot more comfortable. DD gets tired far more easily than she used to and it took her a while to respect her body and get the rest she needs. Now she does that, she manages far better.

She works full time as a special needs teacher and works really hard. She hasn't had any flare ups for around a year and hasn't missed a day. For her, flare ups start as passing blood, feeling achey and unwell. She has a colitis nurse she can call for advice at any time and a sympathetic consultant and for the past 2 years has been lots better.

It's good to have a nurse who you can phone because any fears/problems whatsoever, you can run it past them. I know DD had the poor woman on speed dial and would literally phone her about anything and everything until she felt more confident.

You will get to be your own expert after a while and know what you need to do to keep yourself well. Has a colitis nurse been mentioned at all?

Many many people lead really normal lives with this so try hard not to panic. It's a big shock when you get a diagnosis and it's understandable to feel scared and think you'll be onto stomas and all sorts at any time, but that really is a last resort.

Sorry to hear of your diagnosis, i hope the meds kick in and you start to feel better soon. until you have had this condition or lived with someone who has it it is hard to understand how hard things can be. my husband was diagnosed over 10 years ago now and has recent,y had a stoma. But he had a servers case of UC affecting his entire colon. He had flare ups, during this time, but he managed fantastically and we also had lots of periods when he was well.

Not all UC patients will require surgery, a lot of the time medication is affective in keeping any flare ups at bay.

Yes, you are at increased risk of bowel cancer, but our consultant actually said outcome was better for UC patients, than a non UC sufferer because you are checked regularly by colonoscopy, so any changes will be pick up quickly if that makes sense.
Like the previous post says, stay away from Google!! It can be the enemy!
Have you joined nacc . It's the colitis and crohns uk support group.

I have UC. I was diagnosed at about age 28 after two years of 'oh you have IBS'. Initially it was controlled with Asacol. After a year or so, I started having flares. I won't lie, I was hospitalised on steroids twice, given steroids as an outpatient more times and was on the cusp of taking immunosuppressants (I actually tried but they disagreed with me in a spectacular way).

Anyway, couple of years back I discovered I was one of the lucky few who sensitise to mesalasine. I'm completely unmediated and practically symptom free for two years and counting. I maybe visit the bathroom a little more often than the average person. I eat what I like when I'm well.

Triggers are very individual, but I don't eat salad, green veg or lots of roughage when flaring. I also avoid beer & limit that generally because it's a specific trigger for me (done people find all alcohol, but for me it's beer).

My bloods are normal, my last sigmoidoscopy was normal. I was told as long as I'm not symptomatic / uncontrolled my risks really don 't increase by much.