Anyone here with Ulcerative Colitis?

[StillMedusa]

DS2 was diagnosed this morning after a colonscopy :( It's extensive (no surprise as he has been pooing blood for months with horrible 10X a day urgency)
I'm pretty cross as the docs have fobbed us off repeatedly for the last 18 months, and prescribed a medication that it contraindicated .
But at least now he will start treatment soon..he has to have anti infammatory enemas twice a day for starters and hopefully a quick referral to the IBD clinic.
He has autism and learning disabilities and is cheerfully oblivious to the idea of a lifelong condition, but poor boy (man.he's 21 but will always be dependent on us) .. it sucks.
I don't know if diet or anything can improve thing while we await treatment to start..does anyone know?

I have Crohn's disease that is similar. Have a look on the Crohn's and Colitis UK website. They have loads of information. I went on a low fibre diet for a while. I was going 50 times a day. I was on steroids and then got put on the right medication.

Havent got UC but Crohns so similar. I was fobbed off for ages so I get the frustration. I avoid foods that are too acidic like tomatoes , pineapples etc and eat 6 small meals a day as opposed to 3 larger ones- not sure how this would work in school for him but I used to bring snacky type food and either eat at break times or in lessons in addition to eating proper meals(small portions) at meal times. May not work for him but hopefully this is helpful.

Also may be worth trying a low FODMAP diet while waiting for treatment but it is not recommended for long term use

I too have Crohns. I’ve been in remission for 10 of the 20 years I’ve had it. I’ve had a successful career,uni, family etc. There is hope that your DS can live his life to his fullest potential. The first few years are tough but once you’ve found the right medication it does get easier. Love and best wishes xx

Hi, I have had colitis. I got it when I was 15 (now 29), and tried pretty much every medication going- ended up on infliximab/remicade intravenously but had to have my large intestine removed and an ileostomy bag when I was 19. I had this reversed when I was 25 and have a j pouch now. Whereabouts are you? My surgeon was amazing, the whole team were. If you have any questions, please feel free to PM me- I’m so sorry your son has been diagnosed with this, but hopefully the medication works and he’s back to feeling normal soon.

I have had UC for about 12 years now, started in my mid 40s - i feel very sorry for your poor lad, it can be a lot to deal with. One thing, during a flare he could well be bone tired (I liken it to that deep deep exhuastion after child birth) you may find that his behaviour will be challenging if he can not articulate how tired he is. moving forward though, it is more than possible that once this flare is sorted he may never have another one, for now I would make sure that you dont give him too much fibre in his diet, keep up the water intake and get him to tell you what he really fancies to eat (during a flare my diet can be quite bizarre, last time i craved chinese takeaway, i think it must have been the salt i was craving) I have a fantastic specialist but from what i hear that is pure luck, just dont be fobbed off, there are so many treatments now that you need to keep trying different ones before you go down the surgery route.

DH has it. He's always steadfastly refused to alter his diet, but his consultant found a tablet which worked for him and he hasn't had a flare up in about three years. Hopefully they can find something that works equally well for your son.

I got it at 19 and it was treated with tablets, it only flared up 3 times in 20 years. It’s so individual as to your reaction and symptoms.

Now I’m older I have to be more careful with very fatty foods and acidic things but again if I have flare ups tablets treat it. Seems to be getting worse now I’m forty

Diet can make a hell of a lot of difference (I have UC). The IBD clinic gave me a booklet about what to eat/not to eat that made a real improvement in my case. See if you can get one before his appointment. UC is a pig but, once you get medication/diet sorted, it is bearable.

I have crohns as well. Had it for the last 10 years now.

Have got it under control with diet and know what to eat not to eat but sometimes stress or a slight change in food ingredients can make me flare up. You can get an app on your phone or buy a food diet book from amazon/eBay and you can record what you eat/stress levels/bowel motions and other things which I find very helpful when I visit my gastro doctor.

There is some brilliant Facebook groups to join and it's nice to have other people with the same problem to know your not alone.

I had ulcerative colitis. Got it when I was 18. I was on azathioprine, ciclosplorin and then steroids. Went on for years and they struggled to get me stable.
I had my large intestine removed and a stoma bag for a year or so. Once I’d fully healed from the surgery after around 18 months, they basically reversed it so I know have an internal pouch. I now live a relatively normal life. Have done for ten years. Go to the toilet more than normal people, but eat most foods even though I was told I might not be able to.

Try not to worry too much. It’s manageable. They just need to find what works for him. Sometimes surgery is the best outcome. I’m glad I had it as difficult as it was.