Newly Diagnosed With Ulcerative Colitis - Any Tips?

[BonnyT]

Just left hospital after 8 days where I was newly diagnosed with ulcerative colitis. I am still getting my head round things, but wanted to hear from anyone with UC and how they manage their condition.

Any Tips or support for living with this shit (pun intended) disease would be very welcome. Thanks.

I was diagnosed many years ago, I take pentasa and 6mp which seem to mostly keep it under control.

My trigger is stress so I always flare when something crops up in my life, but everyone is different.

Don’t be afraid to say that a medication isn’t working for you, it takes a while to find what suits. Also ask for blood tests for vitamin d levels because that is usually deficient in people with IBD.

Most of all, be kind to yourself. The fatigue can be dreadful and my work are brilliant at allowing me to alter my hours to counter it.

Thank you! I will definitely look into the vitamin d blood tests. I am on Pentasa too, so hoping it keeps me in remission.

The tiredness has been unbelievable - I'm usually good at plodding on, but this wiped me out completely.

Many thanks for sharing your experience. I hope you keep healthy. Xx

My sympathy, I was diagnosed 15 years ago. Took a while to find a medication that works but I now find Pentasa very effective at dealing with flares.

I find that my triggers are: too much wheat/dairy, tiredness /stress, illness such as a cold, antibiotics, ibuprofen.

Didn't know about vitamin D - will look into that.

Chron's and Colitis Society website is full of useful info www.crohnsandcolitis.org.uk

I also follow the blogger So Bad Ass (you can find her on Facebook) and find her very inspiring.

Sam is amazing, I’ve known her for years and her So Bad Ass blog is great at making the shittier aspects of IBD more public.

Will look up the blog! Thanks x

MegBusset, thanks for sharing your story with me, funnily enough, before I was ill, I was taking ibuprofen for a back ache and I am convinced it was a trigger for me. X

I'm recently diagnosed too. Earlier this year, but I had symptoms for many years. I'm just on Pentasa and B12 now and hopefully heading toward remission. I was on Prednisone calcium/D3 and iron but now off those. My inflammation levels are still raised, but I don't have any symptoms atm.

I thought the tiredness would never end, but I'm almost back to normal now. I also had back pain and was quite stressed, which I now know can be linked to IBD.

Thank you EveryDayIsLikeMonday, my sympathy with your diagnosis. I am currently on a reducing dose of prednisone, plus on going pentasa and calcium tablets.

It's encouraging to hear the tiredness might get better... I put my son to bed at 8pm and am now in bed myself as I am back to work tomorrow for the first time in over a month.

I hope you continue in your remission x

Thanks Bonny. I honestly thought that I would feel that tired forever!
Good luck with work tomorrow. Be prepared to take breaks. I actually napped at work a couple of times, thanks to an understanding boss and an empty office. VIPoo and a good air freshener is useful too, if you still have bowel issues.