Ulcerative Colitis

[Sunny200]

I am currently in hospital and have been diagnosed with Ulcerative Colitis and CT scan shows the whole of my bowel is flared up. The doctors have said it is bad and worse case scenario would be surgery. Currently they are giving me intravenous steroids and i have a sigmoid camera booked today. I feel very anxious. Does anyone have any or had similar experiences? Xx

Hi OP, I know it is all very daunting. I have UC and too have spent months in hospital.
Aside from the IV steroids, have they said what they will try you on long term?
If this is your first bad flare up, I would say dont lose hope- there are lots of biological medicines to try before you consider surgery.
I remember feeling so ill at one point I nearly asked them to just do the surgery and I'm so glad I gave a new medicine a try.
I've been in remission for 2 years now after 4 years of going in and out of hospital.

If this is all new I know it's really scary and daunting, happy to answer any questions you may have.
There is a really supportive facebook group, which is private and a great source of knowledge. Everyone is really nice. It is called Crohn's & Colitis UK Forum xx

Not UC but Crohns. I think by the time you are taken into hospital for diagnosis of this type of disease then your bowels are in a mess. Surgery from minor to major might be required soon, later or never. I have had CD for 20 years, no operations.to date. Friend has had crohns for 2 years and now has stoma..take it easy let the drugs do their.business and see how it goes.

Hi OP. Hang in there, in my experience they'll always mention surgery but if you've only just been diagnosed there are a lot of non surgery options to explore - assuming the IV steroids do the job for now.

A few years ago I flared so severely that I got admitted straight from an outpatients appointment and had to be put on IV steroids. On the ward it was just constant talk of surgery ... that is until the drugs kicked in.

Good luck with your treatment. Don't be afraid to question them on anything you're unsure of and anything you feel uncomfortable with.

My husband has UC, and I can tell you from his many years of experience that paying attention to your diet is critical. For most UC sufferers, including my husband, dairy is a massive trigger for flare-ups. There is loads of info online about helpful diet tips for UC for you to learn from. I truly hope you'll be on the upswing soon!

DC 21 was diagnosed back in May, He’d had symptoms for about 6months. He spent 10 days in hospital, intravenous steroids, & started on meds. Sigmoid done, & biopsies taken, he was sent home on oral steroids.

He’s been back in hospital twice since then & he’s now had immunosuppressants added to his medication. He’s currently seeing the IBD nurse in clinic every 8 weeks, blood tests taken every 4. They are still tweaking meds, & at some point he’ll need a colonoscopy, which will mean they can tell if he has Crohns or colitis.
Hope your feeling better soon

I was very ill by the time I plucked up the courage to go to hospital. Lasted less than 2 years before needing surgery. They really did try, I was in lots of strong medication that wasn’t feasible long term. My final hospital admission I was rushed into emergency surgery on arrival at a&e, woke with a stoma. Had a reversal a year later and have been symptom free for nearly 10 years. It scares me that one day I’ll end up with a permanent stoma though.
Surgery has been good for me, but I’d avoid it if possible. Although I wouldn’t live in pain to avoid it.

Thanks for your advice, i am currently on azaprione and alpurinol. My last day of steroids today too. Inflamation has gone dowm loads since January. But since i have a suspected fistula from rectum vagina and bladder. Awaiting on mri scan, but everything on hold due to Covid19. It is so annoying!!

My brother was diagnosed in his late 20's. He went grey and his hair thinned dramatically, apparently from the steroids. I don't know the exact medications he had, but when steroids didnt work, he ended up on a specialist IV therapy which was very expensive. He lives in Australia, so I'm not sure if its covered on NHS. There are many support groups available (there and in the UK), but he was too embarrassed to admit he had issues. His now wife found it helpful to have support, and just find out about other treatments and devices available.

I've heard about poo transplants, but think they might be more suitable for other bowel disorders. Worth looking into, even though it sounds ghastly- nothing is swallowed BTW!

Unfortunately, after years of failed treatments, needing blood transfusions due to blood loss and multiple hospital admissions, he had a total colectomy. His case was very bad though, and not everyone will end up with a colectomy.