Ulcerative Colitis

[RAS53]

I am a long term sufferer of Ulcerative Colitis usually experiencing flare ups at times when I have become very stressed. These can often last for months before they subside and true to form over the last 5 weeks I have experienced another flare up in part I suspect due to the pandemic. I am taking Octasa 800mg 3 tablets twice/day, Salofalk suppositories 3 times/day and Prednisolone 20mg/100ml at night time. This combination normally works but this time it is not doing so as I am still experiencing pain, frequency and bloody stools. I have lost over 1 stone in weight and normally within 30 minutes of most meals I have to make a dash to the toilet. I have not been able to go out much apart from shopping and as a result I am feeling physically and mentally low. I am due to go to my local hospital to the flare up clinic this coming Thursday where I hope they can provide me with a bit of hope!

I am being very selective diet wise eating only small portions of cooked salmon, cooked carrots , mashed potatoes apple sauce, white bread, boiled eggs, apple sauce, bananas and plenty of hot water.

Does anyone have any useful tips re medication and diet?

I

[bantam12]

Have you always been on Octasa ? I was on Asacol (same med) for 20 years and no flare ups, was changed to Octasa because it's cheaper and it didn't work so was changed back to Asacol and all ok, just a thought that it could be the Octasa not controlling things. Good luck.

[RAS53 in reply to bantam12]

Thanks for your advice bantam12 I will ask about that when I visit the hospital on Thursday.

Keep well and safe

[Jimbo82]

Hi I’m also a u/c sufferer, and had a flare up just before the pandemic started mainly a lot of bloody stools and urgency after eating. I decided to try a strong probiotic (vsl#3) once in the morning and at night and also a strong fish oil supplement once a day and upped my suppository intake. Not out the woods yet but this seems to have calm things down for me.

[RAS53 in reply to Jimbo82]

Good Morning Jimbo82,

Thank you for your advice.

I am due to see a gastroenterologist on Thursday so I will ask them about your suggestions.

Keep well and safe.

Robert.

[saj12]

Hope things improve for you.

I started the AIP diet (pretty brutal) but I think might have helped - I have since started to add more foods to my diet. Also started taking Krill oil.

Still symptomatic, but less.

[RAS53 in reply to saj12]

Hi saj12,

Thank you for your advice-I appreciate it.

Kind regards,

Robert.

[Ciccia]

Hi,

This sounds very like me, same meds 5 years ago now. I was on and off oral steroids for years. It effected my bones so much that I had to be treated for osteoporosis. I take it you are taking prednisone as an enema which is less problematic but still not ideal. Can I suggest you speak to your IBD team about azathioprine? I was put on this because of constant flare ups. Although I still take octasa too, I haven't looked back, my quality of life was completely transformed. You will need regular blood tests to monitor but honestly I dont mind at all, at least I'm not living in the loo anymore. I had a colonoscopy before christmas last year and all was quiet- a first. Might be worth your considering. Best of luck.

[RAS53 in reply to Ciccia]

Hi Ciccia,

Thank you for your email.

I have been advised that I might need a stronger drug to stop these flare ups and azathioprine was mentioned but I am concerned regarding Covid 19 and whether I would have to shield as I live in London which is a Tier 2 area?

With best wishes,

Robert.

[Ciccia in reply to RAS53]

Hi again. Yes, that is the worry- and I am in the shielding group. However, at the start of lockdown I asked about coming of azathioprine for the same reason. The team felt that I was at more risk if I flared and then needed steroids- ie no immune system and possible admission into hospital. On balance the aza does suppress the flares which means no steroids. If you are managing with your symptoms by using octasa and prednisone enemas that would be favourite obviously but long term it sounds like you need to look at aza or one of the other immunosuppressants. In either event I wish you the very best, take care.

[RAS53 in reply to Ciccia]

Thank you Ciccia,

You are most kind and I appreciate your support.

I have an appointment with the GI team at my local hospital on Thursday so I will see what they suggest.

With best wishes,

Robert.

[Honey456]

Hi I was on Octasa 3 x a a day and didn't do anything, Ive recently being diganosed with colitis I'm now on pentasa 2 x a day and am doing fine so far

Good luck hope you get yourself sorted

[RAS53 in reply to Honey456]

Hi Honey456,

Thank you for your email.

With best wishes,

Robert.