First full flare up not reacting to steroids - Help!

Hi there! My name's Leanne. I was diagnosed with Ulcerative Colitis last November at the age of 18, and after my first ever flare (which I was hospitalised for just over a week for), managed to stay in pretty steady remission for nearly 6 months. I currently take 8x 500mg Pentasa tablets a day along with a 1G Salofalk enema at night.
The reason for this post is because I am experiencing my first 'proper' flare up since my diagnosis. I've definitely had my fair share of small flares throughout the year but overall have been very lucky until now.

I started off feeling very gassy about three weeks ago which I didn't think much of as that's quite common for me, but it soon progressed to a bit of blood in my stool, which I probably stupidly didn't take much notice of either because blood has come and gone by itself all year. As you can probably guess, this then turned into bloody diarrhoea - at which point I contacted my GI. My UC seems to be a bit strange in the fact that once I start a flare up I only have diarrhoea for a couple of days before all I pass is blood and mucus (when it is stool it's surprisingly formed, sorry for tmi!). At the point of contacting my GI I was feeling constant urgency and passing a LOT of blood about 15+ times a day with a fair amount of pain. Doc decided that the best plan of action would be to start a course of Prednisolone (30mg) and taper down every ten days, and was pretty confident that it would do the trick as steroids is what cleared my first flare up. However, 4 days into the course I was surprisingly experiencing no side effects from the steroids, and my flare only seemed to be getting worse. I questioned my IBD Nurse on when I should start noticing change, and she said it could take up to a week before seeing improvement, and to stay on the higher dose of steroids for another ten days before tapering. I'm now 13 days into the course and feel no better. I'm still experiencing urgency, still passing a lot of blood 10+ times a day, and generally feeling exhausted.

I have a colonoscopy scheduled for the 3rd of December too which I am absolutely dreading. I've had a sigmoidoscopy before with no sedation and found it quite tolerable, but am very wary of the sedation that comes with a full colonoscopy - always hearing horror stories about people still feeling a lot of pain! I'm also a very anxious person so the thought of feeling 'drunk' or out of it really frightens me.

I'm not really sure why I'm posting, I think I just feel very overwhelmed at the moment as I'm so used to my flares being quite fleeting. It's really concerning me that I'm noticing nothing in regards to the prednisolone. I mentioned to my GI that I was on 40mg last year rather than this dose of 30mg, but he said that 30 is the maximum dose for my weight right now. Sorry for such a rambly post, I think I just needed a place to get all of this out. Please tell me there's a light at the end of the tunnel!

Thank you so much for any advice, I feel a bit alone with all of this right now.

Leanne

You should probably also ask for a stool culture to rule out c.diff.

30 mg isn't enough. If 40 worked for you before, then you need at least that much.

Your Doctor sounds like a bit of a hard a**. I've negotiated with my G.I. doctor about how much prednisone I should take and have gone as high as 60 mg (oral) while weighing about 130 pounds.

If it were me, I would increase my own dosage and try 40 mg or more for a few days and see what happens. But I've had several flares and a lot of experience with prednisone. You may not feel comfortable with that and I would understand why.

And I'm not saying that you should go against your doctor's advice, I'm just telling you what I would do.

Any possibility of consulting another doctor?

Leanne, in this forum there is no such thing as TMI ;)

about the pred. I agree with everyone. 30 mg might not be enough. Ask your GI to up it a bit. Flare ups have the tendency to become more stubborn over the course of time. What worked before might not work again. I am not aware that pred is dosed by weight but by the extend of the inflammation (somebody correct me if I'm wrong). I would also add a hydrocortisone enema just to be sure. it might also be time to go up the meds ladder and try immunosuppressants.

about the scope. Do not believe in such horror stories. Most of us have good experience and sleep through the procedure. You only hear the horror stories because people with good experience usually don't bother writing it up on the internet. I'd suggest to stop searching for those stories. You'll most likely be given propofol or something similar and it will put you out.

I hope you get better soon.

Have not heard of max dose of pred for a certain weight. I weighed 110 lbs. and was on 120 mg IV in hospital then 60 mg oral at home. I don't think 30 mg is high enough.

Hi, Leanne,

Sorry for all you are going through. Confirm with your doctor that he will be able to do the colonoscopy if you are in a flare up. I went through the whole prepping for the procedure and he could not go very far due to too much inflammation and the risk of complications due to it. All that prep for nothing. The procedure itself.. you won't feel a thing. Demarol is a great drug and I prefer a colonoscopy to a flexsig as far as having no discomfort with the colonoscopy. However, had I known the procedure would be a flop in that he could not complete it..that would have saved me a lot of time, energy, and bathroom runs!

If you are not already gluten free, try it. It may take a while to notice if working, but it made a huge difference for me after a while in many ways.

Also, if in a flare, cortifoam is much easier to tolerate than suppositories or fluid enemas. See if your doc can prescribe it - can be expensive and the amount they give you does not last as long as they say - ask for 6 canisters to start per Rx.

Eating raw vegetables and fruits? Remove them from your diet when in a flare. Traditional docs tell you diet doesn't play a role, but see how your body reacts to know better.

Lastly, acupuncture and Chinese herbs prepared by my acupuncturist were lifesavers for me - in terms of getting the body more stabilized, inflammation control, calmness, and reducing over 90% of my 18 side effects from prednisone.

That was twice a week originally...your insurance may cover it or they now have community rooms where several people at once receive treatment for as little as $20. Some offer a sliding scale for those who may have tighter budgets.

I hope this helps.

Jemm