Flare action stations

Hi everyone

I have been making use of this amazing forum for a while now and bit the bullet and joined so I can make a contribution as well. I was wondering if I could give my situation and see how this relates to other experiences and if anyone has any tips to help me along. I have had uc for about 9 years, with a nice remission from about 2007-2014. The past 12 months have been challenging, and I attribute it to life events that may have triggered me again (organising a wedding, purchasing house, all the standard life things most people do!).

I have managed to limp along living a relatively normal life with the odd mishap, (taking 3g of pentasa twice a day and immodium here and there as an insurance policy) however I had a colonoscopy check up three weeks ago and went into full blown house bound flare not long afterwards. My GI initially put me on salafolk enemas post op due to the scope showing inflammation limited to the rectal region. My inflammation was either worsening as the days went on or it felt like the salafolk made it worse, getting to the point where I could only hold them for about half an hour.

At my next appointment the GI took me off the salafolk and started me on 40mg of prednisone as the biopsies had since come back showing pancolitis. It has now been almost two weeks on the 40mg dose (was supposed to taper after a week but advised to continue as hadn't improved enough) and I haven't done anything close to a formed bm in a few weeks.

I have been splitting the prednisone dose into three doses during the day to try to get the most benefit, as I feel like it is really just holding off the d until it wears off, it doesn't feel like it has reduced the inflammation. I have been up at least 2-3 times every night for the last three weeks, and then go a few times in the morning as well. As everyone would know mornings and nights are the worst for the urgency.

Has anyone had similar experiences with the prednisone not working as it should, the GI gives me the impression it should be getting me back to formed bms. He said if the pred doesn't work as it should the next step is bowel rest then immunosuppressant's, which I would like to avoid if possible.

My diet is very simple at the present time:
brekky - pea protein, egg, kefir milk and / or scd yogurt, natural smooth peanut butter, honey and homemade almond milk smoothie
lunch - vege soup containing sweet potato, potato, tumeric, spinach, celery, carrot, mushroom, pumpkin. I overcooked the veges and pureed to make a smooth consistency.
dinner - vege soup with some rice and chicken / fish

I would appreciate any advice, tips, encouragement from the group as I try to see what is around the next bend.

Thanks

Tim

Thanks for replying gary. I found that taking all the pred in the morning made me worse during the night and read other people have tried the splitting of dose with success, what would you say the benefit is of doing all in one dose?
I went to a different GI (just to get a second opinion) a few months ago and he said I was underdosing on the pentasa and put me up to 6g, since going back to my original GI he hasn't raised concern about this?
Prior to the colonoscopy I had a period of a few weeks of 2-3 normal BMs and feeling good, but this all went downhill approx. a week after the scope. Obviously inflammation was still there but milder until the scope.
The whole diet thing is such a maze for me, and I have trialled FODMAP, SCD for a time and now gluten free and mostly dairy free. I understand it depends on the person and would love to get the cheat sheet for my body.

I told the GI I was going to do it and he didn't object. Do you think I get the most bang for my buck all at once?

Thank you everyone for your input, I will be asking my gi about the high pentasa dose and the pred dose when he calls me back, it has just hit two weeks on 40mg and I still have no formation and 5-6 minimum a day including a couple of times in the night. The diet thing is so person specific, I find it very frustrating trying to be super vigilant about what I eat and not know if it actually matters or not, a couple of years ago I was eating everything.

So sorry the prednisone isn't working better for you! I've only had to use it twice for bad flares, and both times it worked miraculously within only a few hours of my first dose.
One thing I found alarming in your food list was the almond milk. Products like that, and also soy milk and coconut milk contain emulsifiers, which can cause colon damage (ex. Carageenan, xantham gum). You can get varieties without, or maybe you're making your own almond milk? Wasn't too sure from your post.

I'm currently waiting for an immunosuppressant (azathioprine) to start working. I started it in March, and they can take months to start working. I was concerned about immunosuppressants too! They sound scary, but researching them, including posts on here eased my fears. They are not like the biologics, and have been around for many decades. A lot of the reported side effects actually occur in people taking much higher doses than us for organ transplants. That said some of us UC'ers do get nausea from them. Seems it usually goes away after a few weeks except in a few unlucky people. I had stomach pain and maybe some nausea for my first two months on aza. It wasn't horrible, but just irritating. Luckily the last week or so i've had no problems.

I did wake up the other day with quite a sore throat, and got upset thinking the aza was making me more succeptible, but after a gargle with listerine and an extra dose of vitamin C it was gone by that afternoon!

Anyway, sorry for the long post, i hope the prednisone starts working for you! And its a shame you reacted poorly to the salofalk enemas. I think the salofalk is the only think keeping my flare from getting out of control right now until the aza starts kicking in. I think the probiotics I take also help a lot (feel flare worsening if I slack off taking them).

Good luck!