First time flare

Welcome to the forum, but sorry to hear you are still struggling with UC symptoms this many months later. Sounds like your maintenance medications are not sufficient without pred. It's not all that unusual, as there is a whole lot of trial-and-error when initially treating your UC. It's common for our doctors to not get our meds/dosages right the 1st time, 2nd time, and sometimes even the 3rd time.

Why? Many gasteroenterologists start with the 1st class of UC medications anti-inflammatory mesalamine (in this case your octasa and enemas) which are the weakest medications available for UC. If that's not strong enough then it is necessary to add the second class (immunomodulators like 6mp/Imuran/azathioprine) and/or third class (remicade/humira) of UC medications to your current treatment. Treatment is additive, with combination-therapy showing the best results for most of us.

Seeing a dramatic relapse of blood while tapering prednisone is a huge, red, waving warning flag. If you continue tapering pred then you are going to return to a full-blown flareup. You are prednisone-dependent at your current dosage, which means without pred you return to an UC flare state (there's no physical addiction it is a bit of a misnomer). I've had this happen to me multiple times and there is a solution.

What you should do in that situation is:
1.) Go back to your last safe dosage of pred where you did not see blood
2.) Contact your gasteroenteroligist as soon as you can (phone/email/webportal) and tell him/her about what you've experienced.
3.) Expect additional medications and/or stronger doses to be prescribed to you.
4.) Hold at your safe dose of pred until the new medications are given sufficient time to work.
5.) At doctors instruction of when, continue the taper to zero. With your new meds and doses you should be successful this time.

There will be a solution for you and you will feel better (although we all want to be better yesterday). It is a process to get UC under control, be proactive and get a hold of your doctor. Most of us feel 100% normal on prednisone and there's a chance we start relapsing as we taper down when our maintenance medications are insufficient. Just remember that it often takes a lot more medications to stop a flare and get us into remission, than it does to maintain a remission.

Hi...welcome to the forum!
What exactly are the enemas that you are on?

You should ask for the doc to give you a stool sample kit for testing.

Ive been on nightly enemas for as long as 4 months with some bleeding, so it isn't surprising to still hear you're seeing blood at this point.

How has the consistency of the stool improved since being on the meds....this will tell a lot. How many times are you going compared to before being on meds.

Try not to focus on the blood.....from the sounds of it, you have lots of healing to do. Healing happens in increments, and UC seems to have a pattern in its healing.

Hang tough....try to recognise what has improved so you understand where you are at this point.

Keep us updated,
q

You've come a long way but have further to go in the healing process. Going 6-8 times a day on pred isn't something to settle on (well at least it is better than before... a trap) and one that leaves you ready to flare again sooner rather than later. As the treatment goal for UC patients is to get them into a stable, quiescent/deep remission where you essentially have a normal quality of life. We've had posters who've been in a remission 2, 3, 5, 8, or more years with a variety of different UC treatments. Unfortunately we all will eventually flare again, but when we are well-managed with an appropriate maintenance-treatment then the flares are mild, infrequent, and shorter.

For me, remission is 1 formed bm a day without urgency, without blood or discomfort. It is 99% like before I had UC. I say that as bms are now generally a little softer, sometimes I'll go twice and there's a bit of variation I never had pre-uc. The no urgency is the real win though, you can forget you have an UC and go about your day without anxiety/worries! So, don't settle for anything less than a remission. Keep trying for it, and adjusting medications and doses until you achieve a remission.

Try not to dwell on what it was like before.....your learning curve will be vast, as will your symptoms. I suggest you recognise each symptom, understand whst it means, how the colon heals, how it will be tapering pred...etc.

I'm assuming your UC is throughout....., and the healing of 6ish feet of colon and a stubborn rectum once it gets limited there is really no walk in the park. It will control your life for a while....but learn the what and why.

Yes, we have differing experiences, life-styles, med and food tolerances, patience, etc. It takes time, and adjustments for the time being are a good thing.

I've not had pancolitis, but my UC has never been as bad as the first few years.....and once things started to make sense and I created the treatment/maintenance regarding meds, it was easier to function and make plans.

Hang tough.....keep connected, and there are always options regarding treatment. Treatment and maintenance will differ depending on symptoms, and if you want to venture into higher tier meds, consider them.

I suggest probiotics....not high dosages, but start. Bedtime on empty stomach.

You are improving.....keep a realistic picture of what's happening. It's always confusing and consuming while getting it all figured out.

q

Hey...you could alternate your dosage of pred while tapering.

Fizzy drinks, beer and chocolate can give gas and possible diarrhea and upset an already ticked off colon. Won't make your flare worse. Shouldn't be drinking on pred anyway, plus sucks for your liver.

I don't know what probiotic yogs or aloe vera shots are.

Good to hear you got out and about with your wife.
😁
q

That's good your appt is on Wed....let us know how it goes.
I rarely have soft drinks, but when I do, I have ice and sometimes dilute and stir out the fizz.

q

Great news! We definitely have to be our own-best-advocate for what we need to be well, a good lesson to learn early on, as a new UC patient.

Expect azathioprine to take about 3-months to show an improvement, a very slow acting medication. If they go the biologic route, remicade/humira, then you might have a response within a few weeks time, as they are a lot faster acting.

They've called me back today and said they're going to do the infusions instead. She wants some faster results.

In Friday morning for a consultation and a chest x-ray!

Fingers crossed it'll be all good and I start seeing some results sooner

If they didn't explain why to you, they order a chest xray to look for previous signs of Tuberculosis infection (it would show up in a lung xray if so).

They often do a skin test for Tuberculosis /TB as well. They prick your skin with killed-tb, you come back in 24 hours to see if there was a reaction(if you've got TB then that site would be red and inflamed).

Sometimes they do a Hepatitis B test as well, just to make sure you don't have that infection.

Why? Latent/dormant infections can reappear after going on humira/remicade style biologics. Most of us have not had those infections, and it is easy. It's a good precaution to take though!