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Flare coming on after 4 month remission.

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Posted 2/11/2017 2:56 AM (GMT 0)
So, I've been in remission for around 4 months. A couple days ago I started having having blood and frequent diarrhea again. Currently I'm on 4 tabs of lialda a day. I Sent my gi a message it usally takes about 3 or 4 days to here back. My question is, I have rowasa enemas and some predisone, should I start one or both of them before I hear back.

Was feeling great this is pretty disheartening.
Posted 2/11/2017 3:09 AM (GMT 0)
I would try the rowasa. I'm not sure what the downside would be other than the annoyance of doing a suppository.
Posted 2/11/2017 3:54 AM (GMT 0)
Start the rowasa for sure asap! Every night! If that isn't helping at all after a few days, or things seem to be worsening to the point you can't leave the house or are having accidents, then I would start prednisone. Hope you can get it under control fast!
Amy
Posted 2/11/2017 4:19 AM (GMT 0)
"I have rowasa enemas ........ should I start ?"


yes - tonite, if not sooner !
Posted 2/11/2017 5:54 AM (GMT 0)
Absolutely....use it nightly, and it can take a week or so to notice any change heading to improvement, and up fo a few months for everything to get set straight.

Try to avoid the pred if you can. My perspective. You can also try steroid enemas if you need an extra boost.

Curious if you went through a stint of constipation maybe a few weeks ago?

q
Posted 2/12/2017 12:59 AM (GMT 0)
Yeah, I had some slight constipation after tapering off the rowasa. It normalized shortly after though.

I restarted the rowasa waiting to here back from the gi.

Curious what next option is after lialda quits working.
Posted 2/12/2017 1:34 AM (GMT 0)
"Curious what next option is after lialda quits working."


lots of options and opinions on that question -

my two would be another mesalamine & diet modification -

but using a butt med on a semi-regular basis may be all you need -
Posted 2/12/2017 2:40 AM (GMT 0)
Quits working? What's made you think it has?

q
Posted 2/12/2017 5:25 AM (GMT 0)
I just assumed flare symptoms meant the lialda was no longer keeping me in remission.
Posted 2/12/2017 6:14 AM (GMT 0)
I've used mesalamine oral and rectal for 28 years.....i still flare. Whenever I flare,....and I mean earliest symptoms......i increase the enemas to nightly for a few weeks. If all is good, then i start the taper routine to maintenance schedule.

Just fyi....constipation is one of my first symptom of an early flare..as is stomach pain, excess gas and eventual rectal pain during bms. Since yours "improved" it was that the inflammation was getting worse.

Make rectal meds your best friend.....and with experience, you'll recognise which symptoms mean what. As well, pay attention to the symptoms as the flare improves/heals.

Keep us posted how you're doing.

q
Posted 2/12/2017 7:13 AM (GMT 0)
Will do, hopefully the rowasa starts helping again. I was hoping I could taper off completly. Guess that isn't happening. I'm new to all off this. I just read treated my self by smoking since I found out I had uc.
Posted 2/12/2017 5:39 PM (GMT 0)
Yeah, I tried tapering off as well in the first year too.

So you're smoking? Doesnt seem to be doing the trick either. Pick your treatment....i assume the enemas are far less harmful to your health. They're less cost-wise as well 🤔😆

q
Posted 2/12/2017 8:24 PM (GMT 0)
+1 for rectal mesalamine enemas

If you haven't done so already, get on a strict diet asap and experiment with no gluten, low fructose, no lactose. Try SCD or paleo and start the intro diet. You have nothing to lose and can always add more foods later. The remission rates for meds alone are not that great without diet and probiotics. I was in remission for 12 years due to SCD and occasional asacol when needed, and I was diagnosed with moderate UC at the onset but opted for the natural route plus meds when needed. This current mini flare that i'm having after 12 years of remission is very mild due to SCD and VSL 3, and unfortunately for me I can't really tolerate mesalamines.
Posted 2/12/2017 9:31 PM (GMT 0)
Not smoking currently, haven't for almost a year now. I had some severe heart problems and had to quit. Risks of smoking became to great to continue. That kicked off a horrendous flare that was just getting under control.

I tried scd only at first. That didn't really seem to help that much. I can't tolerate eggs or dairy alcohol. The rest seems to be ok. Currently eat a 'paleo' diet for lack of a better description. Maybe I'll try the scd protocol strictly now that I'm not in the middle of a horrible flare.

*update, already getting some improvement from a couple days of rowasa.

Post Edited (otheym432) : 2/12/2017 2:42:01 PM (GMT-7)

Posted 2/13/2017 12:23 AM (GMT 0)
My experience was that SCD only was not enough while in the midst of a flare, but significantly reduced the intensity of the flare and helped maintain very long-term remission.

Note that SCD can take 1 month or so for some to see any results and is best done in stages. Most folks don't know about the stages. Start with intro without eggs or dairy in your case and then progress to stage 1: http://svosg.org/
Posted 2/13/2017 1:41 AM (GMT 0)
otheym...good to hear you're having some improvement on the enemas.
Stay on them nightly for at least 3 weeks. If all is good, stay for anothe week before tapering to every second night.

Keep us posted.

q
Posted 2/13/2017 3:21 PM (GMT 0)

Jane974 said...
+1 for rectal mesalamine enemas

If you haven't done so already, get on a strict diet asap and experiment with no gluten, low fructose, no lactose. Try SCD or paleo and start the intro diet. You have nothing to lose and can always add more foods later. The remission rates for meds alone are not that great without diet and probiotics. I was in remission for 12 years due to SCD and occasional asacol when needed, and I was diagnosed with moderate UC at the onset but opted for the natural route plus meds when needed. This current mini flare that i'm having after 12 years of remission is very mild due to SCD and VSL 3, and unfortunately for me I can't really tolerate mesalamines.

Before putting out a statement like "Remission rates for meds alone are not that great without diet and probiotics" back that up with some evidence. I don't think that's really a true statement....
Posted 2/13/2017 5:10 PM (GMT 0)

Bull101 said...

Jane974 said...
br />
Before putting out a statement like "Remission rates for meds alone are not that great without diet and probiotics" back that up with some evidence. I don't think that's really a true statement....

Sure--here is just one article (I can find more later and update if I have the time after work). "In mild/moderate active disease mesalamine has response rates between 40%–70% and remission rates of 15%–20%. " If the majority with even mild-moderate are not going into remission, then it's not that effective in my opinion.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2376091/

There are also some studies on adding VSL 3 to low dose balsalazide (only 3g), which sig outperformed the higher dose of meds alone (mesalamine and balsalizide): https://www.ncbi.nlm.nih.gov/pubmed/15507864

Plus, there are hundreds of people just on this listserve alone who add supplements/probiotics/diet because the meds were not giving them enough relief. I know that is not an RCT, but I still think that is important to consider.
Posted 2/13/2017 5:52 PM (GMT 0)
I mean I agree with you, VSL#3 is actually backed by studies to have a benefit in UC. I think food can definitely have an effect on symptoms, but I'd say for more people healing starts with meds than food. I know food did nothing for me, then again meds didn't do anything for me either. I no longer have a colon....
Posted 2/13/2017 9:51 PM (GMT 0)
Ugh..that sucks :-(

We definitely need better treatments and I do think we are making progress overtime with more treatment options for folks with UC because there are still many that are treatment resistant out there.

Outside of very mild symptoms, I do think the gold standards is medication, but one should also try different supplements/alternative treatments that have some evidence-base once they are more stable/in remission.
Posted 2/13/2017 10:47 PM (GMT 0)
The throw everything at it but the kitchen sink approach is often what you need to beat stubborn UC. It always takes more treatments to achieve a remission than to sustain it.
Posted 2/14/2017 12:58 AM (GMT 0)
Pretty much one hundred percent back to normal today. I doubt the rowasa worked that quickly. No, idea why I'm better all of.a sudden, but I am not complaining. Going to have to really go over what I've ate the past few days.
Posted 2/14/2017 1:11 AM (GMT 0)
Make sure it lasts more than a day, might be a bit early to celebrate. Glad you feel better today, perhaps it's a good sign of things to come. We do have good and bad days.
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