WORSE FLARE AFTER 10 YEARS

Those in remission, DON’T get complacent, and comfortable like I did.
It will ALWAYS be there lurking, ready to pounce when you least expect it.
Yes I have had my share of discomfort and issues, with changing meds, but small flares are NOTHING like the big one!
Meaning a toilet bowl full of blood, those horrible creepy noises coming from your butt and stomach.
The assault of strain, diarrhea, cramps, the overwhelming feeling of helplessness.
IT’S BACK😩
What have I done different in 9 years for it to go bonkers and out of control now?
It’s the meds!
For me, I have been able to switch from Lialda, to Apriso, Pentasa, and maintained my UC.
IN REFLECTION, I could feel it coming.
Those days when you get less hungry, upset stomach, but I ignored the obvious warning signs,
too busy living my life.
I have been on Pentasa, having to buy my drugs in bulk from Canada.
On Medicare now, and way past being in the gap, so out of pocket is only option.
I fall in the middle class slot, and most all programs to get a break on meds are out of reach!
As a result I get bled dry like so many others with health issues .
My go to STOP THE UC FLARE is UCERIS.. I have tons of it, and I am on my fourth day of taking it.
Blood stopped, but runny mucus, not even diarrhea . I have never gone past UCERIS as a FIX IT.
Have you UC people any suggestions? I have a call into docs office ( my GI is retiring in August😰) but do any of you have a SLOW IT DOWN remedy?
Yes, I am taking the probiotics, making my own yogurt with cultures....just hard to think when you are going through hell every minute. Also body aches and back pain.

What is 6MP? Been out of the loop for awhile. I have pancolitis.
Just making my probiotic yogurt now, and going back to basics with food and my UC book.
Vacation ruined😩

I have not eaten much today, applesauce and crackers.
The UCERIS corticosteroids are kicking in. My GI said to take A teaspoon of Imodium twice daily as well.
Blood has tapered down today a lot. I cannot handle Prednisone, too hard to deal with no buffers. The UCERIS is time released created to target and protect the colon directly. Unbelievably expensive but if you are working with insurance your doctor could prescribe as well.I have a LOT of UCERIS as I hoarded it
While I was still working and covered under insurance.
Lots of water and gator aide, your meds,time, probiotics, rest and let’s both hope for the best!
God, I hate this disease!😩

So sorry to hear you are back in a flare. For me...I'm FINALLY getting better. Entyvio seems to be helping now, but it isn't the quickest of the biologics. To stop the bloody morning diarrhea I was taking two diphenoxylate/atropine EARLY in the mornings then taking Donnatal twice a day. I was ready to just give up and get my colon OUT. We get to the point that it just gets too much to live with sometime. Hang in there and keep your G.I. doctor advised of any changes you notice. It WILL get better. Best of luck to you.

Not as much relief as I wanted yet. I am going to whine here just a little.
Weak, depressed, tired, and so deflated.
In spite of Useris, Pentasa, Canasa rectal enema, Imodium and barely eating, still getting up each day to a toilet bowl of blood. Not even diarrhea yet. Just mucus, wire noise, blood.
Hoping after 10 days that I would have seen SOME improvement 😩 No fever though and that’s a good thing!

Agreed, might be time to ask for dreaded prednisone if the Uceris does not kick in within 14-days or so.

It sounds like you have a moderate to severe flare, and Uceris is just not strong enough for this flare. Pred is meant for moderate to severe flares, works fast, and will give you some relief.

Uff, sorry to hear. And a sincere thanks for the wakeup. I myself have gotten too complacent and have certainly taken for granted my luck so far, skipping meds whenever, etc.

Your misery has made me more mindful to respect the sleeping beast

Best of luck.

https://www.jwatch.org/jg200002010000010/2000/02/01/6mp-and-inflammatory-bowel-disease-how-long-how

Try copying/pasting the link into your browser's URL bar.

Tristan1974 said...
Uff, sorry to hear. And a sincere thanks for the wakeup. I myself have gotten too complacent and have certainly taken for granted my luck so far, skipping meds whenever, etc.

Your misery has made me more mindful to respect the sleeping beast

Best of luck.

Thanks Tristan. I feel like I have been banished to hell when it happens and I have even wished for death if
It continued too long. I have been through cancer, broken wrists, ankles, bad stuff but NOTHING compares to this for me. On Prednisone now. Blood tapering and praying that somehow I can go on vacation in Oct.
Best to you also, the fight never ends

pltt19 said...

Michelejc said...
See if you can get 6MP. When I was in my worst flare my doctor gave me UCERIS and 6MP. Stopped the flare quickly. I've been in remission since. I take the 6MP as part of my maintenance medication.

Yes! I will ask him. Is that part of your maintenance ?

Yes, that is part of my maintenance.