Hello from Sassysback, and the name says it all!

I had been known as Sassy over 15 years ago when I was diagnosed with moderate left sided UC. This board helped me move into a long remission with one flare in 15 years on Asacol, until a few months ago.
I felt so good that I went against Dr's recommendations of staying on maintenance drugs because I just retired and my medical coverage does not cover all the cost. This mistake sent me into a major flare sending me into emergency a week after a colonoscopy. They wanted me on prednisone but I refused, so I see another GI in a week.
I am 57 and look and feel 77! It's been 2 weeks and I have urgency and mucus D up to 8 times a day. Hemorrhoids have exasperated the situation, I am using proctosone ointment to no avail.
I am way out of the loop on treatments for this disease, so I will read the New info and thank everyone for input and listening.

Sorry you are flaring after such a long remission.

How much Asacol are you taking a day? 4800 mg (6 tablets) is the max dose per day to be used when flaring and then taper down to a maintenance dosage once in a solid remission. 1600 mg/day is not likely to get you out of a flare. Would be best to get rectal meds too -- treat from both ends as Quincy always says.

There is a generic Asacol now that may be less expensive

Hope you return to the promised land of remission soon!

Sassy..sorry you are in a flare. Like you, I was in a very long and WONDERFUL remission..5 years at one time. Like you, I got slack on taking the drugs and like you...went into a flare and it's been in and out since. I suppose the drugs are like this forum; we tend to not be faithful to them when we feel good. LOL I do hope you can find remission soon. Listen to your doctors, read this forum, and you WILL find SOMETHING that will help. After over 20 years of this mess, I am finally reading all I can about the many various ways others have found remission; the good people who share stories and information in here are GREATLY appreciated by me. Just be patient. LOL EASY to SAY. Good luck to you

Gah flares are horrible aren't they. You're done awesomely with one flare in 15 years.

It sounds promising that your BM are already decreasing on the upped dosage hopefully once you get some rectals in there as well it'll get you out of flare. I've found the enemas on quincys advice great for urgency in the past.

FWIW I went on prednisone for the first time late 2017. Like you I was freaking out about taking it for the first time ever and really unsure if I should but my GI said it looked a mess in there and as my flare had been going on a while I took his advice. I think from memory I was on quite a low dose and I didn't get too many side effects and wasn't as scary as I thought. It definitely helped. but it wasn't a silver bullet either and I also got constipation added into the mix too followed by unpredictable bouts the other way. TBH at times I felt like dealing with UC flare was easier to manage but appreciated I needed to get inflammation under control. I had these visions of getting one nice poop per day off the back of the pred like some people mention but didn't happen for me.

It was my first time in the ER and the Dr. Was looking at my colonoscopy results from the week before. My regular Dr. was away, my new GI was away, so his office said to go to emergency. The ER doc was consulting with another GI from another hospital, about what I should take for pain. Lol, now next week I see yet another GI to discuss my bodily functions.

I will ask again for the Cortifoam, unless I can't get it here in Canada. Good news is I had a semi formed poop this morning! Looking at my bottle of 5ASA, I was on 1600 mg but have doubled that now to 3200 mg. Seems my vision has slipped too.

Living the good life for so many years I was eating anything and drinking 1 or 2 bailys coffees a week. Until I developed high cholesterol and tried to change diet, and exercise more, and taper off meds. This was in September. Shortly after, 1st sign was aching joints, mouth ulcers, pain in the right and left abdomen followed with constipation and large amounts of mucus. Of course I still believed I would never flare again and did not have UC like before. I am saying this to let all those people like me know, what happens in the gut, may happen again.

Thanks to this forum I can vent without bothering my husband so much!

Quincy, my scope was done by a GI I had only consulted with once. Nice man, he said I could taper off 5 ASA meds but should have a scope with my history of polyps. I suffered through prep vomiting a third. I did not see him after scope but was told to book a follow up in a month.
After a week of decline, I went to my GP who was also away, saw another Dr who would not prescribe, and found out my new GI was also away. However I did get the results from the scope as positive for active disease. So that's how I had to go to emergency to get something for pain and hemorrhoids.
I am still having urgency, lots of mucus and a bit of D, but see yet another GI on the 3rd. And I am not sure about liver enzymes. I will ask about that next visit. Does 5 ASA effect the liver?

I'm confused as to why a GI advise you to go off mesalamines.....especially with obvious inflammation that would have been visible if it's active. Did he take polyps as well?

Yes, mesalamines can affect liver and kidneys....hence the blood tests.
I have autoimmune liver disease....other tests will determine if something is up wih the meds or not.

q

The problem with going off meds is that the same meds might not get you into remission again. It's better to just stay on what works. Once you flare again, you might need stronger meds. Until you're out of options. Once you find a maintenance drug again, stay on it.

When you get on prednisone also take calcium.

Ditto it's not what you ate. Let us know how it goes with your new GI on thur.

Just to let you know that the constipation is an indicator of a flare with limited inflammation in the rectum.

Let us know how your appointment goes tomorrow....and got a copy of all the results for your records.

Request mesalamine enemas...and enough refills for tapering and maintenance (suggestion).

q

Always good to avoid the pred, whenever you can.

Huh, certainly a sessile serrated adenoma/polyp is a bit concerning, as they can be pre-cancerous. Yours came back as negative for that though, congrats! You've had UC for 20+ years (and have higher colorectal cancer odds), you should be getting annual colonoscopies, so make sure they keep an eye out for any more instances like that (you could even ask for a chromo-colonoscopy which uses a dye to make any anomolies more obvious and standout). The majority of us never get a CRC, just important to have screenings to cover you risks.

Oh, I hear you. I am soon a member of the 8-10 year club, after which annual or at least every-other-year scopes are recommended...ugh. Two things affect our CRC risks, time since initial diagnosis (risks increase with each passing decade), and disease severity. You are lucky on having only left-sided involvement and being on only mesalamines (you are the definition of a mild, limited extent case) and that makes you lower risk than pancolitis and/or severe cases on biologics. Around the 20-year mark you shouldn't be sloppy on getting scopes as you are getting higher in risk due to that alone. You can always ask for flex-sigmoidoscopies as you are left-sided, as the prep is just two fleet-enemas.

Long story short, songlady had a colectomy due to CRC, originating from a serrated polyp they chose to monitor for a while. Did chemo. Similar story, had UC for 20+ years.