frustrated

This disease can throw an optimistic person into some bad places. I am sure a lot can relate.

My proctitis flare started in January. Started doing Canasa twice a day instead of once, no change. Had scope done early March, prescribed Uceris foam. Unfortunately I wasn't using it properly and restarted per Doc instructions 10 days ago. Still doing Canasa twice a day, too. Vit D 4000, VSL - 3 times a day.
No change.
Next followup is early May and then He wants me to add in Llada if no change by then.
Shouldn't there be even a slight improvement by now?
Just nervous - family has so much going on in May. I had to pass on an out of school trip with my son, just couldn't imagine being stuck on a bus full of people with a flare. Have a kid also graduating in May.
I swear this is worse after the scope. I did find out from the PA that Doc had removed a small mass that was benign.

Usually pretty good at pulling myself up - I got nada today but a huge pity party. I know this could be worse mentality is doing no good today due to pain.

I wish I were pissed off! haha. Thanks for your response.

My symptoms are more blood now than before the scope. Before it was maybe 2, 3 wipes out of the day, little in the bowl...now its consistently each time I have the urgency (with not much fanfare except blood, shedding, water) and if I do have a bm, it's usually kinda hard along with the other stuff and even more blood.

With regards to the Uceris canister, I was not pressing down on the canister hard enough. Didn't know that I needed to use more pressure - found that out when after a week the canister should have been empty and onto a new one, my canister still had quite a bit inside, could hear it when I shook it. Ugh.

I did not request a copy of the results, that I will do on my follow up to my follow up haha. Thanks for that advice.

Doc was pretty forward with giving this 6 weeks before Llada. I just thought I would have seen a little something positive so far.

Would help if the weather were good. Its been days of no sun.

Been fighting with myself over fmla. I may have to bite it and go for it. Stress level from work is super high and it will stay that way for the next 2-3 months. Its our busy time. I work from home but I'm on the phone with customers all day long. Work knows how long I'm off the phone to the second and there are scheduled break/lunch...and only allowed so many additional minutes off phone each day. This is where the accidents have come in. and anxiety. I called in today. Could not rustle up a fake, even kinda happy voice today. We are also recorded.

I do know from the scope results this flare has less length. Previously was at 18, now its a 10....but the Canasa and Bella Donna (sp?) helped for that one but it took about 3-4 months. I also didn't have this much consistent blood.

Commiseration welcome! Ahhhhh, FlowersGal.....cake and ice cream is a must for this pity party! Flowers, too. I have also tried to get back at myself by eating something that wouldn't be good, haha. What is up with that?
I see you're doing L-Glutamine. This morning I seriously considered buying some from Amazon but didn't. Did you have any change from using it?

fortunately, when i had the choice long ago to be either optimistic or pessimistic, i wisely chose the latter - have not ever been disappointed one minute of my life

and most definitely agree with this >

"I would suggest you call the doc back and ask to be put on an oral 5ASA regardless since the entire colon should be covered. Lower dosage. In conjunction, i would ask for 5ASA (mesalamine) retention enemas instead of the suppositories."

If i had to describe UC with one word then frustrating would definitely be it! Hey, we've all been there and totally get it. When I'm frustrated i try to develop a plan forward, get aggressive in your treatment, try new things, as obviously what you're doing now isn't enough.

I'd expect big improvements within 3 weeks of starting any UC treatment. If you're beyond the three week mark then I'd recommend throwing the maximum anti-inflammatory drug doses at your UC. That's 4.8 grams of lialda oral, and a nightly 4.0 gram rowasa enema. Call your gasteroenterologist tell him/her about your lack of progress and you want those new prescriptions.

Having ulcerative proctitis (uc limited to rectum) doesn't mean you get an easy pass, as rectal inflammation is the most stubborn and difficult inflammation to treat with this disease. Often, stronger doses and stronger medications are necessary for it. Canasa is usually 500 grams or at most 1 gram. It's really weak compared to the combined power of lialda and rowasa.

FG - we will definitely be having banana cream pie again someday! Im so sorry your flare has been going on for this long. It's maddening. Glad your humor is intact (:
Ipoop - thanks for more info! I love your sig line. Its so true. I am not familiar, yet, with enema's but I have a feeling that's another step for loving my UC relationship? is it that much different than what I'm doing with the Uceris foam? I have never done an enema and frankly, it sounds scary?gross? what isn't gross anymore? lol. sigh.
You all are bold. Makes me cringe to call the Doc after he told me to wait 6 weeks to see if there's been progress.

Hey, iPoop, do you still do Rowasa every night? Or are you on a maintenance schedule of some kind? (just curious)

Thanks for the info, ipoop. Doesn't sound too awful now so thank you.
Frustrated! Common theme
I figured out that my good mental state days start with littleblood, the bad ones start with a lot right off the bat. So yup, FG, roller coaster. I feel a little unpredictable - yesterday feeling ok and alright with the present, today.....ugh.
This shall pass

Yes, our day is made or completely ruined based on the first few bms of any given day. It's a wild emotional swing up and down as a heal. Unfortunately healing isn't a linear, continuous path of improvement. It's more like driving the bumpy, frost-heaved-roads up here in New England, full of ups and downs and leave nothing but pain (ouch my head against the roof).

Gozalot - I suppose the subject header - Frustrated - speaks to all of us and is something we can all relate too. A year ago I would've considered myself in remission - and when I'm in remission, I'm feeling so good Im tempted to stop taking meds all together. Now I'm on my stomach twice a day with suppositories, running to the pharmacy and arguing about insurance covering what... etc.

Sorry that you're going through a stubborn bout with all this.

Definitely agree with everyone's suggestions about follow ups and getting more aggressive if after 3-4 weeks you're not seeing any improvement. Also did you ask the doc if you have hemorrhoids? That can be another confusion added to the mix.

Finally, I would also look into the nutrition angle on this. I'm just beginning to do so, and am cautiously optimistic that this can be a missing part of my treatment plan. The last three days have been pretty much cramp free for me, which I'm taking as a good sign and hopeful that it could be moving me in the right direction. I'm not thrilled not eating what I normally like to eat but if I need to be very strict with this for a limited time to get this flare into remission and allow the colon to heal...it would be worth the sacrifice

"I have tried gluten free, low carb, and grain free and they all threw me into little flares."


sorry goz, but i call BOGUS !!!

how can it be possible to flare by NOT eating something ?

i know when i first became a vegan, i got plenty of grief by not eating certain things - mom just wasn't buying the whole stupid thing -----

so, you have some explaining to do !

raw fruits and veggies are not good for an inflamed colon!

I meant to say, goz, that I always have more pain and irritation after a colonoscopy/sigmoidoscopy. Not only is the prep really hard on the poor inflamed, colon, but also the massive pooping/cleaning out. And then there's the biopsy sites. I will feel little twinges in certain spots, which I assume is where they took the biopsies, for a week or more after.

i'll try it again >

gozalot said:" I have tried gluten free, low carb, and grain free and they all threw me into little flares."

soystud said: "how can it be possible to flare by NOT eating something ?"

or ....... some folks believe that EATING certain foods cause one to flare ....... BUT you're saying when you DON'T eat certain foods you flare -------

so my question is , Huh ?


anyway, you're probably still running so i won't hold my breath for an answer - isn't UC just wonderful ! we're so lucky

hope the blood keeps staying away -