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Posted 3/13/2017 1:58 PM (GMT 0)
So thanks to quincy, ipoop and soynomore for responding to my recents posts. I think I've been in a proctitis flare since early October. I am just getting used to understanding my body etc. I had tried cortifoam and canasa for 8 weeks( since december) and it kind of worked but I never felt amazing. I had asked about Rowasa at the time but doc said cortifoam was better so thats what I did. Quincy-thanks so much for pushing the Rowasa. I have been using them for 10 days and while last week was rough and I started with rumbling/pain and gas (complained on this site).. Suddenly things calmed down and BM formed with no traces of blood for 2 days. Soynomore- said I wouldn't use the cortifoam more than a several days. I poop- you scared me because if one cannot tolerate ASA's then you jump med ladder so this weekend I used Canasa in the AM instead of cortifoam, I also decided to retry Lialda (had not tolerated in the past) so took one in AM and one in PM/ then the 4gm enema in the evening. The transformation in my body is dramatic. So now here's the question-- What would you do now -my issues with lialda happened after several days last time so the jury is still out on the pills. The generic Rowasa is the Bomb!!! The Canasa in the AM is my security blanket (to replace cortifoam). Do I stay on all 3 for awhile - and what would you get rid of first if I get better and want to eliminate i.e. canasa or lialda? I don't mind rectal meds because I hate the side effects of oral meds. I am not stopping the enemas...not a chance. I trust your opinion due to your experience..then will tell my doc what I want to do.
mild proctitis 5cm-20cm per December sig-scope.
Posted 3/13/2017 5:41 PM (GMT 0)
Good to hear you've persisted.

The oral is a continual. Twice daily is good.

You need to stay on the 3 for now....and eventually drop the canasa by tapering off.

Enemas should stay on nightly for at least another few weeks.
Bleeding is not the only symptom for flaring.
As you start the tapering process.....your butt will rule that decision if it's too early.

Experience is your teacher.....my suggestion is to keep on a maintenance dosage of twice a week or maybe every 4 or 5 nights.....but that is a process to get there, so hurrying or dropping quickly will only send you back.
It took me almost 2 years to get the hang of it.

When you're stable regarding symptoms.....i say on maintenance enemas.

Regarding the steroid enemas...one can be on them for months and months with no problems. Subjective. But if you can use mesalamine, it's a better option and use the steroid for a booster supportive med.

q
Posted 3/13/2017 8:43 PM (GMT 0)
I'm glad you're improving.

I wouldn't rock the boat for at least several months after reaching a remission. Keep everything exactly the same for a while just to play it safe.

Sorry i scared you. I'm a big proponent of dispelling the fears people have over immunomodulators and biologics. They're really just yet another UC treatment and not a big leap. Fears hold us back from what's needed sometimes while UC spreads and gets more severe. Perhaps you dodged that bullet for now. Should you need them in the future then don't worry smile
Posted 3/13/2017 11:47 PM (GMT 0)
I don't plan on rocking the boat but I think it would be helpful for people to know that the enemas can cause lots of cramping and gas esp. during the flare and should calm down once inflammation calms. Also Lialda and other oral ASA's cause gas and crampy feeling period! I am going to try this Lialda again but last time I quit due to side effects. My doc wants me to stay on 2 Lialda in AM and Rowasa in PM so will try to stay on the oral as well.

I realize that some never have side effects but when people ask if the ASA's can cause these symptoms ..the answer is yes.

Now question is... is there a way to send people or moderators private messages on this site??

T -
Posted 3/13/2017 11:54 PM (GMT 0)
If someone has shared their email adress then you can email them (see the blue email icon beneath my username, click those). There's no PM feature with this forum.
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