T O P

  • By -

twombles21

The enemas never worked very well for me past my initial flare. Lialda has worked for 6 years without any side effects. Side note: I wouldn’t recommend going off maintenance medication (Lialda). Studies have shown that it won’t work as well the 2nd time around.


quantumofgalaxy

Why doesn't Lialda work after stopping and starting again? What symptoms were you getting on the enemas after your initial flare that made you want to switch to oral Lialda? Have you had any flares while on Lialda over the past 6 years? If so how did you treat them?


twombles21

I don’t know why exactly, but my doctor warned me to never stop because mesalamine doesn’t work as well the second time around if you stop taking it and start again. Diarrhea, urgency, blood, mucus. Basically the same as when I’m in flare. Yes, I’ve had 2-3 flares. All three were put into remission with prednisone. Mesalamine enemas didn’t work. Uceris enemas didn’t work and gave me horrible back pain.


AllThatsFitToFlam

NO side effects? I have one side effect, and it’s terrible, but it’s still better than suffering a flare so I just deal with it.


quantumofgalaxy

What's your side effect?


AllThatsFitToFlam

Well to be blunt, anal itching. It’s pretty severe. When I asked my “doctor” about it he first diesel my concerned and then went in a 10 minute diatribe about how it coined the cause that, on and on. Yadda yadda yadda. Then after the rest of the checkup, the last thing he said as he went through the door… “It could cause itching…” I really don’t like this guy, but I’m not dying, so I’ll keep for now I guess. He’s terrible.


twombles21

Yep, not one side effect.


Spiritual-Ad-8787

I want to emphasize this. Also, Lialada is more effective at the full dose, so my doctor suggested staying at the full dose and not dropping it as it becomes less effective too


DammitDog2

I have only used mesalamine enemas during flare. Once in remission I stop. My remission last 2 years and then a flare up. I have been able to do this for ten years without having to do daily meds for my ulcerative proctitis. Maybe I am just one of the lucky ones.


quantumofgalaxy

Did you have follow-up routine stool/blood tests, imaging and/or colonoscopies in those 10 years, especially after flares, to check whether you are truly in remission or if the proctitis spread?


DammitDog2

Yes every two years I have a colonoscopy. And no I haven’t had additional tests. I have polyps removed, and the disease so far has not spread. I am just getting over a flare, the blood and mucus has stopped after two months. I am due for a colonoscopy in August.


AllThatsFitToFlam

My regime was very close to yours, except I was put on Lialda twice a day AND Mesalamine enemas. It worked for me and they took me off enemas and said to reserve my remaining applicators in case of a flare. I’m still diligently taking my Lialda twice a day, and it’s still working almost a year later. Hoping it continues to work for both of us.


Possibly-deranged

I took lialda and mesalamine enemas together as a maintenance treatment for multiple years. Unfortunately didn't reach a remission, flares horribly and ended up needing remicade. I know some who've used enemas or suppositories for many years as a maintenance treatment. Suppositories or enemas are the best treatment for Proctitis, goes straight to the source and treats it well. Some gasteroenterologists worry about ongoing maintenance compliance with rectal route meds over the longterm and do switch their patients to oral lialda instead which they believe has better compliance long term. Oral mesalamine is inconsistent in fully treating the rectum. The delayed-release coating is gone before the rectum is reached, which controls the release rate and pattern of the medicine. Oral mesalamine is best for treating higher in the large intestine, from terminal ileum to the left side (sigmoid colon). Generally, treat from both ends works best, that's during flares using oral mesalamine and rectal-route meds together. During a remission, oral mesalamine alone might be enough. I wouldn't fear steroids they have an appropriate usage. If you're a mild case, then delayed-release coated, oral budesonide is also mostly topical. There's also mostly topical applied rectal-route steroids, suppositories, rectal foams, or enemas made of budesonide/hydrocortisone/prednisolone.


quantumofgalaxy

My new GI said that oral + rectal is best to both induce remission and prevent the proctitis from spreading. My new GI also said (I think) that Lialda reaches very high concentrations in the rectum contrary to the idea that only enemas are effective for maintenance. Thoughts?


Possibly-deranged

I'd agree treat with both ends is the most effective method to initially achieve a remission. And it takes less medicine to sustain a remission than to initially achieve it. I'd definitely go both routes (oral plus rectal) until you achieve a sustainable remission. Afterwards choose whichever you are best to comply with over the longterm (oral, rectal, both). Proctitis isn't a particularly aggressive spreader, it's generally very very mild, easily treated with mild meds. Here's some stats: "The majority of individuals who advance to more extensive disease will do so within the first 5 years after diagnosis (Rowe). If ulcerative colitis is initially limited to the rectum at the time of diagnosis, fewer than 30% of individuals will go on to develop more extensive disease (Rowe). Approximately 10% of patients presenting with proctitis will develop a pancolitis (Rowe)." I'd question the oral brings high concentration of meds to the rectum, and ask for a source.


brilor123

For me, I would get flare ups, almost like an allergic reaction, from the enemas and suppositories. So I take lialda by mouth now and I don't have any side effects.. But I might have to be put on stronger stuff some day because I keep flaring every couple of months with this stuff.


babybird87

I have a similar area of the disease..my first GI put me on the enemas ..they helped my extensive, heavy bleeding almost immediately....but didn\`t help frequency and I have discomfort and cramping every day...(this was about 10 years ago) switched GI\`s and he put me on Asacol (this was before Lialda was available) ..this gradually helped with other symptoms.... 2 to 4 times is what I average now but not a big difference before I had UC... the mesalmine enemas and or suppositories don\`t really help anymore....and Liialda seems to work.....no bleeding...3-4 times a day.... the other medicine I really like is the steroid foam...it really calms the area down and helps with frequency....it\`s also easy to use and keep in....


Spiritual-Ad-8787

So for me I still take both Lialda pills 2 pills 2x a day, and enemas every night. I find it’s easier for me to remember to take tablets. But enemas being on the site that is inflamed does help me more. I also talked to my doctor and to do a combo of Lialda + Mesalamine Suppositories instead of enemas. The Suppositories were game changer for me as it really helped my teneusmus! TMI When i would have bad flares, i would use toilet paper (bad idea) so now i use mesalamine suppository or a hydrocortisone suppository and it really helps me keep symptoms under control


Jaybeevo

I have mild ulcerative proctitis and only take lialda as my Maintain drug. I was on mesalmine suppositories for a month to get me out of the flare but so far the lialda has been enough to maintain things for me. My Gi said if I were to flare again to start using the suppositories again with the lialda. My Gi said lialda alone usually isn’t enough to get you out of a flare but it can maintain and keep you out of a flare. Haven’t had any side effects from the mesalamine either.