Is Mesalamine a Temporary Solution??

So a bit of background
21M, diagnosed at 6yr old
Initially had proctitis, currently have sigmoid-proctitis
In the last year have had colonoscopy and couple months later flexible-sig

I am currently taking 4.8g Asacol (mesalamine) and I am advised to take Rowasa enemas (4g/60mL) nightly/every other night

NOW, when I take the rowasa enemas on a nightly basis, I do great - no symptoms (no bleeding, no discomfort). However, as soon as I skip a night or two of the enemas, slight bleeding returns. I have tried to take the enemas daily for 30 days, and then taper off into every other day, but the bleeding returns as soon as I do not take it daily

Doctor says the he does not want to give me higher medications (pred) if enemas seem to work, but I feel that I am not in a complete state of remission or maybe never will be.

Should I take the rowasa enemas daily for the rest of my life? ANY thoughts?

This sounds identical to my son and I look forward to advice you receive.

He Also seems to need the nightly enema.

Has yours always been this way since six? Have you always been on meds ? Have you had many flares or long remissions?

Sorry for all the questions just seems like my son apart from he’s 8 with proctitis

Doctor says the he does not want to give me higher medications (pred)

Your doctor is very wise. Pred is at best only a temporary medication not meant to be taken long term because it can have horrendous side effects.

Mesalamines like Asacol are milder meds and topical rectal meds like Rowasa are known to be meds with the fewest side effects.

Mesalamines are proven to help prevent cancer. Look up the side effects of the stronger meds such as immunosuppressants and biologics. The are are associated with greater chance of infections or worse. They work by suppressing your body’s natural immune system, that is why they are called “immunosuppressants”.

@quincy Thanks for the quick reply. The more I think about it, I do agree taking it daily for a longer period is the best choice.

@nakamura1967 At six I had proctitis and was given a series of enemas that seemed to put me in remission until I was 15 years old. I do not remember what medication I took, as I was really young and my parents were not that aware at the time, but I was in remission for 9 years. At 15 I flared and it was still proctitis at the time, so i was prescribed canasa (mesalamine suppository), which worked well.

However, as a young and naive kid (at around 17 yr old), I decided to ditch the medications and doctor visits, and just put up with the bleeding, which was the only symptom I had at the time. I had blood in every bowel movement for 3 years, and I stupidly decided that it was okay, as long I didnt have any other symptoms, which was the case at the time. At 20 yrs old, My symptoms became really bad (pain, frequent bowel movements, more blood) and after a colonoscopy I learned that it spread to become proctosigmoiditis. After knowing it spread which caused worsened symptoms, I took the rowasa for a 30 day period, along with the oral mesalamine, and it put me in remission for 7-8 months. While in remission I only took mesalamine orally (3.2g). I flared up this August and have been trying the rowasa in order to place me back in remission.

My biggest advice for people diagnosed at a younger age (which I'm sure you've heard before) is to never be comfortable with being in a flare, even if the symptoms are very minimal. The longer you spend in an inflammed state, the greater chance of having more serious issues down the line. With proctitis, symptoms can be very minimal and can be easily ignored.

I think you should use the enemas nightly. If it works for you long-term, that's great. It does work for many people long-term, and they never have to take prednisone or other drugs.

If you needed something more, I would first try mesalamine orally in addition to enemas, or uceris/steroid enemas, or uceris tablets... there are a lot of options before even considering prednisone.

but really, there is no reason to consider anything if nightly enemas keep you at 100%. Maybe if you stuck to the nightly for a long time (a few months), you could successfully go to every other night (or 3 on, 1 off, and go from there). The key is consistency. You could also try alternating with mesalamine suppositories. They are a little easier to manage.

Please remember combos of rectal meds are an option....always!
q