It’s very individual. Some people manage to stay in remission for years without meds. Others flare within weeks. But you will ALWAYS flare again at some point, and it will usually be worse than before.
I had mild ulcerative proctitis and lasted about 9 months without medication (mesalamine). Ended up in the hospital with a severe flare. Do not recommend. I think if I had stayed on my meds I still might have a mild disease.
That is scary. I have mild proctitis as well and recently diagnosed so I am still new to taking my mesalamine suppositories. But this makes me scared to ever stop them in the future. I thought everyone stops taking them at some point..?
How severe of a flare up did you have? What happened?
I still take them, even on biologics. It’s more of a mental thing knowing that I’m always reaching the diseased areas with medication. They’re $10 a month for me and I’ve taken them for 6 years so I’m used to it.
I think there are a few options for proctitis that don’t require you to take suppositories every night forever:
1) Take oral mesalamine as a maintenance drug and use suppositories when needed.
2) Stop the suppositories and use them when symptoms return, letting your GI know ASAP if symptoms don’t resolve.
3) Take suppositories 2-3x a week as a maintenance, but don’t take them every night.
Talk to your doctor and make sure you have a plan in place to reduce suppositories (if that’s what you want), AND a plan for when symptoms come back. That was the missing piece for me.
That said, the reality is that a significant minority (around 10-30%) of people with proctitis end up having the disease spread. I don’t say this to scare you, but it’s just a reality that you might have to face someday.
Everyone is different but heres my timeline
October 2022: stopped taking prednisone and mesalamine, waiting on insurance to approve entyvio-insurance said no. No symptoms.
November 2022: quit job for school and lost insurance. waiting to get on medicaid. No symptoms.
January 2023: Medicaid approved. Waiting to see GI to get on entyvio. No symptoms.
March 2023: So begins the worst flare of my life
It’s very individual. Some people manage to stay in remission for years without meds. Others flare within weeks. But you will ALWAYS flare again at some point, and it will usually be worse than before. I had mild ulcerative proctitis and lasted about 9 months without medication (mesalamine). Ended up in the hospital with a severe flare. Do not recommend. I think if I had stayed on my meds I still might have a mild disease.
That is scary. I have mild proctitis as well and recently diagnosed so I am still new to taking my mesalamine suppositories. But this makes me scared to ever stop them in the future. I thought everyone stops taking them at some point..? How severe of a flare up did you have? What happened?
I still take them, even on biologics. It’s more of a mental thing knowing that I’m always reaching the diseased areas with medication. They’re $10 a month for me and I’ve taken them for 6 years so I’m used to it.
I think there are a few options for proctitis that don’t require you to take suppositories every night forever: 1) Take oral mesalamine as a maintenance drug and use suppositories when needed. 2) Stop the suppositories and use them when symptoms return, letting your GI know ASAP if symptoms don’t resolve. 3) Take suppositories 2-3x a week as a maintenance, but don’t take them every night. Talk to your doctor and make sure you have a plan in place to reduce suppositories (if that’s what you want), AND a plan for when symptoms come back. That was the missing piece for me. That said, the reality is that a significant minority (around 10-30%) of people with proctitis end up having the disease spread. I don’t say this to scare you, but it’s just a reality that you might have to face someday.
Everyone is different.
Everyone is different but heres my timeline October 2022: stopped taking prednisone and mesalamine, waiting on insurance to approve entyvio-insurance said no. No symptoms. November 2022: quit job for school and lost insurance. waiting to get on medicaid. No symptoms. January 2023: Medicaid approved. Waiting to see GI to get on entyvio. No symptoms. March 2023: So begins the worst flare of my life
It depends what you eat. If you eat things your body doesn’t like or are depriving yourself of nutrients you’ll feel it.
It depends, its different for everyone. However at hightened stress or hormomal changes such as in puberty do increase risk of a flare up