I Went into Remission... and the Whole World went to Hell

The title of the post is something my family and I joke about regularly. Unfortunate what 2020 has brought us in a lot of ways. Hoping everyone is staying safe.

I was posting a lot here back in 2016-2018 as I was new to the disease and had lots of questions. I am very grateful for some of the feedback and guidance I got along the way. For me, the big thing was switching from a GI to a specialized department at one of the hospitals in my area (very lucky to be in a city with top quality medical care).

I started on Entyvio in 2017 and it worked a great bit, but it could never get my over the hump completely. I resisted the enema and suppositories that my doctor and a lot of you recommended. finally, the urge to back to a normal life caused me to take the plunge, first with the suppositories and then the enema. I now take Entyvio once every 6 weeks, an enema once a week, and suppositories 3 days a week. All in all, it isnt much and it got the job done.

I have felt good for most of 2019 and all of 2020. Finally, I had a colonoscopy in June 2020 and my doctor confirmed I was in remission with no inflammation. It felt amazing to hear that considering it was November 2016 when I started flaring for the first time since my diagnosis a few months earlier.

The only question I have now is living in remission and managing the medications I take now. Is it possible to lower the number of nights I take the suppositories? Is it common for people to go from taking it nightly, to once every other night, and then once a week or something like that? My understanding has been the the disease is much easier to control when in remission, hence why people can go years in remission. My main concern is the idea that if I were to decrease the suppositories and I started to feel ill again, could I go back to my normal dosage to surpress the symptoms?

Hi...awesome youre doing so well!!!
Do you have enemas...and what dosage?
q

I have to use the Canasa Supp every night, otherwise Proctitis will flare again In less than in couple weeks.
Good to hear you are finally in remission!

@quincy - Yes, I take Mesalamine 4 Gm/60mL (I think 60 mL). I resisted the enema for so long because I figured I would never be willing to do it. After one or two bad weeks, I figured it out and now do it once a week without a problem. Been the difference as most of my inflammation was out of the reach of the suppositories.

@FlowersGirl - Yes, I remember you had started a little before I did. Awesome that Entyvio has worked for you as well! I hope your scope went well. Interesting that you only use suppositories when you need them. I've thought about doing that as I went from taking suppositories every night to every other night... but I figured, it's easier to just keep using them and not taking any chances. I would be curious to see if I could even just use the Entyvio and enema.

@The_Swan - that's my worry. I dont want to cutback any more and risk things getting bad again. Glad to hear you are doing well also!

@TroubledTurds - I dont want to change what medications I am using, I have wondered whether I am dependent on all 3 though or if I could cutback on the suppositories a bit. I've stayed on my schedule since I was put in remission because I had to work so long and hard to get into remission and didnt want to risk it.