Since there is no inflammation or Crohns, I am guessing at this point but maybe the anal pain is coming from not drinking a lot of water. I use to have anal pain too from not drinking much, but it has since gone away with me drinking tons of water. Maybe that might help?

Have you tried biologics in the past?

I was on Remicade when I had UC.  Haven't tried anything else yet.

It sounds like cuffitis to me.  I am having the same issues almost compared to you.  My doctor finally put me on a oral medicine instead of suppositories.  I found out it take 6 plus weeks to start working.  She took me off Cipro since I was on 7 days and my suppository.  I feel terrible and the pain inside is unreal.  But it’s right inside of my anus.  I don’t believe drinking water has a lot to do with it but I drink a lot during the day.  And it hasn’t helped me at all.  Just saying.  

Please keep me posted.  I’d like to find out what is going on and how you end up treating it.  Cipro might really help you out if it’s inflammation like cuffitis.  You might want to ask your doctor?  My scope I had, pouch looked great but inflamed cuffitis.  

Best of luck.  I hope I might haven’t given you some ideas to look into.  I am sorry you are in pain.  I totally understand.  

Hello, I have a lump as well that’s super painful. Did you find a way to help ease it?

I wish I had great information but here are all the things I did to help with the pain -

- prescription strength steroid cream I got from my doctor

- a lot of warm baths

- rested in bed with my feet elevated above my head to relieve pressure

- stayed off my feet a lot

-I use Calmoseptine regularly

Also did you go to the doctor? If it's a fistula then it will need medical attention also if its a size-able hemorrhoid it will as well.

I went in for fistula surgery and when they went in there they were unable to find the opening of the fistula so they didn't do anything.  My issues has calmed down for right now but they said it could recur and if it does I need to go back to them immediately etc.

I hope you are feeling better soon - I know it is very painful - I was miserable when it was in full flair up.

Btw they also changed my anti biotic from Cipro to Amoxicillian - it helped my stomach pain!

@feirs1 posted:

I was on Remicade when I had UC.  Haven't tried anything else yet.

I would definitely try other stuff. The list goes on: Mesalamine, stelara, etc.

You might want to look into the suppository Canasa.  I swear by that for the anal pain.  I drink a lot of water all day.  And that has not cured my anal pain because it’s cuffitis/proctitis I have. I am not sure drinking water is going to cure any of your problems.  Though you do need to drink a lot of water to stay hydrated.  Good luck and thank you for keeping us posted.  

@grandmaof1 posted:

You might want to look into the suppository Canasa.  I swear by that for the anal pain.  I drink a lot of water all day.  And that has not cured my anal pain because it’s cuffitis/proctitis I have. I am not sure drinking water is going to cure any of your problems.  Though you do need to drink a lot of water to stay hydrated.  Good luck and thank you for keeping us posted.  

Did Canasa clear everything up for you?

Yes it did.  

@grandmaof1 posted:

Yes it did.  

Glad to hear it hon!

Regardless of you having a pristine pouch, the fact that you have serious perianal disease is a big deal. It may not be an indicator of Crohn’s because perianal disease that arises from the suture line at the anus could a surgical complication, not IBD related. Finding the opening of a fistula can be quite challenging, so maybe it is time for a second opinion from another provider with more experience.

If this was pouchitis or cuffitis there should be some visual evidence when scoped, even if you were on flagyl.

In the meantime, it might make some sense to try to resume Remicade or try Humira to see if it might help close the fistula.

Jan