Bleeding like you're on your period coming from your butt, and the nurse says "keep an eye on it?" I think you need to be seen and need treatment. This sounds like cuffitis, pretty common. Call back. You need to get assigned to a new GI since your old one moved on. 

 

Jan

Oh! I have never had that. I have had several bouts of pouchitis. I'm just so nervous.  I called back after I had posted this and the nurse finally got me an appt for tomorrow at 10am.

How do you treat that? If that is what it is?

Thanks

Mesalamine or hydrocortisone suppositories. Bleeding is usually cuffitis (from the retained rectal cuff). Bleeding is uncommon with pouchitis, but does occur sometimes. 

 

Otherwise, cuffitis symptoms are pretty much the same as pouchitis.

 

Get well soon.

 

Jan

Thank you. You eased my fears.

 

Just got back from the doctor. The new Doctor is pretty good, he seems like he really knows his stuff. He said that there is inflammation and internal bleeding so he prescribed me Canasa suppository for 10 days. Hoping to feel better by the end of the weekend  

That is a pretty short script in my opinion. Like expecting to treat a UC flare in less than two weeks. You may get improvement in a matter of days, but do not be alarmed if it takes a week or more before you get relief. On the other hand, once I was diagnosed and treated (one month of Canasa), I now use the Canasa at the first sign of blood and only need it for a few days. But, I also take oral sulfasalazine, so I have maintenance therapy. 

 

Just be sure to call back if things are not turning around within a week, so there is time to get a longer script before you run out (or did he give you refills?).

 

Hope you feel better soon.

 

Jan

 

It wasn't any better after the 10 days so I had called back last Monday and he extended it for another 14 days. but this past weekend the bleeding had really increased and this morning it was just awful. It is starting to feel like when I was first experiencing symptoms of UC. Which makes me really nervous.  So I have called again this morning and explained that things have gone backwards and I am just not feeling confident in this treatment plan. 

Ask your doctor about budesonide. It is now available as an enema as well as pill.

I agree. When things get worse instead of better, you need reevaluation. You may need steroids. I hope you can be seen on an urgent basis!

 

Jan

The nurse called back and she thinks the next step should be antibiotics. She thinks its a severe case of pouchitis. But she had to check with the Dr first. 

So the flagyl they gave me worked.but last week I was having pouchitis symptoms. So I called right away and got put on another dose of flagyl. Felt great 24 hours later. Now the bleeding came back this am and I'm still on my latest treatment of flagyl. Not sure why. Gonna call in am.

Bleeding is usually a sign of cuffitis. It is very possible there is pouchitis and cuffitis simultaneously. My cuffitis responded to Flagyl, but the bleeding and urgency returned over and over again. I wound up using Canasa for a couple of months, overlapping with Flagyl for a week. I then transitioned to oral sulfasalazine for maintenance. That worked well for about 15 years, before I developed a more chronic/recurring pouchitis.

 

Jan