Abscess caused proctitis flare, GI suggested Crohn's Colitis??

Update on my abscess: it was drained and a fistula removed. Now the area where the surgery took place doesn't hurt as much, if at all. I'm still limited in my activity to mild walking. I tried pushing myself to walk a few miles on Friday night but it started getting uncomfortable and I ended up taking a cab.

Update on my body: I stayed off rectal meds for 12 days, per my GI doctor's suggestion (over the phone, having not examined me at all). I thought this would be a bad idea but listened to the advice. Yesterday I had severe cramping and extreme urgency. No blood or mucous but incredibly difficult to pass BMs. Thankfully I also had an office visit scheduled with my GI where I told him about this. He immediately scheduled a flex sig for today.

After the scope: I was told there's a flare in my rectum, no inflammation in my mid-sigmoid or anus. The doctor has prescribed 60 mg of Prednisone, then 40mg, then 20mg, then 10mg over the course of 4-5 weeks. He told me to go back on the rectal meds (thanks). He then suggested I "keep an eye out" for possible Crohn's colitis. I asked him why, and he said it's atypical to have an abscess relate to UC, and is more commonly found to create a flare in people with Crohn's. He suggested I may have Crohn's limited to my rectum, if this is the case.

Does anyone have any thoughts on what he said? I don't know what difference it makes, if any, to have UC or "Crohn's Colitis" but I guess we'll see what happens with the steroids + return to rectal meds.

I can't help but shake the thought that I never wanted to stop the rectal meds, and no doctor offered any help or understanding of this. I keep thinking that I could have avoided the post-surgery flare if I just stayed with my Rowasa in spite of the abscess pain.

This is the most difficult experience I've had since being DX'd with UC 12 years ago.

Glad you're improving!

I'd focus on healing and not worry about what your diagnosis is. As I don't believe it is going to make a lot of difference to you on a day-to-day basis. Certainly, fistulas aren't as common with UC, so mentioning Crohn's as being a possibility at least seems prudent. Something to keep on your back-burner for future reference. These things tend to reveal themselves over time, repeat colonoscopies, biopsies, and other tests. Misdiagnoses are generally pretty rare but do happen to some of us.

There's a lot of overlap in treatment options between UC and Crohn's, but a few differences here and there. Generally Crohn's patients get the new meds before us UC patients. Certainly surgical options are a bit different, as well (no j-pouches for crohn's patients).

You can have an abscess with UC as well. I developed an abscess after my first surgery that was impossible to get rid of, but after my surgery I asked my surgeon if he 100% could confirm that it was UC not Crohns and he confirmed that was indeed the case. I hope he wasn't wrong...

I had a similar experience. I was diagnosed with ulcerative proctosigmoiditis and later developed an abscess then fistula. I asked my GI if I had Crohn's disease, not UC. She stated that she did not think so, and that people with UC are at higher risk for abscess and fistula than the general public, just not as likely to get them as Crohn's patients. She said that it was still a possibility, but that it would not change my treatment plan.

There are many people on this forum who have had multiple abscesses and kept their UC diagnosis. I do not have the study handy, but I remember reading a figure of 17% of UC patients develop abscesses, don't quote me on that because it was a while ago that I read it. Approximately 50% of people who develop an abscess will develop a fistula, regardless of IBD diagnosis, so a fistula does not necessarily equate to Crohn's.

My colo-rectal surgeon first suggested that I should "keep it in the back of my mind" that I may have Crohn's. I asked him about it at a follow up appointment and he backtracked on that a bit and stated that since my abscess/fistula was 'midline' that he didn't think it was Crohn's. He said he sees problems with plenty of people in the same location who don't have inflammatory bowel disease at all. Were the abscess off to the side, he'd be more inclined to suspect Crohn's. This guy studied at ivy league schools and did his residency at Mayo Clinic so I tend to trust what he tells me.

At this point, I don't know which I'd rather have. All the research $$$ goes to Crohn's but UC is "curable" with surgery. The only thing the experience has taught me is that I will certainly go for the biologics if and when the time comes if they will help me avoid that nightmare again.

sfc425 said...
Does anyone have an opinion as to whether I should or shouldn't take the Prednisone if it seems as though the rectal meds are doing their job?
Should I hold off on the Prednisone or throw caution to the wind and take this for 5-6 weeks?

Give it another week and see if you continue doing well. I always try to avoid pred if at all possible. Should you start backsliding and get worse, then by all means yes, take the pred.

All you can do is try. Good luck.

Thanks, plucky. I was actually able to administer Rowasa and have retained it for hours already today, so I'm hoping my symptoms will continue improving with a stronger dose of Mesalamine.

I actually asked about Budesonide and the GI said "that tends to be specifically targeted and we want to make sure you are completely inflammation free, which the Prednisone will do."

If I'm getting better I think I will stay away from steroids entirely, really. I truly believe this flare was caused by being off the rectal meds for 12 days (per my GI's orders). The reason I say this is that I actually popped a Canasa in a couple nights during the 12 day period and my BMs were formed and came out normally (albeit painful because of the surgery) and regular. Once I went past the 6 day mark is when things got bad. I was against stopping rectals but my GI wanted me to wait until I saw him.

I was actually tested for IgA and IgG antibodies by a former GI, now that you mention this. I remember him telling me directly the same thing yours told you.

Now that I've considered those last two paragraphs, it may be prudent for me to reconsider continuing with this GI doctor. I've seen him for 2 years with total remission and now this one nightmare experience where he seemed too busy to so much as check in on me when I told him I'd had surgery. He just left a message telling me to stop rectal meds, which led to a flare. I don't know if that's who I should trust my health with.

10 days of steroids doesn't seem like much to me. I'm on a 8 week course, and this is my 3rd round of prednisone in less than a year (6-8 weeks each time.). I love the prednisone. It's the only thing that puts me in remission. I don't have side effects beyond some trouble sleeping, but not to insomnia status. I sleep 5-6 hrs a night usually.

I know steroids are bad in the long run, but I am really relishing a halfway normal life right now for a few weeks after almost a year of constant flaring. So, I'd say take them. But I'm pro-steroid at the moment.

Sorry you've had a rough day sfc. If I was you I'd look for another GI that is more up to date on best practices with UC. My last 4 (5?) GI's all have good "pedigrees" (practice at the best hospitals and clinics regionally, some are even internationally recognized for their pioneering work with IBD). Every single one of them hates prednisone and would never use it in your situation (unless I'm missing something). I really DID need the prednisone and they were still disgusted about it (I've consulted 4 different GI's during this flare).

And what does he mean the Uceris won't work? How does he know you have inflammation outside of your colon? Your colonoscopy said inflammation was limited to the colon. Uceris treats the colon and avoids the havoc that prednisone wreaks on your body. IMO he's bullcrapting you. He's treating you like you have Crohn's. And he didn't even bother to confirm his diagnosis. I'd fire him.

My GI's wanted me off the prednisone precisely because it slows healing--which is bad for my fistula. I'm tellin' you sfc, this GI isnt doing you any favors with the pred. For the abcess you want antibiotics and also humira is said to heal fistulas (dunno bout abcesses but would guess same goes for them). 10 days is short thoughb so there's that.

Hey don't stress about this. You just started the rowasa again and your flare is limited to the rectum--disease-wise you are not in bad shape. Even with a little blood you can afford to give the rowasa at least the weekend to see how you feel--at least that's what I would do, because chances are you won't get worse since you are using the enemas. Or just take the 10 days and get it over with, which is also not the end of the world. You are stable and you have the luxury of choices at this point. Wooosahhhh. You're going to be fine.

Oh good, glad your symptoms are improving! On the positive side, I love the energy prednisone gives me--it's always so refreshing after feeling tired and crappy for weeks (or months). Have a good weekend!

Yes, I agree. I was SOOOO bad off right before Christmas.... crying and depressed and absolutely no energy. Pred kicked in right away and I felt like myself again. REally, sfc, I wouldn't worry about a 10 day course. (Actually, I might worry it's not long enough... HAH! :D But like I said, I'm pro-pred at the moment for the reason that you mentioned.... I was sick and tired of feeling sick and tired and just wanted to feel better again -- even if it was just for a while).