I'm sure this has been asked many times but I'm having a hard time finding some answers. How would I know if I have pouchitis or cuffitis? I will be calling my surgeon and hopefully getting some answers but I'm pretty anxious about it.

I am 5 weeks post stage 2 surgery (3 stages for me) and basically feel like I'm having a UC flare again. I have increasingly been having more rectal discharge which is mostly mucous but also mixed with some stool. The past 2 nights, I've had night leakage which I have never had before and a lot of gas in my bag despite not eating any trigger foods. There is definitely pain but it seems localized to the little bit of my rectum that is left and often one particular area that seems to bother me more. Sitting isn't particularly comfortable and I had a lot of pain when I attempted to go for a walk yesterday. I was very sick before my 1st surgery and then dealt with a lot of bleeding and urgency between the next surgery while I still had the rectal stump. There isn't any blood any more but the discharge just doesn't seem all that healthy if you know what I mean. I have also started to have a little mild cramping as of tonight but honestly, maybe that's in my head.

I'm just so frustrated, so sad that I haven't even had my take down yet and am so worried that chronic pouchitis will be in my future. Any words of wisdom would be greatly appreciated. Thank you all so much.
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I have the same thing going on..I have searched all over the Internet for answers on this topic..most of what I find is that the mucous is normal and even some stool is normal. This is a daily occurrence for me(4-5 times daily) A few have said it could be diversionary pouchitis but my surgeon feels once I have takedown the mucous stops (just mixes in w stool).also you're 5 weeks out from major surgery..when I was around 6 weeks out I started to experience major rectal pain..my surgeon felt that was healing pain..the fact that I've been passing so much mucous has caused major pressure in the rectum (occasional spasm) and even butt burn so even though I haven't had takedown I started w sits baths and barrier creams..I don't know if you should panic yet about cuffitis or pouchitis prior to takedown unless you're having lots of bright red blood passing through..additionally being female I have noticed that cramping is way more intense during ovulation and period since the surgery. I know the feeling you're having as the last 8 weeks I've been worried too about life after takedown because of the symptoms were experiencing.. I'm 8 days away from takedown so I'll know soon enough...
Whether you have cuffitis or diversionary pouchitis.. prior to takedown, it can be treated. Cuffitis is inflammataion in the remaining rectal cuff, which is basically UC. Diverionary pouchtis is inflammation resulting from the lack of "nutrients" in the fecal stream going through the pouch. This is said to be completely unrelated to regular pouchitis, after takedown. Having diversionary pouchitis shouldn't be any precursor of pouchitis after takedwon.
Cuffitis can be treated with rectal meds.. even now pre-takedown. I might want to get that under control pre-takedown if it was really causing me trouble.
Diversionary pouchitis - if its causing intense pain, and unrelenting spasms can also be treated. Generally first line of treatment if short chain fatty acid enemas SCFA, if that doesn't work they move up to rowasa enemas.
Liz-thanks for the response..cuffitis and pouchitis pre takedown are not big topics around here. I did have a scope last month and it revealed inflammation at the anastomoses site..just a small section of it..my surgeon claimed it to be just healing and not to take suppositories because it's not UC..I'm a little confused because isn't Inflammation the same as UC? The biopsy (inflammed area) was of the anus tissue not colon as its been removed.
Thank you all so much for your replies. I'm actually feeling quite a bit better. And the night leakage has completely stopped now that I have stopped eating after 6PM.

Randi M - What you wrote is exactly what I've been feeling so it's definitely been a comfort that what I'm going through seems to be 'normal'. It's so strange to be hitting all this pain now but I never thought about the spasms because of extra mucus. Good luck with your takedown. I would love to hear about how it goes.
I can speak to this topic, but I don't want anyone posting on this topic concerned that my experience will become their situation after takedown. Everyone is different and I am just passing along my experience.

I had diversionary pouchitis prior to takedown and had all the symptoms you are describing vstRN. My surgeon felt it would correct itself after I started using my pouch. It has been a year since takedown and I just had a scope last week and I still have pouchitis and cuffitis.

I was on antibiotics for over a year and just stopped taking them. I have also struggled with cuffitis since my takedown on and off and I am currently being treated for that with rectal meds.

I was bummed at my recent scope report, but as Jan has indicated, along with both my surgeon and GI, there is often some level of inflammation in everyone's pouch. My GI is treating based upon symptoms and thankfully, my pouch seems to function pretty well even with chronic pouchitis.

The cuffitis is bothersome and usually after a few weeks on rectal meds it improves, however it is likely I will always have some level of cuffitis (as will other pouchers) that can be asymptomatic. My cuffitis was recently asymptomatic until the GI scoped me and did biopsies, hence irritated my cuff.

As a result of my UC history and my pouchitis/cuffitis history, my GI has recommended I have annual surveillance with biopsies....something I was not thrilled about as I really thought most of my troubles would be over with by having this surgery. In my case it seems I have had more issues with my jpouch than I had with 23 years of chronic UC. This is not the norm for many jpouchers.

I would not worry about chronic pouchitis as it may never happen to you and even if it does, it can usually be successfully treated. Although I would prefer not to be on long term antibiotics, if I need them to retain my pouch, I will take them again, even if needed on a long term basis.
Thanks Kjeane-you are one of the few on this forum that has been able to relate to my pre takedown symptoms..it will be interesting to see how this plays out for me..how does one know if they have cuffitis or pouchitis right after takedown? Aren't the signs of these similar to that of healing from the takedown surgery? Frequency, urgency, gas pain, any pain, possible blood..are these to be expected anyway?
That was one of my biggest dilemmas after surgery. I often felt my surgeon was not listening to me as he just assumed most of what I was experiencing was normal healing until I insisted he view my pouch. I can tell you I had many sleepless nights crying on the bathroom floor or sitting in the tub every few hours as the pain was excruciating (rectal itching, burning, broken glass feeling, boot up the butt sensation etc.). I just did not think it was normal takedown healing pain. There were nights I swore to my husband I was going to yank the pouch out myself.

I do think frequency is normal and some 'butt burn' is normal but blood, severe pain and burning/itching like I had signifies cuff inflammation, which my surgeon noted as 'surprising' on my pouchoscopy (I was complaining for a couple of months). I also had a stricture at the anastomosis so I had so many things going on it was tough to figure if the stricture was causing the pouchitis, cuffitis or pain.

My pouchitis has always been pretty mild and I think my surgeon just kept me on the antibiotics as a safeguard while I was healing. I find the cuffitis most troubling as it is very uncomfortable and irritating and I NEVER experienced this with UC EVER.

Just keep an eye out for severe rectal pain when emptying the pouch, passing blood, increased frequency and urgency (aside from normal adaptation time), extreme rectal burning, malaise like the flu (exhaustion) and nighttime leaks after takedown. These are all the hallmarks of pouchitis/cuffitis.

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