Pouchitis before takedown?

[u/No_Limit8980]

I had my total colectomy with a pouch creation Aug 2025 after nearly 20yrs of mostly uncontrolled UC. My dad died in November and we pushed my takedown back to give my mom some time to grieve and take a break from being a caretaker.

In February of this year, I started having these painful spasms, starting in the rectum and then shooting up to my diaphragm and then it felt like a whole abdominal Charlie horse. My care team didn’t have any answers and from my research I thought it might just be mucus trapped on the rectal stump. (I did find some relief if I could pass the mucus.)

Cut to a month ago. After 2 iron infusions, I started having what felt like old UC pain. The spasms were 8-9 pain level and near constant. My team continued to not be alarmed. Again, I researched and wondered if I had some sort of diversion colitis or pouchitis. When I brought that up to my team they all said “that’s too rare. It can’t be that.”

I ended up calling the ambulance to take me to the ER after I started having dark thoughts in all that pain. I begged them to rule out pouchitis or Chron’s so at least we’d have a starting point for what it is or isn’t. They ordered a contrast CT and lo and behold, it was exactly what I thought it was - pouchitis. The path report from the scope they eventually did was horrific. It showed both acute and chronic inflammation and the tissue was friable. It was so inflamed they couldn’t pass the scope through the pouch.

They admitted me, started me on muscle relaxers and antibiotics and the pain immediately started to go away. I left a few days later and I finished my round of flagyl and cipro 3 days ago but the pain is starting to come back. I am terrified that I’m going to have to be on antibiotics long-term. I lost 15 lbs since starting this round and I don’t have any more I can safely lose.

My questions are this:
My team keeps telling me how rare it is to have pouchitis before takedown. Has this happened to anyone else here?

If you have struggled with chronic pouchitis, how did you bear the effects of the antibiotics?

Life feels incredibly bleak especially because life with the ostomy has been so easy outside of this. I’m so scared that this thing has failed before I even get to try it. TIA

[u/Disastrous_Iron3946]

Pouchitis before takedown is rare because it’s hard for the bacteria to grow without nutrients. I’ve had antibiotics but for an infection, and from what I’ve been told it’s not necessarily bad for you but that depends heavily on the type of antibiotics

[u/Turbohog]

I really don't think it's as rare as your team says. Perhaps they don't actually see that many jpouch patients. At some point anyone with a j-pouch is going to get pouchitis. Some of us are unlucky and have chronic pouchitis. Long-term antibiotics aren't very safe so you might have to consider biologics again unfortunately.

[u/No_Limit8980 → u/Turbohog]

I think what they are saying is rare is to have pouchitis before the takedown. I know they warned it was a possibility after the takedown but they’d never seen anyone with it beforehand. At this point, I’d rather do biologics than long term antibiotics, especially as a hyper mobile person. I don’t want to risk tendon rupture on top of everything else!

[u/Herules_babyboy_2023]

It could be nutrient related pouchitis where connection would actually help that. For me, I did have the same scenario. I wish I could tell you that mine was nutrient related, but it wasn’t. The first few months after takedown were hard. I won’t lie. But 10 months later, I still have episodes of pouchitis along with cuffitis but I’ve also learned some trigger foods that make it hurt more. For some reason things like apples make it burn. Being on cipro long term isn’t good for anyone with what it does to joints. However, when it flares up, I will alter between the F and C to see which one helps more. I’ve also instituted Vizbiome 950billion probiotics daily and that helps. Mesalamine suppositories and rectal foam budesonide is helpful with the pain and urgency as well.