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Help please! The past two days I have had extreme pain whenever I have a bowel movement - but primarily during and right after the stool passes through my rectum (or maybe right above it - it's hard to tell for sure). It's so bad that most times my muscles spasm and clench for almost a minute afterwards, and then it's hard to walk for a few minutes afterwards. It started a few days ago with it increased urgency but then not being able to clear out any stool when I went to the bathroom. I don't have hardly any pain between bathroom visits (besides some residual soreness).

I've tried to search the forums to see what it is, and I'm wondering if this is pouchitis or cuffitis? I've never experienced either before with my j-pouch, so it's hard to compare it to past experience. Also, I'm on round 4 of pretty intense chemo combo (doxorubicin/dacarbazine) for a desmoid tumor in my abdomen, and this last round hit me really hard. So I've been in bed mostly for the past 7-10 days, and have started noticing sores develop in my mouth (which is fairly common) - could this be some sort of sores in my anus/rectal cuff that's causing the pain?

If it is pouchitis/cuffitis? Is there any OTC way to deal with it since it's the weekend and I actually don't have a local GI in town (just an oncologist - can he prescribe me a round of antibiotics easily?)? Ive been doing hot sitz baths and calmoseptine, but I feel like that's just relieving the pain and not dealing with the problem. I've read that antibiotics are the primary method, but would that be dangerous since I'm immunodeficient while on chemo? What about probiotics to fight the infection?

Any help would be appreciated to get me out of this pain. Thanks!

Tags: pain, pooping, Pouchitis, cuffitis, OTC

Replies sorted oldest to newest

I'd be surprised if this pain were from pouchitis, and I unfortunately wouldn't expect antibiotics to do you any good. My best guess as to a cause would be mucositis from the doxorubicin in the pouch/anus in addition to your mouth, but that's just a guess. If the hot sitz baths and calmoseptine are helping then I encourage you to embrace them. Hopefully this will start to heal as Round 4 fades into the background. 

It would be perfectly reasonable to contact your oncology team for confirmation/reassurance/strategy. Good luck!

Scott F

Hi,

I just finished 21 weeks of chemo for ovarian cancer. My J-pouch definitely took a beating. 

I can tell you that I was on anti-biotics most of that time to help with pouchitis symptoms. Probiotics are not recommended with chemo, as your body is immuno-suppressed and cannot tell good bacteria from bad bacteria. 

Let me know if you have any other questions regarding the chemo with a j-pouch. It's not easy  

C-jay

CJB
Last edited by CJB

Thanks for the quick replies, Scott and C-Jay. I ended up calling my oncologist and he said it most likely is mucositis or ulceration in my rectum as a side effect of the chemo. Like you said, Scott, he suggested hot sitz baths primarily and managing the pain and said it should go away in a few days as the mouth sores go away too. So it was helpful to ease my mind and have a better idea of what was going on. 

I definitely may take you up on that offer in the future weeks, C-Jay. So far my pouch has been doing pretty good, but this round has really taken its toll on me, so I'm nervous about my remaining two rounds. 

-Jason

Y

Hey Jason,

Keep in mind that a lot of chemo side effects are cumulative, so they get worse with each treatment. I know every chemo drug is different, but generally the side effects are cumulative. I did sitz baths also during chemo. It helped, but was a temporary and short lived relief. Also, one of my pre-chemo meds was a steroid, and it was heaven on chemo days and for at least 2 days after the chemo infusion. No pouch pain at all. 

What a roller coaster ride it was! Be kind to yourself, I know how hard it can be. 

C-jay

CJB

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