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Hi all,

First-time poster but recent long-time reader trying to figure out what's wrong.

-April 15, 2024 I had J Pouch reconnect with Dr. Kiran at Columbia Presbyterian after multiple scopes and visits with him and Dr. Shen to confirm I was a good candidate. I had a loop ileostomy with J Pouch disconnected since 2014 due to complications after 3-step surgery back in 2014 (when I first met Dr. Shen at CC).

Dr. Kiran said he fixed whatever was wrong with the pouch, and every day in the hospital was good minus pain tolerance from full incision. On 4/22 after a week Dr. Kiran and Dr. Shen discharged me on oxy, gabapentin, prilosec, tizanidine, cipro and flagyl (had been taking both antibioitics on IV in hospital).

Fast forward a week to 4/27ish. My symptoms deteriorated rapidly:

frequent, urgent, spasmic bowel movements. 20+ times per day. No blood. Had to be bed-ridden to get to the toilet nearby. The moment I'd lay down on the bed, I'd have to run again to the bathroom to poop. Consistency wasn't terrible. Butt burn was horrible.

I saw Dr. Shen again on 4/29 who told me I have "a tight anus" and prescribed Tinidazole and Uceris (budesonide recal foam) to treat the frequency, urgency, cramping to hold in bowel movements for now.

He did a quick in-office scope and said small inflammation in the cuff was due to this "tight anus." He said this is pelvic floor related and scheduled me for anorectal manometry and he thought I would fail. My appointment is May 30.

Now on May 20 -- nothing is working to relieve my symptoms. The Uceris 2x day doesn't work. The 10mg 2x valium suppositories Dr. Shen added don't work. I'm not on any pain meds or antibiotics. They extended the Cipro and Flagyl a month but it didn't help and that course has ended.

My symptoms:

-Fairly good during the morning, I rarely poop after I wake up. I try to do most of my eating before 5pm. Basically from 10am-4pm I'm somewhat functional with infrequent trips to poop. Today was worse. But if I get the urge, it's a painful spasm in my anus/rectum like always. No easy poops. Gas causes this as well. More crampy after I eat and as the day goes on. I sprint to the bathroom

-Once the late afternoon / early evening hits...it's like I'm allergic to my poop. I have no abdominal pain, but terrible spasms in my rectum that force me to sprint to the bathroom to push out whatever comes otherwise I will poop in my depends or I'll hold it and it'll pass but come back stronger. The consistency is sometimes formed, sometimes diarrhea. But it's typically small amounts. Never complete emptying. For the next 12 hours I am up dozens of times, wearing depends and running from the bed to the bathroom seemingly all the time during the night. Barely any sleep. This is only happening as my body is digesting food, I guess.

-Pre surgery, I should note I sometimes got these spasms in my rectum that created the sense of pain and urgency, but they were more bearable as only mucus would come out. This would happen sometimes, but most of the mucus came out pain free. I always sat on the toilet to pee because I could push mucus out. I couldn't pee standing up without my anus activating to push mucus out, and I really have to concentrate now to pee without leakage from behind.

A November 2023 scope with Dr. Shen showed in pathology "severe and active chronic enteritis in the cuff" but Dr. Shen and Dr. Kiran dismissed this because it looked good and they said pathologies can pick up old inflammation from years' past.

Could this be Pouchitis? Cuffitis? Pelvic Floor issues or anything else? What tests should I ask for? Dr. Shen might do botox after anorectal manometry. Could my "tight anus" just be so sensitive to anything more than mucus passing through after 10 years disconnected? Neither metamuciln or imodium help. They may change stool consistency a bit, but they don't change frequency, urgency, or spasm in anus.

Please help. My nights are horrible and nothing is working and my appointment isn't for another 10 days.

Last edited by JacobW
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Hey JacobW I feel like I’m reading something I would have written —very similar sounding symptoms and experience. What I learned over the seven years after my takedown is that the worst thing a j-poucher can do is push like you used to when you had a rectum. I learned the hard way. Between my 2nd and takedown surgeries—wwhen I had the loop ileo—I had a lot of mucus leakage. I’d step off a curve and would feel the wetness without warning. So I clenched. And I clenched. When my manometry test result came back at 300 (3x normal) it was assumed that all my clenching had overdeveloped those sphincters so much that I had anal congestion. The anal congestion, I assume, was the reason I didn’t fully empty and that meant I could be back on the toilet in minutes. Frequency was always high, avg about 10X-12X  in 24 hours. Up usually 3-4 X every night. I think it was all my pushing. I did five months of pelvic floor therapy 2x a week with biofeedback. It did help and I learned how far I could gently push without over stretching the pelvic floor muscles. Biofeedback and a great therapist helped me find that safe zone.  When i would push too hard those muscles would work against each and sometimes the spasms fooled me into thinking it was okay to keep pushing.  For me the resulting pain could last days and at least one time I asked my PCP for oxy I was so bad. I also thought it was cuffitis and took mesalamine suppositories for months with little relief. Relief for me came after using what I learned in PF therapy. Don’t push, take warm sitz baths, eat a clean diet and stay hydrated.

Hi Jacob,

I am finishing a two week course of hydrocortisone suppositories to treat my ongoing cuffititis, which I have had since takedown.
canasa for me does not induce remission, only steroids will work.

So, if uceris will not induce remission in your tiny cuff, I’m thinking it’s not cuffitis, and agree with Scott to try the antispasmodic medications.

levsin works great for me whenever I am in IPS mode.

i do hope you are able to get control over your situation. I totally  empathize with your constant running to the toilet. I had such an experience for about 6 months after takedown until I was able to determine the cause.

I wish you the best.

Hey Jfill21, curious if you were also incontinent when you suffered these symptoms? I have to wear a depends because I won’t make it to the bathroom the spasms are that bad. Or was it just frequency and butt burn?

@Jfill21 posted:

Hey JacobW I feel like I’m reading something I would have written —very similar sounding symptoms and experience. What I learned over the seven years after my takedown is that the worst thing a j-poucher can do is push like you used to when you had a rectum. I learned the hard way. Between my 2nd and takedown surgeries—wwhen I had the loop ileo—I had a lot of mucus leakage. I’d step off a curve and would feel the wetness without warning. So I clenched. And I clenched. When my manometry test result came back at 300 (3x normal) it was assumed that all my clenching had overdeveloped those sphincters so much that I had anal congestion. The anal congestion, I assume, was the reason I didn’t fully empty and that meant I could be back on the toilet in minutes. Frequency was always high, avg about 10X-12X  in 24 hours. Up usually 3-4 X every night. I think it was all my pushing. I did five months of pelvic floor therapy 2x a week with biofeedback. It did help and I learned how far I could gently push without over stretching the pelvic floor muscles. Biofeedback and a great therapist helped me find that safe zone.  When i would push too hard those muscles would work against each and sometimes the spasms fooled me into thinking it was okay to keep pushing.  For me the resulting pain could last days and at least one time I asked my PCP for oxy I was so bad. I also thought it was cuffitis and took mesalamine suppositories for months with little relief. Relief for me came after using what I learned in PF therapy. Don’t push, take warm sitz baths, eat a clean diet and stay hydrated.

That’s interesting, thanks. My issues aren’t leakage, it’s running to the bathroom to evacuate once the cramps hit! And especially after I eat that could be very often with little coming out forcing many trips until sleep and waking me up to run to the bathroom. Butt burn is horrible during this.

I had my first Pelvic Floor PT session and on exam I am tight and my endurance on clenching can be worked on, but wasn’t the worst the PT has seen or anything like that she said.

We talked about the right position to sit on the toilet for a J Pouch and breathing exercises but really my issue is more so incontinence when the spasms/frequency/urgency hit…like the moment something wants to leave my J Pouch, I get cramps and spasm to run and expel it. If I’m on the go, I won’t be able to hold it in.

Basically can’t be more than 20 feet from a bathroom. It’s not like, “oh I feel something coming let me go sit on the toilet and relax and see if something comes out.” It’s a full-on sprint for little to come out.

Always calms down when I wake up…feels like my body got rid of all food. My output by the morning is watery. It then starts up after I eat lunch and continues until the morning again.

Is it possible to have severe cuffitis or pouchitis this early after takedown (started 2 weeks post-op)? Has anyone experienced something this similar this early?

I added the Levsin but have slacked on the Uceris and will get back to that. Not sure if Levsin provides relief but will continue. Valium maybe helps with some muscle relaxation. Manometry test on 5/30 at Columbia Pres.

@JacobW posted:


We talked about the right position to sit on the toilet for a J Pouch and breathing exercises

Can you share this information?  I would be really interested in this.

I'm a big proponent of psyllium at each meal (soothes and regulates gut motility) but not sure if this would help your issue.  Also I have found that THC at night (for sleeping) really slows down the gut motility and might help with the spasms.  A mix of CBD and THC might help extra if you also have inflammation.  There are lots of sleep products out there.

Thanks for the documents!  I can't seem to download them.  Wonder what the issue is?

With the psyllium it's always an experiment, but I think it shouldn't cause blockage as long as you start with a small amount and take a lot of water with it.  I use 1 heaping teaspoon with 8oz water before meals.  I haven't tried Imodium with the j-pouch.  Lots of people on this forum have experience with it, though.

Last edited by Sara Marie

I have the exact same problems.  Except I don’t have any accidents.  But I am up every night and it’s so exhausting.  I have had to wait 4 months to get into physical therapy.  And I’m still waiting.  These Drs don’t get it.  They think everything should work right.  Well it doesn’t. And this pain in my rectum is unbearable.  I’d love to stop the urge of pushing but I can’t. And I do feel also that is why I now need physical therapy.  I have had both suppositories.  And nothing worked.  Well it was never going to work.  My new Surgeon who told me that my brain and rectum isn’t working together to allow me to go.  He wants me to now use a catheter instead of giving up my pouch.  But he isn’t sure how to do it.  He only has one patient that does it and it works. But he won’t let me talk to her on how she does it.  I just give.  I never thought my retirement years would be so hard to even function.  But from whatI read you all give me hope.  Fingers crossed.  Please keep us posted.  I feel so defeated.  

I spoke with the ostomy nurses over the phone at Columbia Presbyterian who walked me through how to use the medena catheter. I tried it maybe 4 or 5 times without much luck, though. There's an end with 2 holes and I was told to insert that end 3-4 inches and then irrigate with water. For me, just not much came out from the catheter. It's intimidating but if you do it once and it relieves any symptoms then the next time won't be nearly as bad.

I just started Pelvic Floor PT locally (Bethesda, MD) but everywhere I call biofeedback has a waitlist! It's very frustrating. Confirmed through failed manometry yesterday that it is pelvic floor. Pouch for the most part looked good...1 ulcer...mild cuffitis...starting Budesonide for that and miralax to loosen stool. 50% dose of Botox under anesthesia next Tuesday

Last edited by JacobW

I forgot to say I use Miralax also.  I just never no how much to take.  Dr said to play around with it.  I can’t get into my physical therapy until late August.  I have top Drs.  But they just keep pushing medicine, suppositories and then I started Valium and baclofen compound suppositories.  Oh my gosh wow did it burn.  It’s shocking how a tiny little thing could hurt so bad.  Thank you so much for the information on the catheter.  I truly appreciate it.  So right now I’m in the bathroom.  And every time starting in the evening I have the urge to push and the burning.  Very little comes out.  Earlier it’s liquid and that’s great.  But this burning and pain and urge is really unreal.  It will be this way thru the whole night.  I hope you and I and everyone else having this same pain and problem is able to get some relief.  Thank you  

I understand, I’m up every night every 30 min. Not sure if the Valium suppositories work for me but I keep taking them. Miralax seems to help me with the butt burn, and at this point I just hop in the tub after I go and that helps the burn.

I was told to do 2 fleet enemas Monday night before my Botox Tuesday. But after a lot of reading in the forum it seems like I should sub warm water to avoid more burning. I may try this weekend and let you know if it helps with my incomplete emptying.

I don’t use the enemas liquid inside.  I pour it down the drain.  I only use warm water.  And the day before I only take in liquids.  But this is when I have my pouchoscopy.  I now have lidocaine for my anal issues.  It helps but this pain is something else.  Life has to get better for you (and me. As well). Oh my gosh I wish I would have just went with the bag.  Let us know what you find out.  One other thing.  You could use part of the liquid from inside the enemas.  Dilute it.  But it does burn if you use the whole thing.  Good Luck.  

Thank you. Water enema worked. I’ll post my response on both my posts just in case. I’m really desperate and could use some advice on the current anal canal burning.

scope with Dr. Kiran yesterday. it showed a lot of cuff inflammation and that my anal canal was “a mess.” He said Botox 30% chance it helps me. He said there is a two-step procedure that could be done on the cuff (not sure what he’s referring to, anyone?), but that I should try biologics first (this is all second-hand—he spoke with my mom on the phone briefly post-op).

day-to-day, I need something to help me cope. I am desperate. Every BM is incomplete, requires straining (maybe from cuff inflammation) and burns my anal canal like crazy.

it’s like the stool sits by the cuff and if I don’t push it out then it’ll stay there. That’s the sensation. As if my anal canal is too tight or the internal sphincter muscles won’t open up. The creams don’t work because burn feels internal. I jump into a warm bath right after as it’s the only way to find any relief.

10 years ago with a large intestine I didn’t get any results from Remicade, methotrexate, Humira (developed antibodies) or stelara. Whole colon was severely inflamed at the time.

Bo Shen’s first recommendation was Remicade over email. I reminded him I tried that (even though it was a decade ago).

curious if anyone knows if I can go back to a biologic and it might work when it previously didn’t? Or try a new one? But really…I need help coping with the burning in my anal canal so bad. Docs recommend I add miralax, colace, citrucil which I will. I also start biofeedback tomorrow. I’m not sure if the cuff inflammation is the primary issue or if it’s the pelvic floor. I’m only 28, had to take disability from work, and am glued to the bathroom and bedroom. I’ll give this to the end of the year to resolve otherwise back to ostomy. Any advice is appreciated. Thank you.

UPDATE: Dr. Shen just called me—

manometry showed I have spasm and paradoxical defecation. He said I need to get through the weekend “to figure out which is the father and which is the son.” And email him how I did.

Meaning, his theory is pelvic floor dysfunction is the primary culprit causing the cuffitis, and if the Botox gives any relief then that confirms his theory and I need more Botox. If Botox doesn’t help at all, then cuffitis is the culprit and we go to Remicade. He said I can do Remicade again and that it can help immediately. He said B&O suppositories could help but there is a shortage.

Last edited by JacobW

Exactly what my surgeon told me I have.  I can’t relax and the brain isn’t working with the muscles down there.  And he is right there are times I have to go and I truly can’t get it out.  But I feel it’s because of my muscles also.  I don’t see where the medicine would work or suppositories would work either if you have a very tight muscles issues like I do.  I have tried it all.  Just waiting on physical therapy.  And to me it would make since that cuffitis would be a problem since we can’t relieve ourself.  And pushing to go only makes my muscles tighter, then more burning and very swollen down there.  The pain is unreal.  Only to find I have went maybe a tablespoon.  I have hope that the physical therapy will work.  This time I am doing vaginal and rectal.  Keep us posted please.  Also I have tried baclofen/valium suppositories only to find they burn like hell and got no relief.  The next thing I’m going to try is lidocaine in rectally for some relief.  

Last edited by grandmaof1

Hi...I've had a similar situation being unable to push the stool out and running to the bathroom constantly with small amounts...among other problems.  I discovered accidentally that sitting in a warm sitz bath helped me relax the muscles and allowed the stool to come out. It was messy...but helpful in the short term.

In my experience it will be hard to resolve this issue without addressing the cause of the dysfunction. In my case I was "clenching" all the time because my rear end was always on fire from the frequency, leakage, straining, skin damage etc.  Even lidocaine couldn't give me enough relief. Eventually a change in medication to a stronger bowel slower and starting Benefiber 3x a day, has made a world of difference by reducing my bathroom visits to 4-6 a day and allowing me to actually sleep through the night.

I hope you get your situation resolved. I know how painful it can be.

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