It might be worth trying an antispasmodic like Bentyl or Levsin. Spasmodic symptoms like this seem to be temporary for most folks who’ve reported them here, but quite disabling while they are going on. The meds do have some side effects, but may turn out to be worth it.

@Scott F posted:

It might be worth trying an antispasmodic like Bentyl or Levsin. Spasmodic symptoms like this seem to be temporary for most folks who’ve reported them here, but quite disabling while they are going on. The meds do have some side effects, but may turn out to be worth it.

Thanks, I'll email Dr. Shen/Kiran's NPs about Bentyl!

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.

Thank you all for the feedback! I'll call early to ask Shen's team to prescribe Bentyl/Levsin today...and that experience with Pelvic PT is helpful as well -- I'm sure I'll be doing that in the future. It's encouraging that there is light at the end of the tunnel from your experiences. Thank you

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.

Nighttime incontinence mostly but enough daytime leakage that I was always wearing a pad or Depends. I never had to run to the bathroom though.

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.

Sure, added below. I’m taking a lot of THC to try to help with anxiety and pain relief related to this 😂

I’ve been off and on Imodium and Psyllium Husk during this time. Not sure if it helps, which one to use, or how often to be honest. Any risk of blockage? I had 2 or 3 in my 10 years with a loop ileostomy

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.

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

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.

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.  

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.

Wanted to provide an update and ask a few questions:

It's been 2 weeks since Botox and no change. Still small, urgent, gas, frequent trips to the bathroom, straining and difficulty emptying. Getting ready to start Remicade with a scope scheduled for July 18.

Can cuffitis cause issues with emptying? My concern is starting Remicade before a scope. Is it possible something like floppy pouch could cause this inflammation? Or would I likely not get floppy pouch so soon after surgery? (4/15/24).

Dr. Shen is hoping the Remicade will treat the inflammation which I guess will help me empty?

Hi,

just posting to follow because I had my takedown with Dr. Remzi 9 days ago and I have all the symptoms you’ve described. I had a stricture at that time but that was dilated. Despite the dilation, I can barely empty, feel a ton of pressure down there, and spasms that send me running to the toilet. I can’t pass anything unless I run to the toilet with spasms. Basically everything you have described but no medical work up so far. Please let me know what works for you! I’ll reach out to the doctor on Monday but I was told previously he’s on vacation until July 11.

Hey I know this is a couple of months old now, but did you ever figure this out? I am 2.5 years from Takedown and suddenly having these problems for the last month. I haven’t been able to get into my doctor but I am seeing them later this week finally. I just can’t take this pain anymore!

So sorry to hear that and thanks for bringing this thread back to my attention. Here are my updates:

Had a local scope on July 18 with Dr. Erica Cohen in Chevy Chase, MD where she thought it might be floppy J pouch and she said to see Shen. She didn't recommend biologics and she saw a benign polyp at a narrowing. She spoke with Shen at Digestive Disease Week about my case.

Just came back from 10 sessions of biofeedback at Columbia Presbyterian. It did nothing, I failed the manometry at the end. HOWEVER...the MRI Defecography showed my bladder compressing my J Pouch when I poop and the J Pouch is tethered a bit to the sacral wall. I can definitely feel this...which is why even before the reconnect I would pee sitting down because my bladder pushes against my J Pouch so...leakage!

Dr. Shen scoped me Fri, 8/23--he planned to fix floppy J Pouch with his banding procedure...but he didn't see a floppy J Pouch, he said. He saw inflammation in the J Pouch and small bowel. He also saw a septum near the top. He removed the benign polyp and dilated a stricture near the top of the J Pouch -- he felt the removal of the polyp and the dilation would help my ability to empty. It has, but it's crazy to me how on 7/18 there was only 1 small ulcer and no stricture.

The plan: Shen wants me on oral Vancomycin 250mg 4x daily and then start Entyvio. He said after we calm down the inflammation we can then discuss repositioning the J Pouch so the bladder is not compressing it.

I don't have a lot of body fat and Shen said he has seen the bladder/J Pouch issue in overweight people (a lot of visceral fat) and thin people (very little/no visceral fat).

Hope this helps!

Thank you for the update! So with the inflammation in the small bowel is he thinking crohns? Is that why biologics? I’ve always wondered if this might be the case with me. I’m seeing my doctor at Cleveland clinic on Friday so I guess I’ll see what they want to do next. I had a clean scope 6 months ago but this has been going on more recently. I’ve always had chronic cuffitis but it had been under control for a while now so now I just don’t know if it’s flared up, if it’s pouchitis (which I’ve never had before so don’t know what it would feel like), crohns, or something I’m not even considering like floppy pouch. Wish I could see shen be he doesn’t take my insurance unfortunately.

I learned recently that I don't have a rectal cuff. Maybe I should be thankful.