I haven’t had the procedure, but I expect that it may be difficult to get the dose exactly right, so you may end up with a partial solution or a bit too much. It would be reasonable to ask them what to expect. Hopefully it will be a significant improvement nonetheless. The effect is temporary, so whatever happens you’ll get back to baseline after a while.

I have the same exact problem as you.  My surgeon told me my brain isn’t working with my nerves and all that down there.  Suggested an end ilostomy.   But have to lose some weight first.  But if he doesn’t remove the rectum I’ll still have the urge to push since I can’t get it all out.  So now I’m going to try physical therapy vaginally and rectally.  I give.  I hate this pouch.  Oh and because of the pouch I have a liver disease that is not curable.  PSC.   I can’t get a break.  Please keep us posted.  I’d love to know how you feel.  

Thanks, Scott. Curious how long it lasts, if you know?

grandmaof1 -- I'm so sorry about all you've been through and are going through with the Pouch. I will definitely keep you posted! Dr. Shen emailed me last night saying a 50% Botox dose should be fine.

I'm only 6 weeks post-op...really wish they did this manometry test BEFORE takedown

@JacobW posted:

Thanks, Scott. Curious how long it lasts, if you know?

When Botox is used (in a similar way) for anal fissures it reportedly lasts 2-3 months.

Thank you.  Sadly everyone reacts differently to the jpouch.  I’m so grateful for this site.  Please keep me posted.  Thank you.  

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. 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.

If you can tolerate inserting a (lubricated!) catheter you might be able to give the anal canal a chance to heal by irrigating the pouch for a few weeks instead of straining on the toilet. Have you tried treating the cuff with mesalamine (e.g. Canasa suppositories)? That would be the usual treatment for cuffitis, though it sounds like you may have a couple of things going on. I’m assuming that you’ve tried warm sitz baths.

A biologic might help you. Restarting Remicade is sometimes problematic if your have developed antibodies to it, but the other biologics don’t have this issue.

I am having the same issues.  And my surgeon suggested a catheter also but if I’m backup then the stool is to hard to go thru.  I have been on Miralax and realized something last night. That it puts water into your colon (normal people).  Well it’s taking water from me else where and making me very dehydrated.  And this always happens right before bed.  So I’m not taking Miralax today but I’m going to try Laxative tablets (Bisacodyl).  I’m desperate.  My surgeon also told me I should always have liquid diarrhea.  Well I told him that’s not always true.  I’m desperate also.  I’m completely exhausted.  I wish I had known all about the pros and cons of this jpouch.  Because I would have never went with it.  I have had it since 2012 in a two step procedure.  Have had problems ever since.  No one gave me any information on it in 2012.  I had to have my colon removed I had pre-cancerous cells thru out the whole thing.  And now I have PSC of the liver from this.  I wish you could get some answers and can share with us.  So far I’m waiting for the first appt they had for physical therapy at the end of August.  I just want my life back.  I sure didn’t think my life would be like this everyday.  And like you I’m from the bathroom to the bed.  Please keep us posted.  

I’m sorry that you’re going through this. I had Botox for a fissure. It did nothing to help. My problem is twofold, though. I had my ileoanal anastomosis at Yale in 1987. I had the usual pouchitis, butt burn, bowel obstruction issues, but my pouch has held up beautifully. My problems, and what presumably led to the fissures, are: I have SIBO (sm intestinal bacterial overgrowth) which creates a LOT of gas. I also have R-CPD (retrograde cricopharyngeal dysfunction) which means basically that there’s a bar shaped muscle that’s in permanent spasm that doesn’t allow me to burp, and makes vomiting and eating and drinking difficult. I’m sure you can agree that once you have a pouch, you can’t trust a fart. Am I right? Our bathroom at work is right on the sales floor… so, because of the SIBO, I have constant bile salt diarrhea, and so much gas. Because  of the R-CPD, I can’t burp. I’m basically corked up at both ends. My anal sphincters are locked in a permanent spasm (which I recently learned could actually be caused by a byproduct of SIBO called d lactic acidosis - d lactic acid is a neurotoxin that causes blockages in messages from your brain telling your muscles to freaking relax already) I’ve had Botox in my sphincter with no luck, twice I’ve had large doses of Botox in my cricopharyngeal muscle with no luck. I don’t know if this is at all helpful to you, maybe I’m immune to Botox. I’ve also had it in my jaw and some neck muscles that are also locked up, repeated injections were useless. This whole SIBO thing is new to me, and I just learned about the d lactic acidosis being a possible cause.
Btw, seek a second opinion if they recommend a sphincterotomy, it could leave you permanently incontinent. Luckily I did seek a second opinion. Yale colorectal said I probably would have wound up permanently incontinent. I hope this info helps. Good luck!