Skip to main content

I'm having a rough time with takedown. It has only been 11 days but I'm getting to my breaking point. I'm sorry if I'm complaining here... I've already gone through this once before but I think I have selective memory and can't seem to remember when it gets better.

I'm having pretty severe sphincter pain. It just feels like things are so tight all the time (although I'm stricture free as of right now). Been battling a fissure which seems much better but it's just like a constant dull ache in my rectum. I'm also getting pretty intense waves of pain whenever stool or gas moves down into the pouch. It takes my breath away and the only thing I have to compare to are labor contractions. And coming from someone who has had drug-free child birth, I would birth a baby any day over go through this.

Any words of encouragement? Does this actually sound normal for the stage I am at. Thank you all.
Original Post

Replies sorted oldest to newest

Have you had your follow up visit yet with your surgeon? You shouldn't be having that severe pain. If you are comparing it to labor contractions, that's pretty bad. The spasms are normal right after takedown but they shouldn't be bringing you to your knees. Call your surgeon to get checked out. Sorry you are having a rough time.
It's been a very long time for me, but I do recall having the "butt puckering" experiences that seemed to throb for no reason at all. I eventually learned it was associated with the pouch filling. Over time, that sensation resolved and was just replaced with sensations of fullness and pressure.

However, having a fissure in addition to a newly functional pouch, is sort of like gasoline on a fire I think. Severe spasms of the sphincters are pretty much the hallmark, along with the "passing broken glass" pain during a BM. Even if it is healing, that spasming throb thing still occurs.

Have you spoken to your surgeon about this? It seems that you need some topical anesthetic at the very least, and maybe some powerful antispasmodic. Oral would be OK for the antispasmodic. B&O suppositories would be great, if you could tolerate inserting them. They are belladonna and opium and great for rectal or bladder spasms/pain.

Jan Smiler
My surgeon sees patients on Wednesdays so I'm going to call tomorrow and have them squeeze me in.

Jan - thank you very much for the suggestions. It is also reassuring to hear that there are more reasons behind all of this than just takedown. I am going to ask for all of those meds. I need some serious relief right now!

Thank you so much.
My daughter has had those spasming pains. The dr gave her a prescription for diltazem and the pharmacist compounded it into a ointment.

H&C Chemist on 1st Ave (cross St maybe around 70th??) in Manhattan did it, I waited for it. 212-535-1700.

I don't know if you can use that medicine, but it helped my daughter. She had a fissure just after surgery also.

Best wishes
When I had a fizzure, they gave me this compounded ointment that was supposed to numb things. I swear I might as well have put vaseline on. If there is a next time I'll ask for the belladona, opium suppository. I did also use hydrocodone, but I couldn't drive on that so was it was of limited use. It did help the pain a lot when I was able to take it.

One other thing that helped me was Questran. The acid stools were hindering healing and hurting like heck. The Questran binds the acid and really let me heal a lot faster.

Hope things get better soon.
I called my surgeon today and started on Neurontin which is an antispasmotic. I only took one dose so far and already have had a lot of improvement - it has seriously given me a little sanity back. Wow, can not believe how those spasms were knocking me out. I'm also doing the diltiazem for the fissure so hopefully I can actually start the healing process now. Would love to add in some Belladona suppositories. Thank you all for your help!
Wow, I am surprised. Neurontin (gabapentin) is not really an antispasmodic, but an anticonvuslant (as in: anti-seizure). I haven't seen it used in this application before, but it is used for nerve pain, so it could be that your traumatized nerves were causing the spasms. So, less likely the pain was from the fissure.

Glad it is giving you some relief!

Jan Smiler
Ooh hopefully that will not be the case with me. I saw my GI today who actually recommended a very low dose old school anti-depressant with the hopes to slow output down for me. I forgot the name. Jan, have you heard of this? I have to go back to work tomorrow and am terrified. I guess maybe this is bringing out some bigger guns than Immodium?

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×