Hi Philly,

congratulations on your takedown.

the number one thing everyone is going to tell you is: “give it time”.

This is something no one wants to hear, especially while we are suffering. I wore adult diapers or a pad for about 6 months, and it took my pelvic floor 6-9 months to recover. By the time I cleared the wait list for PT, my incontinence/leakage issues faded away.

I take Imodium 3x daily, breakfast, dinner and bedtime. I also shifted any medications like flomax to the daytime as I don’t to relax anything in the pelvic floor while I am sleeping.

Your ability to control BMs will continue to improve over time. Try not to think of daily improvements, but month to month, as you will see continued progress.

as long as you don’t have any mechanical issues with the pouch, you will get better, and this nightmare you’re in will eventually end.

I and many others have experienced very tough/similar situations in the early days.  

Hang in there!

Thank you so much for such a thoughtful reply New577! I’m sitting here pretty down today because it’s been such a struggle since takedown. Like I said, I expected challenges but was not privy to the unawareness and it really has me scared. Your kind words and advice give me lots of hope.

I’ve been reading all kinds of things about possible nerve damage, sphincter damage, etc. Sometimes I can feel it, which gives me some hope that it’s not a complete pouch failure issue. However it also seems like the stool just moves right through me. Like I haven’t had that “I need to empty a full pouch” feeling yet. The best I’ll get is some pressure as a warning, and then nothing at other times as stated in the OP.

It is still early days, but I know how discouraging these episodes are. Have the antibiotics had any effect at all? Have you tinkered with any fiber other than Fibercon (e.g. Metamucil powder)? Have you been doing kegels? I don’t think formed stools are a particularly worthwhile goal, but continence sure is.

There is this:

https://columbiasurgery.org/ne...-2aec81c39d-79270894

Thanks Scott,

I do think the antibiotics are helping, I don’t have has much lower back or pelvic pressure. My surgeon keeps saying the thicker the stool, the more I will feel it and can control it. Like you said, my goal isn’t think stool, just simply continence.  Since restarting the antibiotics, it does seem like watery stools have gotten much better but the incontinence is still prevalent. I  have tried Metamucil before but haven’t post takedown. I will start experimenting again. I have not been doing too many kegels to be honest, my doctor said he didn’t think I’d need them but obviously things aren’t going great. I can start making them part of my daily routine. I plan on asking the therapist about them and other at home strengthening exercises next week at my first pelvic floor therapy.

I know it’s still pretty early but as time progresses do I gain more control and awareness? Do y’all have any kegel routine suggestions that worked? Can damaged nerves heal? Am I freaking out a little too early?

The lack of sensation just really freaks me out and makes me wonder if there’s been damage done or if my pouch is malfunctioning. Which is terrifying bc as so many of us have experienced, it’s been such a fight to get to this point. My entire life has been altered for 2 years, I just want to have this hellish hamster wheel begin to end and to see the benefit of going through all of this.

And thank you for the informative link Sarah! I have looked into sacral nerve stimulation a bit and will definitely bring it up in my virtual with my surgeon tomorrow!

I am very grateful for all of your replies; it’s nice not feeling so alone

Hi Philly - you are going through hell.  I feel for you.  I really think you are going to get better soon.  As a disclaimer, I don’t want to give medical advice that could be wrong, but I know how you feel.  Lost and somewhat exasperated by all of this.  Here is my view - the PT can be IMMENSELY helpful.  It was for me.  With no bad side effects.  Your pelvic floor went through a lot.  I think “training” your pelvic floor could help a lot.  Try to get to PT several times a week.  Also - try not to think about the long term here - just get through the month of June and July.  This stuff does take time.  Whenever I personally think about the long term with my illness it can get overwhelming.  Screw that - just make it to PT for a month and see how you feel then.  As far as nerve damage- I don’t know - but the surgeon would have a good read.  I also think it’s is a good sign that you had feeling following the surgery- I don’t know why the nerves would spontaneously get injured after the fact.  Bulking agents and Imodium to thicken stool can help, but it sounds like what you need is time.  Has the surgeon given any indication that he can test the nerves?.  Also - kegels can help. No to be gross - but squeeze your anus like you are holding something “in” for ten seconds and release- I did that fro 20 minutes a day x 2 per day.  It helped me.  The PT will give you advice on that. Best of luck man.

I have found that if I just do kegels and the usual squeezing of the anus in response to the threat of incontinence, I get too strong there and that tends to cause a hemorrhoid flare-up.  The strength must be more well distributed for better effect. 

You might pick and choose based on how your groin and abdomen area feel and start gently.  There are lots of pelvic floor exercise suggestions on the internet.  I have enjoyed these lately and found them beneficial:

https://www.womenshealthmag.co...TMdDTEhoCxgsQAvD_BwE

Thanks Doug!

I really appreciate the advice and offering of some hope. I’m going to speak with my surgeon tomorrow about the possibility of nerve damage and what can be done.

Thanks for being so understanding, I hate to complain bc I know all of us have had our share of very tough times. However, it’s awesome knowing y’all know exactly what I’m going through.

I’m considering canceling traveling to be the best man at my friends wedding in three weeks if I can’t get this under control a little better by then. It’s unfortunate but if the PT (for pelvic floor) tells me they can get me in multiple times a week it might be best to just stay put and keep on the therapy w/o a pause. I don’t know how I’d travel or enjoy a wedding in this current condition anyway :/ So much of my life, esp. socially, has been disrupted bc of all this but I’m keeping my head up that there will be better days ahead eventually.

I’m gonna start the kegels tonight, thanks for giving some advice on that as well

Thanks Sarah!

Another awesome link and some really insightful advice on the kegels. I totally understand what you’re saying about going too intense with the kegels and potentially causing adverse affects. I’ll definitely start slow and pay close attention to how my body is reacting. The exercises in this link are awesome; I’m going to try them and share with my PT next week!

Hi,

congrats on takedown.

The first months are really rough, way harder than you expect (at least for me).

A lot of good advice is already given, however this is the package that helpen me a lot;

- Imodium (I use 4-6 per day)

- psyllium fibers, I take a sacket 3 x per day before the meal

- fysio, learn what kegels are

- walk, in the beginning 1000 steps a day maybe. Try to build it up. More often small walks of 1500 steps. It really helps establishing control. I am was at your place and do 9000+ steps per day in 2-3 rounds since a couple of weeks.

Keep faith, it’s the direction which matters, not the current status

Thanks JanWillem!

Very helpful info

I will definitely look into the psyllium fibers options. I have some Metamucil gummies that I’m going to start introducing and experiment with what works. Also great suggestion with walking. Because I’ve been having accidents I’ve been laying off walking as much but I’m going to focus on it more and try to continue to be patient with the process.

Thanks for offering some hope that you’ve been here before and it’s gotten better. I was really worried that this was a big red flag that something’s terribly wrong. All of these responses have helped me stay positive and I don’t feel nearly as terrified.

update: I spoke with my surgeon today. He’s under the impression that all of this is pretty normal. He thinks the pelvic floor therapy will help and doesn’t believe that I have nerve damage. He thinks that it is some pouch malfunction but that in time it’ll improve.

He also suggested “training” the pouch with an enema. Apparently this helps with emptying the pouch fully and with being able to learn/understand what a full pouch feels like.

Has anyone used this technique before in the beginning stages and did it help?

Thanks again everyone  

My surgeon recommended warm tap water enemas early on for other reasons. They helped empty me out when I took too much Imodium and it constipated me.

So I would say it’s something that cannot hurt you and worth trying.

The easiest way to do a warm tap water enema is to buy a brand-name Fleet enema, empty out the irritating solution, and replace it with warm tap water. I've only done this as a prep for pouchoscopy, but as New577 wrote it won't do any harm with moderate use.

Much appreciated New577 and Scott F  

Everyone really came through with these replies and suggestions. I’m elated to be part of this community and look forward to offering my experiences and advice to new pouchers like myself

I just got the enema supplies, so we’ll see how it goes lol. I’m willing to do anything that will help! Thanks again y’all!