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Hi... I am new here. Am only 9 days post ileostomy reversal. I need advice on how to "train" myself to not have to use the bathroom every time I stand up! 

I was diagnosed with UC in 10/2013. Disease progressed very quickly and I had colectomy 02/28/2016. J-pouch was formed 04/05/2016 and loop ileostomy reversed just over 2 wks later on 05/03/2016 because of extreme peristomal skin irritation. I am healing well surgically, but this needing to go every time I stand up from sitting or nocturnal incontinenece is truly bothersome. Just not sure how to train the pouch to stretch and be able to "hold it". I have other symptoms, but this is the most bothersome. 

Any ideas please???

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Pelvic floor exercises? Planks? Bridges? Those are all of the exercises that I did regularly pre-pouch (37yrs ago) due to incontinence.

Like I said, it was pre-pouch...

If it is just urgency then your brain will slowly do the work for you and you will be able to train it out of the knee-jerk reflex but if it is physical incontinence you need both your brain and your body to cooperate with eachother and that can be both exercise and maybe biofeedback.

Can you 'talk yourself through it'...Sort of tell yourself...'I am now in the sitting position, I am going to stand up...first I am going to tighten those muscles, then slowly stand up...' It can send a message to your brain/body connection and help both to react correctly.

If not maybe a PT could help you.

Sharon

ps. Having a k pouch I know nothing about stool thickeners or other bowel slowers...I need the opposite gut reaction...j pouchers can help you with that.

"It could be worse...oh, wait..it already has been! then I guess it can only get better from here..."

That quote is very helpful to my current mental state!

Thank you for the replies, ladies.  I've been doing the Kegel exercises for years, since my babies. Planks and bridges I'm not familiar with. 

I suppose I will try the "talking myself through it" bit. Mostly when I get up, I'm just saying "Hold it! Hold it! Hold it!" Haha. Sometimes it works - sometimes it doesn't! And that is while I've been home and the bathroom is right around the corner. Tonight my son graduates high school, so I'm hoping it will be a working night!

I'm sad that there are others in the world that have gone through and are currently going through the same as I am, but it is comforting to know there is a place to go for support and advice! Thanks again!

Hi Scott...

I am using Lomotil with meals and at bedtime.

Had to go off my morning coffee... That was hard to take, but I couldn't bear the burning diarrhea 30" after drinking it! I'm trying out different decaf teas, but so far, haven't found one I can really latch on to. We are such creatures of habit...

I'm bored with my toast with PB and turkey sandwiches. But until I get the going under control, I'm not going to do much changing in the food department. I'm a little concerned about caloric and protein intake, but not going to get too worried until I see my surgeon on the 19th. I'll ask about Metamucil then. 

Thanks for the reply!

Hi. I am waiting for my ileostomy reversal in about 5-7 weeks. But I am having the same issue when I stand up. It can be 5 minutes after using the toilet or emptying my bag. It doesn't matter how long I've been sitting, I get a discharge everytime I stand. I try to "hold it" and get to the restroom but so far only once has that worked. Surgeon says it's " overflow" and has set me for a flex sig on 24th to check how it's doing. My question is after takedown do I need to be prepared for same thing? I've been using feminine pads but skin gets chaffed and raw. So I just keep changing clothes 4-6 times a day. Any advice while I wait for flex sig? 

I had some discharge from my rectum between stages 2 & 3, but certainly not to that extent. Has the amount of output in your bag changed?

It might be a good idea to get acquainted with Dr. Boudreaux's butt paste for the chafing. And careful what you wash off with. I thought baby wipes were a good idea. Turns out plain warm to cool water is much better!

Hang in there!

Woo hoo!!! Got through 3 hours of sitting in hard stadium seating for my son's graduation without having to excuse myself once!!!!!!!!!

I'm tellin ya, that's progress! The lomotil, Kegels, talkin to myself, it all worked! I'm feelin so up I'm gonna try Scott's peanut butter advice from another thread!

Perhaps I've turned a corner! I'm praying so!

Sorry for late reply. I'm in the UK and had pouch surgery 14 years ago. I was advised to train my pouch by "holding on" for as long as possible when I felt the urge to poop. I began this on the first day my bowel woke up after surgery. I'm sure you remember it feels like you need to go continuously! I found getting out of bed and sitting on a fairly hard chair helped. I'd start off waiting 5 minutes, gradually increasing the time until I could wait 30 mins by time I was discharged a few days later. Maybe it helped that in my NHS hospital I was in a four bed room so had to wait my turn to use the 1 restroom while the other ladies used the loo, showered etc! Now all these years later I can often go a full working 8 hour day plus commuting without using the "loo". It doesn't happen overnight and you will have setbacks, just don't be hard on yourself. Good luck x

Its been a while for me since my operation , but I have no Colon , I have a J Pouch and can't hold it that long . When I get up at the Restaurant I have to go usually. I can't hold it that long, my wife has to watch the ladies room for me , it's terrible . Help 

           Help Please 

 I take shots to try to help , it delays it a little. I can't lift things without having to go. I have an urge to go and my wife says I walk hunch back because it feels like it's right there sll the time. No sweets. I stay home most of the time . Life is no fun.

 

 

 

Hello, crevere36. If your j pouch is a few months old, try not to lift anything heavy. You could give yourself a hernia as well causing a bit of leakage. I was told not to lift anything weighing more than 10 pounds after surgery. I also walked hunched over for almost three months, but it was from the pain and tightness of my incision on my stomach. I had complications and had to be cut open again in the abdomen for reversal. In my first few months, I could not bend over to pick up something without experiencing leakage. It didn't matter what I was doing, leakage would happen. Walking, standing up, etc. I was able to hold stool, but leaks just happen and you worry that this is for life. It takes time for your sphincter muscle to learn a new job and to hold on. Remember, that whole area has gone through the trauma of a major surgery, had its colon and rectum removed, and now has a new small intestine in a funny shape to get used to. Wear panty liners or pads if you have to in order to feel more secure. Who will know?

Do you try Metamucil to thicken the stool? Thickened stool is easier to "hold on to" than loose liquid. Mashed potatoes help thicken. Try not to be frustrated or stress too much. Don't feel bad. You are not alone. Don't stop doing things you enjoy. Try not to stay home where you have time to think only about that. Try to time your outings based on when you've last eaten and was able to empty your j pouch. Please don't be discouraged. You don't say how long you've had your j pouch. It will get better. You are already cutting back on sweets, which can cause pouch problems. Good for you! As long as you have more good days than bad ones, you are getting better. So what if you need the bathroom at the restaurant. Everyone does, for different reasons and no one knows your reason. Just know where public bathrooms are and use them. Take control of what you eat, your daily schedule, outings, emptying. Walking for 20 minutes (10 minutes out, 10 minutes to get back home) is a way to train your pouch knowing you will be home in a few minutes. Whatever you were able to do today, let that be enough. Tomorrow maybe you'll do more, and one more thing will be a bit better. Best wishes to you.

Thickening the stool can help (inmodium and Metamucil (I like to take several capsules before each meal).

time & patience and talking yourself through holding it

i did a gazillion kegels and then also did biofeedback training-I found that to be beneficial.

MANY years later I discovered a bidet attachment for my toilet seat. It was life changing to eliminate the burning, chaffed skin-can't recommend it enough!

good luck! Congrats on making it thru graduation!

I'm 12 years with pouch and very happy with it.  Jan likely had the best advice (as well as a couple of others)...  Time and patience is key.  It's amazing to see how your body adapts to its new "plumbing" but it takes time and patience.  Things that worked for me were metamucil.  1 or 2 tsp in 1 or 2 ounces of water... alternatively, plain yogurt mixed with metamucil.  I used to take 2 - 3 immodiums a day but got off of that about 2 years ago.  I find metamucil is a better option for me ... but everyone is a little different.  Over time you'll find what works best for you!  

Metamucil thickens and bulks up the stool. Loperamide slows the gut. Some people will find that either will get them a comfortable result, but many will get a better result if they think about how these work. I take a bowel slower at bedtime, for example, when I mostly want to slow things down for a good night's sleep. 

Scott F posted:

Metamucil thickens and bulks up the stool. Loperamide slows the gut. Some people will find that either will get them a comfortable result, but many will get a better result if they think about how these work. I take a bowel slower at bedtime, for example, when I mostly want to slow things down for a good night's sleep. 

Thanks for the explanation Scott. 

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