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Hey

Although I have visited this site many times through out my time of illness and surgeries this is my first post here.

It's late at night and my j pouch is kicking my ass. I've had it for one week now and my main problem is that I'm going to the bathroom urgently all the time. Don't ask how many times, I didn't want to count because the mere number might scare me to death.

My first visit to the bathroom after my surgery went terrific. It was after a reasonable amount of time after my first meal (which was a proper meal). There was no pain, little to no blood, no trouble passing it. It was just a glorious moment, a unexpected yet very welcomed moment.

Soon after that however the toilet paper stirred up hell and my anus got swollen, it was itching. The hospital personnel helped me figure our which ointments to use so that was solved. Then I had a painful problem with gas and inconsistent consistency. I figured that out how to deal with that too.

Today I've been home for two days from the hospital. Those days have gone as follows:

I wake up and go to the bathroom like any normal person, eat breakfast, hang around, eat lunch and hang around some more. The further the day has progressed the more often I go to the bathroom (as I get more food in me). However, eventually it gets to the point where I can only relax lying down. When I stand, walk or sit I pretty much have to go all the time. And Here's the kicker: I have really good stool, not too hard not too soft, and I'm not using any medication like Imodium or fibre.

If there's anyone out there who had the same experience after the takedown PLEASE tell me that it's going to be OK! I figure I will call my doctor tomorrow and ask him why he thinks this is but I'm afraid that he's just going to answer it with the true fact "it's different for everyone".

I think I've said enough for this to be too long for anyone to wanna bother reading it. It's time to go the bathroom anyway. But if someone can say something encouraging I would be very happy!

Lots of Love
Fredrik

Replies sorted oldest to newest

M mom2pandaMember
Fredrik,

YES, it will be okay. The first few months with the pouch are very difficult. I was told to try to hold it as long as possible in order to stretch the pouch so that it will eventually hold more.

Try not to give in to every urge. When the pouch is first made, it only holds about 50ml. As it matures, it will eventually hold around 500ml.

If it keeps up then you can call your Dr and ask about lomotil to help slow things down a bit.

You are in very, very early days. It won't get better right away, but with time, it will get better.
M
Scott FScott FMember
Fredrik, I see from your profile that you're less than a week post-op. This is very new! I had success with gradually holding my output longer, allowing the pouch to mature. You might get some relief from Lomotil or Imodium, especially at night when you're trying to sleep. This will take patience, effort, and time, but you should see gradual improvement over the coming weeks (and months).
Scott F
P PluotMember
Hang in there! One week is nothing.

I would recommend trying to keep a tally of your BMs each day though -- your doctor will definitely ask and it will help you keep track of your progress and identify things that improve your symptoms or make them worse as time goes on. I kept a "diary" for about two months post-takedown and it was really helpful.
P
F FredrikMember
Hey guys! Thanks for you enlightening answers.

Mom2panda. Wow really?! 50 ml to 500 eventually? That's amazing. Can't wait for that to be Smiler

So day 7. Things are of course turbulent. Today I went to a nearby clinic to get my wound re-bandaged. It's a five minute walk and I was honestly nervous about it. Went to the bathroom before leaving my apartment and the I took off. While walking I had a strange sensation, it was as if walking actually helped contain the stool in me. Anyone felt that?

I think I will try to be more active now to see how it affects me.
F
clz81clz81Member
One week post op...sounds like you are doing pretty good to me. Many of us were still in the hospital at this point. Walking is good for you, but don't overdo it. You are only a week out of surgery. You can really fatigue yourself by pushing your body too hard. I had the opposite problem when walking at first...I would leave the house feeling fine, but after 10 mins or so, I'd have a horrible urge to go that I didn't think I could hold. It would pass after 10 seconds or so. This happened for the first couple weeks, then went away. Keep us posted if things don't get better, but sounds like you are on the right track!
clz81
F FredrikMember
As I said earlier today started kind of bad. I had to rush urgently to the bathroom as soon as I stood up or took a few steps.

However! From noon and further throughout the day things were really calm! I can't almost believe it. Even had two cups of coffee! I'm going to bed now and the grand total of toilet visits today was 10 and the last was like one or two hours ago. I will probably do another one for safety now before I go to sleep.

Anyway, I see that there are probably going to be ups and downs for a while but I find lots of comfort in the fact that not all days will be as what I described in my original post.

Clz81, I recognise that sudden urgency. Yesterday it would not have been possible to wait for 10 seconds to see if it goes away but today I've been able to fight it successfully many times Smiler

Right now I'm really happy, I gotta keep this momentum Big Grin

Lots of love
Fredrik
F
AB Alison bMember
I've had my pouch now for three months. It definitely gets better.I too tried holding it a bit to try and build those muscles
I also find walking very helpful ( but slowly)
I had mine lapriscopically and I guess the little scars tricked me and I over did it.
You have had an organ removed and another one messed with so really the drs tell me it's a year before I'm fully healed
I would definitely look into taking some kind of Imodium with meals. I see a major difference

However if it continues, don't be afraid to speak up too.
Three weeks after I got home I finally broke down and went to the ER. Turns out
I had picked up some kind of bacteria and it was really messing with me. My immune system was down so I was fertile ground.

Hang in there!!
I'm in my three months and I feel better then I have in twenty years.
And I get to eat fruit and vegetables again!
Woohoo!!
AB
ElmerFuddElmerFuddMember
Fredrik,

Glad you are here, and yes, it does sound all too familiar (and normal). Post takedown your gut is healing from surgery, your gut bacteria are all ut of balance, lots of gas, and the more you go the more irritated your anus and bottom. This may go on for a while, getting better gradually all as you go with ups and downs.

As for the whole poch stretching and "maturing" thing - my docs said nothing about it. And while things are healing, do whatever you need to (go if you have to go). You will hopefully have a lifetime to stretch your pouch and the need to go a lot has less to do with stretching than the other issues (gas, healing, bacterial balance).

Hang in there. It will get better.

Steve
ElmerFudd
F FredrikMember
Hey everyone!

I want to thank you all for reading my story and sharing your own experiences and tips. I am very sorry for not getting back to you sooner.

Perhaps it's a good thing though. The last couple of days when I wasn't here talking to you guys I have been doing quite well.

Day 8, I was in constant discomfort and it really broke me. It wasn't really pain. It was just constant discomfort and that can maybe be worse in a sense because it's not really treatable like pain. That day I cried my heart out, I cursed the decision to go through with this and I missed my cooperative stoma which never caused me any trouble. I was totally broken down to pieces mentally.

But now I'm rebuilding. The discomfort is gone mostly. I'm starting to understand how my intestines work in terms of what I eat and do and what's happening to me after the surgery. My parents visited me this weekend and that distracted me from thinking about these things.

Another thing I want to brag about is that last night (day 11) I slept for 5 hours before having to go to the bathroom! As I'm writing this I realise a "normal" person would probably be flabbergasted about this but I'm sure you guys know exactly why this is something to brag about Wink

Alison B - where was your laparoscopic surgery done? Are you talking about the pouch creation?
F
F FredrikMember
ElmerFudd, or Steve, my doctors didn't explain these things to me either properly. I understand exactly what you mean when you say that stretching is only one among multiple factors (gas, healing, bacteria).

Say gas for instance, I do find it somewhat problematic. It's not that I've been particularly gassy after the operation but it causes other problems. The first one is that it can be quite painful as the gas goes down through my intestines . The second problem is that it can in a sense force a bathroom visit - gas pushes from the inside and wants out but cannot be let out "normally" as it pulls out some stool on its' way.

Will these things get better or do you guys still find gas problematic?
F
Scott FScott FMember
Most of us will never risk a fart off the toilet again, at least not on purpose. A few folks here seem to manage it, and I envy them. OTOH they often describe astonishing postures to accomplish this, so perhaps it's NSFW anyway. That means that the best way to minimize the nuisance of this is to minimize the gas production. You'll have to experiment, and re-experiment as your body changes over the coming months. Several big factors include diet, air swallowing, and soda consumption. People who need to manage this use Beano (alpha-galactosidase), digestive enzymes, probiotic bacteria (e.g. VSL #3), and sometimes antibiotics. I suspect that most J-pouchers do nothing special about gas, and don't worry about it once they're fully recovered. They're not posting here, though.
Scott F

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