HealingWell
Search Close Search
☰

Going out with a J-pouch

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/30/2023 2:22 AM (GMT 0)
Hello everyone,

So I had my j-pouch surgery in 2016. The Doctor said I would go to the bathroom 4-6 times a day. For that reason, 90% of the time I stay at home. Now when the Doctor office called my house a few weeks ago, & said it was time for my annual scope (Sept 1st at 5:30am central), it got me anxious. Now today, I decided that I was going to be more outgoing. & get things done, like going back to College, going back to Martial Arts etc. I'm just nervous of having to run to the bathroom. Sorry I have confused you, my mental illness (anxiety, depression & paranoid schizophrenia) is all over the place. My question is, has anyone ever had the surgery & is more outgoing? Thanks
Posted 8/30/2023 3:46 AM (GMT 0)
ToughKicker,

I have friends in my support groups with jpouches.

They started out with very short visits to places. They packed an emergency bag with wipes, clean clothes and some of them had an adult diaper in there for just in case. (very very few ever used the diaper. And to get one they called Depends to ask for samples... For free).

It seemed better for them when they scheduled and planned their trips to places that had a restroom that they knew where it was located and if they scheduled it for when the place was not as busy and for when they usually didn't have to go to the bathroom. Some of them experimented with eating foods that had a slow transit time the day before their planned outing.

It takes baby steps. Do you have someone that can go with you the first few times?

Clo
Posted 8/30/2023 10:41 PM (GMT 0)
I've had my pouch since 2018 and no issue with bathroom at all. The less I eat the less I go.2-3-4x a day is the norm.I can hold it in with NP. I had the surgery so UC didn't hold me hostage anymore and it has worked. No anxiety, No anxiousness. Life is good
Posted 8/31/2023 1:35 AM (GMT 0)
Are you having problems with the j-pouch that make you hesitate to go anywhere? How often do you need to go and do you have control without urgency? Most people I see here say that the surgery gave them their lives back, but there are some who have had problems and there has been at least one who opted to go back to an ostomy. 7 years is a long time to be virtually house bound if you don't really want to be. It's good that you are making plans to get back to the things you want to do. Have fun!!!
Posted 8/31/2023 2:13 AM (GMT 0)

3timechamp said...
I've had my pouch since 2018 and no issue with bathroom at all. The less I eat the less I go.2-3-4x a day is the norm.I can hold it in with NP. I had the surgery so UC didn't hold me hostage anymore and it has worked. No anxiety, No anxiousness. Life is good

He makes a really good point here, the more that you control your eating schedule and types of input then the more that you will control your output.

I sleep throughout the night, and I eat and drink whatever I want but I do it around certain timing that works for me and my pouch. I go about 3-5 times a day.
Posted 8/31/2023 2:41 AM (GMT 0)

ToughKicker said...
Hello everyone,
I'm just nervous of having to run to the bathroom. Sorry I have confused you, my mental illness (anxiety, depression & paranoid schizophrenia) is all over the place. My question is, has anyone ever had the surgery & is more outgoing? Thanks

Do you have urgency like needing to go right away or do you just have frequency were you can wait but need to go more often?

Are any of your non-IBD meds a stimulant or could cause you to go more often?
Posted 9/1/2023 2:42 PM (GMT 0)
Check out the We Can't Wait app for a little peace of mind (https://www.crohnscolitisfoundation.org/wecantwait). And, in some states in the US you have a legal right to some use public restrooms (https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate/restroom-access).
Posted 9/4/2023 4:01 PM (GMT 0)
Hello, I wanted to wait & have my procedure to respond back:

clo2014,

I do go to this place with people who has mental illness & 80% of the time I don't have to go to the bathroom, until I get back to the house. I usually at that place for 3 hrs. instead of the usual 6 hrs. I went to church with my father, sister, & her mother, & I was ok.

CCinPA,

I don't have any problem with the J-pouch, guess before the surgery I used to go once a day. The only time I have the urge to go is when I have dairy products that I have eaten or drinking. I usually don't have anywhere to go to.

ks1905,

It's 50-50, I don't believe none of my stimulant caused me to go often. With my Mental Illness, I'll need to take em, or I'll probably be way off, or in the hospital.
Posted 9/4/2023 11:24 PM (GMT 0)
Keep up on your meds for your mental illness. That's so very important.

I think that all of us are alittle concerned after surgery and what our "new normal" will be.

The secret is to try to be as positive as possible, preplan, have a support system in place and to venture out in "baby steps". Sometimes when we are very anxious our doctors can give or adjust medication to help us.

I'm very glad that you have made a conscious decision to try. That's the first step and is so very important.

Remember--we are here to talk to.

Clo
Posted 9/6/2023 12:30 AM (GMT 0)
I wasn’t recommending not taking your meds, I was just wanted you to be aware that they might cause some stimulus effects to your j-pouch.

There are meds to help slow down your output if you’re thinking that is an issue for you. There are anti spasm meds, opiates, etc… I’m just suggesting that you talk to all of your doctors about how everything is interacting in your body, maybe they can make some suggestions to help balance things and make you more comfortable going out and not worrying about your j-pouch.
Posted 9/22/2023 12:50 PM (GMT 0)
Since I've got my jpouch, I'm definitely more housebound.
Posted 9/22/2023 10:48 PM (GMT 0)
That's not the norm.
Surgery gave me my life back.
UC doesn't hold me hostage anymore,surgery was my saving grace.
I've never liked sitting home letting this disease control my life yet it did sometimes.
I had surgery so I could enjoy life and I do every day.
Posted 9/26/2023 5:05 PM (GMT 0)
I go more, but it's quick and I will just go when I am going to pee. I prefer not to go more often, of course, but that's life. Usually during the day, I am okay, it's getting up at night that drives me crazy. I also get the anxiety when I have to take long car rides or fly somewhere. Camping would be a huge 'no' for me, but I never liked that stuff even before UC, and while I had UC I could barely leave the house due to it's persistent and severe nature. I definitely have a lot more confidence than I had with UC and I go out more, but I do tend to prefer to go out in shorter spurts, and I do think about the bathroom when I am going places I am not comfortable. Pre UC, I never worried about bathrooms. It's not a perfect solution, there are definitely pros and cons. If I had another option I would have taken it. At least now, I am not dependent on drugs. That is one massive positive. I picture myself getting older on immune suppressing drugs, unpredictably pooping. Now I will be pooping more predictably at least.
✚ New Topic ✚ Reply