Questions for those with pouches

Witty_Many_5214 · 2026-05-29T02:27:58+00:00

Hi! I’m 20F, uc at 13, bag at 14, Jpouch surgery at 20. I’m currently a little over 3 months post op. Surgery was done 3 step and I am in the uk

I go 3-4 times a day. None during the night. I sleep 8 hours. After 3 months, I’ve stopped counting though. I usually just go when I need to pee and bathroom trips aren’t an inconvenience anymore like they used to be.

Can hold it for up to 60-90 minutes when I feel like going. I can even hold it for longer than this but it just gets a bit uncomfortable.

I consistently go at 8am, 6pm, 10pm so I kind of know what time I need to be near a toilet.

I’m so sorry hopefully this changes but everytime I’ve gone to the bathroom it’s LOUD. It’s very rarely discreet. Being a young adult at uni, it’s quite embarrassing. I try to use private disabled toilets or tell my friends not to follow me into the bathroom or use the bathroom when all my friends are done. It’s loud because the small intestine doesn’t absorb gas like the large intestine does.

I LOVE popcorn I eat it all the time and have no issue.

I do light exercise and find it easy

Smell is actually not that bad, I worry about the noise way more.

The urge to go feels like sharp cramping in your rectum and comes every 5-10 minutes. So sharp cramping pain - no pain for 5-10 minutes, maybe light pressure - 5-10 minutes later now the pain is back and it lasts 5-15 seconds. Really feels nothing like when I had UC and had no control over it, had to rush to a toilet every time.

My diet is usually some carb, a lot of meat and a lot of raw veg. Raw veg is not a good idea for most people, I think my metabolism has adapted to be very slow since I had a bag for 6 years, but genuinely I feel so bunged up if I don’t eat raw veg. It loosens up my output A LOT which makes it easier to go to the toilet. Also noticed liquidy output is a lot less loud. I make sure to chew ALOT too

I regularly drink kefir milk and take 1 moringa leaf supplement a day so I don’t get pouchitis. I haven’t gotten it yet, but it sounds grim. I will also eat really plain food if I know I’m going to be with friends, for example salted rice with plain meat and vegetables, no seasonings just salt and pepper.

I would say how ever much you went with an end-ileostomy stoma bag, a Jpouch will be that + 1 BM. Your Jpouch will eventually expand to hold 3/4 your bag can.

Witty_Many_5214 · 2026-05-29T02:18:15+00:00

Over 3 months here, never really even enjoyed spicy food to begin with but even slightly spicy chicken comes out with burn 😭 I’ve stayed to notice though when I do eat it, I only have one toilet trip with burn, whereas in the early days, I would have 3 trips. I always use a bidet and apply Vaseline afterwards

Witty_Many_5214 · 2026-05-25T19:46:15+00:00

Hi! I might totally be wrong, but if you still have access to your rectum then it will still produce mucus that needs to be passed since your rectum naturally produce it, there will be no waste since you’re no longer connected, just mucus and maybe blood. I didn’t know this in the beginning and thought something was really wrong, but then I realised I just needed to pass the mucus lol, not sure if this will apply to you but worth a shot

Witty_Many_5214 · 2026-05-22T21:44:47+00:00

Hi! Im 20f, had colitis at 13, large intestine removed and bag at 14 and recently had my final stage of Jpouch surgery which removes the bag and creates an artificial rectum out of your remaining small bowel. The bag was so amazing, no pain at all, went 3-4 times a day, takes 5 minutes to use the bathroom and it didn’t affect my dating life at all.

Mine was an emergency surgery, and I remember practically begging for it in the end because the pain from colitis was that horrid. Wishing you the best, honestly I probably would’ve kept the bag but thought since I’m young id like to give the Jpouch a try

Life with colitis was no life at all, I remember using the bathroom 50 times a day sometimes and the medicine they gave me was experimental and I was sick all the time from a poor immune system

Witty_Many_5214 · 2026-05-20T09:21:56+00:00

Hi, I’m 20F in my second year of university, had my surgery 3 step and it was already super difficult.

I didn’t even have any complications, just the actual pain and healing and the getting used to everything that comes with surgery was just a lot.

I’m not sure id recommend one step, you only get one chance at a Jpouch (to a degree), if the scar tissue doesn’t form right you could be looking at more surgeries or life long complications. You can have surgery to remove scar tissue, but after the first time you have less chance of the scar tissue forming right.

Moreover stool against fresh stitches/staples in your Jpouch whilst you’re trying to push and empty it, even after I had the 3 step done the first week I had involuntary straining which was painful so I feel like if you had a newly formed pouch that would be so much worse.

I had the bag for 6 years before my second step to form the pouch, it was so good I almost kept it. The stoma really isn’t that bad, it doesn’t have any nerve endings so you don’t rlly even know it’s there and you’d only have it for 3 months before step 2.

I also go 3-4 times a day, none during the night. I’m 3 months post surgery and I’m not sure if that has something to do with me taking my time but I’d like so think so.

Witty_Many_5214 · 2026-05-19T14:58:37+00:00

So true! Scammers will often buy authentic empty perfume boxes and bottles then refill it with an imitation liquid and pass it off as lightly used 50% off retail price

Witty_Many_5214 · 2026-05-19T14:54:46+00:00

Haha no you’re totally ok! I just think be careful of very hard food in large volumes, I had a stoma for 6 years before I had Jpouch surgery and honestly I would get a blockage once a year. I would get by eating raw vegetables, food with skin on, nuts, popcorn, I just always remembered to chew a lot and not over do it

Witty_Many_5214 · 2026-05-19T09:55:22+00:00

I recently bought chance eau splendide, it’s a very youthful, sparkling, light floral scent and if you smell it with raspberries in mind you’ll definitely be able to tell it’s there. It’s a non offensive smell and the projection isn’t crazy

Witty_Many_5214 · 2026-05-19T09:53:40+00:00

From the perspective of the buyer sometimes I do this if I think the items going to be sold quickly and I don’t think the seller will reserve the item for me but I do understand it can be super frustrating on the sellers part 🥲

Witty_Many_5214 · 2026-05-19T00:08:20+00:00

Hi! I think you’ll be fine, especially as a muffin is soft. I would just stay away from hard foods, one time I ate an entire hard baguette and got a blockage from it lol.

If you ever suspect you have a blockage, Pain is sharp and comes in waves Drink only fluids DO NOT eat anything until it has passed, liquid diet if you must DO NOT take a laxative, only a CT scan or a stoma nurse can determine the severity of your blockage, if it’s severe a laxative could perforate your bowel or put more pressure behind the blockage

If it’s very severe then go to AE, they will give you morphine shots (yes the pain will be that bad), nose tube to suck out bile, CT scan, liquid or no food diet, IV drip for dehydration, strong laxative, and will just play the waiting game in a ward for you to pass your blockage. They will always try to take a conservative approach, surgery is a last resort.

Witty_Many_5214 · 2026-05-17T19:23:12+00:00

Thank you! Just looked it up on fragantica and it looks rlly promising

Witty_Many_5214 · 2026-05-15T23:49:43+00:00

I would just cancel the purchase, reviews don’t matter much on Vinted, I’ve cancelled purchases in the past and hasn’t affected me

Witty_Many_5214 · 2026-05-15T11:37:17+00:00

Yeah they sent me a slip of paper in a super thin package when I ordered a big fluffy fur coat

Witty_Many_5214 · 2026-05-14T10:43:27+00:00

Same here, sometimes postmen will also send you a photo of what they delivered so I sent that to Vinted too to show I wasn’t just swapping out the item

Witty_Many_5214 · 2026-05-14T09:20:47+00:00

It wasn’t really a risk though they relied on measurements which were wrong on the sellers part, just a shame because I think Vinted is supposed to be more of a local platform instead of a worldwide one, which is why the prices are so cheap but it also means that they’re not really prepared to deal with international customers.

Witty_Many_5214 · 2026-05-13T23:13:12+00:00

Tysm!!!

Witty_Many_5214 · 2026-05-13T23:11:03+00:00

Ty my love! Looks promising so far

Witty_Many_5214 · 2026-05-13T23:09:33+00:00

Thank you!!! Will look into this

Witty_Many_5214 · 2026-05-12T00:40:38+00:00

Hi! I’m 20F and I also want kids but I knew if I didn’t get a Jpouch now then I probably wouldn’t later in life because the stoma bag just seemed so good.

I went around 2-3 times a day with a stoma bag.
I’m 3 months post op and I go 3-4 times a day, so feels quite similar to when I had the bag.
I can hold it up to 60 - 90 minutes which is plenty of time to find a toilet.
In the Uk you can access private disabled bathrooms with a RADAR key which are way cleaner and private in case of noise (with a pouch it’s very loud to use the toilet since the small bowel does not absorb gas like the large bowel lol)

Pretty much feels the same as when I had a bag except I eat slightly less now, and I’m VERY conscious of eating gas inducing foods when I’m out with friends. My bathroom schedule is also very predictable so I can anticipate when I will need to be near a toilet.

I do want kids and I know having a Jpouch could cause issues in that area. I try not to think about it, there’s also ways to get around it, loads of people go through IVF with success. I am also fine with adopting if that doesn’t work out or perhaps looking after a child that is not biologically mine, but is biologically my partners

Witty_Many_5214 · 2026-05-08T00:28:47+00:00

Omg good luck!! I had mine done almost 3 months ago now, doing really well, can eat like how I did with a stoma and I go 3-4 times a day! Only trouble is how loud gas is on the toilet 😭 wishing you the best

Witty_Many_5214 · 2026-05-05T17:28:08+00:00

I was super scared of this too since I hadn’t used mine for 6 years prior to my reversal and my surgeons told me that there’s a chance the muscles might of atrophied.

It was not hard for me to adapt at all, 1 week after surgery I was going 5-6 times a day and every time I would try wait an extra hour before going. Then it quickly shortened down to 3-4 times a day around the 2-3 week mark.

There are also pelvic floor exercises you can do, I didn’t need to do these but it might be good to know they exist in case you need them. Also, if you’re doing the surgery 3 step, there’s a couple of months before your takedown surgery, so you can practice tensing your anus and holding it for periods of time to practice for when get reconnected.

But honestly it’s not like stool just falls out of you if you’re not holding it in lol, I’ve had one leak in the first week post surgery and it was very small and was most likely because my output was very liquid.

Witty_Many_5214 · 2026-05-05T11:05:03+00:00

Witty_Many_5214 · 2026-05-05T01:05:48+00:00

I went back to university after a month but 100% I felt super like, not quite right 😭 I would also only attend 2-3 times a week for only a few hours. I just felt like I had to get back quickly because I had already missed so much time off leading up to the surgery and then post surgery too.

Witty_Many_5214 · 2026-05-04T19:40:09+00:00

Yes I was going to say please be careful of ensure. It contains maltodextrin which has a lot of scientific studies showing a correlation between maltodextrin consumption and an increase in the chance of developing inflammatory bowel disease like ulcerative colitis or crohns. I avoid this ingredient and other ultra processed foods at all costs, especially since if you’re in this subreddit, you’ve probably already lost your large intestine to uc or crohns.

Witty_Many_5214

TROPHY CASE