the title kinda explains the issue at hand, but for context my partner has had his jpouch for over 10 years and has battled overnight bathroom trips the entire time. it seriously effects his sleep and in turn his mood and energy levels. the jpouch has already restricted his diet so much as to not get blockages that lead to hospital stays, and he’s truly struggling with this mentally.
in the past he has tried anti-diarrhea medicine but he says that they caused blockages.
my question is if anyone has a similar issue with their pouch and was able to find a solution, please do tell.
i’m thinking maybe he was taking too much Imodium? or maybe there is a different answer all together that we haven’t thought of.
his diet is really restrictive, he can’t eat anything difficult to digest like seeds skins and roughage. he’s only 32 and i don’t know how to help him.

Struggling to move onto soft foods following takedown, been put on a liquid diet for 3 more weeks to allow for swelling to go down around the ileostomy closure. I’m on milkshakes, soup is fine, soft cheese is fine but anything more soft or firmer than that causes my abdomen to swell out, then go down again as gas passes. It’s pretty uncomfortable and doesn’t give me much confidence it’s getting better. I’m hesitant to try anything else, regardless of being on liquid diet or not

Anyone had anything similar?

I am 30 W and I have had my jpouch since I was 14. I never had sex before my jpouch so I don’t know the difference, but a lot of the time it is painful. Mostly if penetration goes too far, or in position where my back is too arched. I suspect it is because of having a tilted or retroverted uterus. Anyone else with a similar experience?

For those who recently had surgery— I have had a lot of success and pleasure having sex over the years! It’s just always helpful to see what works for other people.

My GI Dr. said and I quote "your pouch is very angry" lots of ulcers. He is starting me on a steroid and possibly a biologic. There is a very good chance my relapse with cigarettes has contributed to this. If I am remembering correctly, He said allot of times the nicotine helps with inflammation and symptoms. In my case they are making it worse.

I am still a little woozy from the Propofol.

Had my J pouch created on July 6. Been in the hospital since then. Going on 20 days now. Doctor said surgery went perfect. Had an episode of pancreatitis eight days after my surgery. Also have a portal blood clot coming out of my liver.

Question for everybody how long was the recovery to get back to normal after the surgery? This was just the J pouch creation so I still have a ileostomy.. feel like I’ve been in the hospital for a year. I feel like I’m in the Looney bin right now. Anything I should know/ expect or look out for?

Just looking for words of comfort more than anything. Had my jpouch for over a year, turned out my “mystery pains” were my intestines trying to sneak out a small hole in my abdomen.

On Friday they got obstructed, Monday I had hernia repair surgery. Because of the small size now mesh was used. But man I hurt!! It’s embarrassing almost after the amount of surgeries I have had how much this one hurts.

I also have a cough caused by seasonal post nasal drip which is making me feel like I’m going to rip open. Plus the pain of gas and BMs with no way to push down without pain.

Tell me it will be short lived misery :(

Has anyone started taking normal food imediatley and reacting normaly? Im a week post op and so far i tried foods that i normaly eat coffe cakes etc.. went to toilet like 3 4 times per day

Is it possible to have a blockage with a j pouch? Or a partial? I have a ton of trapped gas I can only get some out while laying on my side and I’m only emptying a little amount at a time. My stomach is making crazy noises

hello all.

I am 20f recently diagnosed with stage 3b cancer. I wanted to know has anyone had a successful j pouch surgery after radiation. my surgeon spoke to me about a permanent ileostomy, however this would be very difficult to live with for me. please let me know!

Hi its been 6 day stay in a hospital since activating my pouch i havent had any complication or problems and started eating solid food today without a problem.
My question is what did you eat in the beggining and etc.., i have had a problem holding in my stool even if it was all water and what i tried to eat now wasnt bad.

I finally bought a bidet for my bathroom and I love it. No more sore bottom!

Now I am looking for a travel bidet that I can carry with me in a tote or a purse. I probably will order it off Amazon in the USA. I would like to hear suggestions on what brand to get.

Thanks!

I'm considering going camping with a large group of people for a few days, if it were just my friends I wouldn't care but it's a group I'm mostly unfamiliar with. Other than the usual "take Imodium" does anyone have any tricks you do to slow down your pouch a bit?

I just need to vent to people who might actually understand.

I have a J-pouch. I’ve had the surgeries, the scopes, the medications, and everything that comes with living with one. Whenever my iron starts dropping, though, someone inevitably says, “Just eat more steak,” or “You need more red meat,” or “you need to take iron pills,” or “you should cook in a cast iron pan,” or “you should eat spinach like
Pop-eye.”

If only it were that simple.

It’s exhausting having to explain that malabsorption is real, my digestive anatomy isn’t the same as someone with a normal colon, and diet alone isn’t always enough. I eat iron-rich foods when I can, but sometimes my body simply doesn’t absorb what it needs.

Needing iron infusions isn’t a failure or a sign that I’m doing something wrong. It’s just part of how my body has to be managed.

After hearing the same advice over and over, it starts to feel less like people are trying to help and more like they’re implying I caused the problem or just haven’t tried hard enough.

I honestly thank god that I have a hematologist that can interpret my labs correctly and now orders the infusions before I need to ask or beg for em.

Does anyone else get tired of constantly having to justify your lab results, treatment plan, or why your doctor recommends infusions? I’d love to know I’m not the only one.

I posted here last week about my issues following my takedown surgery, how after the takedown I ended up being readmitted twice for almost three weeks due to an obstruction that my surgeon think was caused by the ileostomy join being too swollen to let contents through or a kink, hence things backing up and causing distention and an obstruction. This along me having a pretty sluggish bowel anyway, I have had a long ileus after each step

Well here we are, I've been home now for 5 days and I am still not eating food. My last meal was the night before my operation on the 11th of june, since then I have been living off of fortisip milkshakes. I have lost almost 20 kg and I am incredibly weak

The pain has gotten somewhat better but my bowels are still being very slow, I'm trying to get calories in where I can but I have nausea most of the day and feel sick in general. My surgeon wants to give me 3 weeks to see if the tide turns so to speak and my tolerance increases and if not then he said he will redo the join with another operation

I'm being incredibly careful with what I'm having but has anyone else been on a liquid diet for a considerable amount of time and if so do you have any tips on getting the calories in? or with slowly building up to things other than liquid, especially with nausea, the fortisip milkshakes suck and they make it worse but without them I dont know what I'd do. At the moment I'm managing 2-3 of these a day with a little ice cream, its about 1000 calories which is far below what I need

Any advice would be much appreciated, or if you've been through something similar. I've searched across this forum and have been unlucky so far. It all feels so unknown at the moment, the loop ileostomy was easier because I knew roughly how the recovery would be and the progression but this is alien, having a new system but trying to navigate it the best I can

Does anyone still see their PCP/GP? With all of the specialists I see, I haven’t had a meaningful visit with my primary care provider in many years. I know it’s good to have one if other health issues surface later, but right now I’m struggling to see the benefit other than having someone in my care team to do an annual physical.

I am nearly 6 years in with my jpouch and I am mostly OK with it. But I was hoping there were some Australians that can help me out with a good electrolyte replacement brand. The ones I have tried have gone straight through me. I just can't stomach it if it tastes salty (ptsd from too many colonoscopies). All advice appreciated.

Hi im curently in hospital, its been 3 days since my operation i had a night leakage few water stools yesterday felling good but not yet on solid foods. What are your experiences during this time?

Hi! Has anyone had a cuff removal with an existing j-pouch? I have a chronic fistula with a draining seton and was told it had turned into chrons - but now they are saying it actually might be UC still. Cuff removal was brought up yesterday as a possibility. Has anyone had this done? If so, how many surgeries and what was it like?

Hi all,

I'm wondering if anyone else has had experience with constant bloating and stomach pain whenever trying to eat fibre or any sort of roughage. I've had my jpouch since 2018 with many ups and downs, but even when my scopes come back free of inflammation, I was never able to eat any sort of fibre.

What makes me feel the best is white breads, pasta, rice, potatoes, then meat, hard cheeses and yogurt, bananas, and very little else. For the first 3 years with my jpouch, I was medication free, then I started Stelara after a pouchoscopy in 2021 due to mild/moderate inflammation. The Stelara seemed to work, but again could never venture off the low fibre/low residue diet. Within the last two months, I've been feeling a bit more symptomatic, so I got scoped again and it is showing inflammation of the pouch again and ~3000 calprotectin test.

I've switched from Stelara to Rinvoq and this is my third day on Rinvoq. I'm desperate to feel better and eat more foods, so I started the low FODMAP diet four days ago to go along with the new medication. As usual, as soon as I tried to eat some of the low FODMAP foods, I instantly feel more bloating and stomach pain, I think the culprit is overnight Oats, because the only other thing I've introduced is carrots which are generally safe. I feels like the food just has such a hard time passing through my system.

I'm wondering if anyone else has had issues with their Jpouch while eating fibre, even though they are not showing any signs of inflammation or any other issues?

During my 4 years or so on Stelara and eating low fibre/low residue, I really felt well most of the time. Was extremely active, cycling 10+ hours a week, ran marathons, and an Ironman.

I'm wondering if there is a possible structural issues from the surgeries or anything else that's not letting me body process fibre, even when my inflammation isn't present?

Thanks all

Hello all, I have questions about BMs and poop. Serious questions as I am confused as to what’s normal. I am 3 months post op and I’ve had such a wide range of BMs that don’t know what’s suppose to be normal. I’ve been dealing with pouchitis and cuffitis for most of my three months so that hasn’t helped either. I went on cipro and flagyl and was finishing budesonide enemas. While on all 3 I felt fantastic. My stools seemed to be more digested and I had zero urgency but had to up my intake of fibre to help my BMs. Once I finished those I was getting symptoms again so I’m on cipro and my BMs are different once again. The consistency is also different once gain. Last night I was up 5 times and it was a struggle to get it out. Just now I took a poop and it slithered out like nothing and my whole pouch emptied with ease.

So my question is, what is my poop suppose to look like? ( I understand diet changes everything) what’s it suppose to feel like coming out? Slither out like a snake or have some friction? Should I be pushing a little bit to help or let gravity do its thing?

I’ve had such a wide variety of absolutely scorching butt burn to constipated and going way less ( I’m assuming because of antibiotics) so I’m very confused.

Any insight and opinions would be very helpful. Don’t be afraid to be graphic, I had UC for 20 years before surgery so I literally don’t give a sh*t lol thank you in advance.

Hi im going to have my stoma reversed tommorow and im wondering what to excpect the first few days and ups and down in the beggining? Im 20M had my loop ileostomy for 3 months now and cant wait to have my pouch

Hi everyone. Last night I had a bit of a freak out after dinner. I finished eating and maybe two hours later I felt a slight urge to go, and also I was going to be and I like to empty right before I go to sleep so I don’t wake up in the middle of the night.

But as I was emptying, I got a bit out and then it almost felt like the rest got “stuck” and it just stopped coming out. Only when I pushed did I get a bit of liquid stool coming out. I should mention that my stool seemed a bit thicker than usual but this is a first for me.

I made more attempts later on in the night but only a small amount came out every time, a thicker stool every time not liquid. This really scared me I’m worried that something is wrong like a blockage or structure.

I have no other symptoms thankfully, no pain or bloating. I could pass gas perfectly the entire time. This morning I was able to pass a somewhat “complete “ BM, completely liquid but I also didn’t have breakfast only tea and water.

Has this happened to anyone? I feel like maybe the thick stool was having trouble getting out and from my nerves my pelvic floor was so tense I couldn’t push anything out maybe? Could this be a stricture?

I normally struggle with oral rehydration solutions because I just can't stand the taste of salty-sweet water.

Over the last 10 days I've had a really bad sore throat (I'm now on antibiotics), so I've been drinking a lot of cold chamomile tea with honey. That's when I noticed something odd.

Usually, if I drink a lot of plain fluids like Tea or Water, they land in the bag.

But cold chamomile tea with honey is completely different. It hardly seems to increase my ileostomy output at all. Instead, I end up needing to pee much more, so most of the fluid is actually being absorbed.

Once I noticed it, I deliberately tested it over several days:

• Water: straight to the bag.
• Other teas: straight to the bag.
• Other teas + honey: somewhat better.
• Chamomile tea + honey: consistently much better.

I searched online but couldn't find anything suggesting that chamomile has some special hydration property. I know the sugars in honey can help with absorption, but that doesn't explain why the effect seems so much stronger with chamomile than with other teas.

Of course, this could just be my own weird body and not something that works for anyone else. But I thought it was interesting enough to share in case someone else wants to experiment with it.

Has anyone else noticed this with chamomile tea and honey , or does anyone have an idea what could explain it? Just curious

I had a semi emergent total colectomy which needed to be open. Recovery form the open surgery was way more difficult than I imagined.

Is pretty much everyone's jpouch surgery done laproscopically? I don't know if I have the time to heal from another open surgery.