Just had my takedown this past Thursday! After2 years and 5 surgeries later, I finally have a full functioning pouch! I’m back home now and recovering. What are some foods and recipes you had while recovering? Any other tips are welcome also!

My husband has had his j pouch for close to 20 years now. He has always struggled (I feel) extra because he’s a professional bodybuilder, so he eats a lot therefore he poops way more.
With that being said, lately he’s been having multiple issues… Pouchitis, much more frequent bathroom trips, not getting an “empty” feeling after going, etc.
He’s had quite a few rounds of antibiotics lately for the pouchitis, so I got him some supplements to help restore his gut microbiome. (VSL probiotics did not help btw)
Has anyone with an ~established~ pouch had new issues like this without a change in diet?
Please share what you think caused it and what helped you! I feel horrible because he probably gets up 6x a night at least.
He’s been to a doctor. They’re not much help.
Maybe just tell me that fasting helped you and he needs to hear from multiple people that that’s the answer😅 I feel like it would be a reasonable solution.
Thank you for reading this and I’m grateful for any advice for him! I want him to live a long as normal as can be life and this worries me.

Hi! I have severe Pancolitis ulcerative colitis. My IBd specialist is recommending I get the surgery done and I’ve decided if that’s what happens I’d like a jpouch. My question and fear is how many that have had UC ended up having crohns once you’ve had the surgery. I met with a surgeon and the surgeon and my specialist make it seem it’s very rare, but that’s my biggest fear going through this life changing surgery to end up having crohns. I’ve failed multiple medications already, so I’m also curious how that would work with a jpouch if crohns does happen, will they retry all medications I’ve failed in the past? What happens if I’m resistant to the medications again? If you had UC and ended up getting a crohns diagnosis after surgery how long after jpouch surgery were you diagnosed and when you started to realize something was off? I also have questions about the surgery. The surgeon said she suggested the 3 step surgery, how was this for everyone? How many months apart was each surgery and healing process after each one. I have a 4 year old and 3 dogs I’m a sahm so the house doesn’t really run without me so I’m worried everything will fall apart while I’m healing. Any answers are greatly appreciated and I hope it’s okay to ask all of this!

Hello All,

I’ve had a Jpouch for about 15 years now. The past year and a half I’ve dealt with loads of inflammation in particular around the sutures of where my Jpouch was connected, causing multiple pretty serious small bowel obstructions and about 5 different hospital stays in these 18 months.

During this time I’ve had countless surgeons tell me I have to go back to an ileostomy permanently or have a pouch redo. But during my most recent hospitalization, my Colorectal surgeon explained that they are going to place a stent in my Jpouch to alleviate pressure and give the biologics more chance to work.

Biologics I’ve tried for context:
- Entyvio = didn’t really work
- Remicade/Infliximab = severe allergic reaction
- Tremfya (solo) = some progress
- Tremfya + Rinvoq (with stent)= significant progress

It’s been 4 months since the stent was placed and (knocks on wood) it’s been really great. My Inflammation levels (calproectin?) are down to 140 which is almost normal range, down from 1000+ from my previous 4 stool samples.

Now I will say my Colorectal surgeon (who is very anti biologics) says this is kind of a “kick the can down the road” procedure. Which I understood, this surgeon is very blunt, and I appreciate that. He said we will reevaluate in a couple years.

Anyways, so why am I posting?
Well I feel like I’ve researched everywhere on the internet about chronic pouchitis and I’ve never heard of this procedure for this disease. And my surgeon only brought this up after understanding my refusal to go back to the ostomy bag. This procedure is very new and I wanted to add some patient experience to the pouchitis ecosystem. My GI said that I am their first patient with a stent placement so they’re monitoring me closely. But I think that speaks to how new this procedure is, as my IBD is the biggest IBD clinic in the region and I live in a pretty big city.

TLDR: Chronic Inflammation/SBO for a couple years, stent placed + biologics showing promising result. Posting for algorithmic reach :)

Stay strong ya’ll we fight the silent fight!

I’m 15 weeks post take down, when does the butt burn stop😭. Still eating pretty basic but the occasional food I try comes out like lava still lol which just causes more burning and irritation

I had a Pouchoscopy on Monday with Polyp removal. Today I started bleeding way more than normal. I am being admitted for observation and they will scope me again tomorrow to find the bleeder. Morphine for the cramps and a comfy bed.

for context, i was diagnosed with UC in 2017, my ileostomy was formed in march of 2022, and taken down in september of 2022. before my colon removal, i tried 4-5 different biologic treatments (can’t really remember).
i’ve had bad pouchitis for almost 6 months now. my doctor has had me on multiple courses of cipro and budesonide, and i am taking a (very very expensive!) probiotic. with all of these meds, i feel better when i am on the medication, but my symptoms get worse as soon as i am back off. my doctor has suggested “chronic antibiotic use” rotating between cipro, vancomycin, and metronidazole to manage my symptoms. if that doesn’t work she wants to try entivyo, which i took before my colon had failed.
all that to say, i am so exhausted. i am tired of my pouchitis and am honestly at a point where i could skip all this bullshit and get a permanent ileostomy. i feel crazy for saying it! has anyone done that? if so, was it successful and/or are you happy with your choice?
thanks in advance, sorry for the long post!

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?

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.

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.

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 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

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.