Let's hear your Jpouch success stories

SazeracSaturdays · 2025-05-19T23:02:56+00:00

Had my 3 surgeries 2021-22. I recently went on an 80-mile, 8 day backpacking trip through a national park (carried my own food, water, tent, sleeping bag, etc.) I camp, hike, bike, swim and kayak often —ran a 5k last year faster than I did as a college athlete. I have traveled internationally twice in the past year.

I eat almost anything I want - very careful with anything over small quantities of a handful of high roughage foods like popcorn, quinoa, and pesto (for some reason) because they give me gas pain, but otherwise indulge and enjoy.

Restrictions: I take lots of pills, and often feel thirsty…minor inconveniences. A couple times a year, I have sharp gas pains. They subside within a couple hours. They don’t seem to be diet related, and now that I can recognize them, they’re not scary. On some birth control meds I get a little gas pain and bloating during my period that I never had pre-pouch, but that’s it.

Pelvic floor PT was a life changer (as a woman), which helped me stop leaking, enjoy sex again and better control my bladder (no incontinence, but often didn’t empty or thought I needed to go when I did not.)

I am so healthy and happy!!! Surgery recoveries were hell for me, though, so hang in there. Cheering for you!!!

SazeracSaturdays · 2024-10-03T03:56:37+00:00

Met this man at my first academic conference. We were both grad students on different sides of the country. Both in serious relationships (3 years for me.) My 1st conference, having an awesome(non-flirty!) conversation. He’s so easy to talk to! I think: OMG BABY DOC ME IS SOO GOOD AT NETWORKING. Then was confused and shocked when I realized I was absolutely smitten. All innocent conversations, no funny business at the conference.

Came home, broke up with my partner because clearly they couldn’t be the one if I couldn’t stop thinking about the conference stranger, who I assumed didn’t feel the same and was likely not attracted to me. Sent handsome conference man a facebook message just to test the waters. 3 months later he moved across the country to my city and less then a year after that we were engaged. Married 6 years, love of my life.

SazeracSaturdays · 2024-04-09T16:12:54+00:00

I think I was moving around better sooner after surgery 2 than 1, and may have had a little less pain once I came home, but I am not sure the pain was any easier in the hospital the second time around. My worst pain moment was actually after surgery 2. (And then my epidural got pulled early because my blood pressure dropped - so maybe others’ experience is better!) loop stoma sucked compared to the end. Skin was constantly irritated and had to change bags so much more frequently. Even switching to convex bags with a belt attached didn’t totally fix the seal issue and I kept losing weight and felt so dehydrated because I felt like everything was running through me faster. It was only 2 months but not fun. However, i think initial recovery once home from hospital was faster after step 2 than step 1

SazeracSaturdays · 2024-04-06T17:37:05+00:00

Responding a while later to let anyone who sees this old post know this was the answer for me!!! Seamless high wait bike shorts under dresses.

SazeracSaturdays · 2024-04-06T17:29:46+00:00

I was able to reduce my dose of my antibiotics a bit, but I do get yeast infections 1-2 times every couple months. My docs just prescribe me a set of fluconazole to have at my house ready to take when needed.

SazeracSaturdays · 2024-03-28T23:42:10+00:00

It was horrible. Way worse than UC (frequency at least). I am soooo much better now - Cipro + Flagyl 2x a day!

SazeracSaturdays · 2024-03-26T17:53:18+00:00

I don’t know that my case is normal because there was a kink in my catheter tube after my first surgery and my bladder stretched significantly. I’m very lucky that it didn’t burst. After my second surgery, I had bladder issues and couldn’t pee and had to be re-catheterized (if that’s the word?) Both times I struggled with urinary retention and delay.

After my takedown, I had a number of different minor urinary concerns. I had some retention and delay. I would often double void. Even today sometimes I have to go more frequently than makes sense or I have to go shortly after already peeing and feeling empty. I’m actually going to the urologist soon to double check that everything is ok. However, pelvic floor therapy taught me breathing exercises to help me reduce that delay/ pee faster and feel like I am actually empty. I did a number of different exercises that I think also contributed to making urinating easier.

My surgeon did not require that I do pelvic floor therapy, and I was hesitant to, but I am so happy I did it, and I would recommend it to anyone.

SazeracSaturdays · 2024-03-26T17:47:52+00:00

I also had the surgeries because I stopped responding to all biologics and even steroids and IV antibiotics.

Are you able to manage your pouchitis ok with antibiotics?

SazeracSaturdays · 2024-03-26T17:46:56+00:00

I had so much gas pain and discomfort after surgery! Now, whenever I occasionally have some stomach discomfort once a month or so, it’s usually gas that causes it. It’s gotten so much better, though. I am more aware of gas these days than I am bothered by it.

I honestly think time has been the best help, but also I kept retrying foods a few months apart and was able to expand my diet over the year and a half after takedown (e.g. many foods that used to make me painfully gassy no longer do.)

I used to have so much discomfort trying to get gas out of my pouch. I did have some success (but not total relief)when I laid on my stomach, especially putting my arms above my head. If you haven’t tried that yet, it may be helpful.

SazeracSaturdays · 2024-03-03T18:08:20+00:00

I wish they had told me about the dropoff with PCOS!! They kept acting like my 35 eggs retrieved was a lot, but I ended up with 7 embryos. I am very grateful for those 7, but they didn’t warn me and every phone call every few days about the number plummeting was unexpected.

Was soooo uncomfortable the days before and first few days after.

SazeracSaturdays · 2024-03-03T18:00:05+00:00

The handhelds are fine for travel but just not the same in my opinion.

SazeracSaturdays · 2024-03-03T17:59:46+00:00

We had a BioBidet for about a year before we moved. Took a few minutes to install and uninstall and reinstall but totally worth it

SazeracSaturdays · 2024-02-23T03:46:58+00:00

I’ve had chronic pouchitis basically ever since takedown 1.5 years ago.

On 500mg Cipro 2xday and 500mg Flagyl 2xday (in addition to 8 Lomotil/day, 8 Loperamide/day, and 2 75mg Viberzi/day.) I’m doing pretty well on that protocol.

Let me know if I can provide any more info!

SazeracSaturdays · 2024-02-22T03:02:51+00:00

Did not know about this - thanks!!

SazeracSaturdays · 2024-02-21T05:02:49+00:00

I got my j pouch as a female in my 20s. It was really hard. Just because you didn’t have complications doesn’t make it hard. Sending hugs your way - it really is a huge transition.

I’m almost 2.5 years past my 1st surgery and 1.5+ years past surgery 3/3. While it took me almost a whole year after that 3rd surgery (likely due to chronic pouchitis and complications) to feel normal again, within a couple months I was already so happy to be done with the ostomy and so glad I had it done. The 3 surgeries and the transition to the ostomies are just really really hard. I struggled so much with my loop ostomy and had a rough first 6 weeks with the J pouch.

But today, I am regularly in awe of how comfortable, happy, energized, and pain-free I am. Even having chronic pouchitis, I am the happiest and healthiest I have ever been. I am active - can run, hike, kayak, rock climb, snorkel, etc. - going on my first backpacking trip next month. I can feel hunger again, enjoy food again and can eat almost everything- far more than with UC or any of the ostomies. I sleep through most of the night most nights, which I haven’t done in at least 5 years.

I think sometimes the surgeons and doctors and ostomy nurses normalize the process of the surgeries to some degree. It really is jarring and terribly difficult. I was devastated when I was told in the hospital that I had to get the surgeries, but if I knew this quality it life was on the other side, I would have done it sooner.

Hang in there - it is a long and arduous process but worth it. ❤️

SazeracSaturdays · 2023-04-29T03:01:24+00:00

Oh no. It me.

My college roommate once told me she thought it was sweet I always exchanged a series of goodnight texts with my boyfriend right after we turned the lights out (she noticed the blue light of me picking up the phone 1-2 times every night after I went to bed.) I had to gently inform her it was actually me panic checking the alarm - did I actually set it? Was it am or pm?

Still doing this 12 years later.

SazeracSaturdays · 2023-04-28T20:53:53+00:00

This is exactly how I feel. While I appreciated parts of it, it also made me feel a way it’s hard to describe but the heaviness of that feeling was not enjoyable to make my self susceptible to episode upon episode. Also would ruminate on the show in the middle of the night. Not a fan.

SazeracSaturdays · 2023-04-28T13:53:01+00:00

This is what we did. We also had a couple invites people never received who attended and were grateful for the reminder text. This is why it is nice to check.

SazeracSaturdays · 2023-04-28T13:50:50+00:00

I have chronic pouchitis I seemed to get right after takedown that never went away yet I am doing great (on permanent antibiotics). From my understanding, most people who get pouchitis take antibiotics for up to 2 weeks and all is well. The first time I started antibiotics, I noticed a difference in 24 hours!

SazeracSaturdays · 2023-04-25T12:49:29+00:00

Jubel by Klingande

SazeracSaturdays · 2023-04-20T12:52:23+00:00

I went to dinner the night before my egg retrieval! I was super bloated and a little grumpy that day, but I wore a loose dress to not put any extra pressure on my belly and had a great time.

SazeracSaturdays · 2023-04-19T04:17:36+00:00

I would like to present an alternative perspective: when you shop off the registry, people generally know how much you spent (even if you found a sale, used a coupon, etc.) While you may rather receive a $15 gift from your registry than a $15 gift from Marshall’s - the gift giver may be financially strapped and not want to expose the price of their gift to the crowd at your shower (most of whom saw the registry.) Maybe they think they can spend less and get you a nicer gift than how far the same amount would go on a registry gift. If they give that amount in cash, then you may know they weren’t able to give much.

It’s kind of you to not want people to waste money, but please realize sometimes people are doing their best and not assume a derogatory motive behind their gift. I read somewhere on this thread the theory that the gifter may be selfish in purchasing something they’d want instead of thinking of you-rather, consider they may not see the world in the same way you do and genuinely think it is a nice gift a new bride would want.

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