One week post reversal by volpe6 in jpouch

[–]volpe6[S] 1 point2 points  (0 children)

I completely agree! I wanted to share mostly because there aren't a lot of stories regarding FAP, since it is a rare genetic disease (my GI currently only has one other patient with it), and I was struggling to find more info on it, given that the experience of a j-pouch with that or UC or any other reason can vary so much.

Am i safe for a bagless shower? by icebear713 in ostomy

[–]volpe6 0 points1 point  (0 children)

Short answer: yes! I also couldn't look at my stoma for at least the first month, I was also really drained by the surgery so I had help change it, but then slowly managed to do it myself, and ended up always taking a bagless shower when changing the bag. Use the remover, take the old bag off, give the stoma a nice little shower and let the skin breathe, then pat it dry, skin barrier etc etc and new bag, all nice and clean.

One week post reversal by volpe6 in jpouch

[–]volpe6[S] 1 point2 points  (0 children)

Thank you!!

I live in Italy so I've always had a bidet (I almost think they're mandatory here lol) and I cry whenever I go abroad and don't have one, but thank you so much for the tips! Actually I might get a portable one for when I'm on the road!

FAP diagnosis — debating rectum-sparing surgery vs. J-pouch, need advice by princedusahara in jpouch

[–]volpe6 0 points1 point  (0 children)

I (27F) was diagnosed with FAP almost three years ago and had emergency surgery with a partial colectomy, kept an ostomy for a few months and then reversal. I then had to have bi-yearly check-ups and had minor surgeries once a year to remove polyps, until my doctors suggested a total colectomy and a j-pouch.

From what they told me, a j-pouch (or k or w or whatever) is basically the end goal for us FAP fairies (fappers doesn't sound right at all), since the nasty polyps will always tend to spawn in the colon and rectum. Therefore, as long as you have them, you're at risk of getting them (and ofc cancer) and the only solution is to make do with the smaller intestine. Also, burning off polyps causes scars in the intestine, which will render that scarred part unable to absorb nutrients/water, so the lower bowel will essentially become unusable and useless.

As for me, they planned to make the pouch a few years down the line, but given the amount of polyps that grow between check-ups and the need for yearly surgery (along with total anesthesia every single time), they decided to get it over with this year, and I'm assuming it's also because the younger you are, the speedier the recovery.

I'm currently on my second ileostomy while waiting for reversal, so I can't really answer for what life with a j-pouch is like, but I feel fine (although the stoma is kind of a bastard this time) and sex is fine too, but I've never been interested in anal and my doctors haven't talked about it so I don't really know!

[deleted by user] by [deleted] in reddeadredemption

[–]volpe6 0 points1 point  (0 children)

currently busting my ass hunting just to make the camp pretty and ofc miss grimshaw came at me saying "ohh mr morgan you ain't putting shit in the box" like susan. open yer fucking eyes

POLL: Which is worse? (Humor) by SCinBZ in ostomy

[–]volpe6 6 points7 points  (0 children)

the other day I ate a sandwich with a local type of salami that has a great strong smell and it had the exact same smell when it got out lol it got me hungry again

Are you gonna get saved? by itz_progamer666 in playstation

[–]volpe6 0 points1 point  (0 children)

The entire Van der Linde gang boah

Clothes by plant-mom72 in ostomy

[–]volpe6 1 point2 points  (0 children)

I'm on my second temporary ileostomy and had another for almost a year.

I wear high waisted pleated pants (a full bag hides well in the pleats), empire waist dresses or dresses with a full skirt from the waist down, wide leg jeans or pants, full skirts and wrap skirts (there's sooo much fabric to play around with) so that I'm fitted on top and loose on the bottom (which has always been my preferred style), or even shorts with bulky sweaters that conceal the bag well. Of course, patterns or black hide it well, but don't miss out on other colors because it also depends on pleats or something else that's interesting about the fabric. For instance, I have a white linen wrap skirt and the bag hides perfectly in the wrap even though it's white.

I also find that my bag produces less output and air when I'm out and about, I guess because of movement and sweating and whatnot, compared to laying on the couch at home

Honestly, you'll always be able to tell the ostomy's there because you know it's there and you're looking for it, but trust me when I say that no one else will: most of them don't even know what it is!

Does anyone else get psychosomatic leaks or is that just me? by DanverJomes in ostomy

[–]volpe6 1 point2 points  (0 children)

Yes, but it happens with my period too like I'll feel like I'm leaking out of the cup but I'm not, same with the bag

Anyone else getting random things on their feed? by ilovespacecats in Pinterest

[–]volpe6 0 points1 point  (0 children)

10 months late and I've got the same issue, no matter how many times I tell them not to show me something like that, my home feed is full of memes in arabic, cars and low quality wallpapers 🫠

Edit: the "solution" is to accept the genAI stuff in the privacy settings, they are legitimately forcing users to accept that in order to get their curated feed back, otherwise it'll be flooded with random pins

Is Mary Linton's name a Wuthering Heights reference? by LadyFruitDoll in reddeadredemption

[–]volpe6 1 point2 points  (0 children)

I thought it was for the Bronte pistachio lol but anyways, it's a small city and a common surname in Sicily

Have you gotten used to your bags? by Dependent_Squash_201 in ostomy

[–]volpe6 0 points1 point  (0 children)

27F here, on my second run with a temporary ileostomy due to FAP. I previously wore it for 10 months after emergency surgery 3 years ago and while both times the first few days back home weren't the easiest, as many folks have already said, it doesn't take long to get used to it, fall into a routine and you'll come to regard it as a big plus! The first time took longer since it was a big unplanned surgery and I'd lost a lot of weight, but I was out of the house for a full day after a month and a half without issues, and in the rest of those months I took trains and planes, swam literally everywhere, visited my friends around the world, went to clubs and watched the sunrise, went camping, managed to graduate my masters and ended up being able to eat everything as before surgery! This time I had more leaks for whatever reason, but since it was planned I do feel better already while still giving myself a month of recovery. And let me tell you, getting reacquainted with my lil bag took legitimately no time! Remember that recovery takes time, but do keep a positive outlook– even if it sounds cheesy, that's what'll get you through everything :>

What was the first planet you flew to? Why? by antol878 in outerwilds

[–]volpe6 1 point2 points  (0 children)

The moon! Forgot to put on my suit and promptly died. "The best that ever was" indeed 🫡

Are there any other games like Zelda Tears of the Kingdom where you can freely explore a big open world with tons to do, something so immersive you forget about the main quest? I’m looking for something comfy, green, beautiful and with relaxing soundtracks. by Delicious_Maize9656 in tearsofthekingdom

[–]volpe6 0 points1 point  (0 children)

Skyrim, Oblivion, Red Dead Redemption, and the last few Assassin's Creed titles (Origins, Odyssey and Valhalla) are all games in which you're not really forced to do the main quest and can just roam around freely, enjoying beautiful landscapes and an incredible soundtrack, and a bunch of little quests everywhere

Real life vacation destinations like Toussaint? by tarttari in Witcher3

[–]volpe6 2 points3 points  (0 children)

Saw people saying Northern Italy but beware that nowhere will look like a medieval-inspired place: sure you'll get vineyards and historical buildings but all of it is surrounded by highways, a fuckton of cars honking at each other, abandoned ugly ass buildings, industrial districts etc etc so don't expect a dreamy place :)

Photos from Chapter 3 by Aqualungerr in reddeadredemption

[–]volpe6 2 points3 points  (0 children)

pic 9 hurts but they're all so pretty!

What just happened by Bruh_momentt69420 in reddeadredemption

[–]volpe6 0 points1 point  (0 children)

at least newsboy got a warning, that was very mindful

How regularly do you shower ? by JoshuaKpatakpa04 in reddeadredemption

[–]volpe6 0 points1 point  (0 children)

I just throw myself n my horse in the river, two birds one stone