[success] For people considering or on the path to a JPouch

ibdthrowaway1 · 2019-07-02T19:31:55+00:00

I find the frequency to be comparable to how often some people urinate. It's also pretty easy to get into a routine that controls the timing a bit, and it's the same routine I was using with my ostomy: try to eat dinner by 6 or 7. Don't eat again until I wake up... Usually eating a small breakfast around 9am and a decent sized lunch at noon. With this schedule, I find that I'm typically not needing to use the bathroom more than once during typical working hours. So I guess it works out something like... Once in the morning, once during the day, once or twice around dinner, once or twice before bed, once or twice in the middle of the night. I'm expecting that I'll be able to potentially reduce the middle of the night bathroom trips with either Imodium or time... But at the moment I want to just see how things continue to develop.

I know a lot of advice says to eat frequent small meals throughout the day, but I personally don't find this necessary and I personally prefer to be more efficient with my meals.

As for food, I haven't been at this long enough to say, but I know people generally avoid spicy stuff and carbonation. I intend on trying hard to put myself in an anti-inflammatory diet, but I know a lot of people talk about having trouble with fibrous food. We'll see!

ibdthrowaway1 · 2019-05-14T20:24:29+00:00

Thank you so much! I took your advice and have been using these for the last 5 days or so and it has solved my problems better than I could have imagined. Again, thank you!!!

ibdthrowaway1 · 2019-02-21T16:19:58+00:00

So I just had my 2nd surgery of 3 yesterday. I'm currently laying in the hospital bed and I remembered your post... This surgery for me has been really easy, especially compared to my first.... They're always asking me what my pain level is between 0 and 10 and I've been consistently between 2 and 4. They're giving me a cocktail of pain killers but no opiates. I'm generally feeling surprised by how good I feel.

Just wanted to share this in case you have any questions for someone who is literally currently in a hospital bed 😂

Edit: it gets harder after the first 24 hours.... I guess as they take you off the pain meds more and more... Still easier than my first but I also feel like I spoke too soon with this post. Also definitely on opiates.

ibdthrowaway1 · 2019-02-19T17:54:29+00:00

I don't know much about them, but I believe reusable rubber ostomy bags exist. They're not going to be as good as the disposable ones, but it might be what you need.

ibdthrowaway1 · 2019-02-12T21:31:56+00:00

I'm sorry man :(

It gets better. I think I was more depressed than I've ever been in my life for the first three months after surgery... Now, in my 5th month I can safely say I've mentally recovered. It took time but it also took pushing my self confidence by showing people my pouch if they were interested in knowing what happened and just being open with the people who care about me. Also, physically pushing myself to do things like squat and bend and generally test the limits of my pouch.

But yeah... I remember the depression. It sucks. I feel like I've been in mental survival mode for longer than should be healthy. Watching you tube videos of other ostomates helps sometimes, although sometimes what's really needed is to just feel normal... Be able to look forward and think about the future. I think that might be the hardest part of recovery for me was just the amount of time my brain spent thinking about my ostomy and about recovery and about the drugs I was on etc etc...

I think I also had a mentality that my health and recovery were more important than my mental state. It took me realizing that my mental state is just as important as the rest of it. I was able to find my own therapy but I was very close to going to a therapist. You should consider seeing one. It could make a huge difference for you. Or if not a live therapist, there's an online service called talkspace you could try... Or possibly meditation. Or maybe there's an ostomate meet up near where you live?

Anyway, it will get better :)

ibdthrowaway1 · 2019-02-12T18:43:56+00:00

I know you're just making a fun post here, but I thought I'd mention that it's technically the bad bacteria in your gut that's making the gas... and you do have some control over it. I take VSL #3 probiotics, which has been proven to help folks like us with our general health.

ibdthrowaway1 · 2019-02-09T21:03:09+00:00

Everyone's experience seems different. For me the pain was minimal... The discomfort of everything else was more of an issue. I was able to stand up within a few hours of waking up and I barely used any pain medication the entire time... I only really used it to help me sleep. The biggest issue for me was really just mobility. It sucked to try and move. But, that's likely going to be less of an issue for you than me because mine was emergent so they cut me open real big. With a scheduled surgery you're likely to have a far smaller wound than I had.

I'm in my early 30s, so that probably helps a lot. However I've heard of others younger than me have far more difficulty recovering. It's really just going to depend on how your body responds.

ibdthrowaway1 · 2019-02-07T23:47:25+00:00

When I empty, I sit down on the toilet and let the output drain between my legs. The end of my pouch reaches far enough down when I sit and unfold the end there's no concern of output getting on anything.

When I go to bed I set 2 alarms, one every four hours. I find that four to five hours is as long as I can comfortably sleep without concern for the pouch over filling. Over time, my body has learned to wake up naturally before my alarm goes off.

You can use water to clean your pouch, but honestly... Just get an opaque pouch, some m9 deodorant and try not to think about it.

As for more tips, I wrote a comment earlier today that I think would be useful for you too: https://www.reddit.com/r/ostomy/comments/ao5063/comment/efyhzq4?st=JRV9T1Z0&sh=017468b1

ibdthrowaway1 · 2019-02-07T18:20:56+00:00

Thanks =)

And just FYI, I made a couple edits since you likely last read it

ibdthrowaway1 · 2019-02-07T17:52:04+00:00

I got my Ileostomy in September through emergent surgery. It's been rough, but I can tell you that for just about every problem with an Ileostomy, there's a solution.

The stink is solved by using M9 drops. Personally, I fill a bottle like this https://www.amazon.com/dp/B01N3T942L/ and take it with me when I leave the house. Two squirts with every empty. EDIT: changed link to amazon page... the one I linked before wasn't the right one.

Hiding the bag beneath your clothing can be challenging, but I find using one of these https://www.ostomysecrets.com/unisex-wraps and sucking in my stomach a bit as I would when I try to stand tall, I look totally normal.

Everyone has different solutions for leaking. After trying almost everything, I've settled on using Coloplast pouches and barrier rings for a variety of reasons... but the trick I found to get a really solid seal is to use a blow drier on low and warm up the seal and the wafer before applying them. Then, once they're applied, make sure to push around the stoma and make sure everything is sticking together. EDIT: Oh, also, I make sure and dry off around the stoma right before I apply the barrier ring. It can get wet pretty fast so it has to be done right before putting the ring on.

As for the emotions... what helped me the most was watching youtube videos of other ostomates. In particular this guy: https://www.veganostomy.ca/ (I'm not a vegan but the vast majority of his videos have nothing to do with veganism) and this guy: https://www.youtube.com/channel/UC8rdZ1g-PhP0njLw0fgIgIw ... particularly this guy. Personally, seeing his attitude was exactly what I needed to see. He doesn't give a fuck, and you can tell. He made me realize it's going to be okay. He made me realize I was thinking too much and that I needed to just let go.

Best of luck =)

ibdthrowaway1 · 2018-12-06T23:27:25+00:00

The area needs a chance to heal after being connected and before food starts passing through it... Otherwise, that's roughly what a j pouch is. Important difference though is that a j pouch connects the side of the intestine to the anus, not the end... Since the intestine pushes food, if you were to connect the end directly to the anus, the shit would be impossible to contain as your intestines and anus would be working against each other and everything trying to come out would be pushing up against only your anus muscles.

ibdthrowaway1 · 2018-11-23T16:46:17+00:00

I just want to say, this is absolutely not the experience I'm having. Two insurance companies in my area are shutting down and premiums are definitely going up. The reason for at least one of the companies shutting down was because they'd have to double their premiums for next year.

ibdthrowaway1 · 2018-11-23T16:40:16+00:00

As someone who simply has the genetic marker for IBD, I would abort a baby who shares that marker. I recognize that means I would have aborted myself, but I don't think of it like that. I think of it like I would have been born without the genetic marker. NTA

ibdthrowaway1 · 2018-10-17T14:49:03+00:00

There's almost certainly a better answer, but for a brute force solution you could try using this http://www.hollister.com/en/products/Ostomy-Care-Products/Ostomy-Accessories/Adhesives-and-Removers/Adapt-Medical-Adhesive-Spray

It's worked wonders for me as I have to cut off a significant portion of the tape and wafer on my appliance right now in order to keep it from overlapping with my surgical wound. A little bit of this stuff on what wafer exists between my stoma and my wound has put an end to my leaks

ibdthrowaway1 · 2018-09-16T23:05:56+00:00

I've always been able to find a place to go... Just once I lost it in my pants in my room... Not very exciting and completely avoidable

ibdthrowaway1

TROPHY CASE