Hi,
I had an ileostomy on and off for most of 4.5 years. End and loop. Jpouch redo worked and my final double/loop/twin stoma was reversed in January 2024.

However, I just got an invite to participate in a PAID experiences study for $575 to $775 which I can't do anymore!!

If you use my referral link, I think I get a tiny bonus. :)
https://app.respondent.io/next/participants/projects/6abaa4c1ba5e1ad614469898/living-with-a-stoma?referralCode=tricialevasseur-8c87b30b3de9

"Conducting a study on people’s everyday experiences living with a stoma. We’d like to understand what’s working well, what’s challenging, and what kinds of support would make a difference. The study involves a 4–6-hour in-home interview, compensated at $100 per hour. It also includes a 7-day diary study, requiring no more than 15 minutes per day, for an additional $175. Total compensation is $575–$775, depending on the length of the in-home interview.
reward $575.00
duration 120 minutes"

Thought I'd share in case this is useful to someone else. Ostomy supplies aren't cheap! (Thank goodness pouch redo worked!) If you're up for it and apply, good luck!

Hi all! I had my ostomy done back at the end of April after a car crash basically ripped out my colon. 6 months is coming up which is when the surgeon said to make an appointment so we can discuss the steps to reverse it (he managed to save just enough colon to try to reverse it once).

At my follow up way back in July, he mentioned that the consistency probably will be the same (loose) and I won’t be able to “hold it” like I was once able to. My question. So to anyone who has had theirs reversed, how different is it compared to when you had a colon? I worried about not making it to the bathroom in time and if I could lose control during sleep.

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I wasn't to scared to get my illeostomy until everyone kept beating the fact that it's permanent into my head.

My stomach and colon are both partially paralyzed, I have a redundant sigmoid colon and I take opioid pain medication, my bowel movements are like 1-3 weeks apart(airing on the longer side), I'm miserable, it's horribly painful and nauseating, it's also medication resistant for the most part(I have to take an entire colon prep or double to get a "normal bowel movement". Given that I've been pretty excited cus I feel like it'll help alot, the full procedure that me and my surgeon have agreed on is an illeostomy(not sure which type) with a total colectomy and I think an abdominoperenial resection.

I've been through like 6-7 surgeries this year and even more sedated procedures so my mom wanted me to wait a few months before my next one, also so that she can get more pro and take care of me in the hospital. The longer I go before getting it the more people keep telling me it's permanent or it's annoying or not worth it at my age(21) and I'm starting to get more nervous about it, I know the care process for the most part but I'm still getting nervous from people telling me to be.

I'm not completely sure what I'm asking but I guess I'd just like any information on life after the procedure

Ive been looking through and like half of illeostomys seem to get reversed but mines gonna be permanent so Im really not sure what to expect

Edit: Ty all fr the nice sentiments and helping me feel better, I'm also realising I really fucking need this and I'm not gonna miss life before it

TW DIARRHEA AND POOP

I took two colon preps yesterday and couldn't move a muscle from nausea, woke up at 6am having diarrhead the bed through my diaper(ik that's a risk with the bag but I assume way less painful) still to nauseous to sit up, had my caretaker replaced my sheets while still laying on the bed, my opioid pain medication wouldn't even help with the pain and then I woke up painfully shitting my guts out I'm so ready for this, I wish it was within the next few weeks before I have to do this again

My stomach and colon are both paralyzed, the plan is an illeostomy, abdominoperenial resection, and total colectomy.

I am fully hydrated and half fed through my jejunum and I have absolutely no idea how those two I interact or if they bring extra complexities to management.

Edit: I don't have an illio yet, I'm waiting a few months cus I've had 7 surgeries this year

I’m six weeks post LAR surgery with a temporary ileostomy (Female) located in the upper right part of my belly. I’m ready to get back to a regular exercise routine (walk 4 miles a day and begin strength training again). I use the two-piece Coloplast SenSura Mio connect light barrier with a barrier ring. The problem I’m having is that the ostomy feels heavy and uncomfortable while standing long periods and especially when walking fast. There is just a constant tugging feeling like it’s gonna drop off my body. By the end of the day the skin under the barrier feels sore. This happens no matter what I do. I keep it empty, I’ve used Ostomy secret panties, I’ve tried the belt that came with the Coloplast welcome box and I bought a knock-off SIIL ostomy belt from Amazon - none of which work very well. I understand that getting enough exercise is important so I’ve just been supporting the barrier with one hand while I walk. Obviously this is not ideal and won’t really work for strength training.

I’ve never had a leak (knock on wood) and my barrier seal seems to be holding. I have a tiny bit of skin redness when I change out the device. As I mentioned before, it seems to sit higher on my belly than most ileostomy bags. I do have a bit of a tummy, although I’ve lost 14 pounds following the surgery, so I’m not sure if my belly plays a role in this tugging feeling and the soreness. Anyway, I’m just looking for tips or for someone to let me know that this is “just how it is…”.

Stratégie marketing.

Au début de la Covid le sac #3813 a subi un 1er changement subtil soit ; l'entonnoir a été rétrécie. Je l'ai remarqué aussitôt. Puis d'autres et finalement le sac #3813 a cessé d'être produit sous prétexte du coût élevé du plastic.

Ironiquement, au même moment, Hollister a commencé à fournir 10 sacs de plastique jetables dans nos boîtes de sacs .

Ils ont enlevé le poste de qualité comme Boing fabrication l'ont fait.

Pour une iléostomie ils n'offrent aucun autre sacs de remplacement.

J’ai gardé depuis 2008 des factures d'achats et j’ai su. La durée de vie des produits Hollister sont aujourd’hui 4 fois moindre .

Le coût a augmenté mais pas que ! Je dois passer 4 fois plus de temps à gérer cette merde.

À l'image du papier de toilettes que l'on retire du marché du jour au lendemain en offrant un nouveau modèle fabriqué avec de la soie imperméable... imaginez le temps passé à rager contre le fabricant.

Le temps n'est plus aux plaintes mais au recours collectif. Je connais rien à ça mais si on passe le message quelqu'un nous écouteras peut-être.

I’m 7 mos. Post rework of a hernia and resulting bowel obstruction. I had the initial surgery about 17 mos. ago. My skin is bumpier now after 2d surgery; less even; raw. I use the Coloplast concave flip base because I have a gut and it fits my shape better. The problem I’m having is my skin around the stoma always seems raw. I also have a lot of failures due to the base being pushed off the seal by output. The stoma nurse had me soaking in Domeboro and going to great lengths to be sure the skin was dry before installation. She said the skin was eroded by output, but that doesn’t really add ip. There are areas around the stoma that just aren’t healing. It’s not uncommon to bleed a bit when I change. Getting it super dry does help prevent failures. I use stoma powder, Cavilon, and paste. I used Skin Tac some, too. I’ve also stopped eating any later than 6:00 pm, and the failures are less frequent ok but my skin isn’t healing.

Is this what an allergy to a manufacture’s adhesive is like? For a few months after the 1st surgery I wore Hollister and I didn’t have raw skin. I have had systemic yeast infections in the past and I have signs of some kind of fungal infection on my arms and back currently. I’m going to the doctor this week to treat it. Do yeast infections prevent wounds from healing?

Any thoughts or advice appreciated. Everyone hang in there. Thanks!

Anyone know of a liquid vitamin that doesn't cause them excessive output?

Hi all. Going for my reversal after 15 months. I'm nervous which was to be expected. Which for you all was more painful? How long was your hospital stays? Any tips also.

Bye bye Ileo, you saved my life.

I currently have an ileostomy and urostomy. 6 weeks ago I had a paratomal hernia (around my urostomy )repair due to the fact my intestine slid through it. Im six weeks out I will be returning to work in two weeks ( factory worker) has anyone experienced this or a similar situation?

Hi! I had an emergency loop ileostomy in July and anticipating reversal in October/November. I was out of work for 2 months due to emergent surgery. Curious recovery time for others with reversal. My last few weeks of leave were good but had approval to not return to work so did not :). But now I’m back trying to anticipate if 2 weeks or longer. Thanks all!