r/Ileostomy

My mom is having her reversal surgery this week and I am trying to gather supplies she may need. I'm searching thru this group for suggestions, but am also wondering what type/brand diapers do you recommend for #2 accidents (I'm also familiar with baby diapers and with adult Depends (which seem to be more for pee accidents?)?

She's in complete denial that she'll need anything. Her surgeon is good but he overemphasized what a breeze the whole thing will be, so she's brushing off my trying to tell her that she may have a lot of urgency and go #2 often and should be ready for that, so I'm just going to have some things ready for her. Thanks for any advice you can give

So I have my ostomy due to a car crash that destroyed my colon. They were able to save just enough to try to reverse it. 6 months is coming up, which is when I was told to call so we can start making plans.

When I saw the surgeon during my follow up in July, he mentioned that the consistency would probably stay the same and I wouldn’t be able to “hold it” like I once had.

So to those who’ve had reversals, what is it like? I’m worried about not getting to the bathroom in time or losing control during sleep.

They have gone absolutely terrible! Cheap plastic, opening keeps leaking and the velcro type stuff doesn't stick like it used too. Glue isn't eventually spread on the flange anymore.

I genuinely thought I got a bad box/batch but I'm on the third box now since before Xmas ish and they have all had something wrong.

Ever since cera plus or something showed up on the box they have gone terrible. The company clearly doesn't care about there customers..

I'd immediately switch to coloplast if they would stick to my skin. They even have colours and an extra bit of velcro to keep the bag outta the way during sex and sports and that..

First post as a returning ostomate here (ileostomy). Crohn's disease since 2005. Had an ileostomy back in 2018. I have another now. My memory is a bit foggy but I don't remember having this problem...

When I install a new bag I find that by the next day a sort of volcano forms around my stoma. Like the edges of the appliance closest to my stoma lift up. The first few times this happened, my skin underneath was fine but not the last time.

I do keep my hand on the fresh appliance for a few minutes to help it and the barrier ring stick as advised. Has anyone else had this problem? If so how did you resolve it? All advice welcome!

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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

Bonjour à tous,
Ça va faire maintenant presque six ans qu’on m’a diagnostiqué une RC H donc là aujourd’hui j’ai 22 ans et j’avais 16 ans qu’on me la diagnostiqué et tout et aller très vite pour moi car un an plus tard à 17 ans, j’ai dû subir une ablation du colon car je ne réagissais aucun à traitement. J’ai eu une iléostomie pendant trois ans et pendant ces années là tout était stabilisé dans ma vie j’avais pas de symptômes et je pouvais manger ce que je voulais, mais après socialement pour des questions de regard sur moi-même et d’un confort personnel, j’ai décidé de franchir le pas et de subir une anastamose ileo anal, c’est-à-dire une ablation du rectum et une reconstruction d’un réservoir avec l’intestin grêle pour remplacer le rectum et qui est moins fonctionnel. Ça fait donc maintenant un an et demi que je vis avec ce nouveau réservoir et je vis plutôt bien, je vais à la selles entre deux et quatre fois par jour en moyenne, ni plus ni moins sachant que voilà je peux manger beaucoup de choses sans souci et et je mange beaucoup, mais j’ai une alimentation très saine ou j’évite les produits transformés le plus possible et j’avais plusieurs questions. La première, c’est que à même après j’ai du mal à évacuer les gaz, c’est-à-dire que quand je suis debout ou en position verticale, je suis incapable de sortir les gaz et le seul moyen que j’ai trouvé c’est de me mettre à l’horizontal et de lever une jambe parce que sinon je n’arrive pas à sortir les gaz et surtout, j’ai du mal à faire la différence entre gaz et selles. Ma deuxième question c’est est-ce que ça vous arrive aussi pour les gens qui ont subit la même opération d’avoir d’autres manifestations inflammatoires à d’autres endroits du corps exemple j’ai souvent des espèces de kyste qui qui pousse au niveau de l’arrêt des fesses au niveau des aisselles, mais qui s’en vont et qui reviennent, et j’ai également un gros problème de cuir chevelu avec démangeaisons et des pellicules. Donc je cherche un peu des témoignages pour savoir si d’autres gens ou ce genre de symptômes qu’elle est un peu la qualité de vie des gens après cette opération pour me comparer.
Après je sais également que mon histoire est particulière et peut intéresser beaucoup de gens et suscité beaucoup de questions. Donc si vous en avez n’hésitez pas à me les poser, je répondrai avec plaisir.
Merci de votre aide.

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…”.

I’m trying to learn what life with an ileostomy is really like, particularly from people who had one because of severe/refractory constipation. I have both pelvic floor dyssynergia causing outlet obstruction and slow-transit constipation. I’ve already tried pelvic-floor PT, puborectalis Botox, and most, if not all, of the medications and laxatives typically used for constipation.
At this point, my current regimen only “works” by essentially creating a medically induced high-output state. In some ways, it feels like I’m trying to accomplish what an ileostomy would accomplish, but without actually having the surgery. So I’m looking at an ileostomy as a tradeoff: Stoma + appliance care + the hassles of having an ostomy vs. less dependence on extreme bowel regimens, medications, and repeated rescue clean-outs. I’m trying to figure out whether that would actually translate into a better quality of life. I’d especially like to hear from people who have had an ileostomy for slow-transit constipation, refractory constipation, colonic inertia, pelvic-floor/outlet problems, or some combination of these. What is day-to-day ostomy life actually like? Things I’m particularly curious about: How often do you deal with leaks? How much of a problem is skin irritation? How often do you normally change your appliance? How difficult is it to manage supplies? What about odor and gas? How much do you have to think about hydration and electrolytes? Does the ostomy interfere with travel, restaurants, social activities, etc.? How long did it take before caring for it became routine? Are there things you can do now that were difficult or impossible before surgery? Conversely, what do you miss about not having an ostomy? And probably most importantly: did your overall quality of life improve enough that you would make the same decision again? I’m particularly interested in the less glamorous realities that might not come up during a surgical consultation—the annoying, inconvenient, embarrassing, or unexpectedly easy things you only learn after living with an ostomy. If you had an ileostomy specifically because of refractory constipation, would you do it again knowing what you know now? Thanks in advance. I’m trying to make a very consequential decision and would really appreciate hearing the good, bad, and ugly from people who have actually lived it.

Has anyone done hyperbaric oxygen therapy? My surgeon cleared me to do it, I had surgery 9/16 and it’s great for wound healing and post surgery recover.

I really want to start it, but I’m nervous about using Hollister or coloplast products in the chamber.

Some of them say they are flammable and I called both Hollister & Coloplast suppliers and there are no “studies” on using them in the chamber so they “can’t recommend them”.

My surgeon said I could use it for healing but I would have to ask Ostomy clinic, HBOT director and ostomy suppliers if it’s safe.

I contacted them all and they said to ask a different person so no one really knows.

Can someone please tell me if you’ve done HBOT with an ostomy; and what supplies you had when you went in so I know it’s safe?:) right now I use Hollister Ceraplus one piece 8091 and the Ceraplus adapt barrier ring. Thank you!

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.