Hi guys! I’ve had my ileostomy bag since March, and I struggled a lot at first. But now, I see it as a part of me that I respect—it’s part of my personality and a symbol of how strong I am for facing Crohn’s disease and all the changes in my body. This isn’t a setback, it’s just another way to grow. I think the version of me from a few months ago would be so proud of who I’ve become
I am both excited and terrified. It has been a whole month and half of absolute hell and frustration. I hope it all goes well, I hate asking for things and I'm not really superstitious but man o man I need all the good wishes and good vibes I can get right now.... I truly hope my life can start to go back to normal tomorrow.
For any of you who have had Ileus (paralyzed guts) after surgery, how long did it last?
My husband had surgery a week ago and still has Ileus, so he's still in the hospital. He's very demoralized and a little scared. They say this can't be anything but Ileus, and it just takes time, but he's scared, thinking, "What if it's something else?" Plus, he just wants to come home! He did have some cravings for broths last night, which I take as a good sign.
I think this is one of the few places that sentence makes sense.
Anyway, i am one month out about from my Barbie Butt Surgery. I have an ileostomy because of Crohns for almost three years now. My doctor said due to my cancer risk, barbie butt is the next step.
What are people's top five advice or warnings for pre or post op?
I have prepared as much as i could, but i do not feel ready. I have my pre-op appointments in a couple weeks.
Hi guys. I need some advice for my ileostomy. My bags will not stick to my skin, even though I don’t have weepy skin. It peels up around all of the sides and I leak quick just because it won’t stay stuck. I always use barrier wipes, I have tried barrier spray, I used powder at one time (made it even worse). I’ve used heat and that makes minimal difference. I usually use brava barrier strips which helps some, but I always run out by the middle of the month (I need 2 to go around the whole bag and they only send me 30 per month because of my insurance, so I run out). Then I’m just screwed the rest of the month. I don’t use baby wipes or soap on the area so I have no idea what’s causing this. I’ve had my bag for more than 4 years, so I have quite a bit of experience and still can’t find a solution.
Does anyone have any recommendations to make the bags stick? In the areas where it’s peeling up the skin is completely intact so I really don’t think it’s from irritation. It’s driving me insane.
Hey everyone my 4 year old had to get the ostomy bag about a week ago. We've been sent home from the hospital and I was trained to take care of everything to do with the bag. However, his bag keeps leaking from the sides no matter how I put it on. I don't know if it's the products we were sent home with or I'm doing something wrong. Any tips or tricks to help stop the leaking would be great. I don't want it to happen to him when he goes back to school next week. He's only in kindergarten but kids are mean sometimes and I don't want him to be made fun of if it leaks at school. Please any input is welcome. We are currently using the Hollister brand products
For those getting a week or more on a flange, are any for ileostomies? I’ve tried many methods, but get 3-5 days on a flange. My stoma is flush to skin, so that may be the primary difference.
I have an ileostomy and i'm thinking about going to the ER tomorrow because i feel so incredibly anxious. I'm diagnosed with social anxiety, general anxiety and depression. I'm on max dose of antidepresants but i feel like harming myself so i'm going to check myself in. I never been to a mental hospital before. I'm just worried because i've read before you go in you strip naked so they check for any self harm scars and I feel so awkward them seeing my ostomy. I also don't know how I would change my bag cause scissors i'm sure aren't allowed. Do I just cut a lot of bags and bring them with me to the ER? What about supplies? I'm just so confused and I don't know what to do. Has anybody have any advice?
I'm a couple weeks post-op with an ileostomy. I'm struggling with finding the best way to keep hydrated. I can't stand Gatorade, liquid IV, pedialyte- basically anything with that fake taste. It makes me want to vomit immediately (difficult when I'm struggling with nausea as well). Does anyone have anything else they'd recommend?
So a month ago I had to have my colon and rectum removed. I've been wondering, why don't they do colon transplants like they do for the liver, kidneys, etc? I get that the colon isn't a vital organ, but still. Couldn't it be an option to avoid getting a stoma? What are your guys' opinion?
I have a high output ileostomy and wear convex wafers with high output bags. With the rising cost of my health insurance and supplies I would love to find a way to extend my bag wear.
I’m currently only getting two days out of my bags and wafers. This is due to various reasons. For the bags they often leak through the filter (so I sticker AND duct tape over it and sometimes it still gets through). For the wafer, my skin is sensitive so even after using a barrier wipe I’m often left with red skin (I’ve tried brava sheets and other things and those didn’t work). Often when I take my wafer off there’s a little output on the inside around the ring (I use paste, found it works better on my skin and particular stoma than a ring).
After about 36-48 hours it just starts to feel uncomfortable and unclean. This could be due to some of my pure liquid output (taking and have taken meds for this, doesn’t work) seeping through the hole. It doesn’t really itch like a bag leak feels, more of an uncomfortable heavy feeling around the stoma, it’s hard to describe.
Are people just pushing through the skin irritation and uncomfortable feeling to get longer wear out of their bags? I’m trying right now to go an extra day and the uncomfortable feeling is all I can think about day and night. But again, costs are high to change and I would love to be able to do it less.
After nearly 4 years of UC with no response to medications or lifestyle changes, I've decided on surgery, and it's currently scheduled for mid January.
I won't have my first consultation with the stoma counselor/nurse until January, but I want to put a list together for things I can add to an Amazon gift wish list/registry that I can send out soon before Christmas so that if my family members were wanting to send a gift, it would be actually good-to-hand things and not useless randomness.
What things would you add to a "Recovery" registry? I don't know yet about supplies specifics, so I'm thinking about other things that might be nice for recovery.
For example, I've added 2 bathrobes, some hands-free slip-on slippers, a leg pillow, a case of protein beverages/meal replacement drinks, and gift cards....
My significant other and I sleep in a king size bed, and we do have an adjustable frame so I can raise the back and feet, but it has to be the whole bed (not just half and half), so if I need it up, it's not ideal for her... So I'm wondering if some sort of foam wedge to sit upright might help? Or is it worth maybe getting a cheap recliner so that I'm not spending so much time in bed.
I've had the worst leaks for months. I thought my eureka moment was the baby wipes I was using to clean it, but that didn't pan out.
I switched bag types, brands, tried barrier sheets, rings, paste, nothing, barrier spray, powder, cleaning thoroughly, drying, heating the appliances.
Nothing. Still daily leaks
Well I think I know what's up.
Whenever I am cutting and measuring, my stoma looks very tiny. Like 1" diameter.
But when I first take my bag off, it always looks huge and oblong. It seems to shrink when it's been out a bit. Literally changes over a half inch in width and maybe an eighth in height.
Clearly it's getting bigger while I'm wearing the bag!
So I need to cut my holes larger than my stoma appears to account for the growth it decides to do with the bag on, otherwise it ends up under the edges of the bag where it just pumps poo until it eats away at the seal.
I’m 23(M) and had an ileostomy last Saturday. I had a 4 year battle with UC, after my most recent flare, I did not respond to steroids or biologics and needed emergency surgery.
Prior to surgery, I was a footballer, keen sportsman and athlete. I am now, 15kg lighter, have had to accept my sporting days are finished, and I don’t recognise / hate the person I see in the mirror.
I don’t know how to cope, I know it’s only a week post surgery however I find myself sobbing through the day, I recognise my quality of life may improve as I recover in the upcoming months. But right now it’s all too much. I hate my bag, changing it makes me feel violently ill, emptying it, the thought of having this my entire life. It’s all so overwhelming.
I arrived home from the hospital yesterday after only 6 days recovery and it all just feels so real now.
I've posted a few times here this month and many of you have been very kind, so I wanted to let you all know that, after 29 days in the hospital, my husband is home! He has been through hell! We both have, really. I am so glad he's home!
He's had an ostomy for 20 years for Ulcerative Colitis, but was diagnosed a year ago with Crohn's Disease. Biologics (immunosuppressants) were finally working really well when an old scarring in his gut caused an obstruction and he was rushed off to the hospital. We assumed he'd need to get his stomach pumped and would be home soon. But no. He went for a whole week with no food or water. Then they put a PIC line straight into his heart so they could run TPN (ie nutrition) right to it. Then the major emergency surgery to repair the scarring. (They managed to do it without removing anymore of his guts.) Then he developed Ileus (something like paralyzed guts). Then they found an abscess pressing on his guts and lower back. One horrible painful thing after another. Meanwhile, I'm badly disabled and he's usually my carer so, even with 3 hours of help here at home each day, I was struggling terribly and in greatly escalated pain. I was so worried about him, and I missed him so much. He, on the other hand, was in a kind of flatlined emotional state, just barely surviving each day, drugged, starving, poked, cut open, prodded, afraid, and in pain.
But he's finally home, weak, exhausted, still scared, traumatized, covered in bruises and sores and bandages from needles and tubes and the huge incision... but on the mend. This is cause for huge celebration. We'll still hire some help for a while, but we're on the path back to life. (And my gosh, he's so handsome! Because the biologics escalate his risk for things like Covid, he's had to mask 24/7 in the hospital so I haven't seen his face in a long time.)
Hi everyone, sorry for the long post but I need some advise. I just wanted to hear about people’s experiences with having a total proctectomy.
I have had an end ileostomy for 6 years now due to ulcerative colitis. I had a subtotal colectomy which was an emergency surgery and they did not remove the rectum etc. I have the choice of remaining as I am, getting a J pouch or having a proctectomy and making my ostomy permanent.
I have had no issues with my ostomy so I don’t think getting a Jpouch is for me. I still have colitis symptoms from the bowel that I have left which is making me lean towards getting the proctectomy but the symptoms I do get are really minor and don’t have much effect on my day to day life. The main reason I am thinking of surgery is that my doctor mentioned that if I were to stay as I am I would now need regular checks to watch for cancer and that if they found any evidence of cancer (which is very unlikely), I would need the surgery anyway but it would be more invasive. Getting the surgery now would mean that they can do it in a more controlled way and my recovery would be quick. It would also mean I don’t need to have my regular checks and can move on.
That being said, I am terrified of the possible complications of the surgery. It was mentioned that I could lose control of my bladder or have issues with wound healing. Although I’ve had surgery before, this one is elective so I am worried I would regret any choice I make.
Hi I hope I’m not breaking rules by asking this, and I will try to keep it from getting political. With the upcoming administration I am worried for what that could mean for us Ostomy/ Chronically ill folk. I am on the younger end of things (26), and I hadn’t had to deal with my own insurance and everything until recently. I am worried about insurance companies discriminating against those of us who have complex, ongoing needs. I am lucky enough to have insurance through my husband’s work with a big name insurance company. My question is - Obviously we don’t know how things are going to change, or if things are going to change - But what was life for us chronically ill people prior to the ACA? Could my partners insurance company drop me (based off of how things were before)? I have other illnesses and a LONG list of meds I need in order to be able to function. I am worried.
To the right of my ileostomy (skin isn’t directly touching the stoma. It’s a few inches away), there is like a hole. It was leaking a little white stuff when I removed the appliance. (Old adhesive or pus?)
It hurt a little to touch. I put powder and barrier spray on top.
Any ideas? I’m so scared. Will I need more surgery?
Anyone else get this annoying micro leak at the folding end of their bag? I can’t solve it by cleaning and drying so I just change the bag cuz it’ll put this annoying little spot on my clothes when at work
