r/ostomy

Hi folks and I hope you're having a better Sunday than I am!

I woke up yesterday morning with pain around my stoma, which I have attributed to some air fried chicken thighs the night before. Since then I have had some output, but the pain persists.

I stopped eating after lunch yesterday to avoid making things worse and I feel like I've tried every trick I know to clear it;

Had a bath

Massaging around the stoma

Walking

Fizzy drinks

Hot drinks

I'm just after any other ideas from anyone that's had the same situation? And also does anyone else struggle with eating chicken?

I will get an appointment with my stoma nurses tomorrow, I don't fancy spending 12 hours down my local a&e today for them not to be able to do anything.

Tia

I posted on here earlier last month about my impending surgery and my utter dread to think about it !

Events have now moved on apace and I have my pre-op and consultation with the stoma nursing team this Tuesday.

I also received a letter from my surgeon yesterday advising that the surgery will happen with the next couple of months-likely sooner!

I will keep you posted!

Hi everyone,

27F, UK based - have decided it’s probably time to break up with my colon. I have FAP, no symptoms or problems from my polyps ~ I don’t even have IBS ~ but my polyp burden isn’t sustainable.

I have 2 options for surgery - IRA or stoma/barbie butt. I’ve already ruled out J-Pouch due to family history and witnessing all the negatives and few positives.

Unfortunately, all surviving members of my family with FAP have been diagnosed with adenoma’s following surgery, one in the remaining colon leading to a permanent stoma. I’m just keen to hear as many experiences as possible as appreciate it might seem extreme to go from a completely “normal” functioning bowel to none at all.

Tia.

If anyone would like to try an app I'm developing here it is it's free no money is being made I just want to know if it can help anyone

Does anyone know any really good tips to prevent pancaking? I use the Coloplast sensura mio click 2 piece closed system. I cut the filter out. I put aquaphor and lubricating deodorant in my bag but all of my output stays stuck up by the stoma/at the top of my bag and nothing works. It’s annoying because I have to keep switching out the bag to prevent it from leaking when it’s not even full. I also have to wipe off stool from around my stoma/wafer because it gets stuck in there. I can hardly push the output down to the bottom of the bag. Any tips would be appreciated.

I've had Crohn's for 35 years and a stoma for about 20. First it was colostomy and then last summer, due to a severe abcess and disease the rest of the colon was removed. It's been a roller coaster ride throughout the years between good health and bad. Last summer was a turning point when it seemed the Crohn's was finally under control after the removal of the colon and since then I really haven't any Crohn's related symptoms. However, I've had 2 ostomy revisions since that surgery last summer due to prolapse. Once was only a couple of months after the initial one and the last was this February where it was reinforced with mesh. Here we are almost two months later and it appears that the opening and length is beginning to get larger again. I guess I'm on my way to yet another prolapse. I was told there is one more procedure called the sugar baker technique that could be used but I know the scar tissue in there is probably extensive and there's no chance of anything being done for at least a year. I can't seem to figure out why this keeps happening, but has anyone else had this problem time and time again?

This question is a little different. I have seen Ostomy spelled with an I (Ostomi) or a y (Ostomy); even the spell checkers from different programs don't agree. Do any of you know why?

I realized something today. It isn't the bag that bothers as much as the scar down my stomach. I couldn't even look at it at first. I covered it even after they said I didn't need a dressing anymore for a while. I envy those that got laparoscopic surgery.

Hi Everyone! (25F)

I'm new here but was recommended this subreddit by my stoma nurse. I have had a diagnosis of Ulcerative Colitis from age 16, and multiple complications later, I finally made the decision to have a Sub-total Colectomy with End Ileostomy. My surgery is early Monday morning and I am currently writing out a plan to follow tomorrow, (with preload drinks etc). I am unsure about what foods are good to eat the day before surgery, I don't have to start fasting until midnight Sunday (tomorrow), and my surgery is at 7.45am Monday. Does anyone have any suggestions about good last meals that won't upset my colon too much? Also just any general tips about surgery/recovery are greatly appreciated, as I'm pretty nervous! Thank you c:

I got my ileostomy in october, and while sometimes I genuinely love it in my "healthy" phases, it's also been trying to kill me ever since I had it.

Two weeks after my ostomy surgery, I developed my first blockage. Had that treated conservatively at the hospital for like a week. Just a few days later, the next blockage, again treated conservatively at the hospital. When I came back for the third time another few days later, same issue, they told me I had developed a stricture at the fascia around my stoma and I had emergency surgery where they revised my stoma. Two weeks later I'm back in hospital for another blockage and had emergency surgery again, where they revised the stoma and widened my fascia.

Since then, I've been good for like four months, although I developed some new symptoms / feelings around my stoma which gave me terrible health anxiety but I forced to convince myself that they are just normal sensations. It started with pressure behind the stoma, then progressingly worse pain when output was passing. Around a week ago, I developed blockage symptoms again. They were not as bad as my previous blockages because sometimes I still had a bit of output, so I tried to wait it out.

Yesterday I decided I was done with it and headed to the ER again, where they told me that I'm not an emergency and that I could go back home. However, they offered me to stay over night ("if that calms you"), which I accepted, kind of hoping that I would get "bad enough" to be taken seriously. They gave me enemas and at first, these made things much worse. I was in terrible pain again and got super sick because output just kept building up behind the stoma. But then the output was so watery it managed to squeeze through the stoma, which relieved my pain (made my terribly dehydrated tho). This morning, they told me I should go home since they deemed my condition stable. I explained to them my concerns (they know my history) and that it really feels like another stricture, that those issues were buiding up over the last few weeks, and that I expect it to get worse as soon as I start to eat again. They told me they can't do anything since it's not an emergency and that I'll probably be fine, that I should get in touch with a dietitian because probably I'm just eating the wrong things. That the likelihood of developing so many strictures is basically zero. They never did any imaging, not even palpated it with a finger like they did the last times. However, I was so done with everything, I was just happy to go home and enjoy a few painfree hours.

Well, here I am again a few hours later, in the exact same position I was yesterday: Crampy pains that come in waves and very little output. I called the clinic and they told me that they can't give me an appointment and to go to the ER if it gets as bad as when I last had my surgery. I really don't know what to do now. Do I really just "wait it out" until it magically disappears or developes into a life-threatening emergency?

As ostomates, we might as well actually live with this thing… not let it run the whole show, right? I made this compilation of some of the advice I wish *I* had when I first was adjusting to life with an ostomy.

Hoping this finds anyone just getting started, or even the seasoned pros who could use a little boost. I know how overwhelming it can feel in the beginning, but you’re definitely not alone in this… we’re all figuring it out together.

i always cover the bag filter and just burp my bag so it couldn’t be the filter, i don’t see any parts of the bag lifting from my skin and there’s no leakage and i’m going crazy trying to figure out why there’s still a smell coming from my bag. this has happened multiple times and other people have noticed the smell and i can’t tell what im doing wrong or why this keeps happening, what should i do and is this normal

hi, I 19f got my ileostomy surgery 7 months ago. I still haven’t got my appointment with a surgeon to discuss jpouch surgeries yet (love the nhs) but I don’t know what to do. I’ve gotten really used to my bag honestly, like it doesn’t bother me all that much and I got my surgery only 20 days after being diagnosed with UC so the fact I’ve come to terms and got through that hell of a surgery I just like don’t know if I can do it again. And I’m happy!! But it’s also like what if? If u get me

And I’m a 19 yr old girl, single university student and like yes im a insecure about if anybody will ever like love and accept me lol and I want to wear low rise jeans and feel like a normal person without having people stare at me . But like I don’t know if they are good enough reasons to go through two more surgeries lol. Anyway just wondering about people’s experiences with a jpouch and freedom they got bag vs jpouch , especially if you are uk based !!

Her bag is high up on her abdomen, so a lot of the holders don't work right. She doesn't like the way it protrudes. Are there any other methods for hiding the bag a bit more or a holder that you recommend?

I'm 14 months post op permanent ileostomy. Can I lift heavy furniture when I move next week? Thinking about hernia risk

I’m really lucky as I had my ileostomy reversed almost 6 weeks ago and my bowel function isn’t bad at all. However my wound at the stoma site isn’t healing. It was left as a cavity wound and has been packed daily since surgery. It’s not as wide or long but the depth hasn’t healed up. My diet is good, lots of protein and prescription supplemental drinks. I am taking light exercise but nothing is happening. Am feeling wornout from it. Just wanted to moan

Hello! My whole belly is sticking out like im 2 months pregnant & I have a small hernia above the colostomy scar. Can I do any exercises for abs?? The PT gave me only calf raise exercises and hip flexor strengthening. I don’t understand why. My reversal surgery was in Sept. & I followed surgeon’s orders to not drive or exercise or do any activity utilizing abs for 2-3 mos after. I was slow starting PT, and once I did, rather than giving me exercises to recoup my abdominal tone, he told me to do calf and abductor exercise 3x/day. I was very compliant at first but got discouraged & stopped. Can we do sit-ups? Am I going to look like this forever? Help please. TIA

I have a 23 day old colostomy. Five days ago my output changed. I went from fairly soft expected output to no output. Three evenings ago I did Miralax as suggested by my ostomy nurse. No output from that. Yesterday my husband and I took a short walk-absolute blowout with diarrhea. Got that all cleaned up and continued on. Last night no output. Today on the way to a Dr appointment (my pcp, not surgeon or GI doc) huge output that literally looks like chicken broth. It is basically water and bile. I have a call into my nurse again since the weekend is coming. Can changes in foods I eat make this much difference in output? Trying a very few new foods along the way. No fever or belly pain. Maybe a little fullness but that is it. I am freaking out. Any input would be appreciated! TIA

This is more of a personal post op management question than a medical one.

What are people doing to protect the very new and still-sensitive skin after the ostomy site had closed and pretty much healed over?

My stoma site has is completely closed but it still gets irritated from fabric/waistbands etc. brushing against it. I’m curious what solutions people have used. Do you just put a large bandaid over the site? Keep using the post surgical gauze and adhesive? Any solutions that don’t involve adhesive? Also any cream/vitamin e or similar to help the scar tissue? TYIA

i was about to get into it with a guy i’ve been seeing and he accidentally ripped off the bag from my 2 piece setup. i am so embarrassed and feel disgusting. im 9 weeks out from my surgery and this is the first person ive been comfortable with to have s*x and this happens. i was able to change my setup and clean everything but oh my god