Adjusting to Life with a Stoma: Experiences and Tips

I am just resting thinking, anyone who has had a Stoma for a year or more.

Do you actually get used to the output coming out, wearing the bag etc....

I would like that vision in my head to feel stronger and to be able to cope.

Oh dear... yes... everyone says this... and usually in disgust too. But fear not... you do get used to it. It becomes second nature. Like putting on makeup, changing socks, even that handsome fella next to you. You got used to him too, right? 🤭

It's been 8 years for me. You check yourself in the mirror... you check your bag... second nature... automatic. Then you go out. Have a life. Make a memory or two. 👍

Hi,

I'm not 1 year out in fact I'm less than 2 months out and I'm pretty dang happy about my decision. There's hiccups along the way and I'm absolutely still getting used to everything, still dealing with leaks and stuff.

From what I've read the people who led debilitating lives due to the various GI conditions are the ones that are the most happy with the stoma. What caused your stoma?

As far as your comment about the output, if anything I'm fascinated by it. I love watching it. Kinda bizarre. 

You, my friend, are weird watching poop. 😆

I've had my ileostomy for 16 years and it's second nature now, can't even imagine "unloading" the regular way.

Rarely ever think "why me" but if I do I just remember what my life was like before I had the surgery (several years of Crohn's disease) where I was just existing in a painful zombie-like state chained to a bathroom and wishing I was dead, and realise that the life I have had since the op (full of energy, no drugs that don't work, no doctor visits) is pretty bloody wonderful! 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

You have just made me laugh and I don't do much of that.

Thank you.

You are lucky, Jo.

Myself... over 30 odd years with CD. It won't let up even with the diseased colon removed 8 years ago. Blessed you are done with it.

I have had ulcerative colitis for years, and 7 weeks ago, a cancerous tumor appeared on my colon. So, I was left with a stoma.

Don't worry I keep the viewing window closed when I'm around my girlfriend

Oddly enough, I have seen another gentleman in a cafe adjusting his appliance. I thought to say something, but what do you say?

I have an aunt who has one, but she is a relative I only know and see occasionally at funerals. I really could approach her 🤷🏼‍♂️

I have a coworker whose grandmother is in her 90s with one. She actually gave me a Coloplast sample once! She encouraged me to talk to her, but what do I do? She used to irrigate! I thought about asking her about that, but I'm not sure I have 2 hours every other day for that, so I brush that idea aside.

I finally got onto web forums after 4 years post-operation! So far, I'm happy to ask any questions here. I get it, talking to a person in front of you or on the phone is not the same.

The main thing that I find difficult to get used to is having the freedom in your own home to let it hang out and adjust it whenever. I have to have guests or kids around and don't feel it is kosher to do that in front of them.

My wife is wonderful and supportive. She knows my struggles and empathizes with me.

That's wise... and no burping the bag around her, either. Definitely a mood killer 🤭.

Hey, sounds like another squeeze addict like me 😜 

Good wife, happy life.

 

Regarding that great freedom you have at home? It is wonderful.

Don't allow it to keep you home, though. There is a life to be had now. You are free from UC and that pain.

He has a squeeze. That young lady next to him... she'd enjoy it more... 👍 I'm sure. ♥️

Since I'm relatively young I bounced back very quickly and my QoL has improved immensely. I had it coming out of a serious UC flare that was ramping up and steroids could never touch it. They wanted to try Skyrizi but when I looked at the efficacy data. 25% chance of 2 year remission? 2 months until I get any symptom improvement at all (or none at all)? And that's one of the better drugs. Failed Rinvoq and Remicade too. I think those two are the best of the best. I said no more.

Since you're just 7 weeks out (and probably older than me, most people here are), I think you'll find that as long as you take care of yourself and commit to finding the best appliance, the best daily routine, diet, etc. . ., you'll find that maybe your life has overall improved in just a little bit more time. Little by little every day.

I’ve had my stoma for just over a year.  I didn’t think I’d ever get used to it at first.  I didn’t suffer for years with UC or anything, mine was a two year whirlwind cancer battle that led to this.  I am used to it and grateful for it.  
It does take some adjusting; this is new for you, so just give yourself time.

Welcome to the group!

I have had my relocated stoma for nearly 2 years (March 31 will be 2 years). I have gotten used to a lot over this time. The only thing that I haven't gotten used to is leaks. Fortunately, I haven't had one in a year, but when I do, it's very stressful. Other than that, I am fairly used to wearing my bag, emptying my bag, getting up at night to empty my bag, and just seeing what's inside my bag (as I wear ones you can see through in case I need to know if a medication or something is coming through undigested or a food is coming through undigested). I have gotten used to going out in public with my bag, relying on it not to leak or to burst. Being able to empty in a public toilet facing the toilet (I'm a female, so the feet under the door must look strange pointed the wrong way), I just don't care anymore. I do what I need to do, and it's my own business. The only other thing I can't get used to is I have one friend who feels a need to explain my situation to everyone, like waitresses in restaurants (oh, she can't have that, she has an ostomy) or (that doesn't have carbonation in it, does it? She isn't supposed to have carbonated things). I do hate it when she does that. It's not the waitress's concern. If I order something, I know what I am doing. And I have as of yet to see a carbonated iced tea. I suppose they are out there but not in the restaurants I go to. Other than those two things, I don't really have a problem with my ostomy; it's just a part of my life, something that saved my life, and because of it, I can live as full of a life as I can.

Your story strikes a chord with me... when I was your age dealing with UC, Prednisone worked. Still does as the knock for my flares, but back then, biologicals were possibly still in lab research. Remicade was popular. At age 25, they told me IBD patients were 80 to 90% likely to have a bag at some point in their life. Unlike you, I didn't take their advice. I did take their meds, suffered more meds, hospitals, scopes, etc.

You are the true warrior for getting bagged so early in life. You have a great attitude and disposition. Have you ever thought about how you would have ended up some 40 years later?

Check my profile.

Meanwhile, I will be thinking back... I could have been you.

Oh, I forgot to ask... please cite your source regarding Skyrizi. I'm on my 2nd IV infusion, not for IBD, no, for arthritis. Yes.

And it's messed up thinking these drugs work for both, but it is potent... liver toxicity. That caught my eye, and this med, being new on the list of everything I have tried, is a trial and error thing for me.

We're all different and accept things in our own way and time. Don't put pressure on yourself; go with the flow and take it one step at a time. Do what's right for you. It helps if you have a supportive partner, family, and friends, and when needed, they aren't afraid to give us a boot up our backsides, as we all need it at times, just as we do to them.

I was very lucky being around them all my life. My dad had one, then I had mine at the age of 19. I hated the sight of my stoma for the first few weeks, just like I'm sure everyone else does, but I kept making myself look at it. Then, I just took to it like a duck to water. 36 years this month I've had my ileostomy, which makes me feel so old saying it out loud, lol.

Some get used to this, some don't. People get used to all kinds of things in their lives, even living under dictatorships. A stoma is sort of like a dictator, as one has no choice but to do what needs to be done.

People are individual, but I hope you will be in with most of them who get used to this oddity.

Best of luck and determination!

Whisper it then..👍 Ben..😉

Unless you're one of the types that dwells on your issues and that runs your life, you'll always be aware of your stoma/situation, but eventually it's part of your routine and life just goes back to your normal (or new normal). Having a stoma is as good or as bad as you make it.

Hi,

I found the data on the skyrizihcp.com website. It said ~50% of people would have "symptom improvement" at 12 weeks and among those who had symptom improvement (so explicitly excluding people who didn't), ~50% would have achieved endoscopic remission at week 52. I think that comes out to 25% chance of remission when just starting the therapy.

I saw many posts on reddit and other forums where 9/10 people said "I wish I had done it sooner" and I decided I would be the person who did it sooner. The people on those forums who say you should exhaust every medication, I bet you dollars to donuts that they don't have a bag. Because they wouldn't say something like that if they knew that the bag isn't bad at all. Certainly not as bad as reaching your OOP max every year and arguing with insurance regularly to make sure you get your infusions on time (and that's if you're in remission). Ask me how I know about that dog and pony show. Abbvie decided they didn't want their copay card to work for me anymore, so poof there's $1000 out of my pocket to pay for a months worth of medication.

The whole process from the colitis to the hospitalizations to the bag has matured me well past 24. I no longer drink like a fish, party with dummies, eat like crap. And it only lasted little more than a year. I guess it robbed me of some youth, but it could have robbed me of my entire 20s, 30s, etc. No way. In 2 weeks I'm going hiking in the Whites of New Hampshire and in June I'm going to Italy. Here's the best part: I am 95% sure that I will be in good health for those. The colitis afforded me no such guarantees.

I am used to two stomas and only five months in. I even forget about them from time to time until one or the other reminds me.

It's all about attitude. I choose to place my focus elsewhere. I wish I could tell you how to do it, but this seems to come naturally to me. Lol, maybe it's my ADHD that lets me be so easily distracted by bright, shiny, more interesting things.

Well, you're the first person on here that I've seen admit to 'watching it' and being fascinated!  I do too!  I don't make a habit of it, but from time to time I will notice it when things are active.  I think it's one of our superpowers as ostomates!

Terry

As others have said, you will definitely get there Pamela.  I remember the first time I had a dream and in the dream I had an ostomy.  Previously, I was always my pre-ostomy self in dreams.  I figured it was some kind of milestone.  I can't imagine myself now, without it.  In fact, when I think of my pre-ostomy self, it just makes me glad all over again that I ended up with a perforated colon.  It was the best thing that could have happened.  I have an improved quality of life, am not in constant discomfort and pain, and can do everything I did pre-ostomy.

Terry

Hello,

I've had my colostomy for 2 years.  I watch my little beast in the shower.  It's amazing the different shapes and sizes it assumes.  It gets weird bumps. Looks Iike a mushroom.  Then a small volcano.  It can double in size and length in minutes.  I also keep watch in case that morphing volcano erupts.

In the beginning I didn't wear a support belt.  I've always used Hollister 2 piece system. 

The bag felt heavy the minute output was in it.  Especially walking.  I started wearing a thin, Hollister bag retention belt that clips onto the bag flange.  This eased the heavyness and gave me confidence the bag would not pop off when a lot of output was in it.  And I could still easily burp out gas when necessary.

After 4 months, I developed a small parastomal hernia.  This is common with Ostomies.  My doctor suggested a different type of support belt.  I chose Nu-Hope Corporation.  They have a wide range of belts.  I'm a little guy, so I bought 2, 3, and 4 inch wide belts.  They are awesome.  Hold in my hernia while holding the bag secure.  The belts are comfortable enough to wear all the time.  I only remove the belt for showering.  I sleep with them on.  So far my hernia has not gotten worse.  And I can still burp the bag with belt on.

I'm used to the noises emminating from Mr Stoma.  Sometimes when it shouldn't.  Like getting my teeth cleaned.  Or at the movies or in church.  I just gently pat my vocal lump with a hand and say "Shoosh!"  Most people smile, they really don't care.  It is, what it is.

I don't think about my colostomy much anymore.  I used to be upset about the noticeable lump on my abdomen.  No way to hide it.  I used to point at it when talking to someone and say "It's an ostomy."  And you know, nearly everyone said, "Oh, didn't notice."  So I stopped obsessing about it. 

The magic of modern medicine and a skilled medical team brought me back from certain death.  Dealing with the minor inconveniences of an ostomy is a small price to pay, for my return to a good life.

Well said. You got it right. A plan for success. 👍

Terry, from the bottom of my ❤️... watching your Pooh? You are weird too. 😲😉

Hi, I've had mine for about a year now, and I am getting used to it most of the time. Mine was due to an emergency surgery that they thought was for an intestinal blockage, but when they opened me up, they found that my intestines had been so badly burned by the radiation from my previous cancer treatment that they were cemented shut. Plus, they discovered the cancer had returned, so then I had to deal with chemo on top of the colostomy, so I focused on getting through each day. I had a terrible time finding a device that fit and worked well for me, but I think I have a good one now. Mine is retracted, and I am too heavy, and they say it will likely stay retracted even if they redo it because of my weight, so I use a convex one-piece from Convatec that seems to be working well. I even have moments when I can't feel it and forget that it's there! Having an innie was a huge problem, and the skin around my opening was so raw it felt like all the devices were poking at me when I moved at all. This device I have no reaction to the adhesive, and it holds so well that my skin is finally beginning to completely heal. The other devices would leave me feeling bruised, and the belts would either be too tight or too loose, but either way, they changed the way the adhesive would hold. Last change I went with no belt, just my underwear that is snug, and it worked perfectly. I'm now working up to walking outside for 15-20 minutes each day to deal with the neuropathy in my toes from the chemo, and the bag is still working well so far. While the exercise does seem to irritate the bag area a bit, it calms down after a while, I think it's because I have such a loose belly. I try to focus on the good things in my life (like I'm alive!) and find that the comfort level will come to you. Truly, I've been sitting in my chemo doc's office, and the bag leaked all over my belly; we just said dammit and moved on. Oh, and because the chemo messed with my output, I have been taking 1/2 cap of Miralax daily, and that has helped with the consistency in both the timing and the output.