Need Help Coping with New Ostomy

Need help dealing with life with a new ostomy. In the hospital for 5 weeks or so (can't remember) came home two days ago and having coping issues. Never thought I'd spend my "golden" years changing an ostomy bag all day 😟🥺

Thanks

Welcome to the site, you have come to the best site for advice and support. Be gentle on yourself; it's a lot to take in. xx

I presume the ostomy was given to you to 1) improve your life, 2) save your life, or 3) as a temporary thing while things heal. Why are any of those reasons hard to cope with? It's there to better you in some form. As with any major medical issue, you can do one of two things when you get an ostomy: accept it, adjust, and move on with life, or let it pull you down, get into your mind, and overtake your life. It's your life and your choice on how you want to deal with it.

Hi GrannyRocker,

It sure is a life changer, eh? It takes about a year, give or take, to get fully acclimated to the ins and outs of the ostomate world, and probably a good 4 years to truly 100% accept your new you without bullshitting yourself, and get back to being the incredible person you were before someone gave you a front-butt. Hindsight is 20/20, and when you look back at your ostomate adventure you'll be proud of yourself for what you overcame. It's like everything traumatic in life... shocking at first, then you manage to cope... and then you give the world the middle finger and excel, despite your impediment. You WILL come out the other side a better, stronger person.

;O)

Hi Granny,

I'm a granny too at 61 years old. The thing is, the ostomy is there now. Not sure why you had to get yours, but I'm sure for a good reason. Learn all you can about taking care of the ostomy, your diet, and yourself, and you should have no problems carrying on like everyone else does. There are support garments to wear under your clothes to hold things together for more comfort and odor drops to go in the bag for confidence. Don't let it get you down. There are plenty of us out there unbeknownst to anyone. This site has a world of information. Ask questions if you run into problems, and we are all here for support. You landed in a good spot here, and welcome! You're not alone.

Hi Grannyrocks, Bob put it very well, all of it. Nobody starts this process in the, “I can do this, I'm alive, I'm strong” stage. We hit rock bottom first, then we hopefully rise. Five weeks is a long time to be in the hospital. You're still reeling. We're here to empathize and offer help. You're not alone.

GrannyRocks sounds like someone that wouldn't have coping issues. 😊 On a more serious note, what are your coping issues: leak? skin irritation? smells? frequent pouch changes?

You mentioned you spent ~5 weeks in the hospital. Was most of this time before or after the ostomy? If after, I assume the ostomy nurse was able to figure out how best to manage your ostomy and train you on how to manage it. If not, you probably have not had the time to learn to properly care for your ostomy.

If you have only been home for 2 days, then it is expected that you would have an adjustment period. You didn't state whether you had an ileostomy or colostomy — if you have an ileostomy, then you will have to empty your pouch fairly frequently; alternatively, if you have a colostomy, you will need to change it less frequently.

The number of times you change the pouch will also lessen as your digestive tract heals and your diet settles. You will learn what foods can lead to constipation or diarrhea. You will also learn that foods such as chocolate can trigger a bowel movement. You will learn when you typically have bowel movements. Most importantly, you will learn that eating triggers the digestive system into action and most times will lead to a bowel movement. For example, if I am going out on a social outing, I will snack on something to trigger a bowel movement, put on an ostomy vest or a wrap to support the pouch with the knowledge that I won't have a bowel movement for a while.

To learn how foods affect your ostomy, you should get a mobile phone app such as mySymptoms to keep a diary of the foods you eat and the effect on your ostomy output.

The hospital usually has you using a transparent pouch so they can monitor how your ostomy is performing. You can change this and use an opaque pouch if you prefer not to see your output. You can try different products from the same or different manufacturers — they will send you free samples to try. Don't hesitate to try different appliances (wafer and pouch) for the right products can greatly simplify your life.

Finally, your stoma will probably shrink, so don't be alarmed. If you are willing to learn and experiment, you will still be able to enjoy your golden years.

I did. On my very first appointment with my surgeon, she said, "You'll probably have a bag for the rest of your life and your butt will be sewn shut." I said, "Okay." She said, "You're okay with that?" I said, "If that's what's gonna keep me alive, what do I gotta do?" She said, "I'm not used to getting that response." Don't get me wrong, I got sick, lost a bunch of muscle weight, crawled into my own little world for a few months, but never felt sorry for myself or kept having a negative thought process like I read on here all the time. You got one life, either enjoy it or don't, it's 100% your choice. Nobody heals by moping around and being scared to do normal life things. You wanna heal, get on getting on and put your mind in the place it needs to be. One door closes while another one opens, step through it and see what's next, life is that simple.

What kind of ostomy? Colostomy, ileostomy, or urostomy? First of all, you should not be changing the ostomy all day. Yes, emptying it will be necessary during the day. Are you seeing an ostomy nurse? Home health care? Where you live, there should be a WOCN nurse in close proximity. Ostomies, in many situations, are life-saving and allow people to return to a normal life.

Hello GrannyRocks,

Welcome to our little corner of the internet world. I read your profile. You underwent chemo that damaged your intestines. Are you still doing chemo? Is the battery you refer to for cancer treatment or your ostomy?

There's a world of fellow ostomates on this website. All have unique stories of the rocky road they endured, ending up with a stoma.

There are 2 parts to it: physical and emotional.

The physical part of us eventually heals. There are occasional setbacks. But that's what doctors and hospitals are for. There are a bewildering amount of ostomy products available. I remember looking at an ostomy product catalog and wondering, "What the hell is all this stuff, and when would I use it?" So, there is a steep learning curve in that respect. But a couple of months later, it all made sense.

It takes time and self-determination to recover emotionally. Having a support network of family, friends, and medical professionals is important.

It just takes time.

Hang in there, take it one day at a time.

Welcome to the site. You are not alone and can and will be able to handle your ostomy life. One step at a time. This will get easier.

Everyone has said it well. I'm now five months post-surgery for a colostomy, and I can say the first two were extremely difficult. I had just completed throat cancer treatment three days before emergency surgery for a perforated bowel, so there was a lot going on! It is a process, and expect to have some very difficult, dark moments and then moments where you think you have it all figured out - in the same day! I promise it does get easier. I wish I had found this forum 4.75 months ago, though. Keep your head up and really be patient with yourself and take it one moment at a time - you will one day be at the place where you can simply look back and remember the difficulties you once faced.

Hi BB

I can totally relate to seeing and reading about different products to help; however, I learned most of it on here. I think if I'm being honest, I still don't know all of them and what they do. Xx

Dear Granny,

Call all the major manufacturers for free samples and try them out to find what works best for you. If you have a urostomy and need night drainage attachments, mention that when you ask for samples. In my experience, they will usually send two or three of whichever of their products they think will work with your kind of ostomy.
Dark-colored clothing hides leaks better than lighter shades until you can get to fresh clothes.
I was told you can spill a glass of water on yourself to have a reason to escape for an appliance change.