Soon to Be Living with an Ileostomy

Hi everyone,

Next month I will have an ileostomy due to cancer. I am extremely nervous as my life is going to change tremendously. Everything that seemed normal and easy will all change, and all the unknowns terrify me (showers/baths, swimming, flying/airports, sleeping, sex, how long it takes to empty, emptying in public bathrooms, how long it takes to change appliances, how often you need to empty, working, leakage, all the unknowns and seeing it for the first time). I know this all may sound silly and know that removing my colon is my best chance of being cancer-free, but I am scared because it is such a big change. Whatever advice and tips anyone can provide would be appreciated! Thank you in advance for all your help and support.

Welcome Radiantsole!

First of all, nothing in your post sounds silly.

Trust me, we all had the same fears/questions in the beginning of our ostomy journey. No question is off-limits, so ask away. You will get a ton of members who are willing to share their experiences and help you in any way they can.

Yes, it is quite an adjustment for sure and will take some time to become comfortable with your new normal, but if it saves your life, you will come to appreciate it one day. It can be a bumpy road, but you will get there.

I have a colostomy, not an ileostomy, but there are many ileos on here who will chime in shortly.

A good number of the members on this site had no idea they would be waking up from surgery with a stoma, be it an ileostomy, colostomy, or urostomy, so right off the bat, that is an advantage you have.

Check out the UOAA; that is our national organization, and there is lots of good info there. Also, at the top of this site, there is a search bar, and you can type in a word or question, and you will see posts and replies that will help you with concerns you might have.

Good to have you here, and keep us updated on your surgery, progress, and healing.

Wishing you Godspeed

Take it one day at a time. In the beginning, it will be tough because having surgery is hard, and you need time to heal and learn how to care for your ostomy. There should be a wound care nurse in the hospital to get you started during the first days after surgery.

This site is great. Ask any questions. There are a lot of new people and old-timers like me.

Hello RadiantsSole, welcome from Oz 🇦🇺

All the things you ask will fall into place; don't try to absorb everything at once right now. Your most important task now is to obtain an appliance (bag) and discuss its location with your stoma nurse and surgeon. The entire bag and its perimeter need to be on a flat area, with no folds or creases when bending, away from your navel and without surface scars. All these things will cause the appliance not to adhere to your skin, leading to leaks and damaging your skin. Make sure this discussion is a priority and that everyone is on the same page; it is very important for getting off to a good start.

Hello,

I've had a "surprise" colostomy for 3 years.

It will take time for you to heal and discover the ostomy products that work best for you. All ostomy product manufacturers offer free samples. Look them up via an internet search and call them. They also have ostomy nurses on staff to help you.

It doesn't take long to learn how to change your ostomy appliance and troubleshoot leaks. Any questions are cheerfully answered on this website.

What takes time... the mental part. It's been 3 years, and I still struggle with it.

So... don't rush. Take your time getting comfortable with the new you.

Let us know how you're doing. Need to rant or rave... this is the place. We've been there.

Good luck.

My Ostomy Journey: Keyla | Hollister

Maybe watch some videos about different brands and how to use them. I didn't do that and didn't get off to a good start after surgery. The Stealth Belt website, Hollister website, and Vegan Ostomy website helped me a lot, and of course, if you have an ostomy nurse, you get their help. It takes time, but you'll get there.

Hi, and welcome to the site. You've come to the right place. Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, hydration, blockages, skin care, clothing, ostomy products, travel, activities, exercise, and a whole host of other tricks of the trade.
You might also want to check out a local support group near you.
Just remember you are never alone on this new journey. We're all here for you.
Wearing a pouch does not define who you are. There are solutions to whatever comes up. You've got this. Ask all your questions. Remember, we're here for you. Best of luck.🌈

G-Day RS,

I would recommend you get samples of all the different stoma bags from all the companies; they will send them to you free of charge. Try each one in the area that you want it to be for a couple of days each. This will test for you which ones don't create any problems with your skin not liking the adhesive. Find out who will be your stoma nurse and get to know her really well; she will be your go-to if you have any problems in the future. Keep us up to date and let us know when you're having the operation.

Is it going to be permanent or not? If permanent, do you have your butt stitch closed as well?

Regards IGGIE

Hi Radiant, welcome to the site. I've been an ileostomate for 40 years, and at first, I was rough until I figured out the right appliance to wear. But then there was the mental side of it, and it was in stages of anger, "Why me?" etc. But eventually, I accepted it and got on with life, working, raising our daughter, and doing things I couldn't do when sick from UC/Crohn's.

There is a ton of good advice here. I would just add, take a deep breath and try to relax. It may seem scary at first, but with time, patience, and practice, you will learn what works best for you. All ileos have been in your position and gotten through it. Hang in there; it does get better and easier!

Welcome, Radiant. This group has been a real gift. My husband is only ten weeks post-surgery, so we're definitely figuring it all out. He had two weeks of advanced notice, so more time than others, but not a lot to self-educate. We didn't know to get in touch with an Ostomy Nurse (WOCN) before surgery, which would have been very helpful, but it's all working out just fine. We've found this group of folks to be very generous in sharing knowledge gained only by living with an ostomy. It's an adjustment, for sure, but it's one made easier by those who care, even the ones we may never meet.🌻

Welcome! My rectal cancer took me in a slightly different direction. I didn't lose that much colon and ended up with a colostomy. But it also damaged the bladder, leading to a urostomy as well.

Cancer is a b*#$^

The thing to know right now is that you will get your life back and be able to do all the things you want to do. Once you have adapted to the ostomy, it will not limit you in any way.

There is good advice here about picking a spot for your stoma. It's best if an ostomy nurse helps you. After that, worry about recovering from surgery. It's quite a shock to the system.

Welcome,

You have found a good community here - Welcome Radient Soul ....

No question is silly ...... Spend a little time exploring the site ..... for there is a lot of good info and advice here ..............

Scared is a natural reaction - so too are the ensuing stages we all go through .... the why me .... etc

The trick is to be gentle on yourself .... allow yourself the time and gather the understanding to believe you have the GOOD FORTUNE OF Hope and the Gift of going forward to live your life - albeit in a different way.

Believe me when I say 'you will feel OK and adapt and the INNER YOU will be able to be not only radiant, but happy too!

We all need time .... and this ostomy surgery is the blessing to allow that time not only to survive - but also to THRIVE.

Truly I feel for where you might be right now.

But take heart, and slowly, you will encounter each star, one by one, and with a little learning, some perseverance and good fortune ......

Your tomorrows are before you.

Good luck

Jayne

xx

PS I had my ileostomy when I was 25 ..... and went on to live a full life - You too may do the same - Live your life ...... tomorrow is the first day of the rest of your life ...... Live it well and be happy.

All will become 'normal' .... You'll see .../ enjoy the new you - but the same inner you - Love from us all.

Waves from the UK

Hello and welcome. You've already gotten such good advice; I can hardly think of anything to add. Just to stress what someone already said, you do have an advantage knowing ahead of time, so make the most of it by discussing stoma placement with your surgeon. I also have an ileostomy, and it saved my life, so I am grateful for it every day. It will be a journey, and there will be mishaps along the way and a learning curve, but you will get there. We are all here to help, so don't hesitate to reach out.

Terry

Hi Radiant

Very unfortunately, I had a long five-month coma due to COVID and woke up with an ileostomy along with a number of other life-challenging things. Every single one of your questions was pretty much all I thought about while in recovery for a month in an assisted living facility in my 50s, which was very emotional.

My ileostomy was a total shock. I am a massive prude and struggled, and I'm still struggling with the social side of things: bathrooms, love life, what I can eat, what I can't eat, alcohol—you name it. I've had all the emotions from angry to resentful to sad to devastated and everything in between…

I'm seeing the light now, but it's been a journey. It seems most people that have responded to you are in a really good place. I think at some point in your future, you're likely to feel like me, and maybe at that point, you can message me, and perhaps I can help you navigate through some of the challenges.

People here seem super friendly, and even just reading quietly to myself, I feel relief in seeing people that are just like me for the first time.

I really wish you the very best, and feel free to message me any time for a conversation, support, or whatever.

All the best, Simon

Welcome to the group. I too have an ileo due to colon cancer. But I didn't get a chance to discuss the ileo prior to the surgery. Just provided the approval for an ostomy right before surgery - as a way to get as much of the tumor out as possible.

I'm glad you found this site so soon. I wish I had found it sooner than I did. No question is off-limits.

I had a stoma nurse help me with my first bag change while I was still in the hospital (I was only in the hospital 7 days post-surgery). Once I was home, the home care nurse also watched me as I did my first bag change at home. I also had a one-month post-surgery visit with a stoma nurse where we did another bag change.

I say all this to let you know that hopefully you get some early guidance on changing your bag, which worried me the most in the beginning.

But you will also need to focus on general healing from the surgery. Think protein (protein drinks, chicken, which is also a food recommendation for your ileo in the first 30 days).

With an ileo, two things to also remember - chew, chew, chew your food and stay hydrated (both water and electrolyte drinks).

I want to thank all of you for sharing your experiences, providing guidance and the overwhelming support means the world to me! You are all amazing people and your responses give me hope to know I’m not alone. My surgery is Nov 24th and they will be removing part of my liver and my entire colon. I originally had surgery in July and it had to be aborted due to two arteries being nicked when a lymph node was being removed. They had to give me time to heal internally and externally (cut from pelvis to breast bone) and back on chemo for a time before 2nd surgery could be performed. My rectum will remain intact as it would take too long to heal and they want me back on chemo a month after surgery.  There is potential the ileostomy will be reversed, but due to my UC probability is slim a rectum will then be removed at later date. I will keep you all posted and continue my research in the mean time. Thank you again for all you help thus far! 

I wasn't sure if you were responding to me. I didn't want to hijack Radiance's thread.