Struggling with a Colostomy and Urostomy - Will It Get Better?

I'm more than a little lost. I knew due to my cancer location (rectal) I'd have the inevitable colostomy. Unfortunately, the tumor's location and its starting to invade the prostate resulted in it and the bladder also being removed. So now I have 2 bags....... I was struggling to deal with just one. The surgery was 8 hours and almost 5 weeks ago. I'm still having issues with pain. Lost over 20 lbs and had to extend my medical leave from work. I am thankful I am alive and the margins all came back good. However, while being alive that doesn't mean I have a life. I'm not sure I can see me doing anything I did before (working out, traveling, beaches, going out, etc.)

The urostomy is worse than the colostomy. The bag is huge and constantly in the way. Trying to "hide" two bags is impossible and has removed what little self-confidence I had. I'm trying to tell myself it will be okay, eventually. It will, right? It will get better and I may have a life, won't I? I think I know the answer..........

Yes, Wil, it will eventually be okay. I know it doesn't look that way right now. I am glad that your margins were good.

Right now, you need to focus on getting yourself physically well, and you need to grieve the loss of the way things were. You may need help with both. If your surgery was only 5 weeks ago, it isn't surprising that you still have pain. You have been through major surgery. The pain will gradually lessen, but for now, listen to your body as well as your medical professionals with regard to what you can and cannot do. You might want to consider getting a hernia belt so you don't add a hernia to the mix.

I would strongly suggest that you find an ostomy support group in your area. This site is good for asking questions and getting answers, but if you can join a group, you will find that really helpful too. You might want to consider professional counseling to help you grieve the loss of the way things used to be. When I was diagnosed with cancer, and told that I would need an ostomy, I sunk into a depression. Professional counseling allowed me to climb out of that pit. You are facing extraordinary circumstances - most people have no idea what an emotional upheaval this is. There is NO shame in getting whatever help you need to cope with this.

Wil, arm yourself with information. It will feel overwhelming at times, but you need all the information you can get. This site is great for that. There always seems to be someone who has faced whatever challenge you are asking about. You will find that ostomies don't come with a user manual, and your health professionals will invariably answer a lot of your questions by telling you that everyone is different. That phrase will make you crazy, but the reality is that it's true. You will find on this site that people have a wide variety of experiences and solutions, but you will need to find what works for you. We can help by telling you what works for us, but bear in mind that just because something works for me, doesn't mean it will work for you.

Have a look at past forum topics, and the tips from members. That may help answer some of the practical questions you may have. I suspect that what you want to know, more than anything, is will it get better. Yes, Wil, it does. I am living proof that it does. I am so glad you found us, Wil. Keep asking questions - we are always here for you.

Laurie

Have faith.. things will change and get better.. talk to everyone here and find out the best clothing and bags to wear.. most of us have lived this life for many years .. worked, had or raised children, attended school, had romantic partners, and traveled.

Hi, I've had two bags for 13 years now. I hear your concerns. I thought my life was over too, not being able to do a lot of things I used to. But, it does get better. My recovery time was over a year. I'm happy to chat via messages if you need to.

Hi there,

I agree with Laurie. This journey definitely has its ups and downs. There are many wonderful people on this site that are here for you. Plus, if you investigate all the posts, you will find real advice from people in similar situations.

I remember gazing sadly out of the hospital window after my operation - with tubes all over and compression socks - more like tubes that I swear I could moonwalk in. How I wanted to be walking outside! I made a quiet wish to myself, hoping I would be on the other side of that hospital window for at least five more years.

Well, that operation was in 2006. I remember the tears when I had blow-outs and when my skin was so sore I didn't know where to turn to next. But, what I remember the most to this very day, is that I am still on the outside of that hospital window.

Having a strong will and good sense of humor helps - and a pinch of arrogance too. I can still get a sunburn, get bit by mosquitoes, go for a ride on my bike or in my car, visit friends, and a whole bunch of other things - actually everything I did before.

I am just plumbed differently.

I had a friend who was bedridden and tube-fed as a result of a stroke, which made me see just how lucky I was. As each day and week and month passes, I promise you it will get better. And Bob (on this site) is having a backyard pool party beside his cool, old, kitten-no-more barn, when the border finally opens and we have conquered this virus. Everyone is invited - right, bro? He'll be the one wearing a cool new hat.

All fun aside, there are very supportive people here you can lean on for advice and encouragement. Welcome to this site. Karen

Do you still have any descending colon left? If so, it's possible you would be a candidate for irrigation. Ask your surgeon or ostomy nurse. That would basically eliminate the colostomy from the picture, and you could concentrate on your uro. Good luck! The next year or so will be challenging, but if others can adapt, I'm sure you can too. If you qualify for irrigation, I will be glad to guide you through any problems you might encounter.

Hi Wil,

Great advice in this post! This is a great support system for you. I have not seen anything posted here that someone else has not dealt with as well. Let it rip! You can ask all the questions you like, you can vent, you can even get angry. All of this is part of the healing process. It is not just physical healing! Just know that you are far from alone. We are all here!
I also have a colostomy from cancer. Irrigation has changed my life! I do everything I used to do. You are not ready to think about it yet, not until you have healed! You certainly want to look it up on YouTube! Check with your surgeon or Ostomy care nurse to be sure you are a candidate for irrigation and once you have totally healed, you may want to give it a try!
Glad you found the site,

Puppyluv

Hi Wil, you have gotten some good advice and I think most of us have felt the same way you do. A lot of people feel the surgery has saved our lives. I have learned a lot from the folks on this site. I was not given much advice when I had my surgery. You stay strong and keep posting, you can probably help someone else by sharing your journey. Best wishes and stay safe.

I am sorry. You have a lot to get through - and you will. I have only one and feel much the same as you do. Just stay safe from the virus.

Hi Wil, you got some great advice and support here. Like others said, ask any question or just rant. We've all been there, done that. 5 weeks on is still very early in the game. Take time to heal and eat all the favorite foods you like. The mental battle is the hardest part - the "why me" and then the anger, then resignation of your situation. Then take control and don't let it rule your life. I've had an ileostomy for 35 years and I thought my life was over as I knew it. But actually, my life was just getting going - raising two girls, one played travel hockey, losing jobs both me and my wife, but life went on and so will yours. Good luck.

Thanks.... Not trying to be a drama queen. Just so over this. Now I've got a separation of skin by my colostomy stoma and for some reason had a daily "blow out." It just never seems to get better, only setback after setback.

I appreciate the kind words. It's just been a roller coaster and mostly downhill.

Good to hear there are others with similar scenarios. A year? OMG..... That's more than a little daunting and disheartening.

Your positive attitude is admirable. I know I was in the hospital after finding out they took my bladder and thinking, "I'm alive." But that's about as positive as I've been able to get.

I'm not sure. I know at one point they talked about irrigation. However, with the urostomy, I know they had to reroute some things, so it may or may not be an option.

Thanks for the encouragement.

Wil, you are not being a drama queen. Yes, it feels like nothing but setbacks right now. It can only get better, right? If you're having a medical issue with your stoma, get medical assistance. Sometimes a stitch doesn't hold, and another one is needed. That isn't a problem that can't be overcome. I don't know if that's what is happening with your stoma, but you might need some help with that.

If you're having one blowout after another, you need to talk to an ostomy nurse to help you figure out why that is. Maybe you need a convex flange; sometimes that makes a difference. It made a huge difference for me. I couldn't figure out why I was having leaks - day after day, I would just put on a new appliance, and it would leak under the flange. Then I tried a convex flange - I don't have leaks anymore. Sometimes all it takes is one small thing to make a huge difference - the trick is finding that one small thing. We have all been there - the frustration, the feeling that it will never get any better. And for a while, it doesn't, but then, you figure out how to do something a little differently, and then again, and it starts to feel like progress.

All of this is so new, and so it can be overwhelming. Try to break it down into small chunks, and tackle the most pressing ones first - like the issue with your stoma.

I like the idea of asking if irrigation is a possibility for you. You aren't ready for that until your stoma is fully healed, but you can still ask about it. If you can get to the point when you can irrigate, your situation might not feel so daunting. Keep asking questions, Wil. We are always here.

Laurie

Wil, cheer up! You will find a solution to all - in time - That's the aggravating part, it may take some trial and error. I've had both bags now since Sept. 12, 2017, after having problems for 10 - 12 years. Now the problems are gone, bags are working great, and life is good. I go to work every day (when I want to - which is just about every day). At 80, I have no complaints! I use Hollister 82612 bag, and 8485 bag. Precut to 1", although I have to oval out the colo bag a little, my stoma has expanded sideways a bit. I had used condom caths and leg bags for some years b4 this, so was somewhat accustomed to them. I use a 21346 nite bag, and a 21026 leg bag for the uro. Have to use nothing but warm water to wash up changing bags twice a week, and just don't have a problem. It did take a few mistakes in the beginning though. The rings and paste they suggested were a nuisance and I found that I just did not need them. Some folks skin is more sensitive and takes different things though... might even have to try different mfgs bags. I'd be glad to chat back and forth if you have questions. It will be OK if you give it a decent shot, I promise! --

Lamar

Will, I'm a 20-year rectal cancer survivor with a urostomy and ileostomy. Yes, it will get better. First things first, NED is the best news, so please do follow up with your specialists - my oncologist and colorectal surgeon worked together for routine PET, MRI, and CT scans. At first, this was annual, and for a residual wound, it became monthly, but after the 5-year mark, I was fine (statistically they declare you NED after 5 years).

Mechanics: My urostomy is much harder to maintain at first, I had leaks all the time, and after a decade, I started getting UTIs. I figured out a routine (everyone's skin and active lifestyle is different). I'm pretty active, and after getting uro-septic a couple of times, changing routine - I finally settled on changing the wafer (2-piece system) every 3 days, my bag every day, hookup every night, and I flushed it every day. For prevention, I also started taking cranberry supplements and D-Mannose daily. My infectious disease doc team basically said that since urine and bacteria can go both ways and anatomically, it can creep back into the kidneys. I don't have a bladder or colon, so staying hydrated is very difficult. Believe it or not, one of the best ways to check your hydration level is like looking at a diamond - clarity, color, and smell. Okay, diamonds don't smell. I also write daily in a hydration journal.

The only ileostomy issues have been blockages requiring ER visits - so I avoid eating olives and onions, and sometimes it can just be scar tissue.

The good news, there are countless people out there who have dedicated their lives to help you, both mentally and physically. Here's the thing - they won't know where to find you unless you ask for help. Asking for help was the hard part for me since I basically hid my ostomies from my friends and co-workers. So more good news, these ostomies allowed a surgeon to get rid of a cancer that was literally going to kill me. So yes, the surgeon and ostomy procedures saved my life, and I am forever grateful and no longer shameful.

I hope you get to meet inspirational people and, more importantly, realize how many people will look to you for inspiration. Check out FightCRC.org for info (Fight Colorectal Cancer, or the CCA, Colon Cancer Alliance)

Be well.