Newly Home from the Hospital - Struggling with Recovery and Ostomy Care

So, I have been dealing with vulvar cancer since 2016. After undergoing radiation and countless surgeries, my doctor gave me one final surgery to consider: a pelvic exenteration, which left me with a colostomy bag. I also needed plastic surgery to help fill in what was now missing. So, I had an incision from my boob to my pubis; it literally looks like I was cut in half. Due to that surgery, my osteomyelitis is on my right side; they had to move what was left of my colon. I had both surgeries done simultaneously; it took them 12 hours. Thankfully, all the items and tissue removed were cancer-free with clear margins. I have had so many setbacks; my stoma was black and freaked me out. They said it would slough off, and it finally did. I got sepsis in the abdominal wound and had to get it debrided once a week under anesthesia. I wasn't home for 100 days or more. I'm so afraid every pain, cramp, and tiredness means that something is wrong. I am using a Hollister 2-piece with a flat wafer. I'm not sure if it's me, the brand, or if I just need to heal more, but one day, I went through 10 bags in one day. I don't know what my question is, but I just feel lost. 😔

When you went through 10 bags in one day, was this because of leakage? Was it because of your anatomy? Did it only occur one day and not anymore? Do you need a convex barrier? Issues like this, when there are multiple things going on, warrant a visit from a WOCN nurse.

FYI, I use Hollister with a convex barrier and with a thin wafer and have had no problems. It is more likely your anatomy or technique that gave you the problems.

You and your body have been and are still going through hell; what you're feeling—being afraid and lost—are perfectly normal feelings.

Take it one step at a time. If it continues, needing to change the bag 10 or more times a day, talk to your nurse as you might need another bag that's more suitable for you.

Talking really does help, whether on here or to family and friends.

Keep on fighting. You can get through this and out the other side. We're all here for you if you need an ear.

That's a very rare cancer and surgery. Good news that follow-up pathology revealed no cancer and clear margins.

Yes, give your body time to heal. All your body systems need time to adjust to your new normal. After getting a colostomy last year, it took me 3 months before I began to feel normal again.

I've had days where I empty my bag 3 times in an hour. And other times where I empty it once in 2 days. At first, stomas are unpredictable. But as time goes by, you will know how your stoma will behave and what foods affect it.

If you have not done so, talk with a stoma nurse. Most major hospitals have them on staff. Also, all medical device manufacturers have stoma nurses available to answer questions and provide experienced advice.

I had 9 hours of surgery when I was 25 years old for stage 4 thyroid cancer. Over the years, I had many more surgeries to remove tumors. I underwent 2 whole-body radiation treatments. Nasty chemotherapy, neutropenic fever. I had 46 radiation treatments for prostate cancer. And last year, 7 hours of surgery resulting in a permanent colostomy. Through all this medical adventure, I sometimes wondered when I would have my final good day. Co-workers and friends used to ask me, "How do you handle getting CT scans, biopsies... aren't you scared?" No, I was never scared. For me, every day is a holiday. Cancer made me focus, pay attention to my life. You cannot let every pain, cramp, and tiredness rule your world. You have survived horrendous surgery, hospitalization, infection, rare cancer, and now have the stoma.

People on this website have experienced pain, suffering, loss, anguish. They share their stories, adventures, stoma troubles, skin issues, hernia bumps, successes, failures, and humor on this digital gathering place.

The worst is behind you. Gradually your strength will return along with your confidence.

Take care

Lemonade486, you have been through it for sure. I can understand you being anxious. I do want you to try and focus on the fact that you are a survivor. No cancer in the last surgery is great news. I will say changing your appliance 10 times in a day is very hard on your skin. I definitely agree that you talk to your wound care nurse. I think you should try using the convex bags. As much trauma as you have been through, you might even consider getting some counseling. You aren't alone. Keep reaching out. You have landed in a safe place.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

It sounds as though you are using a non-drainable bag, if the changes are not due to leaks. That is not a good option with an ileostomy because of how many times a day you need to empty the bag. You should be using drainable bags. I don't know what your insurance situation is, but I doubt any insurance is going to support 8-10 bags a day. Other than that, I agree with the advice given above. Especially, talking to your WOC nurse or surgeon. If you are actually changing the whole appliance 10 times a day, your skin will surely object in serious ways.

Daniel

Was your surgery at Cleveland Clinic or UH by any chance?

Going through 10 bags in a day? Is it because you are using closed-end bags or you're having leaks?

Cleveland Clinic

I was in a skilled nursing facility; my skin was raw because, with my dips and such, they couldn't get it to not leak, and they were drainable bags.

I was just describing a specific day while I was in a skilled nursing facility. It was a drainable pouch.

Dear Lemonade486,

I'm so sorry you have had to go through all of that, but it is terrific news that there was no cancer! You will probably have a longer recovery time because of the extensive surgeries, but keep your chin up. It does get better over time, I promise.

I talked to a counselor over the phone, which helped me be more positive. I didn't know another ostomate and had no one to talk to and didn't know what to ask about if I had known someone. This site and these people changed that for me, and I hope it helps you too.

My ostomy protrudes a 1/2" to 1" out of my stomach. After surgery, it was firm all around my ostomy except the right side. There it dipped sharply, and I had to use 1 and 1/2 wax rings to level it out. Try the extra 1/2 a wax ring if you have a dip in your tummy, and maybe that will stop the leaks. I also roll up the bag and wrap the end in 2 squares of toilet paper so it unrolls as it fills, and I don't have the bag swinging around irritating my skin. The toilet paper also absorbs any leak before it can get on the underpants or clothes. I wear boy shorts that keep the bag still and close to my body. I rubbed a raw spot on my lower abdomen this summer working in the yard while perspiring. My bag was unrolled and able to move too much, so now I roll it up, and it has not happened again.

I am the ostomate who still has IBD and cannot endure fiber at all. It's agonizing in as small an amount as the powder in shredded cheese (the powder keeps it from clumping) or the fiber in my AG1 vitamin and mineral drink. I have to split one serving into AM and PM to get past the fiber, which is only 2% per serving.

Fiber affects my quality of life with constant abdominal pain and gas, so I avoid it and keep my output liquid. I'm on the carnivore diet (to kill cancer) so have very little output compared to a normal low-fiber diet. I get regular bloodwork every 6 weeks, and my doctors are happy with my progress.

Moana's opening is skewed to the right, and that's where I would leak all the time until I added an additional 1/2 of a wax ring. Over time, my tummy firmed up, and the dip is much less pronounced, so no more leaks, but I still use the extra 1/2 wax ring to keep everything level. I change my Hollister system once every 5 to 7 days.

I wish you the best of luck. Take care.

Terri

Are you home now or at the nursing facility still? That's great news about the margins being cancer-free ☺️

Welcome to the site. Lots of great advice and support already from people who have had the same issues as you. Great to hear you're in the clear on the cancer front. xx

Let me know if you need someone to help advocate for you or sort through what works for you. I'm not far and unfortunately/fortunately have spent a lot of time at CC.

I am sorry for what you have gone through. I experienced the same issue, changed bags 3 times in one day after returning from the hospital. Something that helped me was to watch videos where people change their bags. There are great videos on YouTube explaining products from companies and how to apply them. Good luck, you are a fighter, keep going. All the best.