Needing Hope to Get Me Through Tough Times

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smeans59
Aug 21, 2023 5:44 pm

I am 10 days post colostomy surgery, and I am really struggling. I am also battling ovarian cancer and thought I was doing really well until I ended up with a bowel blockage. I am used to being very active and now have another obstacle to overcome. My blockage was high in my colon so my ostomy is above my belly button on the left side. Basically, it's impossible to hide. I'm a golfer and they tell me I will be able to play in 6-8 weeks. I'm thinking I'll need to get a wrap or something to hold it in place and disguise it a little. I'm still dealing with the vanity issue and will have to buy a lot of new clothes. I know I'm rambling, but I just need to put it out there. Physically, I'm feeling better - I walked a mile today, but emotionally I'm struggling. I am happy to be alive, and feel better than prior to surgery, but I'm at the this really sucks stage. Any encouragement from someone that's been in my shoes will help.

xnine
Aug 21, 2023 6:08 pm

I wear a tummy sleeve from a maternity shop mostly, covers regular bags and a bandeau (tube top) when I wear mini bags.

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Beachboy
Aug 21, 2023 6:57 pm

I'm 7 months post-op. Like you, my ostomy is on my left side above my belly button. Yeah.... sucks. My stoma protrudes about 2 inches out, and I have a parastomal hernia that pushes everything out. I look like the guy in the movie "Alien" when the little monster popped out of his chest. I'm a little guy, 5 foot 5 inches tall, 158 pounds. This thing is very noticeable no matter what I wear or what support belt I use. That being said....

I just deal with it. People stare at me sometimes. I ignore them or ask them if they want a peek at "Herb" my stoma.

I used to surf and was a beach boy for 45 years. So this "thing" I have is tough to take. But my life was saved because of it. I'm grateful I returned to good health, back to work.... got my life back.

Hang in there.... time will make it better.

Cheers,

Dan

  

smeans59
Aug 21, 2023 6:57 pm
Reply to xnine

Thanks. I knew someone would have suggestions. I never thought of a bandeau.

smeans59
Aug 21, 2023 7:03 pm
Reply to Beachboy

Thanks, Dan! I named mine Igor, because he's the little monster growing out of my side. Yep, this is just how it is - acceptance comes and goes. Glad you're doing well. Have you watched “The 100 Foot Wave”? It's a great documentary on surfing.

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
14jax71
Aug 21, 2023 7:22 pm

Hi, I have a urostomy in 2014 which is different than yours, but just like Dan said, hang in there. It will get better in time. Just like what xnine said, there also is a stealth belt.

 

Mark

Riva
Aug 21, 2023 8:34 pm

Hi there - welcome. 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, blockages, skin care, clothing, ostomy products, travel, activities, 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 not alone on this new journey of yours. Wearing a pouch does not define whom you are. There are solutions. We're here for you. Best of luck.

Beachboy
Aug 21, 2023 11:36 pm

Thanks, Riva! I didn't know about Ostomy101.com. Seems there's always something new to learn.

Beachboy
Aug 21, 2023 11:41 pm

Thanks for the documentary suggestion. I will definitely watch it. The biggest wave I ever dared to ride was 8 feet. I used to live in Hawaii. I spent my days on the beach when the surf got big. (Probably why I'm still here).

ron in mich
Aug 22, 2023 1:27 pm

Hi Smeans, I've had my ileostomy for 30 some years and like you said, glad to feel better. But some days it's a drag. There are stages a person goes through like sadness, anger, and asking why me. But they will pass and gradually you will feel like your old self and be able to do what you want.

smeans59
Aug 22, 2023 5:34 pm
Reply to Riva

Thank you! I appreciate the advice and will check out the education site. Every day is a little better.

smeans59
Aug 22, 2023 5:36 pm
Reply to ron in mich

Thanks! I'm taking it one day at a time and accepting I'll have up and down days, but it'll get better.

DexieB
Aug 22, 2023 7:26 pm

Hello, I am also new to this - I had a sigmoidoscopy on May 22 to make sure they got all of the cancerous polyp that was removed Feb 22nd at my colonoscopy. Pathology showed no cancer - so the colonoscopy was curative. I was just getting ready to celebrate the news when I collapsed in pain. Turns out that my colon was perforated during this sigmoidoscopy, but I didn't know until 4 days later as I was getting ready to celebrate being cancer free. Got sepsis and needed emergency surgery. I woke up with a huge incision, a colostomy bag, and minus my sigmoid colon. 21 days in the hospital with fevers 102-104.2. I understand your struggle, as I am also struggling and don't really know where to turn! My life has been turned upside down. I'm just learning as I go - reading online blogs. Seems impossible to hide it under clothing. I went back to work after 6 weeks, but recovery has been long (I'm 51 yr old woman, but was otherwise healthy) - I started running a fever again last week and passed out at the store. They think I had a virus and was just still weak from surgery. Now I've got bumps on my stoma so I need to get that checked out, as I'm paranoid it's polyps. Seems like it's always something! I hope to find some support here and people who understand! I was (and am still sometimes) really emotional about it, but I realize I'm lucky to be alive. Just wanted to say you're not alone. I hope you're doing well - hang in there!

AlexT
Aug 22, 2023 7:39 pm

Keep your mind busy and keep active, the worst thing is sitting around and letting your mind overwhelm your life. Get some sort of wrap, there are many variations to choose from, they do help a lot. It's more noticeable to you than others, 99% of people you'll encounter won't pay attention to it. And if someone asks, just tell them the truth and move on, it's not that big of a deal.

peteweelallmartin
Aug 22, 2023 8:31 pm
Reply to smeans59

I named mine Madam... because she really is a right little madam.... (I have called her worse names in our 10-year association) - so sorry to hear that you're having to deal with so much. x

Beachboy
Aug 22, 2023 11:59 pm

Hello DexieB,

You've been through a lot. Like you, I was extremely emotional during and after my stay in the hospital. Even now 7 months later, I find it hard to speak with anyone about what happened and the resulting colostomy.

First major thing for you: Stay hydrated! Water alone will not do it. You need electrolytes. I drink a Gatorade "Fit" 16.9 OZ bottle every day in addition to plain water. Don't chug... sip the drinks. Otherwise, you will just pee it out. I collapsed at work 4 months post-op. Hit my head on a machine. Was transported by paramedics to the hospital. All because I became dehydrated.

Wear a support belt. Most of us Ostomy folk eventually develop a parastomal hernia. The science is inconclusive if the belt prevents hernia... but it's worth a try especially right after surgery. I use a Nu Hope belt. There are many others to choose from.

Be sure and make an appointment with a Stoma nurse. They will help with skin issues and stoma health. Surgeons put stomas in, Stoma nurses keep 'em happy.

Mine sticks out... a lot. It bothers me... but I don't obsess over it. Like Popeye said: "I yam... what I yam."

You survived. All of us here are survivors. Every day is both a blessing and a challenge.

Let us know how you're doing.

Cheers,

Dan

DexieB
Aug 23, 2023 1:24 pm
Reply to Beachboy

Thanks so much, I really appreciate the tips and the pep talk! I needed it :).

smeans59
Aug 24, 2023 1:11 am
Reply to DexieB

Thanks! I know I'll get through this and things really aren't that bad. I was told to expect up days and down days. With everyone's hope and encouragement, I know I can do this. Best of luck to you, too!

smeans59
Aug 24, 2023 1:13 am
Reply to AlexT

Thanks! I did order a wrap, but it hasn't arrived yet. I'm learning what to wear to make me feel more confident. It's going to be ok. I appreciate everyone's experience, strength, and hope!

MoeMoe
Aug 24, 2023 2:15 am

It means, I completely understand your position. I am 6 weeks post-op and still cry. I was a pretty active person… running, hiking, swimming and now my life is on pause so I can heal completely after 2 open surgeries. I'm in no condition to give advice BUT I can definitely relate. I think the mental and emotional aspect of an ostomy (especially if it was an unplanned emergency like mine) is worse than the physical pain, at least it is for me. My son is my biggest supporter, when he sees me crying he just hugs me, doesn't say anything just hugs me and lets me cry. Your feelings are valid and normal, we can't feel like this forever. My stoma is waistline too and I have a short torso so pants, shorts are hard to find no doubt but when I'm feeling mentally or emotionally charged, I meditate and it helps a lot. You are strong, brave and bold! Wish you well my friend! 

ahynes111
Aug 27, 2023 5:57 pm

My stoma is above my belly button also. I wear longer shirts to cover it. I usually don't fret about it as it is said that most people do not notice it. I am over 12 months out and have been golfing all summer. No issues as far as I know.

Redondo
Aug 27, 2023 8:14 pm

I have had my ileostomy for almost 50 years. Give yourself some time to get used to it and heal. Eventually, you will figure out the clothes that best fit to conceal the pouch, and you will feel more comfortable. I'm sorry about the obstruction and the cancer and hope you can work through those too.

almelia
Aug 28, 2023 6:14 pm

No idea about golf as I'm a full-time wheelchair user - but I lived in body-con dresses for work pre-ileo and really miss having a waist! I now seem to live in leggings and cycle shorts that hold the pouch close to my body.

The one piece of kit that I do feel like myself in is my wetsuit! I really worried that my kayak spraydeck would put too much pressure on my stoma but I just sized up and watch what I eat before going out on the water - yesterday was a fab sea kayak trip around Coquet Island with puffins, seals, and dolphins - plus a bit of kayak surfing into the beach for a coffee break. Those days keep me going.....hang in there!

smeans59
Aug 29, 2023 6:32 pm
Reply to ahynes111

Thanks, that's encouraging. I hope to be golfing again in Oct.

smeans59
Aug 29, 2023 9:07 pm
Reply to almelia

Thanks! I'm glad you get out kayaking. I love the water, and seeing puffins, dolphins, and seals is awesome.

smeans59
Aug 29, 2023 9:08 pm
Reply to Redondo

Thanks. My mantra is never, never, never give up!

smeans59
Aug 29, 2023 9:11 pm
Reply to MoeMoe

Thanks! I'm taking it one day at a time. I have good days and bad days, but I can do this. Saw my doctor today, and right now, the cancer is more worrisome than the ostomy.

AlexT
Aug 30, 2023 2:20 pm
Reply to smeans59

I'm sure it is more worrisome. Always take some time each day for yourself that doesn't involve things you must do or everyday things. You said you golf, go play miniature golf and putt those 18 holes. Easy on your body and gives you some moving around and takes your mind off your issues for a bit.

Beachboy
Aug 31, 2023 2:18 am

Hello again Smeans59,

I've been living with stage 4 thyroid cancer since 1983, and prostate cancer since 2021. I hope your oncologist can obtain the correct diagnosis from the pathologist about your cancer type and, most importantly, staging. Staging grade will govern your treatment regimen. Staged too low, your treatment will be inadequate. Staged too high, treatment will be very aggressive.

Staged too low, treatment will not reduce/eliminate the cancer. Staged too high, you will suffer unnecessarily.

Make sure you are staged correctly. If you have any doubt, get a second opinion. Become your own "expert." Read as much as you can about your particular cellular type. Get familiar with treatment options. All my doctors liked the fact I researched my condition and treatments. Don't be passive. I go in and explain what I expect, and my reasons why. Don't be afraid to refuse a particular treatment. I've done it many times. A complicated biopsy to see if I'm a candidate for "targeted therapy." I politely refused.

You don't want the cure to be worse than the disease.

 

 

 

 

 

 

 

 

 

 

smeans59
Sep 03, 2023 6:38 pm
Reply to Beachboy

Thanks. I love my doctor, who only treats gynecological cancers. He is my oncologist and surgeon. His wife is my pathologist. Unfortunately, the last treatment wasn't successful, and I ended up with a bowel blockage. So 3 weeks after surgery, I decided to take the cruise my husband and I had planned before my recurrence. Good idea or not, here I am. My surgeon for my obstruction said GO, live your life. My oncologist wasn't so sure. Hopefully, we'll have good memories, in case of the worst outcome. I already am on a chemo holiday and have chosen not to do a regimen that is severely toxic. Hopefully, I can get in a clinical trial.

So, traveling for the first time so soon after surgery was a challenge. Travel time with layovers was 20 hrs, and I'm still building up my strength. Emptying my pouch on the plane was not fun, nor the airport, or on the ship. But, I'm adjusting. Today, I rested all day. Eating is challenging, too, with all the rich foods. But so far, so good. Sorry if I overshared.

 

Thanks for your advice. I'm not going to give up. Hopefully, we'll find something that works. God's got me!