6 Things I Wish Someone Had Told Me Before Ostomy Surgery

Laura Cox, Shield HealthCare's Ostomy Lifestyle Specialist, talks about what she wishes someone had told her before her ostomy surgery. She doesn't regret the surgery, and she appreciates her current quality of life -- but she does wish she'd had a little better grasp of what her future held.

[jerf]

Great points. I'm only 11 weeks in and it feels like there's no end to recovery in sight. Insights from people like yourself who are many years into living with an ostomy really helps. Thank you.

[tellyourfriendsitsmejordi]

I didn’t even have the choice. I woke up with an ostomy during an emergency abscess surgery. I feel so much better honestly.

[ivannovak]

You just made me a brave/braver old man. I'm having my surgery in 3 days.
Wish you a long happy life.
Thank you for the video.

[rongrant]

My partner just had ostomy surgery a week ago, and it really is a brave new world in one way, but it's still the same world in most ways. It's an adjustment, but she no longer worries about timing everything for washroom breaks, or not going places because of fears of incontinence. And no more 'adult diapers'. The world has opened up for her again, with a twist! I think the thought of having a colostomy bag it is much worst than the reality.

[leomagbalot]

Am having a total fear having ostomy.. my doctor told me that if worst comes worst, colostomy is the last option.. but upon hearing ur testimony, you gave me a new ball to hold on.. my condition really restricted me from doing all the things that I want because of pain . But thank u.. Thank u for making myself decision today.. I'll go ahead and talk to my soecialist about my readiness and all to have colostomy.

[ScottyKirk]

Laura you are my hero! Kind of funny, not too long after I got my ileostomy I see you on Tosh.0! Your positive outlook and humor helped me greatly! My colitis was so bad I had to have emergency surgery bcuz my colon was literally disintegrating due to the extreme inflammation. My body rejected the Humira and Remicade. Made me way sicker than the colitis did. I feel 1000% better after the surgery. I really live a pretty normal life and no longer have to worry about finding or running to the restroom. It was a lifesaver! Mentally and physically.

[aaronwilliams]

I'm very happy for you. I hope you live a long and healthy life.

[ninjawivamullet]

thank you for the honesty, had my bag fitted two months ago, so im learning and new to this and your advice is very useful, ill add i cant imagine, playing football (soccer), running or cycling. but you making me think maybe i can/ will do over time so thank you :)

[cosmos]

This honestly would have made me feel better before going into surgery.

I was diagnosed with Crohn's Disease at the age of 5, and I took pills to manage, it worked for about 4 years until I kept having excruciating pain in my lower belly area whenever I ate. It hurt to the point where I'd starve myself just so I wouldn't hurt anymore. Whenever I did eat, I'd cry in pain. (Along with explosive Diareahh, but hey) I don't remember why, but for some reason, we never went into the ER, maybe because the doctors told us to wait until we got an appointment? But we did end up going and they switched me onto Remicade ( I hated it because I have a phobia of needled, which sucks because before I was 5, I ALWAYS sense I was born had these issues and the doctors said "I was too young to have anything wrong with me" But would run blood tests anyways. But I'm getting better with needles) 2 years later, Remicade stopped working, and I felt the same pain as I was when I was 9. So they changed me to another infusion drug ( I forgot the name it was long and complicated) and then again, 1 year later, that drug stopped working. This time they didn't change it but increased the dose. I was taking the dose of an overweight man. That didn't work but they didn't do anything because there was a slim amount of treatments that I could take. They admitted me into the hospital because I was 12 and I weighed 42 lbs. They gave me a G-Tube and tried that, but it didn't gain me many pounds. Then they turned my parents into social services because they didn't want me to have another scoop, because the last one almost tore through my stomach. Then they recommended a colectomy, which at first we didn't want, because any 12 year old wouldn't want surgery. We asked if we could change the drug first, and they agreed. I got my first dose of Stelara, (Which the first dose of Stelara is an infusion, and took me 7 tries to get a needle in.) They finally got the needle in and I had my first dose. It didn't do much. They still suggested the surgery. We finally agreed to it. I was in the recovery room for almost 3 hours because I was in pain. When I woke up the doctors told me that we had the surgery just in time, my colon was so infected. At first, the bag would ALWAYS leak at night, because it was placed right by my side, and I was so skinny that the base would come undone. And John, lovely John was my night nurse who came into my room when my bag would leak at night, unhook me from my several IV cords on both arms/hands. (He got married, yay!). I'm 13 now, no more leaking. I weight 87 lbs, and I'm getting back into dancing! I get my Stalara shot every 4 weeks.

Sorry, this is so long, I really just needed to vent.

[geoadventure]

Beautiful testimony, beautiful mind. God bless you for sharing

[thriversurvivor]

Thank you for sharing, Laura. I'm 2 weeks post op and feel like I woke up in the upside down. Accepting the new, weird reality is hard and your videos help with that:) I was inspired to start my own video journal of this crazy journey.

[Heinsworth]

Thank you so much, I was very depressed till I watched this clip.

[freakx]

Being a patient of colon cancer, i know it makes you feel weak, or disabled but it also opens up life in a new way you never knew or experienced.

[dna]

Love the positivity!! But it is hard. Swimming is something I learned how to do, after a failure. I get down, but I get back up.

[MrDpu]

I'm sorry you are having to go through this life changing event. You look young and active to where you get to choose your life style instead of the situation choosing your life style for you as previous a comment leads to believe. Keep moving forward to a better life and there won't be a reason for you to look back. God bless.

[shineymcshine]

Even though i may not live the lives of people like you & others with this, I would like to say the confidence & encouragement you bring is IMMACULATE! Seeing you speak positivity onto yourself & others is very inspirational. My heart & love goes out to you & others & so much respect🥰 The sky is the limit. Life is too short to stress🥳

[RidingHawkify]

Thank you so much for sharing, helped me to know it's ok to be scared and I'm not alone as I head to surgery in a few days. Be well.

[dianelyvelazquez]

One important distinction should be considered when you’re diagnosed with cancer in your bladder. The usual procedure is to remove that and connect the two urinary connectors coming from each kidney to a piece of thin intestine to conform the stoma that will protrude out of your stomach skin to the bottom right side of it. You must insist, being a man, (1) to Do Not remove the full prostate, if it isn’t affected by cancer. (2) reinforce the tommy skin to prevent a hernia appearing some years later. (3) design the stoma in such a way to prevent movement that will cause internal urine leaking onto the skin. Urine is a highly irritant fluid that causes intense skin rash.

[karenrich]

I didn't get a choice. I went in the hospital on May 14th, was diagnosed with stage 4 colon cancer, and didn't get home until July 30th. Then I spent a month confined to my bed except to attempt to get to the bathroom before the bag exploded. No one knew what to tell me to keep explosions from happening. I had to reschedule my cancer treatment 3 times due to explosions in the car en route. This meant I couldn't use the car service due to accidents. It was 6 weeks after getting home before I could think about going to church. And I still haven't gone anywhere more than an hour from home. To make it worse, my support group talks about all their traveling, how they are planning their surgery (unlike me!) and they forget they even have an ostomy.
When I mentioned that I was planning to have a reversal surgery, people told me I would spend ALL my time in the bathroom. Well, how is that different than my life NOW? I got no choice on anything.

[wendybradley]

I’m glad all has worked out well for you and will many others too. 3 and half years later with an ileostomy and a struggle and fight I have to give in to the fact my body has just rejected and doesn’t like it, causing terrible diversion colitis and that’s with an end ileostomy😒. Wish everyone well on their journey xx