Seeking Support for My Ostomy Decision

I’m about to have my colon removed and I’ll be getting on ostomy in December. I have had Ulcerative Colitis for 10 years and during a colonoscopy in February they removed 30 precancerous polyps. 3 months later they removed 40 more. 3 month after that it was 50. My dr suggested the surgery and a board of 5 others agreed. I feel like this is the only way I will be able to survive considering how fast growing these polyps are due to a genetic anomaly. I have no problem and have accepted this is what I need to do. Every time I have to tell someone about the surgery, be it friends, family or coworkers, they all act like I’m making the wrong decision and they need to change my mind. I guess I’m just looking for a little validation because it’s not like I have no support but every time I have to justify the medical necessity it just makes me want to cry. I feel like they just don’t understand what I’m going through. I joke and act like I don’t care but just because I’ve accepted my fate doesn’t mean I want it. Has anyone else dealt with this?

Turn the question back on them. If they were having your issues and knowing an ostomy would fix it, which would they choose? Nobody wants an ostomy but life throws people curve balls and we have to adjust to the pitch God is throwing at us or we just stand there looking stupid and are miserable (or dead).  I think I’d listen to a team of professionals that see this type of stuff daily over a family member or friend saying the opposite cause they don’t have to truly deal with it. Good luck. 

Hi 🙂

1. You don’t have to justify your ostomy to anyone.

This decision is between you and your medical team. 

If someone doesn’t understand what your medical team has concluded is the best choice for your body, it’s not your job to convince them.

Because of your age, people may make more comments. I’m about a decade older than  you but was in my early 20s when I started getting sick. People still make comments to me occasionally referencing how much I’ve been through for someone my age. 

When you are given the gift of time to decide when you’ll be saying goodbye colon and it’s not an emergency surgery, people may share their unwanted opinions more. They don’t understand and probably won’t. I had a friend who is a physiology professor and another Dr say to me I really needed to think seriously about having my colon removed… after I had finally said yes to the surgery.  They had no idea the hell I had been through to come to that decision with a team who is the best in the world at the type of surgery I had.

Your support network may need to be smaller right now with those who truly are a support. I’m all about educating others, but take care of you right now. You’ll have time to teach any naysayers all about your ostomy that is giving you the best chance at a good, full life. 

Magic: Listen to the doctors.

I, too, had ulcerative colitis for decades and occasionally had polyps removed, though not as many as you. Then almost five years ago, I woke up from a colonoscopy and the doctor said, "I think you have cancer." 

After we talked for awhile about ileostomies, pluses and minuses, he said: "Well, what do you want do? Live longer or die sooner."

You know you're doing the right thing, and doctors wouldn't perform surgery unless there was a need for it. I have a different condition than you; I have FAP. I had thousands of polyps by the age of 16 and had my ileostomy at 19. From what they found when I had surgery, I would have been dead by the age of 25. I'm 55 now, no regrets; I did the right thing. I didn't tell anyone, including family, until one week before my surgery, so no one really had time to try and control me by telling me what I should do.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Do not listen to friends and family here. They simply do not understand. I know nothing about living with UC, but it sounds like you are on a collision course with colorectal cancer. I've had colorectal cancer, and it's nothing to be trifled with.

It's possible that your friends and family are reacting to the idea of having a stoma. I certainly had some negative bias against it before cancer made it necessary. But now that I have not 1 but 2 stomas, I can attest to the fact that it isn't nearly as bad as I imagined.

Don't doubt your decision; your doctors are trying to give you the best possible outcome.

Listen to your doctors.  It's not happening to your friends and family but to you, of course they are concerned but if they understood that a better quality of life can and will happen with an ostomy they would be in your corner (as many of the posts on this site will attest).

The people I know with ulcerative colitis who have a permanent ostomy now have absolutely no recurrence of the disease and a far better outlook on life.

I had Crohn's so similar but different to UC but touch wood since my surgery 16 years ago (it's actually my stomaversary today) have also had no recurrence of the disease, am on absolutely NO medication (even better rarely need to see a doctor and that's not related to the stoma) and the surgery not only gave me back my health but a life worth living.

The fact is that they don't know what you're going through. Most people put themselves in your situation and think, "I'd rather die than have a bag," and that may be why they're trying to talk you out of it - they're projecting their own fear onto you. You're not alone; many of us have experienced this, but this is your decision and yours alone. Nobody actually wants an ostomy, but when it's the best decision due to polyps or pain, it's easier to accept.

Hi Magic,

  People can be both ignorant and cruel without meaning to be.........so it's best to just ignore them, as hard as that may be to do.  As an aside, if the 'genetic anomaly' you mention is Familial Adenomatous Polyposis (FAP) then you need to be aware that polyps can develop in both the colon AND the small bowel as a result.  If that's what you're referring to........I'd ask the docs if having your colon removed increases the propensity for polyps to develop in the small bowel.........as that won't be a good thing.  Otherwise, understand your options........make your decision........and stick to it without regrets.  Everyone else will soon have their own problems to worry about, so just let them be. 

;O)  

Welcome and thanks for sharing. I was a healthy 41-year-old man when I was diagnosed with bladder cancer. I eventually had to make a decision to either continue to fight the recurring tumors and run the risk of the cancer breaching the bladder lining, or have the bladder removed as a whole. At that point, I was in pain, had an irritated urethra from many procedures to remove said tumors, was incontinent... just plain tired. After speaking to my team of doctors, family, and my Lord and Savior Jesus Christ, it was a no-brainer. I did not want to gamble with my life any longer. I had the surgery in 2019 and have remained cancer-free since and am as fit and healthier than I could have even imagined. Of course, it was a lifestyle change and I did not want the bag, but we as humans are super resilient and have the ability to adapt to situations rather quickly. I know our situations are different, but ultimately it came down to me having to make a decision to be a permanent Ostomate. Don't know if you're a believer or not, but God is watching over you. He gave me a Urostomy so I could continue to carry on a healthy life. Good luck moving forward.

Fellow Ostomate,

Brad

Thank you to all of you you’ve made me feel so much more confident 💕

🤗

Hey Magic. Was in the same boat as you. UC for 27 years. I always knew sooner or later that I would end up with an ostomy bag. What ended up getting me wasn't the UC, but the polyps also became precancerous. 5 months post-op now and doing okay. I know it sucks, but dealing with UC also sucks.

With my family and friends, all seemed so sad and "sorry" for me. But again, it's better than being on biologics, and I am starting to feel it's better than dealing with UC every day. Thanks to people on here.

Cheers

Hello magic

Everyone else has said it all, so I only have two words for you ...

"Professional advice"

Hello Magic, 

I echo everyone's sentiments.  Just wanted to say hello, welcome to our group,  and glad you found us. 

I'm a year into this colostomy life, and while it's not what I ever signed up for, I am grateful every day to be here and pain free. 

Welcome and good luck with surgery, speedy recovery!

G-Day Magic, You are doing 100% the right thing. I welcome you aboard and please keep us up to date. Regards, IGGIE

Hi Magic, welcome to the site. I had UC for 3-4 years and after battling it with drugs and no good results, an ostomy was recommended, something I had never heard of. But that was 40 some years ago, and I wouldn't be here today if I hadn't had the surgery. So, I've been able to live a normal life working, raising 2 girls, and doing everyday things a guy does.

What a great thread, and what a gift this group is! This exemplifies the very best support that can be given freely to those in need. 

I'm glad you found us!

One of my adult sons burst into tears when he found out I had an ileostomy. I explained to him that I'd be dead without it, but all he could think of was the usual stigma and perceived "disability" it would cause me. So family and friends will always see the surface picture first, until they eventually realize the severity of our situations. Then they will be grateful that we are still alive and able to live happy and fulfilling lives.

Family and friends mean well, but they are not coming from a place of knowledge, just preconceived notions.

M

xo 

I'm here nodding my head at everything you wrote, Marjatta. I was getting ready for an ileoscopy and told the nurse that I had a permanent ostomy. She actually made a sad face and said, "Oh, I'm so sorry" to which I replied, "Why? I'm completely fine with it." She wouldn't let up and was really annoying me but I realize now it was just her emotions about having one without the facts that lead me to mine which included tremendous pain, lots of meds, missing wonderful events in my life, etc..  

Live longer or die sooner.

Just saw this as a reply early in this topic. It's fitting here.

You can't change someone's mind when they don't get it.

Put it simply to shut them up. Ask them:

"Live longer or die sooner?"

This quote actually came from the member's doctor when he explained to the member that they found cancer after a colonoscopy and the need for an ileostomy.

I resemble that remark.

Thanks.

And... it's a damn good resemblance!👍

Hi, I want to welcome you and echo all the encouraging words from others. You have a good support system here. Don't doubt your decision to have a second chance in life. I, along with so many, wish that we had not suffered as long as we did before having the surgery. You will do well. Please don't doubt yourself and feel like you have to justify yourself to others. They may mean well because they really just don't understand.

I’m really sorry to hear what you’re going through. I know how tough it can be to cope with the effects of cancer treatments. In my case, cannabis treatment really helped with the pain, nausea, and anxiety I was experiencing. It didn’t change the situation, but it made day-to-day life more manageable. I followed a treatment from Releaf.co.uk, a clinic in the UK that specializes in this kind of care, and it made a big difference for me.

I had over 50 polyps on one side of my colon and found one on the other. I wish I had told them only to take part of my colon. My biggest regret. I now have nothing but kidney issues, can't gain any weight, etc. It's been a year for me and it's been hard.