Struggling with My Stoma

Hi. I've had my stoma since March. I'm really struggling mentally with it.

Do tell? We have been there. All of us. And we are here. Vent all you want because we get it, sistah.

I'm at ileo 9 years. I hated it

(stoma) the first day. I will hate it until they bury me. No biggie. I don't even think much about it now. These folks here are the true warriors.

Take time. Concentrate on physical healing and learning about your ostomy appliance. The mental part does take longer, but it gets easier once the physical aspects are learned.

I know. I was struggling mentally with having one before surgery. To me, it was like dying. Getting it was actually my plan B. My plan A was high-dose vitamin C to de-bulk the tumor. That didn't work.

It's been a year now, and I actually have a grateful and happy perspective. Without being able to have surgery, I wouldn't be here anymore, and death would have been excruciating! My partner, my family, and my friends would have been devastated and so sad, but now we can all continue on and enjoy. I don't ever have to worry about soiling myself because everything is tidy and neatly contained. "Little Button," the name of my stoma, likes to talk sometimes, but it's more funny than an embarrassment. I bought a product that you wear to quiet it down, but I'm not sure it's good to block any output, so I haven't tried it yet.

If you have a positive and happy thought every day, that will get you onto a good path. Before you know it, the cloud will lift, and you now have all of us here to support you along the way.

Think back to something you love and realize that you can still hold onto that.

😊

I tease my husband that I can poop faster than he can. 🤣 I don't hide mine. It hangs outside of my pants. I'm fat, so it even bounces sometimes. I swim in my pool and have been skydiving. The first time I went in the ocean, I didn't know about flange covers. So my bag came off in the ocean. 🤦‍♀️ Luckily, my swimsuit covered it. In the end, it was funny. Yes, it's a different way to live. But it's better than being tied to the toilet. Don't stop living; take on the challenge. YouTube is full of videos that can help, especially Maggie Trenton. It's called, Let's Talk IBD. Super helpful information. She told me about this site. Good luck.

Words of Encouragement from Ostomy Advocates I Hollister

G-Day Winnie,

Do you have an ileostomy or a colostomy?

Once you master working with your bag, that means first finding the right bag: a one-piece or a two-piece. All the companies will send you free samples, so try them all for a couple of days each until you get the one you're happy with. Some people have a problem with the adhesive not being compatible with their skin; that's why you should try them for a couple of days each.

Once you accept it, you're 90% there.

Regards, IGGIE

I hate my stoma; I know it saved my life, but I really struggle with it every day. I get very teary because of it.

Thank you. I hope it will get better soon.

I'm sorry to hear you struggled with yours at the start. Glad you're doing better with it now.

I know mine saved my life. I'm just finding it hard to deal with. Hopefully, soon things will get better.

Aw, that's amazing to hear what you have been able to do. Incredible, well done. I will have a look on YouTube, thank you.

Hi. Mine is an ileostomy. I've had it for 8 months now. I just hate my stoma. I struggle every day with it. I get teary because of it. I know it saved my life; I just find it hard to deal with. Hopefully, soon things will get better.

Great post, Winnie25... brave enough to publicly say how you really feel. 👍

In my opinion, there can be nothing worse than living a lie.

V.J.

Thank you. Yeah, I'm really struggling with it. I just hope things will get better soon.

G-Day Winnie,

How can you say, "It saved my life, but I hate it. Really."

How about, "Thank God I got my ileostomy, or I would be dead now."

Tell me in your own words what you think you would be like now if you didn't get your ileostomy. Now sit down and say it out loud to yourself.

Regards, IGGIE

Winnie,

Yep, been there…oh wait, still there. Ileostomy here (5 years) although I have gone from “hate my stoma” to “strongly dislike my stoma.”

In my view, there are 3 distinct feelings about owning a stoma: love, hate, acceptance.

MAO has been my rescuer for stoma-related issues and mental imprisonment…so please check in to this community regularly and feel free to help or rant - both are welcomed and completely understood. No one can understand how you feel except another who owns a stoma. I hope MAO will do for you what it did for me.

Hugs and best wishes…onward and upward…jb

Hi Winnie, it can be tough at the beginning. Can you say more about why you have your ostomy? My first was due to UC, the second due to J-pouch difficulties. Both involved pain, and accepting my ostomy was easy because I no longer hurt. What exactly is it about your ostomy that you hate? That will say a lot about why you're having a prolonged negative reaction to it. Our thoughts absolutely affect how we respond to things, and the only way past it is through it. That takes work and self-reflection. There's clearly something that's keeping you where you are emotionally. We'll try to help you get past it.

I got my stoma on an emergency basis due to a perforation in my colon. I have a colostomy. It saved my life, but I hate it. However, I have come to accept it.

Hi Winnie, I think someone else said it about going through stages: grief, anger, why me, etc. It's all normal, but stop and think about what your body went through: meds, doctor visits, worry about surgery. It's enough to piss off the Pope, and we've all been there. It takes time and support to get there, but eventually, we do. Good luck.

Trenton is Maggie's married name now? I didn't know that.

She is wonderful! I saw a short vid of hers where she talked about showing her stoma and everything else ostomy-related that was necessary as long as there was someone out there who could learn from it. To me, that's like the work of an angel or Bodhisattva.