Struggling with Post-Surgery Adjustments and Upcoming Family Reunion

It'll be 6 months from my surgery in 2 days, and up until now I thought I was dealing and adjusting with all of this pretty well. Then all of a sudden, out of the blue I wasn't! I don't know what triggered it, maybe planning on seeing some relatives this weekend I haven't seen in 40 years? The fact that I not only have 2 stomas, but also now developed a hernia the size of a small watermelon? Whatever the reason, it sucks!

The hernia is actually causing me more grief than the actual colostomy. It's very uncomfortable not to mention impossible to hide, no matter how big a shirt I buy! Surgery is not an option for me since I have a pretty severe case of COPD and I'm oxygen 24/7.

I know I just need to put my big girl panties on and move on, but all of a sudden it's not so easy? Rather I'm sitting here crying feeling sorry for myself. I'm thinking this reunion coming up in just 2 days with a few of my long lost relatives is what triggered it. I certainly didn't look like this 40 years ago! Not counting the normal aging process, which is no big deal to me, I now have this huge belly looking like I'm 6 months pregnant, and the worry they will smell me sometime during our visit. The oxygen doesn't even bother me since I've grown to being used to the tubing going up my nose and being attached to a portable oxygen machine when out and about.

I know there is nothing anyone can do, but maybe just some words of encouragement might help?? I want to be strong, I prayed for God to give me the strength to get through this rough patch, but for some reason I'm having a little glitch??

Hi there,

I am really sorry you're having a hard time. And I know it's hard to see when we are in the midst of going through tough times. God's hand, but be assured he is right there with you, giving you more strength than you probably realize in this moment, and he is sitting right next to you, wiping your tears away, holding you in his arms. Remember too, tears are a prayer to God, he knows everything you are feeling, thinking, and going through, and he won't leave you.

As far as the reunion goes, just think no one is as cool as you rocking a bag, and overcoming what you have overcome, it takes strength. Remember you are a warrior and ostomy warrior, and that is some bad ass shit! (Pardon my cussing) Wear it loud and proud and with the hernia, wear it proud, half of those people or more probably wouldn't be able to handle even half of what you have been through. The best thing is to crack jokes, and be confident, the more comfortable you are, the more others will look and be like, "Dang, she is bad ass man and is rolling like a champ." I wouldn't worry about scent either, if you haven't smelled yet, you'll be golden. Keep your deodorant with you and make sure your bag has it in it, and most of all, have fun, laugh, dance, and have a great time.

I'm guessing the oxygen, the stomas, and whatever else you got going on has kept you alive so you can attend this reunion. So, put your favorite outfit on, your makeup, and show up to the fight as showing up is half the battle. I'll bet you forget all about your stuff for a little while while you hang out with relatives. And when you get home and you're all alone, look up, say thanks, and keep going forward. The worst thing anyone can do is let it get into your head. Stay busy, stay active, and spend each day doing what you want, life is too short to worry about things you cannot control.

Oh Deb, sounds like you accepted your stomas, were tooling along and now, as your family reunion nears, you're thinking more about it and feeling things more deeply than ever before. I do think timing is everything, as are situations and particular groups we spend time with. Give yourself time to feel whatever you're feeling, cry it out and THEN put on your big girl pants. I have a college reunion coming up that's causing me some more anxiety than other situations. Maybe because they knew me when I was young and healthy. I will share what a wise therapist once said when I was in the midst of all of my surgeries and anticipating a get-together: "Do you think you're the only one with physical and medical issues? They're all going to be taking their meds, using their CPAP machines at night and dealing with their own stuff." It had never occurred to me before she said this. I just assumed I was always going to be the only one with medical/health woes. Her words made me look at things differently. Maybe they'll help you.

Deb? Debb? Debbi? (Am I getting close) - I feel like there is something to some of these milestones 12 weeks after, 6 months, 1 year. I just passed the 6-month mark from my 3rd surgery (I think it's month 7 now) - it was a great way to end 2022, said me never.
Are your stomas on the same side as each other? How do you feel about non-form-fitting, flowy dresses? On my profile, there is a picture of me at my daughter's recital wearing a black dress, and it's a throw-on-and-go style. I bought a lot of dresses last season that have an empire waist so they're good at hiding ostomies, hernias, pregnancies, etc. Flowy tunics and either low-waist leggings or high waist. If you're able to find some clothing that helps you feel more comfortable, it's one step forward. Sometimes it's hard because instead of putting on the big girl pants, we have to find different pants and a new way to move forward. It's okay to cry while you figure it all out too.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Have you tried a hernia belt or a binder? Some of them are custom made, others can be bought on Amazon. That may help you with your hernia.

Some of the things we dread turn out to be not so dreadful after all. That hernia may be removed and the scent issue may not arise at all. Many of us experience dark and dreary days, but the clouds do lift and sail away. Have to feel optimistic and smile away the troubles. All the best wishes.

I always try to turn to humor or music when stoma-mania takes over so it doesn't get the best of me. I know, I know, easy to say and ever so hard to control but someone as brave as you with what you have been through can do it!

One of my favorite songs to sing along with is -

"A Much Better View Of The Moon" by Jamie Anderson

My favorite verse in part is:

"In the vastness of space

The ever-expanding universe

We are all puny specks of galactic dust

Here on Mother Earth

Now I ain't no preacher

Don't know if I'll reach ya

But here is humble advice

Use your own common sense

And you surely will live

An uncommonly sensible life

If you lose your job

Sleep till noon

If the news is bad

Watch cartoons

And if your house burns down

You'll have lots more room

And a much better view of the moon!"

Chin up and get to that reunion with a smile on your face

and a much better view of the moon!

Hugs, jb

I love your attitude!!

Hi! It's Debbi. My stomas are right next to each other about 5 to 6 inches apart. I've been buying some new pants a couple sizes larger than usual, extra extra large tops, but when I stand up I still look about 6 months pregnant. I'm short, 5'1" and I have a small frame, so long dresses are really not very flattering on me.

Thank you for your response. I've tried a hernia belt, but they only have one hole, and I need two. Where would I find a custom belt?

Thank you so much for your post.

I know you're right, everyone has their own issues they are dealing with. After all, this is my family, so it's not like they will judge me, it's just my silly thing. I'm not even sure if the reunion is the trigger or not? It may be this hernia and how uncomfortable it is? I don't know?

Thank you so much for your post.

Just a thought.... You might try looking for a seamstress who can jury-rig a double hernia belt for you using 2 single belts.

I'm 5'2" :)

The empire waist dresses I mentioned are actually called mini dresses, but when you're my height that's just a dress :)

Debbi, look at ostomybagholder.com or contact StealthBelt as they can make custom belts for 2 bags and also hernia support. NU-Hope can also make a double ostomy/hernia belt. If nothing else, duct tape fixes everything. That was a joke in case people don't get my humor. Smile, it's Friday and you got relatives to see and enjoy spending time with. BTW, I put in a special request for you. So, when you go outside and you feel the sunshine on your shoulder, that's you know who with his arm around you helping you through this.

It's okay to have off days and experience upset over your situation. Give yourself a break. Allow the tears to flow. In the end, you will feel better and do better if you let it out. Keeping it in will do you no favors. Chances are your relatives are just as conscious about how they look as you are. Focus on re-connecting, not on your appearance. Try to have fun. I doubt anyone will even comment on your appearance, but if they do, just explain briefly that you have a medical condition and that you are doing the best you can with it. It's who you are that they are coming to see, not what you look like.

Lee

Thank you AlexT! I appreciate your words of encouragement. I think I got this.....I think lol. I'll let you know how it goes.

Everyone's responses really helped, thank you all so much!

Thank you Infinity.... I know you're right, you all are right. I guess I am expecting a lot from myself, it's only 6 months since my surgery today.

Hi Deb

I am so sorry you are going through this after 6 months. I can't say we have all been in your shoes because I can't imagine two stomas and a hernia the size of a watermelon. Many here have had some good recommendations about a hernia belt and different clothing that you might be able to try.

Having said all of that, the great thing about going to your family reunion is I am sure the support and happiness from your family that you will receive. Don't let the idea of your appearance rob you of enjoying your family and friends. Above health, they are my biggest blessing in life and probably yours.

Go and enjoy the time with your family. God bless you.

Connie

Deb, did you go? How did it go?

I had a HUGE hernia (I looked 7 months pregnant) and most people didn't even notice it. What they reacted to was my face, smile, and the positive energy I was putting out. I understand how self-conscious you must feel, but please don't deprive yourself and your family of going to the reunion. It will mean the world to you and them, I am sure. Go enjoy your relatives, share stories; these times are fleeting and you don't want to look back with regret. Walk in with confidence (and a fabulous baked good to share); you will be the hit of the reunion!!

Enjoy yourself :-D Lynn

You can cut a hole in the belt yourself. My ostomy nurse did that for me (I have two 'holes' too). And put some deodorizer in your pouch for your own peace of mind.

If your relatives are worth seeing, they will be thrilled that you are alive and there! Your brain and love and connection to them is what should matter. Be glad you're still around and able to attend.

Hi Debbi,

I hear you. I have two ostomies as well, and it's not a picnic. My ostomy nurses assisted me with measuring and ordering a custom hernia belt. They do help hold stuff in and make you feel more confident. Trust me, it takes a while to deal with everything. I'm 3 years out since my surgery, and I still have my moments. But I am here, and I can continue on. Focus on seeing the long-lost family and the good parts there... everything else will come in time.

Thank you very much for being brave and vulnerable with me! I have a watermelon hernia also - and it is worse than the ostomy to live with.... I love you!

Warm hugs and much love to you!!!!!!

Thank you so much!!

Yes, I went! It was wonderful! Nothing like I envisioned, I'm ashamed to say. I really feel foolish now for stressing so much. You all were awesome! With all your encouraging comments, I am so grateful to all of you who responded! Thank you from the bottom of my heart!!

So happy you went and had a wonderful time

- Jodie

Oh yeah! I am so glad you had fun