Adjusting to Life Without My Husband's Help with My Bag

@lori.. Yes, under emergency conditions the doctors get in and get out. They just fix what needs to be done and see how that goes. Emergencies like that can miss and mess up things. Everyone has a story about that happening. You are not alone in that. So now I see why the location was poorly picked. Thanks for that info. It's pretty common.

So now look forward to the reversal. And the key behind a successful reversal, we believe, is a lengthy large colon. Do you know its length by chance?

Thanks @warrior

I don't have that detail tbh I may have been told it but I was so unwell after the op with tubes and drains everywhere the first 10 days are a blur. I have an appt with my surgeon in 2 wks so I hope to get all the details then

Good that it should be reversed soon. 

Can you try a two piece? So you can see the stoma as you apply the flange? 

I have no problems doing my own bag changes, and I still find one pieces more challenging because even with the window it’s hard to see what you are doing. 

I would suggest a variety of mirrors, maybe even trying to apply while lying or reclining in a chair to get a better view of the stoma- and using a two piece - so you can apply the flange, then stick the bag to the flange (adhesive might be better than click/mechanical connection).

Something I just want to add; once you get used to doing your own changes, and are proficient at it, you may well be like me.  That is, I wouldn't even want anyone else to do my appliance change, as I know just how I want it done, and think I am better at it than anyone else, who obviously doesn't know my body like I do. 

Terry

This is not gonna be easy, but taking it under your own control will kind of free your mind. I always manage my bag myself and after 15 years it's just another daily routine. I'm not saying I'm better, nor that it is easy. It will be hard, it is hard. But do it, you can, you got this! Be strong!

Words of Encouragement from Ostomy Advocates I Hollister

Wet your fingers when working with the paste.  It makes it a lot easier to mold and adjust to what you need.  

I'm kind of surprised that a hospital would send you out without ensuring you could do bag changes yourself? 

More importantly- a simple hiccup like illness or accident (even just a hand injury) might render your hubby unable to help.  As others have said, just give it a go. 

I had the opposite issue in a way - I was having an extensive elbow surgery that meant I might be unable to manage: my 20 year old Son insisted on learning how to do my bag change in advance of my op just in case I couldn't. I was reluctant but realised he was right. 

Good luck! 

Sounds like a few visits with an ostomy nurse would go a long way to getting your skills in order. There are products besides paste that you could be using to simplify your process. There are techniques you can learn to overcome the obstacles. I truly hope all goes well for you with the planned reversal, but crap happens and plans change. Do yourself (and your husband) a favor and get on top of self-care!

I am lucky enough to have a continent ileostomy which doesn't require an ostomy bag. It does, however, require me to use a catheter to empty myself. Different pros and cons. J pouch, K pouch, etc.
If you don't want or can't have that option, please learn how to change your own appliance by yourself. Just the stress of always depending on someone else for your care puts way too much stress on yourself (and your partner!). My sister has to change her husband's ostomy bag because he refuses to learn. A stoma nurse or the ostomy company can help you gain the confidence to help yourself.

Simple and straight advice.  You've dealt with the challenges of this disease.  This is a far easier challenge.  As stated above, lay out your supplies and trust yourself.  YOU CAN DO IT!

SharkFAn

The first day I left the hospital, on the toilet, attempting to change my pouch, everything went everywhere. My Husband was there. I was in tears. He just cleaned up, told me, "It is ok, I got ya." He was amazing. So thankful he can handle my condition.

Two days after my hospital release, my Husband went with me to see my ostomy nurse. She was amazing. Husband was right there. Learning as was I. My ostomy nurse looked straight at me and said, "You must learn to do this yourself." I understood.

Been a bit over a year since my "So called reversible ostomy." (No reversal yet due to other things.)

Yes. I do it all myself. When my stoma changes, I show my husband. He is fine seeing my stoma and a pouch hanging on me.

You can do it all yourself and should. When that happens, let you husband see you, your stoma, any changes, the pouch.

The ones that really love us are there, always.

This is the exact opposite to me! My husband has never even seen my stoma, let alone been in the room when I change the bag. I live in fear of not being able to do it myself and having to have help. I cannot bear the thought of anyone else seeing it. Changing it is no big deal and takes a few minutes every other day, I think you would manage just fine. 

Hi there, my stoma is low down and in a large dip. My op was in June. I thought it was important for my husband to know how to change them as I have mobility issues. A mirror made a big difference at first, but now I only use it to check afterwards. I find it easier to position at the bottom first as I have a small fistula. I think with my dip it was better for placing the rest of the bag to see where it was going.
Well done, you are coping with what most people find hardest, cleaning. Try not to get a mental block about this; just start trying with your husband watching. Good luck.

Thank you for understanding and being kind. It's not one bit easy when you are almost blind to where the stoma is. It is not that I don't have the ability to manage everything myself; I absolutely do. I'm normally a very independent person; it's just extremely hard with the placement, even with a mirror.

Everyone encounters different issues and this is mine. I wish everyone could take a breath and be kind with their words.

Have you considered irrigation? No bag changes. Once a day you irrigate, put a stoma cover or patch over your stoma and you're good all day. I'm still learning, but it's such a great feeling to be so clean with nothing against my skin, except the little patch.

You need to know what type of colostomy you have; certain surgeries make it impossible, but it's well worth investigating.

Yeah, it would seem the word "blind" is in good use here since you've been explaining you can't see your stoma for obvious reasons you mentioned. People don't read or comprehend; it's like asking... asking Helen Keller to do this...!! Chill, folks.

By the time, if and when Lori can do this by "hit or miss" by herself— attempts... or her loyal husband, it won't matter as she is getting a reversal soon.

As for irrigating, that's done with a colostomy. I believe Lori has a temp. ileo. by way of reading her story.

I could be wrong. Apologies if so.

Thanks, Warrior, and you are correct, temp ileostomy.

My ostomy is my own and has been for 50 years, and fortunately, I have never needed help with it.

Also, it appears to be quite contentious, I have never felt the need to "flash the bag" and have always kept it concealed as I never thought of it as a "badge of honor" but just something that made me slightly different.

I certainly hope your ostomy is your own and not borrowed like a toothbrush. 🪥😆😅🤣😂

I hear ya, I hate my bag too. The only good thing about dying is I'll get rid of this damn bag for good.

My fear is being physically unable to change the bag myself.
I have no one to help.

Sounds like you're using a one-piece system? Have you tried a two-piece? You can zero in on your stoma better. And yes, we do name them, but usually only if we have to keep them.

I can understand how daunting it is to do bag changes al9ne.  When I came home from being in the hospital for most of July, I was terrified to do it myself. I figured out what works for me and it gets easier each time. Bag changes started out taking me an hour and 45 minutes. Now, it takes 30 minutes. I have an oval shaped stoma that changes in size (due to a hernia) and is in an awkward position, so it is annoying.

I have a cheap full length mirror that I position in front of the toilet with the bathroom door propping it up very close to me. I make sure both bathroom lights are on and that I have my glasses on. I currently use a two piece system, which makes placement easier to see. I have to do skin prep everytime due to issues with adhesives. 

I have luckily never had a blowout in public, but would be lost if I did. I can't see the stoma placement well standing up, so it would be very difficult. I do bring my supplies everywhere though because I know that only I can get it done if it happens.

The happiest day in my current life was when my wife did not have to get up several times at night to help me empty my pouch; the second was when I could change my appliance all by myself. I started with a spreadsheet, step by step, listed what I needed in order of their use, then listed what is to be done, in order, followed by spreading out everything. Choose a time when your stoma is the least active, for me that's around 7:00 a.m. I hang an open bag locked in my underwear under my pouch, just in case, leaving nothing to chance or panic. The first few times, my wife watched, not helped, just watched. That was almost a year ago, today my wife sleeps all night and I change my pouch twice a week, which takes about 15 minutes. Oh, I enjoy taking a shower first thing to wake up and begin with a clean body. P.S. No notes needed anymore, I have it down, can do it all anywhere. Terry

I haven't changed mine by myself yet. I can't really see where it's located and I'm so worried I will get it all wrong.

I sure could use some support.

Practice makes perfect. We all got it wrong in our beginnings.

It's like riding a bike. Over time you will be telling other newbies the same thing as you perfect the way you do it. Fear is natural but it will fade in no time.

The biggest drawback I am seeing and reading from threads is being unable to see the stoma to place the appliance properly.

This fault is likely poor judgment on the surgeon's placement, or perhaps a large body frame is secondary.

Helen Keller once said, "Blindness robs you of things; deafness robs you of people."

The members here having trouble seeing their stoma are not blind. Just unable to see that stoma, so I think about H.K. overcoming impossible odds.

And in time...she did.

Don't be too hard on yourself - inability to line up your appliance.

In time, it will come. Or perhaps a relocation better suited for you.

Read all of the above posts. I had self-sufficiency thrust upon me through divorce. It's human nature to fall into complacency when a partner is willing to assume what really should be our own responsibility. But as soon as I was confronted with the necessity of taking care of myself, appliance changes became second nature. What has surprised me here are those Ostomates who haven't yet come to an acceptance of this, our new reality. Of course, I'd much rather not have needed to learn first-hand the advances medical science has achieved in gastroenterology. However, it sure beats the alternative! When I was released from Mount Sinai Hospital after my first colostomy (to be followed a year later by an ileostomy), I had my wife stop at our local diner on the way home. What a monumental feeling of appreciation to be able actually to sit 'uninterrupted' in a restaurant and enjoy a juicy diner-cheeseburger with succulent red onions, crunchy pickles and, of course, Heinz Ketchup! Barring Alzheimer's, I'll never forget my renewed pleasure of being able to really and truly live again, albeit with a bag. But don't forget the benefits, either. As a male, I no longer have to concern myself with having to sit on public toilets. Plus, now I can multitask - I can drive and poop at the same time without consequence. So, to me, it's all a matter of perception. Appreciate the ability to enjoy life away from bathrooms and dive headfirst into a life renewed...

I need my hubby's help because of how the stoma is. I told him today he needs to start helping me figure out how to do it myself. Hopefully, it won't be too much longer as my doctor said we will talk about reversal next month.

My husband helps me.

I told him today he needs to start helping me do

it myself.

Hopefully, it won't be much longer.

Doctor said we'll talk about reversal next month.

Firstly, hopefully your husband is going nowhere, but secondly, if you can try to manage your bag on your own. It'll mean if you're ever on your own and it bursts, you'll be able to manage. Good luck xx