Reflecting on One Year with My Stoma Re-location

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285
infinitycastle52777
Mar 29, 2024 3:14 pm

I have been on these forums for one year now. My stoma re-location happened a year ago tomorrow. I can't believe it's been a year. It was when I got my re-location that I was finally able to wear a bag. I got my first stoma on Jan. 1, 2022. And from then until March 30, 2023, I was not able to wear a bag due to the location of the stoma. I don't blame the doctor for placing my stoma in such a bad spot; it was emergency surgery and a life-or-death situation. She didn't have time to measure or mark out the right place for a stoma. But if you can imagine my situation for a year, not being able to wear a bag. My skin was totally eaten up, and I just had to wear a diaper around my waist and do the best I could to survive. I was on heavy painkillers for most of that time due to the pain of my skin being eaten up. I was planning a reversal up until 2 weeks before my re-location surgery. I met with the doctor for what was to be a pre-op appointment, and she came into the room and said, "I'm sorry, but there is no chance of a reversal; there isn't enough colon to re-attach." I was so upset. Why hadn't she told me this months ago when she had said I could have a reversal? I mean, I was planning and planning and so excited. Then, just 2 weeks before the surgery, she dropped a bomb on me. She basically said all she could do was re-locate my stoma so that I could wear a bag. And so she did that on March 30, 2023. And for the first time, I was able to wear a bag. It was a whole new experience. I can't complain, as it has allowed me to return to the world of the living. I can go outside my house, go to the store, go to the park, go out and enjoy my life virtually pain-free. I wish I had been able to have a reversal, but since I can't, I will just have to go on living with a bag. So anyway, I was just reflecting on the fact that it's been a year since I came here. Everyone has been great. I couldn't ask for a nicer bunch of people. You are all helpful and supportive and often funny and uplifting. Thanks for letting me be a part of this.

Lee

aTraveler
Mar 29, 2024 6:26 pm

My ostomy was performed in a manner that would allow me to have a reversal. After the surgery was performed, I experienced many complications (e.g., fistulas, embolisms, deep vein thrombosis, afib, gastrointestinal hemorrhaging, etc.). I was advised to wait a year before considering the reattachment. At my second post-op appointment, I had frank discussions with the surgeons who performed my surgeries. I was informed that a reattachment would, in all likelihood, lead to as many or more complications than the original surgery. I was further informed that neither one of them would perform the surgery—they would refer me to a surgeon who specializes in complicated reversals. I have decided not to have the reversal. I have a colostomy, and I change my closed pouch 2-3 times per day and the baseplate/wafer/flange every 4 days. I am pretty adjusted to having a stoma; my primary inconvenience now is the crinkling sound the bag makes. I understand your heartbreak about not being informed earlier about not being able to reverse the stoma.

 

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Bill
Mar 29, 2024 7:10 pm

Thanks you two for sharing your stories. I just love reading about other people's experiences, not least because it reminds me how fortunate I've been not to be in that situation. 
I wish you both (and everyone else)  the very best for the future.
Bill

infinitycastle52777
Mar 29, 2024 8:09 pm
Reply to aTraveler

Wow, that is a lot of complications. So sorry to hear that you have been through so much. The doctor told me if they did a reversal, it would only move the problem and that I would have more problems. She said she wouldn't do a reversal, but she would do the relocation. Incidentally, she did my gall bladder removal at the end of last month. That at least went okay, though she had to make 5 holes instead of 4 to get it out without harming my ostomy, which when she relocated it, she put it right up next to my gall bladder, not knowing that I would later have to have it out. She said she wished she had known I needed it out before she did my relocation because she would have taken it out then. I have an ileostomy, and I use drainable pouches. As for the crinkle sound of the bag, you could try wearing a wrap or a bag cover that might muffle the sound. I have kind of gotten used to the crinkle sound my bag makes, and I don't apologize for it.

Lee

infinitycastle52777
Mar 29, 2024 8:10 pm
Reply to Bill

That is the great thing about this site, you get to know people's stories and maybe even help someone or at least give them a place to be heard. I love it here.

Lee

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
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DexieB
Mar 29, 2024 9:04 pm

That must have been so hard. My heart goes out to you. But I am glad you are here and doing ok :) You are stronger than you know!

Morning glory
Mar 29, 2024 11:04 pm

You have been through so much, Lee. Glad you are here and contributing. You're a survivor and are strong.

infinitycastle52777
Mar 29, 2024 11:51 pm
Reply to Morning glory

Thanks for saying that I am strong. I have a T-shirt I got shortly after my relocation surgery that says "You never know how strong you are until you have ostomy surgery" and then below that it says "Endurance."

infinitycastle52777
Mar 29, 2024 11:53 pm
Reply to DexieB

Sometimes I don't feel strong. I feel like I am a medical mystery. I was fine, and then I got COVID, and ever since then, things have been on a downward spiral. Hopefully, now though, my body will decide to work.

Jayne
Mar 30, 2024 12:42 am
Reply to aTraveler

A Traveller

 

Happy Easter

 

I have picked up your comment concerning the crinkling noise of the bag. Perhaps you may like to consider changing your pouch system: Salts make black silky bags, which make no noise whatsoever. So try checking out salts.co.uk. Their Comfort B black bags are great, far superior to many of the other brands of ostomy pouch systems. I personally can recommend them (suitable for guys and girls). They come in white and a buff color too, and Salts supply outside of the UK.

 

Best wishes

Jayne

UK

 

 

Jayne
Mar 30, 2024 12:47 am

Lee,

As other members have said, you are strong - and we can all iterate this; but sometimes, it's just good to know there is somewhere where one can 'drop in' for an uplift and feel like a contribution can be made.

 

Hold true - yes, it's hard, but keep with it. Occasionally, the sunshine is truly warm and comforting, and the blue sky brings hope.

 

Hug,

 

Best wishes for Easter,

 

Waves,

 

Jayne

MoeMoe
Mar 30, 2024 12:44 pm

Lee, you are so strong! I'm so sorry you had to go through all of that, but sometimes we don't realize what we've been through and how far we've come until we look back at where we started. Wow, look at you now… going to the park, getting out, being able to do all these wonderful things, especially being pain-free, amazing! So glad all is going well for you and you are getting out into the world! Yes! 🙌🏽

aTraveler
Mar 30, 2024 5:58 pm
Reply to Jayne

Thanks, Jayne. I'll look into salts.

Hisbiscus
Mar 30, 2024 8:14 pm

You are a real trooper. Living with a stoma and no bag. All that pain and I can't imagine. God bless you.

TerryLT
Mar 30, 2024 8:55 pm

Happy anniversary, Lee! I'm glad you found us too, and I have enjoyed getting to know you. As others have said, you are strong! I love that you are comfortable telling your story, and I also enjoy your random posts. Your contributions to this forum have been invaluable, and it's people like you who make this site so great.

Terry

infinitycastle52777
Mar 31, 2024 1:09 pm
Reply to TerryLT

Awe! Thanks for the warm fuzzies. I do love this group. I am so glad I found it. As for random posts, that is what I seem to be good at. Random thoughts, random posts. My mind wanders.

 

infinitycastle52777
Mar 31, 2024 1:11 pm
Reply to Hisbiscus

It was a really trying time for me. I am so grateful that I can wear a bag now. It has made a big difference in my life.

infinitycastle52777
Mar 31, 2024 1:13 pm
Reply to MoeMoe

Yeah, I am really glad I can do more now. I shudder at how things used to be for me. I was in so much pain all the time, every day. I could barely shower because of the pain of the water on my sore skin. I have come a long way since those times. It's very sobering.

infinitycastle52777
Mar 31, 2024 1:14 pm
Reply to Jayne

I agree it is great to have a place to come and share and read what others are going through and just to feel a part of something.

IGGIE
Mar 31, 2024 2:39 pm

Wow, I cannot imagine going a year without a bag. You poor thing, you must have been in a hell of a mess. Thank God you're now in a situation where you can get about and be pain-free. Regards, IGGIE

infinitycastle52777
Apr 01, 2024 9:52 pm
Reply to IGGIE

Yeah, it was a very long year. Very long. I don't ever want to go through that again.

Jayne
Apr 02, 2024 12:17 am
Reply to infinitycastle52777

IC

I can actually empathize to a point, for during the phases where the sinuses were erupting and I too could not have a base plate or bag on - it was a severe challenge - BUT, somehow one got through it - but it was a big trial - especially since in my own case one had for TIEs with the very thought of overcoming the need for continual address of base plates and bags!! Little did one think the reverse would prove to be the result - and it's still ongoing for me - although the abdominal skin finally settled - it was a long haul.

 

BUT INFINITY CASTLE we did it !!!!!!!!!!!!!!!!!!!!!

 

XX

 

And, BTW - a wandering mind can be absolutely essential at times - all focus and no mind journeys would have been an impossibility!!!!!

 

Our minds can be our best companions at times [as well as our worst enemy too on occasions!]

Hugs

 

Jayne