Recurring Hernias and Ongoing Surgical Challenges

Hi everyone, sorry I haven't told you how my hernia surgery went. Unfortunately, it didn't go as planned. I went into the hospital and they tried to repair it, which to a degree they did, but where they had resited the stoma hadn't been done properly and I was discharged with basically a dead stoma. I was home for about a week and during this time was not well, and my stoma nurse told me to come straight to the hospital. When the doctor saw me, he immediately performed surgery on me. The next thing I know, six days later, I woke up in intensive care. I had 5 operations during that time. I was then moved to a ward and had a further two operations. I now have a big open wound on my stomach which looks like your bottom on your stomach; you can actually put your hand in it. This happens every day, as I have a nurse come in as the stomach has not healed. They had to place my new stoma above the waist, and it is a drainable bag. As I will never pass firm movements. So the stoma is very noticeable through my clothes. To have the opening on my stomach closed would require major plastic surgery, and I just can't face any more surgery. Sorry for sounding sorry for myself; it's just been a very stressful time. Thank you to everyone who replied to my previous message. It would be great to hear from anyone who knows how it feels. Thanks, everyone. Take care, rythamoflove (Jeff)

God bless you, that's a horrendous story! Praying you get well soon and it all gets sorted. No one should have to go through so much pain. xx

Thanks so much for your message; it was very kind of you and comforting. rythamoflove Jeff xx

Hello rythamoflove.This terrible thing may not have happened to us first-hand, but I'm sure we can all empathise with your situation and, for the best of reasons, I hope that nobody else has experienced this or ever will. Best wishes Bill

Hello! I have felt like you have felt, I am sure. I had 2 flesh-eating diseases and gangrene on my buttocks up to my genitals with a little involvement there. I was in a coma for 9-10 days, had 9 surgeries, and almost died. I have amnesia of weeks, possibly months, and illusions like dreams that I believed were real. What a nightmare, and I say night and daymare! Ok, to make a long story even longer :) I was diabetic and needed insulin, but could not afford it. My sugar shock with blood sugar in the 500 to 700 range is what took over, enabling my infection. I do understand the feelings and thoughts of being powerless, life will never be the same, I got the raw end of the deal, why am I alive, what is the purpose of my life, nobody really cares, I should just end it all, why me, and on goes the list! I do feel sad for myself, I cry, I get really angry and it will come out when I least expect it, I cuss, I pout, I get mean, irritable, I scream a little, I feel empathy and sympathy for me! Know what? I can only change what I can, and I have that wisdom here at 57 years old. I got the raw deal, bottom line! So I forgive myself for blaming me and treating me like I am not allowed to act the way I do. It is okay for me to do all those things, as long as I am not causing anyone else or myself any distress. Soooooo, please go easy on yourself, know that you are never alone with all those emotions, etc. There are many who relate to you and understand how horrible life can be. Please keep sharing. Pain shared is pain lessened. My thoughts and prayers are with you. Oh! I forgot... anyhow, I had a colostomy to save my life! Without it, the infection would have spread more. They thought I would at least have no legs, but I got through all of it because I am here for some higher purpose... my docs tell me that too. I am grateful to be alive. I also wanted to say that I have developed a hernia under my stoma... mine is on my left... it has gotten to be the size of a large cantaloupe! It sticks out far and I hit it on stuff! It was to be a temporary colostomy, but it has been 1 and 1/2 years now. I must stop smoking and lose weight if I can, before any hernia/reversal can be done. OK! Thanks again! LOL Your new bud, Kat HUGS!! Thanks for letting me share! Take care and know that you can share with me.
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Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Love Lady, thanks for your message. It sounds like you have had a really hard time, pretty much what you went through I did. But as you said, what we went through saved our lives, and I think I'm getting to the stage where I realize how precious life is. I also had those sorts of dreams and, to a degree, still do. I saw someone who specializes in helping people who have been in intensive care, and what we are experiencing is very common, and in time it does get better. But you must not feel guilty for having those bad days where you feel how unfair life can be. But remember, you're a special person who is still here to tell your story and by doing that, you are helping others, like me, realize we are not alone and can all support each other by sharing our stories and how we find ways to cope. You take good care of yourself. rythamoflove (Jeff)

Hi Bill thanks for your message, it was very kind of you. It does help to know that people care and can share their experiences. Many thanks rythamoflove (Jeff)

This is what this site is good for: people just need to vent out how they feel for the moment and just to have someone lend them the ear they need and give them a hug. No matter what age you are, you always need a hug or a smile put back in your life to make you smile and know that there are others out there who will take the time to listen to you and try to cheer you up.

Hi Weewee, thanks for your message. You're quite right; just having someone to listen can do wonders. Unfortunately, at this time in my mind, I can't see how anyone would want to be with me. The stoma is very unpredictable; it can fill up at any time, and of course, there's the odor problem. So, I don't go out much, as I said, my stoma is noticeable under clothing. And because of all the surgeries, my stomach is disfigured. Here I go again, feeling sorry for myself. It's just been one of those days. But you're right, my family and friends have been very supportive, but it is nice to know people on this site can understand and be so kind. It really helps getting these messages of support. Many thanks, rythamoflove (Jeff)

Hello Jeff, my stoma also sticks out about four inches. I can push mine back in, and then I wear my wrap until the gas fills the pouch, and then I just release the gas and it goes back to a snug fit. You can find these wraps at any medical store. I have to get the largest one they have so I have room to move the wrap open, so when I fill up with gas there is room for relief. Plus, if I have a blowout, the wrap stops it from going everywhere as long as it's not a full load of crap. I have also cut one of my wraps so that I can empty the pouch without having to take it off. I am trying to build my own support because they don't make them for the 4-inch wafer and pouch that I have found yet. This helps so that it doesn't stick out of my clothes, or you would see one side of my shirt way out there. Yes, my belly looks like a backhoe made some ditches for irrigating the farm. I was like you in the same thought. I am not a full member anymore, so if you would like to chat, you can email me at dglsbrntt@yahoo.com.

Wow, that's awful... I still have pain from hernia repair; it's been so long now, I think I just have too much scar tissue... Hope everyone's well...

Yes, scar tissue! Mine is there, under parts of my skin; I feel it all the time... Hey Jeff! I just wanted to know how you are doing today, this moment? I am about the same. Good days, bad days, okay days, terrible days! Just trying to do something great for me on the worst of days helps so much, as does stretching, exercising, and yelling out slowly with all my exhale breath! Hope all is well today with you. Hugs and smiles ;P LoveLady or Kat

Hi Kat, thanks for the message. I'm not doing too badly. Like you said, good days and bad days. I'm still having the nurse come every day to change the dressing. When I saw the surgeon last month, he said the only way they could make my stomach look better, once the wound had healed, would be major plastic surgery. I just couldn't do that. The way I look at it, if I can live with it, and others can't, that's their problem, not mine. It's the person inside that matters, not the outside appearance. I'm glad you're getting on okay and hope you keep getting better. Just keep being positive and think, if we hadn't had the surgery, we may not be here to share our experiences and hopefully help others know they are not alone and it is possible to have a good quality of life living with a stoma. You take care of yourself, Jeff (rythamoflove)
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