Seeking Advice and Support for Post-Colostomy Emotions

I have had a colostomy since Aug 09 due to a perforated bowel (diverticulitis) and have had a very hard time dealing with it!
I have had all tests for the go-ahead with a colostomy reversal in March this year and am excited and scared at the same time!
I have received some counseling and have tremendous family support but still feel so down all the time...
Have fellow ostomates any suggestions on how to feel better about myself??!!
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Hi Demons

When I lost my colon to Crohn's disease 12 years ago, I had what is called a colo-rectal anastomosis. They basically connected my small bowel to my rectum, and life should have returned to normal. Sadly, the Crohn's was active in my rectum, and I had the runs as well as what felt like passing a football through my arse with no result. A bit like having a baby, I was told. I had an ileostomy done, and life was normal except I had this ugly, unreliable, smelly, and totally offensive thing hanging off my guts. I hated it and wished it would go away, which of course it didn't. In 2020, I moved from my home state of South Australia to meet the person who would become my wife. We met on the internet, and even though I had discussed the bag, I felt she would find it as offensive as I did. Wrong. She didn't even worry about it. I had a reversal done in 2004, which was okay for a few months when the Crohn's raised its ugly head, and I had to have a permanent ileostomy fitted and my rectum removed. This was it; I had to accept it and decided to give it a name (Stomy or Squirter depending on how it behaved) and make it an important part of my day. I have recently given up being an interstate truck driver, and I have just finished a course in security to become a security guard. I have undertaken training in the last few weeks in restraints and takedowns, and while my bag sticks out way in front, it has never been an issue.

As hard as it may seem, accepting the fact you have a bag, whether it's temporary or permanent, is not an easy step. Just take it a day at a time until you have your reversal. Name it, have fun with it, think of punchlines and jokes you can tell about it. I finally accepted my bag after sitting in front of the TV, playing with it, and squishing the poo around in the bag, cracking jokes.

At least you're alive and well, and eventually, you will have it removed. The reversal surgery is major, but I had two of them, and it was no biggie. Just let it heal slowly and take your time.

Sorry for the essay, but I was hoping my story would help you see past the idea of having a front bum as ugly to using it as something to make you stronger.

Good luck with your health and surgeries. I'm sure you will get past your feeling down. The reason I can say that is because you are looking for help to feel better. We will help if you help yourself; good thoughts being sent your way

Steve

Hi there!  I don't think I could have said it any better than Steve.  In Feb of 07 I had a tumor removed from my rectum and a temp ileostomy done.  Because of infection, etc. I had to have the rectum removed and permanent colostomy surgery two months later.  Physically, mentally, emotionally and spiritually it has been very difficult at times.  I have cried.  I have screamed.  I have been angry as all get out! I have been at my lowest low.  I have spent a lot of time wondering why me, what did I do to deserve this, it's not fair.  I think one of the main things that got me to the point where I could finally accept that this is the way it is, is that I truly realized that I could make the choice whether to stay angry and turn bitter over it or to use it for my betterment.  The latter I have finally chosen.  We all go through difficult times in our lives in one way or another.  I am a veteran and have spent time at the VA hospitals.   One day, as I sat waiting to see a nurse, I watched a man (obviously a patient) walk slowly past.  He was burnt badly from head to toe.  His face was disfigured.  The pity I felt for myself changed at that moment and I realized that what I was wearing on my side, was really not the big deal I made it out to be.   A nice gentleman on this site told me once, that he accepted it as his lot in life.  He made a choice to look at it in that way and that stuck with me.  We are the only one that can make our choices.  I will tell you that since I made my choice to accept it and go on, I have peace.  

You've come to a very good place for help.  The people on here are not only knowledgeable and understanding but they have a compassion that comes from experiencing the same.  I wish you the best and if you ever need anyone to talk to, please just send me a message and I will get back to you as soon as possible.  Take care, Debi

Hello,
I haven't had a drink in over 20 years because I live my life by the Serenity Prayer, that and I realize the only thing I have any control over is my attitude. Here is a silly little story that expresses the way I feel.

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head. "Well," she said, "I think I'll braid my hair today!" So she did, and she had a wonderful day. The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "H-m-m," she said. "I think I'll part my hair down the middle today!" So she did, and she had a grand day. The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. "Well," she said. "Today I'm going to wear my hair in a ponytail!" So she did, and she had a fun, fun day. The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YEA!" she exclaimed. "I don't have to fix my hair today!"

Attitude is everything! Speak kindly, live simply, love generously, care deeply, and leave the rest to our Creator.

Hope you feel better today.
Lin

Thank you all for your kind words!!! It's so nice to see that people do care out there!
March seems so far away (date for my reversal surgery sometime in March), and I simply can't wait but hope that it is successful.
Take care to all of you.
Thank you
xxxx
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Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I'm sorry I didn't reply earlier, but started to post several times and deleted it! Mainly because I'm feeling pretty crap at the moment too - I can usually drag myself up and out, but the last few weeks I have been feeling constantly nauseous and I just couldn't quite get there with the words!  Hugs from snowy Uk, Rachel xxx

Excuse me, txgirl. I was reading that you are a veteran. Well, so am I. My operation was done at the San Diego VA. I was amazed to find another veteran. I am 59rabbit.

Hey Demon,
                     I hope this finds you feeling at least a little better.
I too have been having a difficult time dealing with and accepting my ostomy.
I got mine in Oct. 09 when the doctor who was performing a routine hysterectomy on me, cut a large hole in my colon. He let me lie there for 4 days while my fever was over 104 degrees and the pain I was in was indescribable. The doctor finally took me in for exploratory surgery; it took 7 hours to clean me out from the pus and feces that had collected in my gut. My appendix had rotted, as did a portion of my colon from having laid there for so long. I was left with a raging E. coli infection and sepsis...and a colostomy bag. We got me transferred to a good hospital once I got out of ICU.

I tell you this to let you know that I know it seems hopeless at times. Even though you will get a reversal, it is scary to think about another surgery, another hospital stay, more pain, etc. I understand how hard it can be.
People have actually said to me, "Well, at least you can have it reversed, so it's not THAT bad." SERIOUSLY? If it happened to YOU, would it "not be that bad"?
No one understands just exactly how you feel. It is okay to feel the way you do. I really don't have the answers you are looking for, I guess I just wanted to say that you are not alone.
It will get better, time helps. Praying & talking to trusted friends & family has helped me the most. So has making the wonderful friends I have on this site.
These people have been there for me more times than I can count. Lean on them for questions, to vent, or just a laugh.


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Hannah (Txgirl)

Hi Hannah,

Thank you for sharing your story. Will you have a reversal any time soon? I hope you feel better; I know what it is like to feel so overwhelmed with the thought of "what if?" and "but" all the time!
Pending surgery is a scary thought, but I hope it is for a positive reason this time. This bag is a pain in the ass! Or should I say side? Lol
Take care,
'JO xx

I did neglect to say I am waiting for surgery to repair my para-stomal hernias and an incisional hernia. But after 4 ops, having a 5th one is a walk in the park for me.

Hi demons,

I don't want to come across as too "Pollyanna," but I've always been the type of person who sees a glass half full instead of half empty. Here are some thoughts. They may seem pretty simple or even trivial, but I believe that becoming okay with what we are all going through happens in small steps with us taking small positive measures.

When I get down (new perm ileostomy Dec. '09 - very real possibility I wouldn't make it back home), I just take a deep breath and think of positive things. Little things that I love and that I am lucky enough to be here to do/enjoy.

I look at my loved ones, my dog, and think "I am here." Being a nature lover, as soon as I was able to be out in a park or just touch my plants in the yard, or watch the squirrels at the feeders, I felt better.

What makes you happy? Make sure you do those things as much as you can, have stuff you love around you. As soon as my hands stopped shaking, I took up my knitting and felt soothed. Yes, that feeling disappears when I have to empty "my damned bag" for the 7th time or I wake up during the night and have a gas-filled balloon on my tummy, or not pay attention and empty my bag on the bathroom floor, but I try to get right back into a good mindset after I flush
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"

With your situation (lots of 'thinking' time prior to your upcoming surgery) - try not to get into a negative mindset. There is a difference between making yourself aware of what the surgery will entail, possible/probable outcomes — and dwelling on the negative. I find it helpful to make a point to not talk about the negatives. You know how it can get when you are with someone and suddenly you are going over all the horrible things that could happen/have happened... STOP. Talking about negative, especially verbally, reinforces negative. Come talk about it here instead!

You are one of the 'lucky' ones who has a chance to have a reversal done. Think "LUCKY ME... I have the opportunity to get rid of this colostomy that I am not liking." Surgery can be scary, but it sounds like it's going to happen and you are 'choosing' to have it done. Again, lucky you.

Lastly, if you are feeling very down - I mean depressed - and the feeling is with you all the time, not just when you are specifically thinking about your physical issue, you could be suffering from depression and maybe you could benefit from antidepressants for a short while.

Live in the moment, the past is, for the most part, a waste of time to think about (using up valuable 'present' time). Thinking about the future, IMHO, should be limited to planning and such (positive stuff). Working out complicated future scenarios in our heads is such a waste - you know, the "what ifs." The future is going to happen whether we like it or not. We can and should influence some aspects; let's just recognize what is productive thinking and when all we are doing is worrying needlessly.

All this doesn't work all the time (ask me!) but I think it's worth thinking about.

Sending you hugs and wishes for a successful reversal.

p.s. I've received so much comfort, information, and laughs from this Forum. Sure there are lots of sad stuff... but it's balanced by positive and encouraging thoughts and ideas. Sure has made a difference in my day-to-day life.

Yikes! Essay
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! Sorry.

"Every day above ground is a good day"
Beatrice