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Lesson learned from this site

Past Member
Posted by Past Member, on Wed Jul 18, 2018 7:33 am

Dear Scout,

I know what you mean about all those emotions you were feeling when you went through all that stuff in the hospital.  It can bring out the worst in us and turn us into some very cranky patients, to say the least. lol    But then, it can bring out the best in us too. We all find out just how strong we can be and how much we can deal with when we have to.  It can be very surprising, can't it?  


Reply by brane46, on Wed Jul 18, 2018 10:19 am

I have enjoyejd reading all your posts--you guys are truly my heroes. I have had an ostomy for 12 years now and it is now second nature to me. I had a hard time accepting it in 2006 and have had some problems with leakage, but mostly I don't have to think of it much. It really hasn't changed my life a lot and no one would ever know unless I told them. 

If anyone ever wants to chat about their issues, I would be more than happy to talk to you. I am so thankful and so blessed to be alive and after getting the cancer news four times, the colostomy is almost not worth mentioning. (No I did not feel like that at first but I have come to that after a while). I thank God for helping me manuever over the rough times.

Reply by Scout Finch, on Wed Jul 18, 2018 12:40 pm
weirdnewlife wrote:

Dear Scout,

I know what you mean about all those emotions you were feeling when you went through all that stuff in the hospital.  It can bring out the worst in us and turn us into some very cranky patients, to say the least. lol    But then, it can bring out the best in us too. We all find out just how strong we can be and how much we can deal with when we have to.  It can be very surprising, can't it?  


I even apologized to my mother at Christmastime. I had been so angry about feeling like I was strong-armed into going into a nursing home. My mom has Parkinson's and lives five hours away so she couldn't stay with me indefinitely. The stress really took a toll on her physically and the hospital social worker had the gall to guilt me into going to the nursing home by asking me if I wanted my mom to die from the increased stress of worrying about me if I didn't. Unbeknowst to me at the time, though, the nurses were the ones who had first approached my mother my second week there because they were very concerned about how poorly I seemed to be dealing with everything and that I didn't have anyone at home who could take care of me. I still felt so betrayed and also because I had no control over what was happening to my body and all these decisions had been made without consulting me (I'm 54), that I even lashed out on the phone my first day at the home and told my mother that "I don't think I want to talk to you at all while I'm here." So when I finally was apologizing she said that after having been a nurse for about 20 years (obviously, she's retired) she was totally familiar with how I was acting out at that stage, and even though I had been deliberately hurtful she said she had never taken it personally.

Looking back, I just realized that what was so difficult pyschologically for the first month or so after surgery was still feeling that I didn't have any control over my body.


Note: I was out of there in three days after proving right away that the stairs in my townhouse weren't going to be a problem and then that left just demonstrating that I knew how to change and maintain the bag. Which is when I frantically tried to remember what the ostomy nurse in the hospital, who I had tried to ignore (because since I had to go to a nursing home they could "damn well continue doing it for me there!" the whole time and I'd just learn near the end of my stay), had demonstrated those three times. I was suddenly very highly motivated to prove it and frantically managed to recall what the ostomy nurse had showed me. Despite my attempts to ignore her, I apparently had learned enough to pass the second "test" with just a couple of tweaks from a nurse at the home and went home to my two kitties on Thanksgiving. 

Reply by Immarsh, on Thu Jul 19, 2018 12:22 am

Hi Linda, 

 It takes awhile to adjust to changes in ones life....despite what that change might be.   Eventually,  when we are ready to face the world, and what has happened to us....we're ready to  stop the "pity party" and get on with life.  I have my ileostomy for over 50 years, since I was a teen of 15.  I embraced t he ostomy, and adjusted to the changes more easily than most, since it allowed me to go back to school, and continue living " real life".   My  hidden pity party, was  that I continued to mourned those  lost school and  social years that I  missed , between ages 12 -16,  .   But after getting back to school, graduating, working, getting married, having children, and then finishing college....I think I felt like I really " caught up".    I was very involved with both adult and teen NYC  Ostomy groups.....until I moved to NJ after having kids..    Although some of us kept in touch for a few years, we moved and got on with our own lives....    And then one day,  I found this group.   While I didn't think I needed help, I joined the grouup, paid the fees, and then came to realize that " need" is relative.    It felt wonderful, to connect to people who had shared what I'd been through.   And even if I didn't need help, other's out there did....   We are really a community, and the more we connect with  others, the better for all of us....   You travelled the path you needed to follow, to get to where you are now....and I along with other ostomates wish you the best...    Sharing the good times, as well as the not so good always a blessing....    Best wishes...Marsha   

Past Member
Reply by Past Member, on Thu Jul 19, 2018 7:55 am

Dear Scout,  I think you nailed it when you said not being in control over your body was probably the crux of things.  It does feel like you have no control over anything and that can be very hard to deal with.  That was one of the hardest things to deal with for me too.  I think it is for everybody, but we adjust eventually, and life goes on.  It's all worth it.  As my friend Andy would say "I'd rather be looking at daisies than pushing them up."  I think he speaks for us all on that one. Linda

Reply by Immarsh, on Wed Sep 12, 2018 12:58 am
Hi All, I just read Seasaw's post (,learn, absorb, and join in when you're ready) and re read my own, and Linda's post. It's illusion to believe that we really have " control" over our bodies....prior to or after ostomy, or any other surgery. Do I sound a bit callous and cynical . I guess I am. Over the last 6 months, I've had 4 different " cancer scares" in different body parts....but 3 were GYN. First was a swollen gland on my neck, that got bigger and bigger, and didnt respond to antibiotics, I went to see a ENT specialist, and had a scan done, to rule out a tumor. His parting advice on that first visit, was " go to the hospital, if I have trouble breathing or swallowing". I live alone, and was afraid I'd die in my sleep. OK...a bit of anxiety there. But it was scary. Until it was diagnosed as a resistant infection.. Relief. Next scare, was an unexplained spot in a mammogram. Had a scan for that too, and then a biopsy. It was negative, but a marker was placed and that body part needs to be " watched". Next scare...a bad pap smear, and again, a more intrusive procedure and a biopsy... The anxiety got to me again, and I thought, time is going to be up. Biopsy was negative, but " cervix needs to be " watched". About a week later, I started to bleed vaginally, and by then I was sure that there was something wrong. I hadn't had a period in 15 years. Back to the dr... diagnosis, thick lining, and some " polyps" she thought.. Cancer? I thought. First, another biopsy. Then I was told that I'd might need a d & C ( if the bleeding didn't stop) or a hysterectomy, if it were worse. But hearing that I'm not a candididate for that type of surgery ( can't get the uterus out...too complicated) I was ready to give up on life in general. In fact, I was ready to plan my funeral. That's what stress can do to a person. I had to wait a week for the results, only to find out that all was " well", and another organ needed to be " watched". After realizing what I had needlessly put myself through, made me question and work harder at changing my coping skills. Simple phrases, mean more to me, Live each day as if it were your last, make the good times matter, don't sweat the small stuff, recognize what IS the small stuff, Be grateful, Smell those flowers each day and realize that time is a gift, and we're not going to live forever. Morbid? not really.. Realistic.. Definitely. I thought I was dying....back 55 years ago, before my ileostomy, and at times, I probably was. Now that I'm 70, I plan to enjoy whatever good time i have left...
Reply by looking forward, on Wed Jun 05, 2019 10:26 am

hi again linda. how very brave you are. i still have not adapted to this new way of life..good for you

Past Member
Reply by Past Member, on Wed Jun 05, 2019 3:32 pm

Hiagain to you too.  No..I'm not brave.  I'm just like everybody else on this site.  We deal with what we have to deal with because we can't do anything else.  We have no choice in the matter.  As far as adapting to things, well, it takes a whole LOT of adapting!  You'll adapt too... because you have to.  Thank you for calling me brave.  That's very kind of you,  but it's not the case.  I'm no braver than anybody else on this site and that most certainly includes YOU!

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