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Lesson learned from this site


Wed Jul 11, 2018 5:00 am
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

When I first signed up on this site a few months ago, I was totally devastated by what had happened to me...which I think is fairly normal.  What I didn't know was that I am actually lucky.  After reading some of the posts and talking to people, I realize that so many of you on this site are dealing with so much more than I am on a daily basis.  And you do it so WELL.  So much BETTER than I was dealing with things.  The courage, determination and spirit I have seen on this site has absolutely amazed me.  To say it's been inspirational is an understatement.  It has made me realize that I have been on a self-pity jag that there is no excuse for.  I have had my eyes opened and been taught a lesson that I really needed to learn.  It has helped put things in perspective for me and will certainly help me accept things and move on with my life.   I've gotten so much more from this site than I ever expected and I have all of you to thank for that.  The helpfulness, kindness and understanding I have experienced here is beyond anything I imagined.  Thank you all!  Linda

Wed Jul 11, 2018 6:21 am

weirdnnewlife... A very heartwarming blog. You have touched me also. Ty.  Take care!

            Angelicamarie

MeetAnOstoMate - 26,936 members

Wed Jul 11, 2018 6:48 am

Thank you Angel.  I meant every word of it and YOU have been a big part of it.

Wed Jul 11, 2018 12:06 pm

I agree Linda,

The folks here are like no other. Very understanding and patient. Many of us are blessed to find such a wonder group of people who will help each other through whatever issues we have.

If MAO wan't available I would be very sad!

Wed Jul 11, 2018 12:52 pm

Hi weirdnewife, welcome. You have become a part of a very special group. Yes, we help and support each other. It is remarkable 

The things you learn here, including as my Mum used to say there is always some poor bugger worse of than you,(I grew up in Scotland) lol. Take care and again welcome.


Thu Jul 12, 2018 9:04 am

Thank you for the welcome, Rosiesmom.  Your "Mum" was right on!  There always seems to be someone worse off.  It took this site, though, for me to see it.  I'm glad I did.


Thu Jul 12, 2018 9:05 am

So true, Mrs. A.  They're a great group and I'm glad I found them.

Thu Jul 12, 2018 3:29 pm

Hi Wierd!

Youre absolutely right!

Hi Mrs A! How ya been? I looked for you but couldn’t find you in search. I’m doing good. Waiting for another hernia surgery any time. Waiting to see if I’ll ever be right again. 

Charlotte

Thu Jul 12, 2018 3:31 pm

Hi Wierd!

Youre absolutely right!

Hi Mrs A! How ya been? I looked for you but couldn’t find you in search. I’m doing good. Waiting for another hernia surgery any time. Waiting to see if I’ll ever be right again. 

Charlotte


Thu Jul 12, 2018 7:19 pm

Hi Charlotte,

Wish you luck on your surgery.  You'll be okay.  Ya gotta believe that!

Linda

aka "Weird"  lol

Sun Jul 15, 2018 2:43 pm

Hi Char,

Great to see a post from you. All is well and let us know when you have that surgery. Your already better that right, this will just help you see that~

Tue Jul 17, 2018 11:21 am

Dear Linda,

i simply wanted to echo similiar thoughts. I went in for the removall of a cancer tumour and I woke up 12 hours later to be told  my bladder had to be removed  and that I had an Illuit Conduit; I sobbed like a baby! That was on the 21st March of this year.  I was in hospital for 5 weeks because my wonderful stoma nurses struggled to find a bag/ pouch that would fit. My stoma was situated in the crevice of my stomach.

Reading the experiences on the website has made me humble.

Given the fact that i am still reasonably independant I count my blessings.

You are all so brave

Collette


Tue Jul 17, 2018 12:14 pm
Hi Linda,
Thank you for your post.
Thank you for YOUR encouragement.
You Linda, are also an inspiration.
Your friend from...
~~steven
Tue Jul 17, 2018 12:22 pm

I am two weeks away from the reversal surgery and have been a bit surprised at how ambivalent I've felt since it was scheduled. Not to say there aren't incidents with my bag that have me asking, "Is it July 30th yet??" Obviously, it's not a love/hate relationship but it IS an okay/dislike relationship. When they told me I was going to have to have one for a few months (this was in November so it ended up being several), it seemed like such a major deal and I was so scared and angry and repulsed. I was also downright rude in the hospital to the ostomy nurse who insisted on showing me how to change the bag a few times. After the first two times, I demanded that she not be allowed to come in my room again because she was so unsympathetic. Of course, now I realize she handled it just the way she should have, and I sent her an email a couple of months ago letting her know how well I ended up doing and that despite my trying to ignore her, I did pick up most of what she had tried to teach me. Though, in my defense, at the time I was at the stage where I'd been in the hospital for over two weeks and also facing a short stay in a nursing home so I was a pain in the ass to nearly everyone, my mother included! 

Am I glad I got really sick from diverticulitus and ended up in the hospital needing major surgery? No...but yet I'm not sorry I had to go through this experience. As I've hiked and gone to concerts, I've gained so much more confidence about how this doesn't have to prevent me from doing anything. I honestly could handle it if it became permanent. It's basically just a big annoyance. I feel like I've learned so much about myself that I wouldn't have otherwise, such as how resilient I am by how quickly I adapted to this, to the point where I even crack jokes about it. Having a dark sense of humor is definitely a good thing in this situation. I also am incredibly squeamish and being able to overcome it in this situation makes me realize how capable I am. Not that I had a choice. I live alone and just had to accept it and get on with it.

I always thought of a colostomy bag as being something really revolting and this experience has made me confront that fact that I wouldn't have felt comfortable in a dating situation with a guy who had one and doubt I would ever have been able to get past that. It's not something I'm proud of but that has changed and it wouldn't faze me now.

All in all, sickness and pain leading up to it aside, I really am, dare I say, grateful to have gone through this?

Tue Jul 17, 2018 7:02 pm

I bet there is not one person on this site that hasn't been through the pity party!  I know I did, twice!  But because of this site and all the people here, I pulled through and now I can offer my opinion to others who have to go through it.  I am glad that you are doing better!  Pamela.


Wed Jul 18, 2018 6:33 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?  

Wed Jul 18, 2018 9:19 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.

Wed Jul 18, 2018 11:40 am
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. 

Wed Jul 18, 2018 11:22 pm

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 times......is always a blessing....    Best wishes...Marsha   


Thu Jul 19, 2018 6:55 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

Tue Sep 11, 2018 11:58 pm
Hi All, I just read Seasaw's post ( Welcome...read,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, OK...my 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...
Wed Jun 05, 2019 9:26 am

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


Wed Jun 05, 2019 2:32 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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