Let's talk about acceptance

Here I am pretty new to this site and I think to myself, "WOW," here is my oyster. No longer do I have to hide; I can be open about who I am. These people understand me and what I go through. I am really interested in meeting like-minded people, and I find it strange that there isn't a lot of talking on here when there is so much potential and so many members.
We all have one thing in common, so let's talk?!?!?!?

Take care,
Nicole

I agree with you Nicole I too am new to this site and browse quite a lot and have learned quite a lot also. I have only had my ileostomy for just on 4 months and have many ups & downs. I have several friends but don't know anyone personally that are in the same situation as I am with a ileostomy. So it was great to come across this site. I have had many days when I've just wanted to stay in bed and just sleep & sleep.
I think I have finally come to accepting my situation, with the help of my therapist whom I've been seeing fairly regularly. The therapy was originally for a car accident I had nearly 4 years ago when my then second husband blacked out for a few seconds and we hit a tree and my femur went through my pelvis and was shattered. I was lucky to survive and had a wonderful surgeon who was able to put me back together again, though he told me later that they were nearly going to stitch me back up again without doing anything because I was in such a mess. However I get around with an elbow crutch now but at least I can walk, though I suspect that arthritis is beginning to set in. I am in constant pain and live on pain killers.
Less than 12 months later May 08 I was diagnosed with anal cancer which was a huge shock, surgery was not an option because of the location of the tumour, so I had 6 weeks of radiotherapy and had 2 weekly rounds of chemo, which did work as the cancer had gone.
But I found gradually over time that I had was having lots of trouble with using my bowel and had lots & lots of pain trying to go etc etc, eventually it was found that the radiotherapy I had left lots of scarring hence making it more difficult to use my bowel.  On & on it went & it depressed me so much I needed something done, I was already in pain with my hip & that was hard enough to live with.  To cut a very long story a little shorter, I elected to have an ileostomy as after many many tests it was found that I had an extremely slow moving large bowel, and would never empty properly etc etc.
Hence last November I had the ileostomy. My husband and I had separated a long time before that, he did help me through the cancer treatment and things went downhill from there, he was lucky as he had no injuries from the car accident. And I remember him saying at the time after the cancer treatment  that he would never have been able to cope if I had to have a colonoscopy or anything drastic like that if the cancer returned.  We mutually agreed to separate and I now live interstate being near my adult children and my teenager who lives with her father (my first husband).  I have 5 lovely gradndkids all under 3 whom I see regularly. They are what make my life worth living. Everyday life can be very difficult at times and just to do the shopping is a huge day out for me with my extra disability. I do  try not to consider my ileostomy as a disability I tire very easily and have some very bad nights when I have scary thoughts going through my head about wishing my life had ended at "that tree"   And I am on anti depressants which had to be increased several months ago.
Well I think I've vented enough it was only meant to be a short reply so I am so sorry to have waffled on. I too need friends and support from people that can understand what we have to live with.
Nice to have met you. Regards Jenny

My road to acceptance started when I was diagnosed with rectal cancer. It was a long-standing fistula that I had been living with for over 10 years that branched from the rectum and exited perianally.

Living with the fistula suddenly changed once its classification changed. Had it not been for my surgeon's Spidey senses, I'd probably still be living with it.

Surgery was the final component of my cancer treatment, so I had a good 8 months to contemplate my "new" life, to prepare for learning my new normal. On many levels, that time was spent understanding, on one level, that once I learned my "new pooper," my quality of life would be at least as good as it was at the time of diagnosis, if not better. But there was a part of me that was dreading an ostomy since the fistula first came to be.

It is possible that at that time, it might have been temporary, but I wasn't really given a full explanation. Thousands of curses upon that surgeon.

So since my cancer diagnosis painted me into a cancer-colored corner, it was either live or live with cancer. I chose the former because all I know is that I am not done here.

I am a new ostomate too and looking to talk to many others! Maybe make some good friends too!

Hi Jenny.
Nice to meet you.
My heart breaks listening to your story; I really hope that in time you heal and you are in no more physical and emotional pain.
I have had my ileostomy for a long time, and I can't imagine my life any different.
This is a wonderful supportive tool and an ear to listen.
Take care of yourself, and please talk it out with me anytime.
xoxoxo Nic

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi everyone,
I really am touched hearing your stories and how you have overcome adversities.
We have such a great tool here: strength in numbers.
I would love to make some new friends and know that we are not alone.
So, let's share and help each other.
Take care of you and yours.

xxx Nicole

Thank you for reading my story, Nicole. I reread what I wrote and noticed a few silly errors that I made. I wrote "colonoscopy" instead of "colostomy," as I had not even heard of an ileostomy before. But what I was trying to say was that my then-husband said at the time that it is he who would be unable to cope, never mind me and whether or not it was going to be a necessary option in order for me to live. Anyhow, I've come a long way since then and have also learned to live without him. Without having support, life is tough. So getting this all out does help.
My therapist has been terrific. Next Tuesday, I go for a cancer check, as I need to go every 3 to 4 months. My doctor may want to do a colonoscopy anyway, which I won't mind if he does, and not just a 'manual' check-up, which is getting more and more difficult for him to do anyway.
I can't help but feel nervous before these check-ups. I recently spent a week in the hospital because I had severe stomach pain and thought I had a blockage, so several tests and blood tests showed all was not too bad, but my stoma looked a little swollen and bruised. I was dehydrated and was put on a drip to rehydrate me. There were some inconsistencies with my blood tests, though, and my blood pressure dropped again, so my meds were stopped again. I used to have high blood pressure, but since having the ileostomy, it is now low, though a few weeks ago it went up again. So at the moment, I'm not sure whether it is high or low! It goes up and down all over the place. I do monitor it with my little BP machine. I made the most of the rest in the hospital anyway, and the strong pain relief also helped my hip pain. The pain gradually subsided, and I was sufficiently rehydrated and able to eat again before being discharged.
I am still learning what I can and can't eat, etc., and I know that I must drink plenty and always take Powerade or water with me whenever I go out.
Anyhow, that's enough for now. Thanks for listening!

Niccus,

Why in the world would anyone "hide" just because they are an ostomate?

Take a piece of paper. Draw a line down the center from top to bottom. On the left, list all of your good qualities. On the right side, list the things you don't like about yourself.

Take a good look at it; it's going to be the last time you ever see it.

Now get out the scissors and cut the paper along the line.

Promptly take the right side of the paper, crumple it up, and burn it.

What you have left is the list on the left; it is you!

Don't ever think of yourself as second class; you're not.

Rick.....

Nicole
Welcome to the site.

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You have found a group of fantastic folks with a great deal of experience. We're all going down this road together. No stupid questions but a lot of encouragement and information. We all have similar problems as we adapt to this life-changing event. Best wishes.

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Bob

This is truly a beautiful site to help deal with issues that pop up. Family and friends who haven't gone through this may sympathize, and that's great, but people who live it make all the difference in the world. I'm glad I found this site again after not checking it out for years. Good luck, everyone, and remember we are all very special.

Janice

I had my surgery brought on by diverticulitis. Almost a foot of my colon was removed. At the very beginning, I was scared almost out of my wits at the thought of a colostomy. Next thing I knew, I had to have the surgery on January 14, 2011. I am scheduled for reversal surgery on April 13. Now I can't believe how far I have come in 2 months. It really doesn't bother me as much. Since I have a choice, I am going for the reversal, but if I was told I couldn't, then I know I would live with it okay. In fact, I even considered not doing the reversal because I am so much more at ease with it, and there are risks to any surgery to consider. There are a lot of factors in our lives that cause us to accept things in our lives one way or another, but I choose to accept it and not believe that it is a disability or anything negative. It doesn't define who I am, and a lot of people don't even know I have a bag. If anyone thinks differently about me because of it, then they are the ones with the problem. It saved my life, and who wouldn't have done the same thing had they been in my situation?
To me, I am very fortunate to be well again and doing so well. I did lose 30 lbs during all the sickness, but I'm fine now.

Best wishes to all of you. It has been enjoyable to read all of your experiences. None of us are alone with this.

jo ann

cassieandme
I see you're also a Texas tough girl! I see you're around my age, and I wanted to share this with you. I woke up from emergency surgery with a bag. I discussed the possibility of reversal surgery with my doctor. I've been an ostomate now for going on 7 years. At the time, I was 60 years old. He recommended that I not do it based on my age. The doctor said, "If you were younger, I'd say let's do it." But I needed to understand that reversal wasn't a cakewalk. Now, that being said, there are a lot of very successful reversal testimonies here on this site. It's an individual personal decision, and I understand that. My feeling is it's all about risk/benefit. I feel at my age it's more risk than benefit. Yes, the bag is a little inconvenient, but it saved my life. I lost my wife of 35 years due to cancer 6 months prior to my problems. But I'm enjoying my kids and grandkids more than ever. This bag has given me a new view of life and why we're here on this earth. It also saved my life. You said
"In fact, I even considered not doing the reversal because I am so much more at ease with it, and there are risks to any surgery to consider. There are a lot of factors in our lives that cause us to accept things in our lives one way or another, but I choose to accept it and not believe that it is a disability or anything negative. It doesn't define who I am, and a lot of people don't even know I have a bag"
"You have a great attitude about it. I wish you the best in whatever your decision may be. Hope I didn't confuse you.
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By the way-----
My daughter and granddaughter visited your city in July last year. We did River Walk, Alamo, riverboat ride, and ate some great Mexican food. All the best
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Bob

bes0642

Thank you for your input. It certainly is something to consider about the reversal. My surgeon seems comfortable with me having the reversal. But knowing there is risk
I still thought about whether to have it, where in the beginning I wasn't considering anything but the reversal if it was possible for me to have it. Once you get in this boat
there are pros and cons to either way you go.

I see you are from Gilmer. We lived in Longview, and my husband was a police officer there
for almost 10 years. Glad you enjoyed being in San Antonio. It is a beautiful city and there is something going on here most of the time.



jo ann

Yep, Jo Ann, there are a lot of pros and cons. My 41-year-old daughter completed the police academy 1 1/2 years ago. She worked for a police department for 6 months and decided to get out. She realized how dangerous it was, much to my satisfaction. She has a 13-year-old daughter, and it really pleased me for her to give it up. She's now back in college retraining. Best wishes with your decision. Keep us posted.
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Bob

Hi, I am back! I have not placed many posts on this website, but I did place a post approximately a year ago about my husband's attitude towards my ileostomy. I was very interested to read that Jenwend and her husband separated. I would like to inform you all that I finally gave up and separated from my husband two months ago. Now I don't have to answer to anyone!!!

Janee, welcome back! Life's too short to always have drama day in and day out. I'll never understand people's thinking after one in a couple has become an ostomate and the other turns their back! Are things getting back to near normal following the recent earthquake there? Best wishes!
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Bob

My reply posted twice for some reason
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. I didn't see a way to totally delete this one, so I just deleted the text from it.

Hi there, I had to have an irreversible ileostomy for very unusual reasons. As far as I can see from the support groups and the many online venues for ostomates I've been on, that makes me feel like an outsider even among other ostomates
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  in that it makes me feel more isolated and alone, even though I know we all share trials and tribulations as ileostomates.

If anyone would like to talk about this, please PM me. I can't message (not a paid member), but I can answer.

I've also seen and felt an element of pressure to be an "ostomist" (optimistic, upbeat ostomate)
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on discussion boards (more so on some than others), and that also makes me feel inhibited about expressing my real emotions and feelings.
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is how I feel about that.

Thanks for starting this thread.

re: Let's Talk About Acceptance...
Never underestimate the power of denial.

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Hello Nicole, welcome to the best site for ostomy mates. It has helped me a lot. I have a couple of friends that we message daily, and I also have a very good pen pal from here. There are a lot of good people on the chat if you are a full membership. If you are, try and pop on some nights, and it really takes your mind off things. Well, nice talking to you. Hope to talk again. Your new friend, Sharon.

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Hello Victoria, glad to have you on board. This is a very good site, and there are a lot of people that can help you. I have been on since October, and I have met a lot of nice people. I just asked Nicole, do you have full membership? If so, pop on the chat line, and you will love it. I know what you are going through; I'm a widow. I was with a guy for 12 years, but not since my colostomy. I don't think he can take it, so it's time to move on. Someday I hope I will meet someone who can accept me and not worry about my colostomy. I've had it since February 10. I did have a ileostomy first, reversed it back in '08, but it didn't work out. I have hernia problems altogether, had 7 meshes; they all got diseased, so I ended up with 11 inches of my colon that had to go and to sew up back in, but I'm doing good now. I'm 63 and have a new grandson, 4 months, and an 11-year-old one, and that makes life easy for me. So welcome! If you want to talk, you and Nicole, I'm just a message away. And keep your head held high; it is your sorry husband lost, not yours. SHARON

Hi, my consultant told me the success rate for reversal was 97%, so I did not think twice until after the reversal when I was in intensive care and found out I was in that 3% and had what they call in the English supermarkets a bag for life.

It's personal choice, reversal or not, but it's a decision you have to make yourself for yourself.

Hi all

I'm new to this site. It's 4 weeks ago tonight that I had my op; it was an emergency operation to remove my large bowel due to ulcerative colitis, which was only diagnosed 3 weeks before the operation. The pain I went through before the operation was something I thought I would never feel or something I never want to feel again. I think I was lucky because I knew nothing about ulcerative colitis, not to mention a stoma, ileostomy, etc. So on the night of the operation, when the doctor told me my bowel had to come out, I started crying, but in ten minutes, I was smiling, knowing that this was an end to all the pain. The next morning, when I woke up and saw the bag hanging off me, the feelings that ran through me were feelings I had never felt before: depression, happiness, crying, anger. Sometimes I would feel all of them in one minute. Anyway, 4 weeks on, and I can honestly say I don't think I will ever accept the bag, but I do feel I will be able to tolerate it. Tolerate it enough that I actually feel happy. I work as an electrician, and today I wired a shower for a friend, something I thought I wouldn't be able to do for months. To sum up, I don't think I will be able to accept the stoma, but as I said, I will be able to tolerate it.

Hi Austen, welcome to the site. I enjoyed reading what you wrote above... you have an interesting way of looking at things — your daughter will definitely enjoy having you as her dad. Here's 28 seconds of welcome music for you:

Thanks very much, Three. I like your pic on the bike and the video. I've uploaded three new pics of me crashing last year. The green bike is a ZXR400, and the red and black bike is an R6. I got up and walked away from both, thank God. Can't wait to get back at it.

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  Hey jenwend, I'm in Melbourne, Australia. Nice to see a few of us Melbourne, sorry, Aussie girls in here. Are you living around Melb? I volunteer at our association in the city. Wonder if I have spoken to you, mooza. Anyway, I've been on here for a long time. Hope you girls from OZ drop into the chat room from time to time. xx Cheers, Mare - mooza. It's not all doom, but a great bunch in here, lol, me included, no matter what you hear. xx
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I thought my husband would be supportive. However, one day he looked at me, all 98 lbs of me at the time, and said, "I don't see you like a woman anymore." Two weeks later he told me that he was leaving me. Come to find out he had a much younger girlfriend. After 25 years of marriage and a beautiful daughter, we are divorced. Now, I'm free to be me, and I'm finding new purpose for my life. It took me about 1 1/2 years to really accept my ileostomy and some chronic illnesses that I have. I'm beginning to enjoy my life again with the grace of a very loving God and wonderful friends; there is an abundant life beyond ostomy surgery. By the way, I had a month-long stay in the hospital last year because the small bowel decided to herniate—ouch! Life goes on......
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hey godwoman that disgusts me that you were left cause u were sic omg i cant even spell wat i wanna say .....wat a blank to do that 2 u .......i cant even speak and i can talk underwater  grrrrrrrrrrrrrrr   wat a peice of crap of a person 2 leave like that shite man like
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we wanna get sic ...and end up like this ftw .. i cant speak .
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  mare -mooza xx u wanna chat talk to me weneva arggggggggggggggg
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Austen, you're a legend! I rode my ex-friend's kid's peewee Yamaha 50. Lol, fun! Lolol. Wanted to rip that thing, but I lost control. Only 3 gears. Hahahahahahah 

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Well done, Mooza! Nothing like riding a motorbike. It doesn't matter how many gears it has; there's only one gear you need for fun, and that's top gear. Haha, we will have to have a race someday.