Why me? Coping with life after an ostomy.

Has anyone ever wondered why this had to happen to them? I've only had my ostomy since February, and I often think of what I could have done to avoid it. My life has been changed forever, and I am learning to cope with it. I don't like it, but it's better than the alternative. Just venting.

Hey Walk, I'm betting we all wondered at one time or another. Please continue to vent; that's what we're here for. We share our highs and lows and help each other in amazing fashion sometimes. Use the forum.
Welcome,
Mike

Thanks Mike, every day does get a little better. Right now, I'm still dealing with the healing of my bottom parts from the surgery. I was told it could last up to 5-6 months. I'm tired of buying women's feminine products if you know what I mean. LMAO!!

Hey WalkWell, I think all of us at one time or another have wondered the same: why me? I think you framed it right. It's better than the alternative. I'm 73 and had emergency surgery in 2005, so I've had my ileostomy for 10 years now. Sure, it's altered my lifestyle a bit, but once you get into the routine of how to handle the ostomy, you'll find out it's a blessing to still be here. I found the biggest issue for me was determining how to and how often to change the appliance, maintaining good skin care, and learning what clothes to wear that helped hide the fact that I had an ileostomy. Looking back, the surgery was the best thing that happened to improve my life. Best wishes to you. You definitely have found a great website that can provide you answers to questions from some good folks on here. I'm sure you may have many questions learning how to deal with your ostomy. Remain positive and have a great life. Bob

Thanks, Bob. So, do you think I should do the full membership? Tony

Living with Your Ostomy | Hollister

Depends on your needs. I, for one, do not have full membership. Don't have the time, just drop in occasionally and have picked up a lot of help from folks on here. Best wishes, keep your head up and be positive. I promise, sometimes it's frustrating, but it will get better with minor lifestyle changes. Bob

Thanks BobTony

Hi Walk, I'm Marsha, proud owner of my ileostomy for more than 50+ years... I was 15 when they finally operated. Before that, I cried, "Why me? Why now?" from ages 12-15. I was sick with ulcerative colitis, in and out of hospitals, staying in for months at a time. I missed 4 years of school, and when I found out that I could have surgery and get back a normal life, I cried. It wasn't until years later that I became really angry that my parents waited for so long before agreeing to the surgery, which I knew nothing about. I did come to forgive them, knowing that they made what they thought were the best choices for me... When I was 19, I begged the doctors to remove the rectum, making the ostomy permanent. No one was happy about that, except me, and I've never regretted it. My ostomy is my badge of survival. I'm more upset about all the stretch marks and complications that were caused by all the medications I'd taken, but that too is an old story. I've managed to live a full and active life. I married, had two children, went back to school to get my teaching degree, divorced, went back to dating life. I decided to take bits and pieces of retirement while I was still young enough and healthy enough to enjoy it. That was 20 years ago. Time, age, ailments, and finances demand that I slow down some, but I still get to Australia every year to visit my son and his family who live there. It's healthy to mourn your loss and the events that caused them, but then it's time to look at the positive and continue to live the best possible life for you and your family. Ironically, both my sons have inflammatory bowel disease, but as of now, have not needed surgical intervention. They've been maintaining their health with medications, and my younger son is now vegan and is off all medication for the first time in 20 years. You are the one who will choose how to live the good life with the ostomy or in spite of it. Either way, best of luck to you. Marsha

Hi Walk, welcome to the site. Yes, I also questioned why me and why now. Each day does get a little better, but it takes time. I did not have my UC for years and years like so many others. UC happened pretty much all at once (I think I ate a bad hamburger at a picnic) and it did me in. I had no choice but to have surgery. If I had not had the surgery, I would have most likely died. I guess I really had two choices...but I wanted a third, and one was not available. I think of this journey as we have crosses in life. For me, this cross is a bigger/heavier one :) My ostomy is 2 years old, and it did take me several months to be comfortable going out, shopping, and being me. My friend said to me early on...get living, so I listened. Take care, Walk, and know that we are here to talk. It takes time to adjust, but things will improve. P.S. - When you have the time, the United Ostomy Association is having a conference in September. All of the information is posted on the website - www.ostomy.org. I went two years ago, and it was great and inspiring. I hope to attend again this year. LH

Morning Mr. Walk. I have never asked myself why me, why now. It just is. I guess you might look at it more openly as why not me? I'm no different than anyone else, except I had a horrible disease that took a lot of precious days away from me. But, the good news is, I travel, have great friends, a sweetheart, and great support. They make it so much easier to live a pretty much normal life. I have had accidents in places that would horrify most. Hang in there, it does get better and easier. Though it is always with you, you can get on with living. Promise. Yaya

PS: When I change my bag, I lay down with a warm bean bag over the new bag for 10 minutes. I have been able to keep my bag on for 6 days weekly. I swear by this method. Just an FYI.

Walk... I had my surgery almost 8 years ago. I won't go into the particulars, but as I was told by a team of wonderful doctors, it was nothing I did. So yes, I have asked myself the very same questions over and over for the past 'almost' 8 years. The only thing that gets me out of that funk is another question I ask myself... why not me? I understand what you're feeling and hope you'll soon find peace with it.

I had four major strokes within two weeks of each other in 2002. In January, I was diagnosed with UC. I went through all the remission mess like a match in gasoline in December 2008. After the surgery, the hospital and doctor were supposed to give me Lovenox each day since you can't resume Coumadin. They failed to give me the Lovenox, so the resulting blood clots in my legs traveled upward, and I almost died in the hospital when the clots went into my lungs causing pulmonary embolisms. I also discovered after the surgery that the, you know what, doctor placed my stomach incorrectly in that it is directly under my beltline and so close to my navel that my pouch covers half of my navel, giving inferior adhesive contact on that side resulting in more pouch accidents and poor adhesion!

That was in January of 2006. I was diagnosed with UC (I forgot to put in the year in my comment above).

In late 2013, I was diagnosed with peripheral neuropathy from my toes to my armpits. It hurts too much to lay in bed with my wife of 48 years, so I sleep sitting in my EZ chair with my feet on top of a pillow placed on my ottoman with a blanket over me. I so look forward to Heaven, no more pain or troubles of this life on Earth.

I have had my ostomy since May of last year. It's natural that we have regret because our lives and bodies have changed so much. I'm grateful that my cancer is gone, but I miss being worry-free throughout the day. I miss not being comfortable in my pretty dresses or swimsuits. This group of mates has helped me learn so much, and they will help you too. Hang in there, give yourself more time to adjust and heal.

Tallinheels, I literally am doing my best to live one day at a time now. Thank you for your comments.

JJJ0922, check out the P-Stim at http://www.alliance-medequip.com/alliance-medical-pstim.html. It changed my life. You'll need good insurance, though. It is expensive.

I kind of went a little wacky. I bought pull-on style capris, pretty tops, and 11 pairs of assorted sandals with wedge heels and costume jewelry all in about 30 days. I just wanted things that made me feel feminine. It felt important at the time. Then I realized I was still me and feminine regardless. But it was fun. Ha.

Hi Walk, I have had mine since March of last year due to a cancerous rectal tumor. I did the radiation, chemo, and surgery, and I am grateful to be alive and still be here for my great family. Did you know Farrah Fawcett had the same thing, refused surgery, and we know how that turned out? I am a firm believer in the idiom "That which does not break you makes you stronger." Hang in there; it only gets better, Rosiesmom.

Hey Rosiesmom, you are indeed a heck of a strong gal, a real example setter on how to walk the walk.

Walk6076, I never wondered why me, but it's been almost 10 months and I'm not at peace with this situation yet. Didn't want the surgery (or the consequence of not having it). Just returned from a lovely cruise, in spite of the two blowouts, one private, one public. Still trying to get the right appliance style and fit, mourn my old self, didn't have years of UC or other major digestive problems. Diagnosed with a pinpoint ulcer a few years ago, this came out of the blue (thought it was hemorrhoids). Got myself to a psychologist before the surgery because I knew I'd need help with the aftermath. Stumbled upon this lifesaving site, and as hard as it is to believe, it does get better. It's still not great but it's lightyears from where I was. It gets better, but as I said to my shrinker I'm sure it will get better, but it is not better today. So take it one day at a time, sometimes that's all you'll be able to manage, it will get better. My faith is strong, and I try to remember to be grateful that I'm not a child, that I'm able to care for myself, that I'm cancer-free and that I woke up this morning. One day at a time.

Cuppatears, we are all at various stages in our acceptance of our situation. My surgery was in December 2008 and although I have learned how to take care of it well, etc., it is still a major pain in the butt physically as well as mentally when my stroke consequences and my Peripheral Neuropathy torture me from my toes to my shoulders 24/7. But hey, I have no choice as it's not gonna go away or get better, so I make the best of each day as I can, with some days being bearable and others hell on earth, and yes, I will live this way until God calls me home and everything will be perfect for eternity.

Hi all, this is Marsha...again, responding mostly to JJJ (about not feeling like damaged goods) and to Cupatears. I started my journey with ulcerative colitis at 12, and that's when I went through the "why me" stage. At 15, I found out that I would need an emergency ileostomy, and instead of feeling like I was going to be damaged goods, I felt anger and resentment at my parents for cheating me out of 3 years of real life. Okay...I did get over that, eventually. Ironically, it was never the ostomy that made me feel damaged; it was all the stretch marks, from my legs, on my arms, and all over my body. I was a purple zebra (from the steroids) with pink stripes. Not what a teenager wants to look like. So eventually, I was off the steroids, and looked almost normal with my clothes on... It took me quite a while to adjust to intimacy...and accept my own body, but I did it. It helped to have an understanding and accepting spouse. It helped that he had an ostomy too...but as time went on, I gained weight, and he wasn't happy with that. For some reason, women (and maybe men too) respond to how others think of them, rather than what they think of themselves. Eventually, I divorced, and have been dating for the last 20 years. Mid 40's to mid 60's brought about other changes in my self-esteem... Why waste time worrying about things I couldn't control. So if a guy has a problem with my weight, stretch marks, or ostomy...it's his problem, not mine...and he's not for me. However...I'm back to feeling like damaged goods...(laugh, people) because my teeth have hairline cracks, and one by one, are splitting and cracking...and leaving me toothless. I look at myself in the mirror, as I put on eye makeup and say why bother, you can't smile without showing the missing and cracked teeth. I don't have dental insurance, am maxed out on my credit cards from drug bills, and can't afford to pay for all the dental repairs that are needed. Sigh...such is life. For me, my ostomy is such a non-issue...in comparison to my toothless smile. I don't know if this helps anyone put things in perspective. There's an ebb and flow to life, and some people are hit harder than others. But we all have the ability to accept our own self and get on with the business of living the best life possible...I currently see only 9 specialists, but a few weeks ago both my knees started aching, and now I can barely walk down steps without pain. I'm hobbling...but all I can think of is that going to an orthopedist is going to add a 10th specialist to my datebook. All these doctor's appointments will definitely cut into my dating social life. I am writing this seriously...and partly with tongue-in-cheek humor. Life for me is what it is, and as difficult as it might be, I don't want to face the alternative...as yet.

Thank you, Marsha, for your sharing and your great perspective on life... very much appreciated. Take care. LH

Hi Walk, I spent three days wondering why me, then I had a heart-to-heart with God and I felt immediate peace. From that point forward, I was glad that it was me and not a member of my family or a friend that had to go through this journey. Good luck with your journey and know that it will get easier. I'm not sure what kind of ostomy you have, but there are options for some colostomies to help live life more normally.

Hi Walk, my story is very similar to Marsha's and a few others on here. Yes, sure, I sometimes think of all the things to have, why me and why this? Who has ever heard of such a thing? But, I have had my ostomy over 40 years ago because of Crohn's. I was 20 and newly married, and I was very scared. But, I also remember spending my days in the bathroom or in the hospital. I can remember looking out of my hospital window at the height of winter in Toronto. I used to wish that I would give anything to have the ability to be in all of the hustle and bustle of the morning rush to get to a job, even though it was freezing cold outside and everyone looked so stressed to get to work. I wanted badly to just live a normal life out in the world like everyone else. Well, over the last 40 years, I have done that and more. I am so thankful that the one surgery of removing all of my large colon and rectum rid me of the Crohn's and it never came back. I pray every day that it will never come back again and that my ostomy will continue to be good to me. I think that even if I had another option of going through surgery to rid me of my ostomy, I would not take it because it has worked so well for me and has just become a part of my life. It will get easier for you as long as you are willing to accept this alternative and shift your mind to feel fortunate about it. Best of luck and feel free to vent or ask questions with all of us as you go through this journey. You are not alone.

Hi Walk: Redondo hit it square on the head when he said, "I think that even if I had another option of going through surgery to rid me of my ostomy, I would not take it because it has worked so well for me and has just become a part of my life. I've also given reversal a lot of thought; however, after 10 great years with an ileostomy, I've learned to live with it. I'll be turning 73 next month, and I just don't want the pain associated with a reversal. It's been a great 10 years since my surgery, and an ostomy is a small matter of inconvenience to my daily life. You've received some great comments here from folks that have had the same thoughts: WHY ME? It's quite a journey, but remain positive and ask questions. Wishing you the best of luck; we're all here to encourage and help you as you learn to deal with this life-changing event."

Thank you all for your comments and encouragement. It really means a lot.

Walk. If you are generally fit, you can do anything in life that you want to do. I was 20 when UC first hit me. I was fit, a promising rugby player. I suffered 8 years in and out of hospital, etc. etc. etc. Ileostomy at 28. I did not want it, but I started playing rugby again at 30 and played for the next 17 seasons, including playing in the same team as each of my 3 sons. I've traveled and enjoyed my life. I'm now 69. So get on, live.