Why This? Why Now?

May 12, 2015

iMacG5 : 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

May 12, 2015

walk6076` : Thanks Mike everyday 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 mos. I'm tired of buying women's feminine products if you know what I mean. LMAO!!

May 12, 2015

bes0642 : Hey WalkWell I think all us at one time or another have wondered the same. Why me? I think you famed it right. It's better than the alternative. I'm 73 and had emergency surgery in 2005. So I've had my ileostomy now 10 years. Sure it's altered my life style 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 a 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

May 12, 2015

walk6076` : Thanks Bob. So do you think I should do the full membership?Tony

May 12, 2015

bes0642 : 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 life style changes. Bob

May 13, 2015

walk6076` : Thanks BobTony

May 15, 2015

Immarsh : 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 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

May 15, 2015

LadyHope : Hi Walk, Welcome to the site. Yes, I also questioned the why me and 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 did not have 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. Ps - 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

May 16, 2015

yaya : 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 ceptn I had a horrible disease that took a lot 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

May 16, 2015

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

May 18, 2015

amck : 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 questions I ask myself...why NOT me? I understand what you're feeling and hope you'll soon find peace with it.A

May 18, 2015

jjj0922 : I had 4 major strokes within 2 weeks of each other in 2002. In January I got or 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 Dr were to give me lovinox each day since you can't resume Coumadin. They failed to give me the lovinox so the resulting blood clots in my legs travelled upward and I almost died in the Hospital when the clots went into my lungs casing Pulminary Embolisms. I also discovered after the surgery that the you know what Doctor placed my Stomach incorrectly in that it is directly under my belt line 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!

May 18, 2015

jjj0922 : That was in January of 2006 I was diagnosed with UC (I forgot to put in the year in my comment above)

May 18, 2015

jjj0922 : In late 2013 I was diagnosed with Peripheral Neuropathy from my toes to my armpits. It hurts to 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.

May 18, 2015

tallinheels : I have had my ostomy since May of last year. Its natural that we have regret because our lives and body has changed so much. I'm grateful that my cancer is gone but I miss being worry free though out the day. I miss not being comfortable in my pretty dresses or a 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.

May 19, 2015

jjj0922 : tallinheels, I literally am doing my best to live one day at a time now. Thank you for your comments.

May 19, 2015

westie_lover : jjj0922, check out the P-Stim at http://www.alliance-medequip.com/alliance-medical-pstim.htmlIt changed my life. You'll need good insurance, though. It is expensive.

May 20, 2015

Rosiesmom : I kind of went a little wacky I bought pull on style capris pretty tops and 11 pairs of asst 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

May 20, 2015

Rosiesmom : Hi walk, I have had mine since March I'd last year due to a cancerous rectal tumor. Did the radiatin chem surgery and I am grateful to be alive and still be here for my great fam. 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 that's does not break you makes you stronger. Hang in there it only gets better,Rosiesmom

May 20, 2015

jjj0922 : hey Rosiesmom, you are indeed a heck of a strong gal, a real example setter on how to walk the walk

May 20, 2015

Cuppatears : 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. OneDayAtATime

May 20, 2015

jjj0922 : 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 torturing 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 ive this way until God calls me home and everything will be perfect for Eternity

May 21, 2015

Immarsh : 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. Ok....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 teen ager wants to look like. So eventually, I was off the steroids, and looked almost normal with my clothes on.... It took me quite awhile 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 other's 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 I 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 make up 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.

May 21, 2015

LadyHope : Thank you Marsha for your sharing and your great perspective of life....very much appreciated. Take care. LH

May 25, 2015

medic361 : 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.

May 25, 2015

Redondo : 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 yrs ago because of Chrons. 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 use 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 Chrons 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 that 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.

May 26, 2015

bes0642 : 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 that 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 have given reversal a lot of thought however, after 10 great years with an ileostomy I've learn to live with it. I'll be turning 73 next month I just don't want the pain associated with a reversal. It's been a great 10 years since my surgery 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.

May 27, 2015

walk6076` : Thank you all for your comments and encouragement. It really means a lot.

May 27, 2015

Monsieur Le President : WalkIf 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 playerI suffered 8 years in out of hospital etc etc etcIleostomy at 28I Did NOT want it, butI started playing rugby again at 30 played for the next 17 seasons, including playing in the same team as each of my 3 sons.I've travelled enjoyed my life im now 69So get on LIVE

May 27, 2015

Monsieur Le President : Pardon the grammar

May 27, 2015

walk6076` : Thank you!

May 27, 2015

Immarsh : Hi Walk, Listen to Mr. Le President... despite his grammar, he has the right idea. My 3 years of living with and treating ulcerative colitis, was far worse than the more than 50 years I've had my ostomy. I've done everything I ever wanted to do...except wear a bikini ( but I didn't have the body for it anyway). I dated, married, had two children, learned to ice skate, and flopped on my belly, learned to ski, and flopped on my belly, and belly flops into the water was normal, when I tried to dive into the pool. Obviously, I'm not athletic, but my ostomy endured all my antics... So take the oportunity, to seize the moments, and do what your mind, heart and soul prompts you to do. Just spend some time preparing, and you can do anything. Best regards,Marsha

May 27, 2015

iMacG5 : Thjanks for startingthis, Walk. No two people are identicle and nobody can feel anothers pain. It's theirs. Mine is mine and yours is yours. But how great is it that we're able to share our experiences to learn how others handled stuff we found almost unbearable. Then, maybe without even thinking about it, we somehow accomplish something relative to our pain that surprises us and we want to share. Then someone else reads it and thinks they'll try it and it goes on and on. We've all suffered in different ways and different levels. We're so fortunate to have each other and blessed by those who are so generous with their time and energy to help others put things in perspective. I thank God for these parts of âthisâ and ânowâ.Thanks to all,Mike

May 28, 2015

mrbreezeet1 : hey buddie, Yes i did think that, why me, why now, 'would have, could have, should have. went through some depression for the first time, this past winter of 2015, slept 14 15 hours a day. I had lots of support from friends and family, but really didn't change things at that time. I am thinking it might have been Gods help, but I came out of it. But like you said, it is worse than Dieing. And it is!!I am just so happy to be alive, albeit, things did change, and l have some medical issues that will probably not go away. Also, l was trying to buy a house before l gt sickand the cancer and not not being able to work, and l am on a fixed income now, changed that!But Now I have to continue paying my landlords mortgage But OH well, I have come to terms with it. Like has been said before, it could be worse, l could be living on the streets. Dont worry, be happy

May 28, 2015

iMacG5 : Sorry about the spelling, printing, etc. The last sentence of the iMacG5 comment referred to how you guys addressed THIS and NOW.Mike

Jun 02, 2015

california nurse : Hi Walk,I'm not an ostomate, but my husband is, from CUC. He had his surgery 11 years ago with a $hitload of complications that went on and on for two years. He's still pissed! He learned to deal with his stoma issues independently very quickly, and that independence was really important for him to regain a sense of control in his life. In fact, he has been pretty resistant to any suggestions I made, even though I returned to school to become a certified ostomy nurse. One suggestion I have that I hope you will consider is to switch from feminine hygiene products to incontinence pads. They come in the same sizes as the feminine pads do, complete with the adhesive strips to secure them to your underwear, but are more absorbent, decreasing the likelihood of moisture-related irritation. A support group is helpful, whether online, or a group that meets regularly. As you've undoubtably discovered, just knowing that you're not in it alone is helpful. But the hints from others who have figured out what works for them is a real boon. People have clothing hints, ideas for skin irritation, preventing kidney stones, sex, stoma farts, insurance hassles, product advice, EVERYTHING!

Jun 02, 2015

Immarsh : Hi California Nurse....My name is Marsha, and thank you so much for posting. We don't get too many medical professionals on the site, so even if y our husband doesn't take your advice, many here would probably love do hear what you have to say. For myself....I pre date ostomy nurses. I had my surgery back in 1965 when I was only 15, and my student nurses, reg nurses, interns and residents, learned about maintenance, along with me. I recently tracked down the 4th year medical student who set my head straight, and made me take responsibility for my own , newly changed body. I'm 66, and he's probably in his late 70's now, but I will forever be grateful for all he did. Today's ostomates don't realize how lucky they are to have the nurses trained to help them learn to manage their ostomy. Back then, members of the ostomy associations met with surgical supply companies, tried out new products,a nd even visited new patients, once they came home. Often times, it was the blind helping the blind, and in some ways, it still is. Hope you check in with us again. Best regards to you and your husband...Marsha

Jun 03, 2015

LadyHope : Hi Everyone, I was just reading the recent posts and thought that I would share. I just returned from a work conference, one that I have attended for many years. I went, I saw and I conquered, took names, business cards and came home. Like the days before the ostomy, it was fine and I made it. These little successes help me feel like my old self again. It was fun to see colleagues, those who did not know about my sickness or my surgery. It was funny, several women and I were talking about of all things belly fat. Two women grabbed their bellies and I did also ( along with the appliance and my stoma) No one said what is that...??? My belly looked okay. Like one of the previous posts, it is a small inconveniece and doing my best to keep moving forward. I have another work event tonight. I am not fond of evening events because that is when my stoma Stanley is most active... chattering away and telling me all about the day. Anyway, I have my Stanley plan in place because I really do not like to use public restrooms...never did before surgery either:) The event should go well and if it doesn't, it is a stoma learning lesson for me. Thank you for letting me share... have a nice afternoon everyone. LH

Jun 03, 2015

iMacG5 : Thanks for sharing, LH.Mike

Jun 04, 2015

LadyHope : Just a short update... I attended the evening work event, it was rather significant, and everything went fine. Another small stoma success for my file. Take care and have a nice week. LH

Jun 12, 2015

walk6076` : Thanks!!!

Jun 29, 2015

Rosiesmom : Hi walk Rosiesmom again, I lost my brother who lived in Scotland 4 yrs ago to cancer 6 months before he died they removed his bladder and gave him a urostomy he never came to terms with it and if truth be told he was very angry about it. Sadly they had waited too long to do the surgery and the cancer spread taking him within a couple of months. I loved him but the good lord in his wisdom chose to take him as he would never have accepted his new way of life. Perhaps that is why when I was diagnosed with rectal cancer and ended up with Rosie and my rectum stitched closed I was determined to only look at the positive. I am alive and intend to stick around to enjoy my family and many blessings. You have made contact with a great group, stay strong the best is yet to come.

Jul 02, 2015

Beshlie : I wish you all the best, walk. I have yet to have my colostomy and have my pre op assessment on 20th July. My case is a little different as I had to have 1/3rd of colon and about 3 yards of small bowel removed because it had died and gone gangrene. Following that surgery last July I've been housebound due to diarrhoea and incontinence. Having tried all the drug options a colostomy is the only answer, which I guess will be in August/September. At the moment I am gathering all the info I can so to be as prepared as possible, though I doubt we can be 100% prepared. I don't know if my rectum will be removed as well, but to just be able to leave the house and lead a normal social life is a dream at the moment. I have only just joined you all today and what I have read so far is brilliant. I see my stoma nurse on the 9th and am looking forward to that. This time last year I would never have imagined I would be here now! Just shows how quickly things can change...All the best to you all, Beshlie

Jul 02, 2015

Rosiesmom : Hi beshlie, Rosiesmom here. I wish you the very best outcome for you surgery. Perhaps I have been one of the lucky ones in that I did not have too many issues afterwards. I have always used the Coloplast 2 piece system with Velcro. Closing. It has worked well. Just came back from a fam. Trip to Europe so yes you can have a normal life albeit a new version of normal. I will look forward to hearing of your progress. Take care and God Bless we will all be here to help when needed. Yours. Rosiesmom

Jul 02, 2015

Redondo : Hi Beshlie. Too bad you have to wait so long before your surgery. But, it sounds like you are doing all of the right things. Especially meeting with a stoma nurse. She should make sure that your stoma will be marked for the doctor to place it in the right position for you by your surgeon. I had to have my rectum removed too and I have not had any problems. My surgery was over 40 yrs ago due to Chrones. So at first I had fistula problems because there was still a little Chrones left. I had a brilliant surgeon in Canada and he did a great job.Keeping a positive attitude and a sense of humor throughout this ordeal will help you immensely as well as prayers and faith if you are so inclined.All the best.

Jul 02, 2015

iMacG5 : Welcome Beshlie. I, too, am sorry you have to wait so long but make it work for you by reading all you can here. You're in a good place with lots of bright, caring, experienced folks to answer your questions and get you prepared. Wish you the best.Mike

Jul 03, 2015

Beshlie : I really don't mind having to wait for my surgery as it gives me more time to prepare for it. It's not unusual to have to wait on the NHS unless it's an emergency, like my surgery last year was, and non of us want that! The stress of that made me lose my hair, but it's growing back now. Hair can be replaced, unlike life. I am leaning towards the 2 piece systems as I can be sensitive to things that stick to my skin, but I will take it up with the stoma nurse on the 9th.Thank you for the welcome :).Best wishes, Beshlie

Jul 03, 2015

LadyHope : Hi Beshlie, Just a quick hello to wish you the best meeting with the stoma nurse. I use a two piece system and it works well for me. I change the pouch everyday to keep the filter working and it also give me a chance to examine my stoma. I can relate to the loss of hair. My hair went thin after my treatments for UC. It did grow back after surgery and when I gained some weight. I can relate to how quickly life changes...going from relatively well to being sick and almost dying. You came to the right place. Everyone here is helpful and will offer their guidance. I was and am very grateful to my pals on this site. Take care - LH

Sep 03, 2015

Cuppatears : Hello All,Was just musing to myself today gee, maybe I've gotten the right equipment (pouch/flange/tape) combination, haven't had a blowout in weeks. Well the count begins anew because out of the blue, 3-day old rig was blown apart by something I ate. Last time I could blame it on Thai food (although I'd had the exact same meal twice before, even during chemo without incident). This time I'd eaten cheerios in the morning, rotisserie chicken this evening. Checked everything before I left out (of course I was going out, this has only happened once at home), then a familiar small pain, went to restroom and checked, everything's ok. Five minutes later--EXPLOSION. Due to an acute attack of pancreatitis, requiring a week's hospital stay (NOTHING by mouth for 4 days), for the past couple of weeks I've actually been adhering to the lowfat/low cholesterol/low taste diet I should have been using for over 40 years. I'd had NO digestive problems except for constipation until my diagnosis of rectal cancer last year--so I'm STILL trying to adjust. For about 3 weeks or so I celebrated getting close to my pre-surgery, pre-chemo weight by eating whatever I wanted, no brakes. Well pancreatitis brought me to my senses, i thought. Went back to work two days out of hospital (I can do it all, have it all, be everywhere, do everything) -- suffering with blinding migraine, crashed into a pole. Here for all the world to see; I SURRENDER MY SUPERWOMAN COSTUME. Tickling round the back of my mind is irrigation, I hate the idea vehemently, but these sudden surprise attacks of what I'd consider diarrhea for no apparent reason, sink me back to 3-4 months post surgery. I make one step forward and slide back three. I'm normally a very optimistic, positive person, but this - for the rest of my life? So hard to take, yes I know, be grateful to be alive, but when it's really tough when you're standing in a handicapped stall (thank God) butt ass naked using bottled water and toilet tissue to clean yourself up, and no matter how many times I washed my hands, I swear I still smell crap, hours later. So I guess I needed to vent, or else I'll cry.....the cuppatears is still full. So please somebody, tell me how much better things get when you irrigate. And how the heck do I learn how to do it?And thanks for being here, because no matter how sympathetic friends are, they don't really understand.

Sep 03, 2015

Cuppatears : p.s. how could I forget to mention the neuropathy! Doc said it could last months or years. I said, it's already been months so I guess it will be years!!! Thought maybe the way I applied the rig caused the problems (remedied pancaking finally), since on any given day my fingers may be more numb than others, may as well throw everything to the floor immediately to avoid having to pick it up later. Fingers are much better, if this is as good as it gets, I might be able to deal with it, but the feet are another matter. No pain, just numb -- makes walking difficult, and never barefoot!Please keep reminding me that it's worth it--some days it's hard to tell.

Sep 04, 2015

medic361 : Cuppatears, hang in there. I began irrigation about a month after surgery. There are plenty of videos online to explain the procedure. You could also consult an ostomy nurse. It adds about an hour to my routine but it gives me the freedom of not having to worry about having an ostomy. I typically wear just a stoma cap and keep bags handy in case of some of the be of stomach bug or food disagreed no with me. I know it's hard to deal with at first but after a couple months of irrigation you will start to regain your confidence.

Sep 05, 2015

veejay : Hello CuppatearsIrrigation is only possible if you have a colostomy.Does not work with ileostomy.Sorry.Fully understand your frustration and depression.VJ.

Sep 05, 2015

Immarsh : Hi Cuppatears, It sounds like you're really going through a difficult time, and it reminds me of a get well card I bought years ago. I wish I could send it to you....but I'll share the thought. I warn you though...it's dated. Don't you wish life were like a VCR ? So you could fast forward through the difficult times.It's a very simple thought, but it's stuck with me for many years, and many ups and downs, in what I call my roller coaster life. We all know bad times happen, bad things happen....but we all have a choice. We can fight against them...or we can learn to accept what has happened, and go on from there. Accepting an Ostomy, may be easier for some, and more difficult for others. I was once on a date, my pouch filled up with air, and the seal popped. Oh MY! I never carried spare supplies with me, and I won't tell you how I managed to survive the evening but I did. Did I hate my ostomy at that moment. Nope. I blamed myself for not getting to t he bathroom sooner. I have friends who have peed their pants....and others who have messed up in other ways....Literally figuratively shit happens. Try to avoid getting overwhelmed by all that's going on. A few weeks ago, I thought I would never smile or be happy again..... but that Roller coaster ride has a way of going up again. Keep sharing what's happening....and other's will offer suggestions or support. If you have a Colostomy ( I don't ) I know that some people thing irrigation works great. Best regards. Marsha

Sep 06, 2015

wildlife : Hi all, I am a new member that joined today and am from south Africa and have a colostomy and serious neuropathy for 8 years now, have made peace and am happy. Barefoot is definitely a no no and walking on grass feels like walking on broken glass. I gave up on using the bag / pouch system after some messy incidents and have been bag free for 7 years and my confidence and quality of life has improved by 300% with no more spares to carry around' Life's good just have a positive outlook !

Sep 15, 2015

LadyHope : Out of suffering have emerged the strongest souls- the most massive characters are seared with scars - Kahlil Gibram . This quote was shared with me and I am passing it on. LH

Oct 08, 2015

LadyHope : Hi Eamon, What a great post, truly from the heart. I hear you and posted on this thread previously. I too was very healthy, living life to the fullest and my body began to fail me as well. I blame it on a spoiled hamburger that I ate at a summer picnic. But, whatever caused this autoimmune problem could not be cured and I too was left with a stoma. Somedays I am okay with it and live my life as I did previously. Other days it scares me to death because I start to ask the what ifs....What if something else happens, what if, what if, what if. Then, the what ifs are accommpanied by why did this happen to me? Pretty difficult mix of feelings...the frightened and the sad. I try to keep positive and when I am feeling good, I take advantage of the positive. It is the only way for me. When I get sluggish and in to my head, I do my best to put it in drive and go....I am not certain where I am going but I go somewhere, the store, market, a walk, the florist, etc. Take care Eamon and everyone. We are not alone in this journey as we have each other to share, offer suggestions and smile. I thank God for this site every day. LH

Oct 08, 2015

Rosiesmom : To all who responded to walk, Rosiesmom here. I am currently enjoying the month of Oct. in a rented condo on Crescent bch. St Augustine. My friend from home (Edinburgh) is here also my beloved hubby. Tony. Sons and grandkids arrive. Sun. Ion thanksgiving day when I hemmoraged from as the an unknown rectal tumor (cancer) and the following day being being told hid cancer I thought my life could be over soon. I went through the chemo radiation surgery and birthed Rosie. More chemo rectum sewed closed. Regrets? Perhaps only for my own fear that prevented me seeking help sooner. However that is in my rear view mirror, it affords me nothing to what if. I live now. And only now. I had a great month in Europe with my whole family and now I am here. I love Rosie she is a part of me and anyone who is ever disgusted by her or are embarrassed when she becomes vocal lol are not important in my life. My 4 year old Granddauter know s abou her. Is she bothered? No. It is how Grammies goes pottie, nuff said. We are unique we are strong we are a part of an elite group SURVIVORS. Yeah for us. Love to all. Rosiesmom

Oct 08, 2015

iMacG5 : Rosiesmom just kinda enlightened me. We ARE strong, somewhat unique and, certainly, survivors. I guess we tend to forget how far we've come, what we've learned, what we've shared and the energy it took to get where we are. Yup, we ARE special and I'm gonna try to remember that.Thanks Rosiesmom.Mike

Oct 08, 2015

LadyHope : Me too!

Oct 19, 2015

walk6076 : Hey everyone for some reason I can't get back into my account. I started this blog and have come a long way since I wrote it. My new screen name is walk6076....get ready for some amazing update.

Oct 19, 2015

california nurse : Hey Walk, I've been following this thread since your first post back in May. I'm wondering how you're doing now: what trials and tribulations you've been through, what discoveries you've made, and how you're feeling about life now. So update me already!

Oct 19, 2015

LadyHope : Hi Walk6076, I can't wait to here how things are going too. Take care! LH

Oct 19, 2015

walk6076 : Well, I see they've changed the rules since I started my first blog. I'm not going to be on here long. I think we need to start a Facebook group. Let me know if you're game. Send me you FB name. Here's my update. I was in so much pain when I started this blog. It was unbearable, but I chose not to complain. I only asked God for three things. The ability to walk/run again, to be able to exercise, and to sing again. I'm proud to say that I have now done all of the above, with last night being the first time I've sang publicly since my surgery. Having this hole in your stomach changes things. All of my pain subsided the last weekend in June. For the first time since my surgery, I can truly say that I'm happy. I thank you all for all of your support, comments and kicks in the pants. I'm Tony D. Christon-Walker on Facebook. Just hit me up and tell me you know me from here.

Oct 19, 2015

Rosiesmom : Hi walk, happy to hear you are in such a good physical and emotional place. I have thought of you often. Keep up the oddities, how about a vocal post, would love to hear you. I don't facebook so please log in from time to tome. You have come a long way baby. Lol yours, rosiesmom

Oct 19, 2015

iMacG5 : Hey Tony, I don't do Facebook so I'll look for you on the Voice. Pick Blake or Pharrell.Keep it going and thanks for sharing.Mike

Oct 27, 2015

Dreamaker : hello everyone , my names David and i've had my ostomy since Dec this year and I am finally getting used to it but it makes me feel very unmanly if you can understand that.?

Oct 27, 2015

medic361 : Hey there David, I have had my colostomy since January 2014. I can understand how you can have those feelings, but just remember that your colostomy is just a scar from your fight with a killer. You won that fight, you are still here and the cancer is gone. That's how I keep myself positive. Stay strong and positive.

Nov 04, 2015

moonshine : well................its not that easy for a chick either.......i have had this ileostomy since 10/2010......its a bitter pill to swallow - no pun intended since i have sclerolerma with esophageal problems......but there are people out there that will see beyond our physical issues

Nov 10, 2015

cabbage : HI, I live in Las Vegas and would like to hear from anyone (age at least 65) re: their ostomy.magoo looks a possibility. Anyone out there that lives in Las Vegas, Mesquite or LV surrounding areas? Would like your email address if possible.Thanks. Cabbage. Look forward to hearing from anyone. I had my ostomy 3/14 a hearnia surg. 5/15

Jan 09, 2016

labrat : walk I had ostomy in nov. 23 of last year. due bowel perfation a doctor over looked. I had four surgeries in two days, many infections, massive blood loss, and when woke up in icu they had day of death on the board. she wanted a divorced and was cheating on me. I am on own now, getting ready to try get back in college, off 1/2 meds, lost 112 pounds and still losing, I look great feel great, still trying to figure ostomy stuff too, I facebook group if interested, keep head up chin up and bag tight. talk to you soon.

Jan 09, 2016

Wisteria : You have such a positive attitude for having so recently gone through so much. I am currently struggling with several physical problems, some the drs are still trying to diagnose. What gives you inspiration?

Jan 09, 2016

labrat : I learned a long time ago you got fight in this old world. God has purpose for me or he could have taken my life very long time ago. I meant to find that purpose and use it.

Jan 10, 2016

LadyHope : So true.

Jan 13, 2016

cabbage : Hi LadyHope labrat said it all.

Jan 13, 2016

cabbage : LadyHope,
My email said you had a comment for me, but I can't seem to find it. A computer guru I AM NOT!

Jan 13, 2016

LadyHope : Hi Cabbage, Thank you for the email. I did comment on the previous post regarding life has a purpose. Hope you are well. Thank you for reaching out. Have a nice week. LH

Jan 19, 2016

Lemonlimeviolet : Hi, I was (past tense)having a bit of a struggle this morning due to news that I need another surgery for a hernia but after finding you and reading your posts Im stronger because even though the initiation for this club we are all in was horrible and the monthly dues can range from easy to terrifying-our membership is loaded with mind blowing physical emotional and spiritual victories. Thank you one and all for your candid stories. To triumph apparently means something a little different to each of us. The common denominator is sharing in order that it could possibly help another soul and at this point I just wanted to be a part of it.. I had a colon perf, peritonitis, and sepsis in June then resection in sept with anastomotic leak so emergency colostomy. My surgeon looking at the stoma in ICU the next morning dubbed it beautiful and said he took pride in all his stoma creations -that they were like kids to him. So with raised eyebrows and a little tongue in cheek the nickname 'beautiful' has stuck. The definition of beautiful has changed for me and is still a very tough battle. Now my Arsenal contains quotes from medic361 and labrat that bear repeating:"colostomy is just a scar from your fight with a killer...you won that fight" and "you got fight in this old world" "head up chin up and bag tight". Peace.

Jan 19, 2016

iMacG5 : Hey LLV, you're so right. Sharing is invaluable. Thanks for your perspective.
Mike

Jan 19, 2016

labrat : We all have days of the blues. Trust me.. Today has Stunk For me I fighting my x court over my 15 year old daughter. No one believe that my x is abusive but the police keep getting repeat calls back. Plus now hotline for abuse from the school. Makes me mad no money to fight it. Just the will to keep trying and living.

Jan 20, 2016

LadyHope : Thank you for all of the posts. They are inspiring. LH

Jan 27, 2016

Mabel676` : Thanks to Dr Osas for curing my husband from Colon cancer. If you are having any kind of sickness, diseases or virus, kindly contact him cause he can help you get rid of your problem. He is a God sent to save the people.
Contact Dr Osas on doctorosasherbalhome@gmail.com or call him on +2348112252378

Mar 06, 2017

skylar : These are all older comments, if you are still in this group I would love to hear how things are going

Mar 06, 2017

wildlife : HiAll, Had my Colonostomy Operation in 2008, and Life is great since I "invented my own bagless system 7 years ago.

and my quality of life has improved by 200%. email me for more info mark@glanvill.co.za

Mar 06, 2017

iMacG5 : Hey Skylar, I'm curious also. About 25 folks commented thanks to Walk6076's post. Hope all of you are OK and even brighter than you were in 2015 if that's possible.
Mike

Oct 25, 2017

freedancer : I have had my ileostomy since July 12th of 2017. I got sick after eating supper one night. I had no notice or nothing leading up to it. I went into emergency surgery and came out with "Maxine" on my side. I have gone through most of the stages so far but am struggling with the "why" question to this day. I used to beg God not to take my life when I prayed at bedtime. I had so much I wanted to do, watch my grandbabies grow up, graduate high school and college and get married and ultimately have a great grandbaby to hold and cuddle. Now I thank Him most every day for allowing me to see the sun come up and I am eternally grateful to Him for putting me in the right place when I got sick so that the best surgeon in the hospital was on call. I was very close to death but when I woke up in ICU, I cried very hard because "Maxine" will forever be a part of me. Sometimes I hardly notice her but other times she is very stubborn and argues profusely, often causing me pain but without her, I would be 6 feet under. I talked to God for the three days I was in ICU. I asked why me, why now? I didn't get much of an answer except that I was alive and would be able to do all I wanted with a few lifestyle tweeks. The surgeon says that he does not know why all my lower bowel died within 24 hours. He could find no cause except that it was all dead and had I waited even one more hour, I would have been dead. God saved me that night by guiding the surgeons hands and giving knowledge and skill to the anesthesiologist who kept me alive while the surgeon worked on me. Every day that I draw a breath is a blessing to me. I am learning more and more about "Maxine" and what makes her happy and sad. I miss a great deal of the foods I used to enjoy and take for granted. I study constantly and ask a lot of questions on this site. The people here are kind, knowledgeable and defiantly know what I am going through. I ask, listen, learn and even share what I have come to know. It helps if you try to put the "why" away for a while and think about "what is next?" If you spend some time being very quiet, God will tell you what He has planned. I bet it is going to be wonderful! God bless you with peace and understanding and great love! Pamela Conley, Billings Montana aka Freedancer

Oct 26, 2017

iMacG5 : Hi Freedancer. It's wise of you to suggest putting the "why" away for awhile. There's a reason for everything but sometimes we mortal humans won't find that reason. For the believers, "God works in mysterious ways". So for us there's faith. For the nonbelievers, well, who knows?
Thanks for your thoughts.
Mike

Oct 26, 2017

Immarsh : Hi Freedancer, and Fellow Ostomates, During the years I was a kid, and sick with Ulcerative colitis ( 12-15) all I oould do was question Why me....why was I so sick, why couldn't the doctors cure me, why was there seemingly no end. After nearly 4 years, at the age of 15, my parents and doctors told me I was going to have surgery. I was apprehensive, but so happy to finally be disease free ( Ulcerative colitis), and I accepted my ileostomy with gratitude. There were some difficult times, but for the last 54 years.....it's been my badge of survival. But now I find myself at 69, with so many medical issues, all stemming from those early disease years. As a child, I was able to envision a future of Health...someday. At this time of my life, I find that more difficult to do. I never blamed God, when I was a kid.....but these days, it's a challenge to realize, that " the best / or healthiest years of my life, may have passed. It's not that I've " lost hope", just that I'm coming to accept that the best of times, doesn't last forever. So I do the best I can, with the time I have, I'm determined to .emjoy the good days, smell the flowers, cherish my memories, and when I can, make new happy memories with family and friends....It " ain't over" till it's over, and although I see 10 different doctors, and life can feel like I'm a roller coaster.....I'm sticking with the ride as long as I'm able.

Oct 27, 2017

LadyHope : Well said Marsha! I completely agree.... it ain't over till it's over. Have a nice weekend. Sincerely, LH

Apr 08, 2018

Akail : I'm where you are, but still on the ore-surgery side. I get absolutely overwhelmed when I think of all they are going to do to my still-young 56-year-old body, which I have taken good care of ALL my life (rubber, amateur triathlete, boot camper). I feel like Frankenstein, and I am so afraid. I e never asked , why me? Too many good, good people and innocents in the world who've been dealt tough hands...felt I was never given a special sticker saying I'd be spared. But what I do say, when people ask, is that I'm super disappointed. And I'm scared. I pray for peace with all of this all the time, and that does help. There isn't really any wild thing I crave in life that I feel I must have, but there is SO much more I want to give. So, I choose to walk through this very dark time to get to the other side, hopefully tonlught and fullness. Hoping so much to find my inspiration here!

Apr 08, 2018

Akail : Oops...typos... pre-surgery, runner, have never, to light

Apr 08, 2018

walk6076 : Akail, my original post was three years ago and there is no way I would have predicted what a great recovery I've had. I run, swim, even go to the trampoline park with the grands. It gets better.

Apr 08, 2018

iMacG5 : Hey Akail, I think you are your inspiration. Beyond that, there are many folks whose shared experiences will further inspire you.
We're in a good place here.
Respectfully,
Mike

Apr 08, 2018

iMacG5 : Hi Walk. Thanks so much for your success story. Sometimes folks are very active here when they're hurting and in need of help. When they get better we often don't hear from them anymore. I'm happy with all the progress made by so many and very much appreciate the follow-up. There's no better inspiration than reports like yours.
Mike

Apr 08, 2018

mrbreezeet1 : "my original post was three years ago and there is no way I would have predicted what a great recovery I?ve had. I run, swim, even go to the trampoline park with the grands. It gets better. "
Walk6076
was a reversal done, where the "Hooked you intensities back Up?
Or is it a permanent ostomy,and you're doing well with it?
GLAD TO HEAR you're doing better!!

Apr 08, 2018

mrbreezeet1 : LOL My Name Is Anthony Too.

Apr 08, 2018

iMacG5 : Hey Anthony, guess what! My middle name is Anthony. My Confirmation name also is Anthony. I have two Anthonies! Sometimes you just can't have enough Anthonies.
Mike

Apr 09, 2018

freedancer : Hey Walk, freedancer here. Well, I had to have everything redone on the 17th of February 2018. Once again, I was very close to death but God saw fit to guide the surgeon's hands again and pulled me through. It turns out that the first surgery failed and my ileostomy failed about a month after the first surgery. It strictured and nothing could get through except a little air and a small amount of liquid. The new doctor who did the second surgery was shocked when he saw the size of my intestines backed up behind the pinhole size stricture. I also had many adhesions that he had to cut away. I was a mess in there. He said it was the worst he had seen in his career. "New Maxine" is working very well now and I am back to square one where I have the really bad night time anxiety, depression and once again questioning "why me again?" I am glad that God saw fit to save my life again. I am also glad that I am feeling better and that things are finally working like they are supposed to be working. I hope you have been well and I hope you won't have to have any redo of your ileostomy.

Apr 09, 2018

mrbreezeet1 :
iMacG5 :
Mike Anthony, Thant sounds Good.
What was my Mother thinking?
Beautiful Italian Name,
Anthony-Diodati!! (De A Dot Ti) .............
Then in the middle comes RALPH!!!!!...........................LOL............
My confirmation name Is Frank, After My beloved Grandfather, Frank Diodati!
Hope you and everyone is doing well!
OMG freedancer........You had it worse than me!
My 1st.resection surgery failed as well, didn't heal properly, (no till after my 2nd. surgery.
But the waste was leaking into my body cavity, and I got very sick after 3 or 4 days post surgery. (1st one)
Woke Up with the ileostomy after my 2nd. surgery.
But was able to have it "Reversed" a few months after my Chemo ended.
Hope you are doing well too.
Best of luck to everyone and may God continue to bless you all!!

Sep 11, 2018

ron in mich : Hi walk I,ve had my ileo. for 33yrs. and when I first had it I went through that stage wondering if I did it to my self or was it hereditary, also the why me, and my dr. said its just the body defending itself against what it thinks is an attack, the crohns in my case.

Mar 03, 2019

izipizi : Yes I wonder why this happened to me.Is it Karma as someone else has said....what did I do to deserve this? I had chronic diverticulitis and had an elective laparoscopic sigmoid colectomy. I went home on post op day 2 . On post op day 4 I developed an anastomotic leak, peritonitis . Needed emergency surgery ,colostomy and Hartman's pouch. Now I have big incisional hernia as well, my lower belly looks like an ass. I am scheduled for reversal of colostomy and temporary ileostomy and abdominal wall reconstruction.
I am scared to death. I am seeing a therapist . But I have nightmares from what happened. It has ruined my life.

Mar 03, 2019

iMacG5 : Hi Iz. So sorry you're going through this crap. You had to expend a lot of energy just to get so far into this post and I'm glad you did. Most of us are skilled ostomates who experienced some stuff similar to what you did or will. We can tell you how we survived, how we thought we wouldn't and how our lives were changed by all of it. Just because we're sharing in this forum must mean we're surviving with some purpose. Sometimes I thought the emotional pain was way worse than all those surgeries, the chemo, radiation and all those fingers, thumbs, pipes, etc. shoved up my butt. We do what we must to get through it with hope that we'll be better in time. We are better and you will be. Do whatever you need to do, no short cuts, just concentrate on survival for now. Good stuff comes later.
With respect, thank you for sharing,
Mike

Jun 22, 2019

denverguy : I purposely never go down that road. Would have, could have, should have? All serves no purpose. When I was in the hospital I never even thought why me, this is my journey and I will get through this was all I thought. I'm alive and healthy and living a fairly normal life. The bag is not perfect but I'm going places and doing things and no longer have any pain or all those doctor appointments. This is my experience and yours sounds much worse. I'm sorry. When you need to vent just know we are all here for you, anytime!

Jun 27, 2019

Head : Hang in there. Learn how to roll with life punches. You are still above ground. Accept and move on.

Dec 31, 2021

Panko : Sound words Head! I've had 2 man bags for 3 years now due to rectum cancer & 2 tumours recently removed from my right kidney & upper left lung, mets from bowel & last 2 ct scans have been clear thank God! I live in England UK & used to fly all over Europe on holiday but since my operation in May 2019 I have never got on a plane for fear of a mishap or leak!!
Do other peeps have this fear & how have you over come this? I know having one bag ileostomy or colostomy is much easier to manage than a Urostomy as your output is more frequent,
It is a major juggling act you are constantly monitoring even when your relaxed in your own home so how can I manage on a plane??
I recently bought a motorhome specifically because it had a shower room & toilet etc as I felt it was the only way to travel relatively relaxed knowing if I have a leak I'm not far from help? Thx Adam

Jan 02, 2022

Redondo : I think it's normal to ask why me even though I have had mine almost 50 years.Sometimes I think how weird is this and how many people do I know that have this situation? But, on the other hand, I am thankful that this solution was available to keep me alive. It hasn't prevented me from traveling to Europe and even Australia and New Zealand. I prepare ahead of time before going anywhere, even 10 miles away. Along with pouches, etc., I keep extra change of clothes in my car or in my carry on.
Take care and hope you can just get used to the idea that this is your life and before long, you don't even think about it. Good luck.
Con

Jan 04, 2022

iMacG5 : Hey Walk, you started this around 7 years ago. So glad you did.
Mike

Jan 05, 2022

walk6076 : You're welcome and I'm still thriving.