Coping with life after an ostomy: Why me?

Pardon the grammar.

Thank you!

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 were 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 were normal when I tried to dive into the pool. Obviously, I'm not athletic, but my ostomy endured all my antics... So take the opportunity to seize the moments and do what your mind, heart, and soul prompt you to do. Just spend some time preparing, and you can do anything. Best regards, Marsha

Hi Walk, I'm new to this way of life too! Surgery 4/21/15. Just 5 weeks ago. Diagnosed with UC in 2011, went into remission till Oct 2013. The WHAMO! No controlling it, so much pain. So 1-1/2 years later and 40 lbs lighter (only weighed 130) at 5'6 skin and bones, had two choices: die slowly with the disease or have surgery. I have been a health freak since I was 15, now 55. I thought, what did I do wrong? Some kind of karmic debt here??? Who did I hurt? OMG! 5 weeks later, I am becoming settled with an attitude of acceptance. I try not to focus on it and remind myself that everyone carries around a sack of poop; mine just happens to be on the outside. Kinda like a girl being inside out. I am a girl, so... you get the gist of it. There is something there that I wasn't born with. I just signed onto this site yesterday and it has already let me know we all feel the same in the beginning and have the same vain issues, emotional issues, and mental torment to go through. My kids had just found stability in their own lives and I just semi-retired. I was ready to live MY life now. Single mom for 26 years. Anyway, then UC and surgery. Oh my, we just have to look at it as another hurdle and now we can jump even higher than most to get to our dreams. I wish you well as I am right there with you through these changes. Thanks everyone for all your posts and thanks Walk for sharing, Nagual

Thanks for starting this, Walk. No two people are identical and nobody can feel another's 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 “this” and “now”. Thanks to all, Mike

Hey buddy, 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 God's help, but I came out of it. But like you said, it is worse than dying. And it is!! I am just so happy to be alive, albeit, things did change, and I have some medical issues that will probably not go away. Also, I was trying to buy a house before I got sick and the cancer and not being able to work, and I am on a fixed income now, changed that! But now I have to continue paying my landlord's mortgage. But oh well, I have come to terms with it. Like has been said before, it could be worse, I could be living on the streets. Don't worry, be happy.

Hey Walk, in 2013 I was diagnosed with rectal cancer which resulted in a permanent colostomy. Believe me when I say it will get better and you will not think about it. It took my bottom approximately three months to heal. I have been irrigating every day for over a year now and I only wear a small patch over my stoma to protect it from clothing, and I don't have to wear a bag at all. I don't know whether you have a colostomy or ileostomy, but if you have a colostomy you should definitely try irrigating. I guarantee it will change your life. Hang in there and it will definitely get better. Janice

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

Hi Walk, I'm not an ostomate, but my husband is, from CUC. He had his surgery 11 years ago with a shitload 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 undoubtedly 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!

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 your husband doesn't take your advice, many here would probably love to hear what you have to say. For myself....I predate 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 70s 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, and 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

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 inconvenience and I'm 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

Thanks for sharing, LH. Mike.

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

Hi Walk, I asked one of my doctors why this ostomy happened to me and she just said sometimes these things happen. I said, "Did it have anything to do with me not drinking 8 glasses of water a day or me not eating enough fiber?" And she said, "Absolutely not." Also, when I was in the hospital, one of my nurses said diverticulitis (my condition) happens because of stress. From my own point of view, I guess I just need to be more mindful of getting enough fiber, water, and exercise in, including yoga. I hope you find what works best for you and please come and post whatever is on your mind when you need to. We are all here for one another!

Thanks!!!

Hi, Walk Rosiesmom again. I lost my brother who lived in Scotland 4 years 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.

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 diarrhea 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

Hi Beshlie, Rosiesmom here. I wish you the very best outcome for your 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 family 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.

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 years ago due to Crohn's. So at first, I had fistula problems because there was still a little Crohn's 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.

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

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 none 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

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 every day to keep the filter working and it also gives 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

Hello all, I 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, my 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 and 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 the restroom and checked, everything's okay. 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 low-fat/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 the hospital (I can do it all, have it all, be everywhere, do everything) -- suffering with a 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 cup of tears 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.

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.

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.

Hello Cuppatears, irrigation is only possible if you have a colostomy. It does not work with ileostomy. Sorry. Fully understand your frustration and depression. VJ.

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 the 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 others will offer suggestions or support. If you have a colostomy (I don't), I know that some people think irrigation works great. Best regards, Marsha.

Hi all, I am a new member that joined today and am from South Africa. I have a colostomy and serious neuropathy for 8 years now. I 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. My confidence and quality of life have improved by 300% with no more spares to carry around. Life's good, just have a positive outlook!

Hi cuppatears. I envy those who can irrigate. I am happy to hear that others are there to help guide you to irrigating and the results they are having sound fantastic and freeing. I am nearly 5 months post-op ileostomy surgery and still dealing with getting it right. I only wish I had the choice to irrigate. I am not embarrassed to say that I still cry a tear or two nearly every morning. Only for a moment though then slap myself around and face the day. I don't care what anyone says having an ostomy will never be, O.K., but learning to live with it and how we deal with it is a choice we must make to carry on. Like Brenda Elsagher says, if the battle is over then why am I still in uniform? I guess it's this way for many, whether you are an ostomate or not. Our new armor makes us tougher, yet more compassionate, therefore wiser. We were told that wisdom usually comes with age, but how we acquire it is another story. Little did I imagine that not only wisdom came with my growing older but so did my ostomy. I've named it Mt. Vesuvius. Hang in there. Have you ever heard of BCIR? Check it out, it may interest you.

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