Seeking Advice on Accepting Ileostomy

I've had my ileostomy for a year and a half now and feel I haven't accepted or come to terms with it. How would people advise I try to accept it?

Hi there,

I'm 2 years out and I completely understand. Some days I'm accepting that this is the new normal. Other days, I find I am still angry that I have to deal with this for the rest of my life. I mean seriously, I could have had breast cancer and gotten new perky ones? No, I get bladder cancer and get to live with a little uncomfortable urostomy bag attached for the rest of my born days. I do try to find the humor and remind myself that it really does take time to grieve all of this and heal physically as well as emotionally.

Be kind to yourself, this is life changing.

Angela

Hello Chronicbutterfly13.

I think we all can identify with your feelings on this issue and it is tempting to say things like 'give it time'. Unfortunately, sometimes just waiting for things to happen doesn't work and one is then left with the feelings indefinitely.

There is also another factor at play in these situations and that is 'focus'. The more we focus on something, the bigger and more significant it seems to get. This is a psychological/emotional phenomenon which will likely only be resolved by focussing on something else that is more inducing/demanding/interesting/engaging/compelling/distracting etc, than the 'thing' that has become the focus of one's attention.

In my case I took up writing rhyming verse as a pseudo-distraction. I say 'pseudo' because the verses I wrote to begin with were expressing my feelings about the stoma and everything associated with it. This helped me to 'distance' myself from the emotions (which had not gone away) and put them behind me by ecapsulating the feelings in writing. I now write about other things and this has helped me to 'adjust' to having the stoma much more so than if I did not have anything else more demanding to think about.

We all cope with things in life in our own ways and I hope my experiences on this matter will help you to consider focussing on something more positive that might take your mind away from the negativity that is associated with having the stoma.

Best wishes

Bill   

There is always a challenge to new things in our lives -- an ostomy is no different than a scar or birthmark, or whatever. I just thank God daily that I have this opportunity to be healthy. I guess the point is that it is a positive and not a negative. I am just 4 years out and have to say it is a breeze once you get a handle on the process and if anything it has given me new opportunities to meet a whole different challenge head on.

Bill,

Your posts are always so elegant and always a pleasure to read. Well said, sir.

Chronicbutterfly13,

There isn't much for anyone to say to you that you haven't already heard. And each ostomate is unique when it comes to facing our little pouch demons. It's literally a shitty or pissy hand we've all been dealt. I'm going to sound like a broken record here to anyone who has already read my posts, so forgive me in advance.

I'm going on 22 years with an ileostomy now, and I will say that the worst part about the experience was the stay in the hospital after surgery. I was there for 2 weeks, was discharged for 3 days, and had to go back because of an abscess for an additional 2 weeks. It was like prison. But once I was out of the hospital, my outlook was much better as I was no longer rushing to the bathroom, no longer taking an assortment of drugs, and I was pain-free.

The first couple of years were my learning years. My ET nurse had shown me the ropes, and I was off on my own with my new ileostomy friend. I carried around an assortment of wipes, extra precut pouches, a douche bottle to rinse out my pouch, etc...etc... After a month or two, I learned that I didn't need to carry around all that shit with me all the time. I didn't need to rinse out my pouch every time I emptied it. Slowly but surely, I started to feel more and more normal.

The first monumental pouch failure I had was having it on for more than 5 days when it was only meant to be on for 3 and binging on pizza and beer. I woke up to a blowout on the right side of the pouch and a mound of shit right next to me. My girlfriend at the time was more than understanding. She walked me to the bathroom as I sobbed, cursing the universe that I wasn't in control of my body anymore. I stood in the shower for about 10 minutes crying, thinking that my ostomy was the worst thing that ever happened to me, that at 23 my life was over as I previously knew it. I wasn't thinking about how getting the surgery saved my life, I was just thinking this thing on me is a curse, that I felt ugly and no one, not even my girlfriend at the time, will want to touch me ever again, that the blowouts will happen again and again...

It took me a while to get over that. I think it really turned around one day when my roommates were both sick with a stomach virus. We had 2 bathrooms at the time and neither of them could stay off the toilet for more than 5 minutes. I was sitting at my computer and one of them came out of the bathroom and looked at me and said, "Man, I'm kinda jealous that you have a bag and don't have to deal with this shit." I sat there for a second, I smiled and said, "Yeah, it is kind of a blessing, huh?" Promptly after that, he went right back to the bathroom. I kept thinking in my head, "I got no strings to hold me down." Don't ask me why, but that's what popped into my head. Nevermind the fact that I was watching Pinocchio...lol

Now, as I was saying, every ostomate is unique. Some of us are extremely lucky and active and take life on by the horns. Others are debilitated and can no longer work. But even people who don't have an ostomy have the same struggle. I'm sorry if I sound like I'm preaching. I agree with Caligirl and try to find the humor in the situation. We can dwell on it and make ourselves miserable, or we can look forward and try to make the best of it. I keep thinking there are so many more people in this world that are WAY worse off than I am. If my choice is to laugh or cry, I choose to laugh.

Sorry for the long post. I honestly could go on and on. Just remember, we are all here for you, we've been through the ringer just like you.

This too shall pass. When things are bad, remember, it won't always be this way. Take one day at a time.

When things are good, remember, it won't always be this way. Enjoy every great moment.

Bain

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I was never able to accept my ostomy. I had it for 28 months. Fortunately, I was able to have it reversed in Dec. I had tons of people tell me I would accept it. I just think I'm one of those people who does not accept things...So I accepted that instead. I think it's normal not to accept it. :) Eliz

It does take time. You will have good days and not so good days. I have to keep telling myself that as hard as it is... it's a life saver! Hang in there!

I will have had my ostomy two years in March. I spent the first 6 months depressed and feeling sorry for myself. I stayed in the house, afraid of having a leak or thinking people would notice the bag. Slowly, I began to do the activities I used to enjoy. My husband encouraged me to go out. I had a few bad moments, but as time went on, I began to realize that life was too short to worry about what other people think or what may happen. I now work as a teacher assistant and love it. Those who know my situation are discreet and understanding. The only thing I no longer do is go swimming. But I don't miss it. Life is full of opportunities to help others and feel good about yourself. You have only one life to live. Go for it!

Hi Butterfly,

This is the place to come for advice, support, and even to vent. There is no perfect time "to learn to accept" what has happened to you... Bain others have shared their story, and the way they've coped.... but we/ they're all unique. My name is Marsha (now 68) and I've had my ileostomy for more than 5 years... since I was a child of 15. You can do the math. After 4 years of bleeding, hospitalizations, pain, and being out of school... due to Ulcerative Colitis, I had no "real" issue with having an ileostomy. It meant no more pain, no more hospitals, no more rectal exams, and I could finally get back to school. But that was "back in the day" of paper wafers and tacky stick-on bags that didn't stick. It was the day of "permanent" rubber pouches that had to be washed out and reused, and it was a time of "rubber-like cement" and plastic wafers that were "glued" to the skin. Whoops... if you didn't let both dry, you would burn your skin. And that rubber pouch got fastened to the wafer by a metal O-ring that looked like it belonged on a car, not a person. The worst of all was the rubber band that fastened the pouch spout... That would get sticky with glue and then caught up in pubic hair. And we had no stoma therapists or internet to go to for advice. Instead, we spoke to others with ostomies (visiting members) and helped newbies adjust... Doctors didn't know the first thing about management... and to the best of my knowledge, they still don't today.

But all the above does not answer your question. Getting back to school and "real life" did it for me. I eventually married and had two beautiful sons. (Sadly, both have IBD, but haven't needed surgery). It took me years to get over the anger I felt towards my parents for not agreeing to the surgery years earlier. I felt I'd missed out on 4 years of living... while I was sick.

I have to say that I've had a great 40+ years of living with my ostomy. I did everything I ever wanted to do... swimming in the Dead Sea, snorkeling on the Great Barrier Reef, traveled in a single-engine plane (no bathroom), and traveled extensively.

The last 10 years have not been kind to me as I've had a myriad of diseases and debilitating conditions that caused me to take an early retirement... and left me in a financially precarious position. It's easy to be happy when all is going well. It's more of a challenge to stay positive when you age, when you're alone, when you become more debilitated with each new condition. For me, the years I was 12-16 years old were difficult to accept... and now, 68+, is less than wonderful. I never did take health and well-being for granted, but today... looking back, I know that I am a walking talking miracle. I lived, I had my babies, I traveled, I got to do all that my parents and I feared I would never be able to do. So today and every day I find something to be grateful about. My current "ailments" will or won't pass, and I have no control over that. But I try to remain positive and always stop to smell those roses. And then I sneeze. Best Regards, Marsha

Hello Chronicbutterfly13

Great question. I'm considerably older (74) than you but I'll share with you some of my thoughts. I've had my Ileostomy for 12 years now. I was 62 when UC hit me with full impact that put me in the hospital for emergency surgery. Prior to the main event that caused me to be there, I had no indications that my intestines were in bad shape. I had a brief issue with rectal bleeding but my doctor was not concerned. After the surgery, I woke up in ICU where I remained for 96 days. I had passed a blood clot and they were afraid it had gone to my brain. I lay there 96 days fighting for my life and was on a respirator for 90 of those days. After the hospital, I spent 2 months in rehab learning to walk and get my strength back. I had plenty of time to think about what had just happened to me. After I learned to take care of the ostomy appliance, I started working on my mental state of mind on how to deal with this. It does take time to get used to dealing with the ostomy, but given the alternative surgery, I would have died. I'm currently down the road 12 years now and only look at this ostomy as a minor inconvenience to me and my lifestyle. There are a few things I cannot do, but my ostomy doesn't dictate how I live my life. I've always tried to look for the positive side of things and I feel that has helped me get through it all. Yes, I did go through stages of "Why me," etc., etc., but if I was to be happy, I had to deal with it. As you adapt to this, always seek out help and look for encouragement. Starting here asking questions is a great start. I wish you the best in learning to deal with this. I hope you will look for the positives and stay away from the negatives. My biggest frustration was learning when and how to change the appliance. Now that's not even an issue. Good luck. Bob

Hard to believe... but there's a PS... to the above... I may not like the way 68+ looks and feels, but it sure is better than the alternative. Hence, like you're learning to accept the "new you", I'm leaning to accept the "old" aging me. Funny story... Was at the endocrinologist's office today, when a "little old lady, with silver grey hair, wearing a green winter jacket walked in the office"... I stared at her... and she stared at me... Duh? Did I know her, her hair looked familiar. She said "Marsha?", I said "Sandy"... Was it possible that the two of us (friends for more than 40 years) living in the same town, raising our children together, socializing together, didn't recognize each other????? I kid you not... It really happened. Scary thoughts. So we went out to eat.

Hello Chronicbutterfly13

My first surgery was when I was 22 months old. I got a pull thru when I was 5 years old before I started school. Then, 40 years later, I got my bag buddy in 2009. I had a home and a good job, then I lost the job due to not being able to lift the equipment. Then, I had to give up my house that I had for 13 years because SSDI doesn't pay enough to cover the house payment and all the other bills. I used to wear a 4-inch wafer and bag. I had 7 inches of my stoma hanging out of my body. I changed up to 3 times or more a day because it didn't seal well. I leaked every time I did something, whether it was bending over to pick something up or just sitting there doing nothing but getting up from my chair.

So, to cope with this new and fun way of life, I played online games with people from all over the world. I was able to meet new people and had fun chatting with them. I also joined this site back then to learn how others dealt with the bag. For a while, I was able to go to others who had the same problems or similar to mine, and I just read a lot and did some researching. I talked to a few great people on here, some are still here and some have passed. What got me to only check in once in a while is that I can't stand whiners, the "poor me" boohooers. I'm more on the asshole part of dealing with the bag. I didn't have a support group to help other than people on here, then others who didn't understand what I was dealing with or how to cope with the depression that came. All the doctors wanted to do was give me drugs to cover up the problem. So, I found out that talking to others was the best thing because I got to learn how to deal with what my life is going to be like. The bag isn't going to disappear any time soon. We have what we have and have to learn how to deal with what we are given, so you just suck it up and continue with life to the best you can.

When you look at all the relationships you had in life, you got depressed for a time, then you moved on. When a family member or close friend dies, you go through the same feelings and get over it in time, then you continue.

I lived like this for 6 years. The local doctor that gave me my little ass of a friend refused to fix my problem. So, then I was complaining to my VA doctor the whole time. He agreed. He said, "I haven't had any ostomy patients. You're my first." Not too long ago, I almost bled to death through my stoma. I had an internal tear. I lost 2 1/2 pints of blood by the time they got me to the hospital. I spent 2 days in there and then was sent home because I was no longer bleeding. Being a vet, I went to the VA. I had told my doctor what happened to me. He then sent me to the hospital in Salt Lake City, Utah. It took a couple of visits, but then I finally got a revised and relocated stoma. I have been doing way better. I have been able to enjoy the outdoors and enjoy being out with my friends with little to no problems.

Hi, Chronicbutterfly!

I got my colostomy in 2014 and sometimes I wake up and realize that I have a plastic bag stuck to me forever and begin my morning with an "Aaaaaargh!" But there it is anyway.

The reason why people come to this site is because (a) just like you, they sometimes have trouble coping with their ostomy or (b) just like you, they are learning to cope and helping others along the way.

Just having you on the site helps the rest of us feel less "alone" with our ostomies. Thank you for that!

Thank you for this subject as I am having the same trouble. Ileo May 2016

And I thank you all for all your stories and information and hope :) muchly appreciated

Cheers dears

Hi. I've only had my ileostomy since November of '16 and, although terrified when I came out of the anesthesia in the hospital, I've quickly come to appreciate those medical advances available to us. Prior to the surgery, ulcerative colitis ruled my life. I couldn't leave my home without incurring embarrassment from the effects of the disease. And the pain. Terrible. Yesterday, my wife and I enjoyed an evening of theatre (a Broadway production) and then a bite to eat before returning home. And my only "inconvenience" was having to empty my pouch prior to leaving the theatre. Everything has a negative side, or aspect, to it. We can either spend our time focusing on the intrusion of negativity into our lives or appreciate our new-found ability to enjoy the life we have been given. Embrace the good health you have or stand firm to curse the unwanted interruption from "normal." The choice, and resultant life you live, is all you're going to have. So choose wisely. Wishing you all the best - Steve.

Hi Chronicbutterfly,

I can totally empathize with you. I had an emergency surgery 4 years ago to remove my large bowel due to ulcerative colitis. I only found out a week or so before that I even had it.

Anyway, my world was shattered. I hated my stoma, hated myself. My self-confidence was on the floor. I waited for 2 years for a reversal. I pinned so much hope on the reversal, so I could finally look and feel normal again.

Woke up from my reversal op to be told they couldn't reconnect and my stoma was now permanent. To say I was devastated doesn't even come close to how I felt. I put a brave face on for friends and family. I hated my stoma so much.

Anyway, fast forward 18 months or so. I have accepted my situation and moved on. It is part of me now. I would even say I feel mentally stronger than ever.

Don't give up. I promise you will feel better over time and accept the situation.

Good luck and take care.

Drop me a line if you would like to chat or would like more information regarding my experience if you feel it will help..

This forum is very useful. It is full of loads of helpful and friendly people with loads of experience and advice. I don't post a lot but find the posts of others invaluable.

I think it really takes time to get to a point that is normal as apple pie. Eventually, it is so much easier and better than nature in many ways!! There are issues and there are advantages. My grandson still thinks I am lucky I can choose when to go!!

I am 4 years out (on Apr 3) and am truly perfectly happy with it. I have other problems with several organs that are full and partially missing due to pancreatic cancer and FAP.

Try not to worry about it - live and let it do its thing.. when it is full, empty it and go right on about your life ---there is very little you cannot do with a little common sense! I don't have time to let it get in my way. I keep a full schedule and rest as needed.

Wow, what a great response! I really enjoyed reading it. Thank you.

Hello, my name is Dana. I am writing this for my brother Mark. He had emergency surgery for ulcerative colitis about seven months ago. He is supposed to be going for the reversal. We were wondering if you wouldn't mind sharing why they couldn't do the reversal on you?

I knew going in that I was not a candidate for reversal. I had so much involved that I had a Whipple and an ileostomy all in the same surgery and have been written up and still supply data for FAP.

My niece and others that have FAP can get the reversal; however, it is a matter of time before more of the digestive system is compromised. With UC, it is different as it does not necessarily involve the other organs. It is sort of a once and done conquering surgery....but I have a very dear friend with it and they cut and removed the bar areas a number of times and eventually she had to have a bag because there was nothing left to attach to.... Another friend is waiting to be healthy enough for the surgery ... that is a temporary bag then a proper hook-up when the healing is proper. Everyone I know personally comes out of surgery just praising the lack of pain. Living with a bag is a bit of mind over matter but on the other side, I think the other issues can be frustrating - depending on the individual body/tissue/organ reaction. You really should seek out the comments and replies that attest specifically to UC issues. There are loads over the years that are on this site.

Sending my best wishes -- and think positive - attitude really in truly makes a difference in the entire outcome.

Have had my ileostomy for 65 years. I would be a liar if I said I was okay with it. To this day I wish I didn't have it, but then at the time I would have died without the surgery, so I'm glad to be alive. I have led a good life, have kids and grandkids, held good jobs.

Now that I'm on the tail end of life, I think about medical issues I may face. It's nice to know I won't have messy diapers for someone else to clean up (ha!)

I accept it because it is what it is.....I don't like it but I bling out my bag because I am a girly girl and I want to feel good about myself.....I buy intimacy garments from a site called Ostomy Secrets........I make the best of a bad situation.........At least I am a good person......Only with 5 feet of missing colon.........I am more whole than some people with all of their body parts.....