Coping with Permanent Ostomy: Seeking Support and Understanding

I'm really on the edge as I found out more bad news. I don't know what to do. No one seems to understand what I'm going through. I'm sure whoever, if anyone, is reading this will. I can't get a reversal. Maybe this isn't a big deal, maybe it is, but I have not come to terms with it at all. Anyways, just a shot in the dark posting here. Anyone else receive similar news and were crushed?

Hey Dasey, what happened to your profile? I heard someone hacked it. And I didn't get that type of news, but other news and more stuff to go through after what I just got done going through the past couple of months.

Hello Daisy

Look around here, some people chose not to get a reversal. Honestly, it sets better with time. Look at all the people here who have given them cute names! Take a deep breath— it will be okay!

Hey Daisy, we did think your account got hacked... getting messages that didn't sound like you then responses not lining up. Would love to get back in touch once I know your account is good.

A reversal was never an option for me so I would be lying if I said I know how you feel but can understand you must be upset. I'm sure other members will be along shortly that have been through the same as you.

Hi Daisy, if you went into this thinking it was only temporary, I can imagine it would be a big shock to find out this will be your reality forever. A lot to get your head around and find acceptance. I had no expectations either way when I had my initial surgery, as I had a perforated bowel and needed emergency surgery. I later was told that I could have a reversal, but it was not something my surgeon pushed for at all, and after doing my own research, I decided against it. Too many risks and a high chance of a poor outcome. I decided that I'm happy with the quality of life I have now and would not take a chance on a reversal. I see you have an ileostomy like me. I hope your surgeon discussed potential outcomes with you. People with colostomies have a much higher likelihood of successful reversals. People with ileostomies, not so much. I'm not sure this will make you feel any better, but you might be saving yourself a lot of grief by not having a reversal. Finding it in yourself to accept your new reality might take time, but you will get there, and there are lots of people here to help with support and empathy. Hang in there.

Terry

Hey... I'm not sure what happened to my account, if anything. I know my profile pic was deleted (seemed to disappear), so I updated it today! I used new pics though. I don't think I was hacked, but I'll change my password just in case.

I'm so sorry to hear you had more news too. I know you've been through a lot. It just gets overwhelming when you try so hard to do your best to be healthy, and it's one thing after another. I hope you're okay and will continue to heal.

Thank you for the words of encouragement. Not sure I'll give it a cute name, but I'll give that some thought. I'm hoping time helps but it's depressing to know this is my new normal even though I'm told I'll be healthier and people tell me that all the time that I look better since I got my ileostomy. Did you name yours?

I'm so sorry everyone thought my account was hacked. I would have deleted me too if I seemed to be a bot or someone else. I think my messages seemed weird because I've gone back to work and didn't have time to reply properly. Weird, right? Just been working a lot and didn't have as much time for the site. I missed it though! I love this website.

I know that's not an option for many so I feel bad even complaining. I can't get one. I wasn't as upset at first, but I think it just didn't set in..... Thanks for the response.

I did go into this thinking it was me having a reversal was going to be the end result. They were about to take me into emergency surgery and I almost didn't take it. I was traumatized from having one all through my adolescence and thought I couldn't bear to go through it again. The doctor before the surgery literally promised me I would be having one. Once I was passed off to the next doctor, he said there was no possibility. I took it well until time passed. Having already had a reversal, I realize now how lucky I was to have my J-pouch for as long as I did. Your message definitely does make me feel better. If I knew my reversal would be a failure, I'm not sure I wouldn't still choose it. That's half my depression talking too though. I do know my ostomy saved my life, but sometimes I forget that and hate it anyways. Lol. I'll hang in there. Thanks for your message!

Hi Daisy

I had to go back to a stoma as the pouch/reversal was a disaster. It was a tough decision but I haven't looked back.

Axl

Would be a tough decision. I guess I'm glad partly that I have no choice because I would choose to get it. I know I would. How long did it last?

Hi Daisy, my oldest brother had colon cancer and had a temporary colostomy. After 6 months, he had it reversed but now has to take as many as 10 Imodiums a day to control diarrhea. He tells me he wished he never had the reversal. He's retired now so he doesn't have to go to work and deal with those issues. He tells me he wished he kept the pouch even though he hated it.

If it turned out worse, I can't imagine. I probably would want to get my ostomy back if I was taking that much to get through the day. I had to use the washroom so frequently when I had my J-pouch. Work is hard enough now; I couldn't imagine having to go to the washroom more! It's still disappointing, but all the comments are helping so thank you for sharing.

I put up with it for 12 months taking a rotating cocktail of antibiotics hoping it would sort itself out but it didn't, couldn't stand it anymore and went back to the ileo.

I can't get a reversal either. I waited for that surgery for months. It was on the books for March 30 of this year. On March 5, I met with the surgeon and she said a reversal wasn't possible. It was not good news. I am learning that it isn't the end of the world though. There are some good things about having a permanent ostomy. For one, you are alive!

Lee

Daisy, anyone would be upset if they expected something and then were told it wasn't going to happen. May my cr*ppy story make you feel better. I have an ileo and so was not slated for the optimal outcome (Terry mentioned the ileo outcome and she's right.) I gave my j-pouch five years and couldn't take it anymore, the pain, the meds, the uncertainty. I know it's a shot in the dark because you're still feeling so upset but maybe, just maybe, you dodged a bullet. Once you get through feeling what you need to feel now, you'll reach the next phase soon and feel more at peace. You'll start to consider everything related to your experience, not just the disappointment. Just talk it out and give yourself time.

Thank you for your reply. I'm trying to accept it and you are probably right. I did dodge a bullet just after having one for 30 years around. I had no idea people had so much trouble with them. I do remember my surgeon as a teen telling me it had a 50-50 chance of working. Not sure what the odds actually are, just that always stood out to me. I think I did have J-pouch problems, but they were my normal since I was so young when I got it. I forget that they won't all work out.

Yes, this is awful. I'm sorry for you having to go through that! The girl in the bed next to me in the hospital the last time I was in was back to get her ostomy back. So many surgeries, it's scary.

Yes, it's very crushing to hear that news when they already told you it was going to be possible. That is what happened to me as well. I think that makes it sting a bit more but yes, it's great to be alive!

Hey Daisy, I know how you feel. I was told I could be reversed, but when the time came to discuss it, I was told I couldn't because I was still on TPN and she wanted me to be healthy again before she would do another surgery. (I flatlined the first time) Then once I got off of it, I went into kidney failure and wound up getting MAC Lung Disease last year. THEN after multiple ERCPS finding out I had fluid in my abdomen and a narrow bile duct which needed a stent and now I'm doing this for the 4th time in September and was told my pancreatic duct is inflamed and I have chronic pancreatitis and have to be monitored for pancreatic cancer and am starting to lose weight again after being steady for the last year..... My reversal is NOW a no-go. So with all that being said, I look at it this way... Reversals are no guarantee and I'd rather keep it than reverse it and have to do yet another surgery and after 3 years it's just become the norm for me. Would I like to just sit down and go..of course, but it's not going to happen and it's not the end of the world and I'm still alive so that's a plus! And talking helps to relieve some of the depression behind it and it's okay NOT to feel OK at times about what we have to go through day to day that most people don't!

Hi Daisy, a reversal was never an option for me. But I do know how I felt when I found that out. Pretty devastated. It did take a while to get my head around it and accept it as my 'new reality'. Sending loads of positive vibes your way.

Daisy,

I had an ileostomy in 2007. Hated it. Got it reversed after a year. Fast forward. 2020 I got rectal cancer. Had radiation and chemo. After a year, I was cancer free. Now, because of the damage done to my rectum by the radiation, I'm having permanent ostomy surgery. Feel kinda like you do. I know it'll make my life better, but still wrapping my head around it. I know it gets better, and I think we can do this together!!

Hi Daisy

I'm sorry this news is so crushing to you. Yes, when I originally received my news, it crushed me too. That was 50 years ago. I was 20 years old and newly married. I cried for days. Fortunately, my husband loved me and helped me accept it. Eventually, that marriage ended but not because of the ostomy. I dated and remarried a wonderful man. I have lived a very good life in the past 50 years that I wouldn't have lived otherwise. I traveled to Europe, Alaska, and Canada. I worked at a very busy hectic job that also had me traveling everywhere. I realized that the ostomy was a part of my life just like any other part of my body. I did not let the ostomy be my sole life or control my life.

I pray that you can accept the ostomy and live a good life as I have.

Kind Regards

Connie

You'll be fine, I was devastated when they told me about mine. I have come to grips with it because it beats being in a grave. I do everything I used to but I just have to take extra care not to overdo it or hurt myself.
It's a way of life and life isn't over, it's actually a new beginning. My wife is 100% okay with it and it doesn't affect our relationship at all.

Daisy, it is a tremendous adjustment....the ongoing care required, the body image change, dietary/nutrition questions, the concerns about how to dress to disguise the bulge. I am three years in all of the above still vexes me. Coming here knowing I am not alone, that others are coping successfully is very helpful. I try to remember to be grateful to God that I am alive. I am still dealing with anxiety/PTSD/depression issues related to a long complicated surgeries recovery, including rehab for atrophy of muscles. So easy--it's not! Time has a healing power. Hang in there! There are better times ahead. Best wishes! Sunny

Hang in there Daisy. There are over a million of us. Mayo left my terminal colon, for a hookup. After 16 months, the disease kept exuding pus. I asked them to remove it. Daily bleach enemas were miserable. Hey, we are ALIVE, living our lives to the best of our abilities. And I'm grateful for that.

It will take time getting used to it. I had colon cancer: resection, chemo, radiation. Thought all was going pretty well, but radiation damage caused a sore that wouldn't heal, and finally perforated. Cue the ostomy, with the notation that he expected to reverse in 6-12 months once that area would finally heal. Except, of course, it never would heal (to this day, 8 years later, still get bloody discharge from what's left of my colon). Although never explicitly discussed, I came to the conclusion no reversal would ever be possible after 2 years of it not healing. That actually gave me the time to come to terms with it gradually, so now I really don't even think about it much. Just another thing on "graceful aging" to-do list: try to exercise every day, get glasses to help my eyesight, think about a hearing aid, make sure I always have sufficient ostomy supplies.

People say be grateful, think of the advantages vs disadvantages, etc. That helps, but really, coming to terms with a permanent ostomy is an emotional, not rational thing. So all I can really say is, do things to raise your spirits, don't obsess, and eventually acceptance comes. It's really only when you look back that you realize how far you have come. Chin up, virtual hugs, and keep going!

O.K....now I'm getting concerned. I have a temp ileostomy and am waiting on a reversal (at 6 months now). I would have thought the reversal to be the easy surgery. I had rectal cancer and the area was excised with clean borders and cured. No other cancer/lymph node involvement. Reading these posts I'm getting scared. I don't want another surgery if it won't be successful...in fact the surgeon never mentioned any concerns for a reversal. The initial surgery knocked me for a loop (first major surgery at 62 yrs of age). I guess the good part is that the whole thing isn't as bad as I thought it was going to be...I never wanted a bag AT ALL, so I will ask my surgeon the pros/cons. If I had to have this forever, it wouldn't be the worst thing.