Deciding to Keep My Colostomy: My Personal Journey

The most difficult decision I have ever made! I have a colostomy resulting from diverticulitis with bowel perforation and removal of 15 cm of sigmoid colon in Oct 2024. As a nurse, I feel I have had a bit of an advantage in accepting the colostomy compared to others who probably have never even seen a colostomy before. It's a shocking and traumatic experience for most. Initially, it was part of my driving force knowing reversal was possible and the colostomy was "temporary" while my colon healed. I have struggled so much with this decision to reverse or stay the course. The truth is it's a highly individualized decision. After extensive research and much deliberation, I have finally reached a decision I feel good about. For me, I feel keeping the colostomy in place will allow me more freedom to not only live but thrive. I personally do not wish to spend my life in the bathroom and/or the hospital. The bottom line is I will never be "normal" again whether or not I have a reversal. The cons far outweigh the pros of reversal for me; therefore, I have recently decided to keep the colostomy. I know this may not be the ideal course for others, but for me, it's simply not worth the risk to reverse at this time. My decision was solely based on my healthiest outcome versus "cosmetic" appearance. I hope to help others who may be struggling with this decision to do what's best for you. There is no right or wrong answer here. Hope this helps.

Thanks for sharing. I think it will help others. My ostomies are both permanent. I think I would not reverse if I could, but that's easy to say when I have no choice.

I'm still deciding, and a big part of my decision is whether I will be able to have “normal” bowel control after the reversal. My surgeon checked my muscle control and said it was good, then gave me an enema to ‘try out' to see if I could hold it, how much I could hold, and how long I could hold it. I am also doing PT to strengthen my innards and be more mobile with better balance, while also working at losing weight so the surgery would be easier for both my surgeon and me. I still have the hernia surgery referral to complete, as I have a 6-inch hernia on my midline as well as a parastomal hernia. My colorectal surgeon said that if she tried to do the reversal laparoscopically, the hernia might hinder her vision, and she would have to cut down my midline again. Bummer. But then she also said that the hernia repair person might want the reversal done before they do the hernia repair, as the ostomy is its own little hernia too. It's a juggling act. I haven't tried the enema yet either; I kind of ‘forgot' about that little test…

Made the same decision. After 30 plus years with Crohn's disease, this isn't so bad. Not having to run to a bathroom is a blessing!

Now if I had better intestines that didn't have considerable scarring, yes, I might give it a try.

So it comes down to viable intestines with a proven surgeon equals great success!

So simple!😎

Your post may help others who are struggling with this decision, so thanks. I made the same decision myself. My ileostomy is reversible, but after doing the research and looking at all the pros and cons, I'm happy to stay with the status quo. Better the devil you know.

Terry

My Ostomy Journey: Jearlean | Hollister

You mentioned reasonable causes. I made the same decision since, besides your reasons, after every surgery, the possibility of adhesion of internal organs rises dramatically.

So I chose not to make more issues for myself.

Thanks for bringing up this subject.

Congratulations to you on your brave decision. I am sure it wasn't taken lightly but will act as information and advice for others who may be traversing the same fine line.

Wishing you all the very best for your continued recovery and journey.

Mrs_Eff

Great post. I think it will help many others make the decision about reversal that is best for them.

I was just thinking about this as I'm healing from the colostomy surgery. I think it's more of a hesitancy about being in the hospital because the surgery itself was fine. I'm not quite sure what I'll choose to do yet, but I have months to choose. Like many others, I am appreciating being able to let my tummy release whenever it needs to; it feels like such a relief.

Great topic! I think sometimes it depends on why you have an ostomy... mine was due to a perforation from a botched biopsy. I had my colostomy reversed, and it went great - no issues or regrets... but I also had a fantastic surgeon I trusted (NOT the one who caused the perforation) and no health issues prior. I still thought long and hard about reversal, but in my case, it was the right choice for me - yet I know there are others whose lives are made much easier with an ostomy. Thanks for sharing your feelings on this!

I have done a lot of thinking about whether or not to reverse my ileostomy. At this point, I'm heavily leaning towards not reversing.

Hiya, Slady, good on you, girl. This is the first time I have ever written or responded to a post. I had my colostomy in 2012 for the same reason: diverticulitis. Initially, I thought my life was over, having to walk around with a bag on my stomach, but I remember the pain and discomfort I experienced with every flare-up and did not want to go through that again. A year in, I was pain-free. I started to think about having the reversal, and it terrified me. I guess that was it, the decision was made: I was not going ahead with the reversal. Having my stoma saved my life, and I've never looked back. I am 62 and still go on holiday with the girls, swim—well, not really swim; I paddled. I go to the spa and sauna, do everything I used to do. Enjoying life without the pain and discomfort, my stoma and I.

Your story could be my own. I also had diverticulitis with bowel obstruction and perforation and removal of part of my colon. My life-saving surgery occurred in 2017. I was scheduled to have a reversal in January of 2018, but because of heart issues, my doctor wanted me to get clearance from my cardiologist. Tests were scheduled, taken, and more tests were scheduled. Finally, after three months, I was given the green light. Little did I know that during this interim, my surgeon retired and I would need to find another doctor. I felt so defeated because of all the delays.

However, it did give me time to really think about my decision to have a reversal, and so I did some research. I read everything I could find, pros and cons. I even spoke to two people who had reversals to find out how they were doing. One was a success, one was a failure.

I finally decided to keep everything as is, despite urging from my daughter, husband, and, yes, even my primary care provider. I have not, for one moment, regretted my decision. Sure, I have some days that are not too pleasant, but I would have them regardless. In some ways, having a bag provides me with security that I would not have if I had gone through with the reversal.

There are no wrong answers. No one knows what the future will bring. Everyone needs to make their own decision. I did, and I have no regrets.

I also had a bad case of diverticulitis and part of my sigmoid colon removed. That was in 2022. My stoma "Rosie" is doing very well. My husband helps me change my pouch, and we always talk to Rosie; sometimes she responds! I take showers without a bag, and we both love it! Sometimes there might be a little accident, but most times all goes right. I had one side explosion once, but at home, so it worked out well. I am keeping Rosie, although some days I get depressed, and then I remember what my doctor told me. "There are millions of peeps out there with the same issue. Since we only have one bathroom in our house, there is no problem. We also laugh a lot. That really helps!

I too have decided not to have a reversal surgery. After the discussion with the surgeon, life after reversal didn't sound like something I wanted to do. My son calls this "my new normal."

Just returned from a trip to Las Vegas, I have been on 2 cruises, heading out to sea again next month, and flew to many places in the past 18 months. I am learning what to do and not do. It is okay. I am in control! After 2 1/2 years of surgery after surgery due to complications (15 surgeries in all), I am doing great. No reversal, keep traveling. Thank you for all your comments.

I had colorectal cancer. First, I had an ileostomy. After healing, I chose to have a permanent colostomy. I've heard too many unpleasant stories of getting a reversal and didn't want to live in the bathroom not being able to have control. I have no regrets. Of course, depending on one's situation, you might be able to get a reversal and have control. I still have quite a bit of pain. I'm still mostly enjoying life. I pray the best for you all.

Hello,

Thanks for your message and for talking about your choice. Circumstances surrounding my getting the colostomy are complicated, so I'm not going there. I lost my nursing career, and my life changed. I was on disability until I retired. I have had my colostomy now for about 7 years, I think. I had always thought I would get it reversed, but eventually got, at least, somewhat comfortable with it. I had finally come to the idea that I was so afraid of the pain and disability of the original operation that it wasn't worth it to risk the reversal. My concerns have been that the stoma itself has enlarged by several centimeters, and so has the large hernia beneath/under it. It doesn't hurt, but it's very uncomfortable and has been very challenging over the years. It's difficult to make bags stick, etc. Well, I recently saw my original surgeon, and he says it has indeed grown larger and will likely continue to do so. I'm 67 now, figuring I still have a few years left, and I have decided to go through with the reversal. My surgeon is a specialist; he says it can be done; the colon just has to be healthy enough. He will put some mesh in to hold back the herniated area. I have done all the pretesting and am now waiting on the surgeon's schedule; it could be weeks or many months away. I will feel so different! I am a bit frightened, scared of the pain mostly. My last recovery was miserable. (This is my second one.)

Mostly wanted to say, I respect your decision to maintain! It's a tough one!

I wish my choice was not complicated by this expanding hernia. As I said, I was getting okay with it... (yeah, after all these years)... hahah.

Well, SLADY, I wish you the best. Thank you for sharing your story. It's the first one that has inspired me to write in.

Thank you, all colomates! I appreciate your stories.

I can't begin to tell you what a boost your post gave me! Thank you.

Facing the same decision, no guarantees of a good situation post-op, disinterest in enduring another surgery and recovery, but, most critically, giving up precious living time to deal with the entirety of the situation, I too think I have decided to keep Winnie and just go on with my life. Importantly, I feel in complete control with Winnie, and no one could promise me control over anything without her.

Some among my family and friends are incredulous, some of my medical professionals might be wondering what in the world I am doing, but for the most part, everyone has simply accepted what I am thinking and what I am planning. Their frequent comment is, "It's your life!"

I've had Winnie for 14 months now after surgery due to rectal cancer. She was supposed to be temporary. Surgery has been scheduled twice, and then I unscheduled it twice. Now I'm at the point that if I want to consider it, I can call the surgeon and set it up. (His office isn't calling me anymore 😆) But, I'm thinking I never will. I am very comfortable with Winnie, my chosen products are working extremely well for me, there isn't anything that I can't do. I swim, soak in my hot tub, travel, go wherever I want, garden extensively, sleep well, walk miles on the beach, and share my life with a wonderful husband, four offspring, two daughters-in-law, five granddaughters, two great grandsons, a stepdaughter, three step granddaughters, and five step great grandsons. How could I possibly ask for more than that? Thinking about surgery feels like a huge interruption to a wonderful life.

So I am very grateful for your post. It was so validating to read your thoughts. I completely understand your decision. I know many out there would not come to the same decision we have reached, but each of us has our own path to follow.

Have a wonderful life!

Thank you, everyone, for sharing your thoughts and stories. I am truly grateful. I was really thinking the world is going to think I am crazy. Why would I choose to keep a colostomy?

The truth is I am choosing my healthiest option for my best quality of life. That just so happens to include a colostomy.

It has been a rollercoaster of emotion. I feel a tremendous weight lifted off my shoulders, so I know for me, I have made the right decision. I am still me. I just happen to have a colostomy. I am feeling great, healthy, and stronger each day. This colostomy doesn't define me. It is simply a part of me that has changed a bit. I still have fear of what may come, but I am learning to embrace each day and adjust to the life I still have to live. I am choosing to focus on what I do have rather than what I don't.

Thanks again, everyone. I finally feel peace for the first time since this journey began.

I have developed a large hernia that needs surgical intervention. (No one ever told me that this was a probability!)

My abdomen actually looks lopsided, and I am very self-conscious about it. Wearing long tops and tunics does not mask the disfigurement. It has really affected my self-esteem and my social life.

My surgeon will be performing the hernia repair robotically and mentioned that he could also do a reversal at the same time. But if I were to go ahead with the reversal, he would have to do both using the original incision. He was kind of surprised when I said “No thanks” regarding the reversal. At my age (70+), I don't think I could go through all of that again.

I will be seeing him on Thursday and, I presume, we'll be talking pre-op testing and scheduling the surgery.

I wish you the best of luck with your surgery and prayers for a speedy recovery!

Thank you, Dahlia.

I am stuck with a feeling of not getting a reversal anytime soon since I keep being in and out of the hospital every second for different issues. I was supposed to get a reversal at three months; now I am six months in with an ileostomy and no reversal until I get better. Or the surgeon wants to do a permanent colostomy.

Micky, I had a choice and I picked the ostomy. That was my biggest fear when getting sick. As years went by, I chose to get the colostomy. It was a lot less painful option for me. That's just me. You will know what to do when the time comes. Your doctor has some answers; you will have the best. Good luck.

Hi Valchartrand58, I was also scared of the pain of reversal, but all the doctors and nurses had told me it would be much easier than my ostomy surgery - and it was. 2 days vs. 21 days in the hospital - honestly, it was like a walk in the park having a robotic reversal next to what I had done originally (open). My sigmoid was removed, but I've had no issues with reversal, knock on wood! I also had a hernia that was fixed during my reversal. Best to you no matter what you decide to do :)

Thank you for starting this thread.

I've only just read through it.

I had to have emergency surgery in February this year after a really bad case of colitis that turned into ischemic colitis.

Both the consultant and the surgeon told me to prepare myself for it to be permanent as my entire large bowel had been removed.

So for the last 9 months, I've been trying to get my head around that notion.

Yesterday was my first post-op appointment. Very nice chap, very helpful, but he shocked both myself and my o.h. who was with me when he said it might be possible to reverse the operation. 😲😲😲

My glee was short-lived after he told me that I would likely be going to the toilet 5-8 times a day and that it would basically be diarrhea.

I decided straight away to stay as I am...

After I told him that, he said, "Well, I couldn't influence your decision, but now you have decided, I think you've made the right choice."

This is a very good thread. I know it goes back a couple of months, but there is some great info here.

Thanks again.

Tony