Considering Not Having Reversal Surgery After Operation

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805
Dmyrick55
May 06, 2024 7:23 pm

Hi. I had my operation in February and am tentatively scheduled for reversal in August or September. Am considering not having the reversal surgery. I'm 68. Any thoughts?

Justbreathe
May 06, 2024 7:40 pm

Yes, many thoughts - but mostly questions

Type of ostomy?
Reason for ostomy?
Amount of time they (docs) tell you for recovery?
Confidence in gastroenterologist, surgeons, etc.?
Your willingness to accept changes/issues to your desired outcome?
Time researched?
Just to mention a few… jb

Posted by: Karen & Stella
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Dmyrick55
May 06, 2024 8:32 pm

Colostomy, diverticulitis with perforations, peritonitis, abscess sacs in the abdominal cavity.

Great confidence in the surgeon.

Just starting to think. Possible reversal set for August or September. DM

aTraveler
May 06, 2024 9:12 pm

The following link has ideas on reversal considerations:

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=31833#244745

Justbreathe
May 07, 2024 12:55 am

Dmyrick55 - Glad to hear you are just starting to think about a possible reversal… there are many “experiences” shared on this site and you have definitely come to the right place for research. Many here have different opinions and experiences, both good and bad - and I am guessing there are many successes that are never again heard from on this forum.

The final decision is solely on you - read up, learn, and be sure your final decision is yours and yours alone… use your own good judgment… I too was torn as to what to do (3-1/2 years ago). The folks on this site have “lived this decision” and that information was very helpful. My family and friends (all non-ostomates) shared their feelings and all were helpful and appreciated, but the final decision, I realized, and the reasons why I chose not to be reversed were totally up to me.
Best wishes… jb

 

My Ostomy Journey: Bruce | Hollister

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IGGIE
May 07, 2024 2:46 pm

G-Day Dmyric, It's up to you, but I can tell you my story. I had my colon removed in 2004, and for 18 years I had lots of problems, always looking for a toilet, and the feeling of wanting to go was painful up to 10 times a day. But after 18 years, I told my surgeon to get rid of it, and I have had my stoma and my butt stitched up now for 3 years, and I love my stoma and wish I had done it years ago. But that's me, it's up to you now. Regards, IGGIE

DexieB
May 07, 2024 2:51 pm

Hello - I had a colostomy for 8 months due to perforation of my sigmoid colon during a biopsy. Had peritonitis, sepsis, emergency Hartmann's procedure, and other complications during my 21-day hospital stay.

My surgeon felt comfortable doing my reversal (including fixing the large hernia I had under my colostomy) after 8 months - he said 6 months was the very minimum I needed to wait, but he waited a few extra months to let me heal more due to my serious infections. I had just turned 51 when my ordeal began. I had great confidence in him since he had saved my life once under the worst of circumstances.

I had my reversal January 30th of this year and it went great - my bathroom habits were quickly back on track with how they were pre-colostomy. I had hesitated to do the reversal because of all I had been through and also hearing some bad stories about reversals - but my surgeon was confident that I was a good candidate, and I felt it was right. I also had a friend my age whose mom had just been through a similar ordeal and had a reversal at the same time I got my colostomy. Her reversal went great - so hearing her story gave me faith.

You have time to think about the pros and cons, and hear others' stories - as JB said, it is your choice. I know there are some that don't turn out well, but I wanted to do it because I didn't want to always be wondering "what if things went great." I was okay with the colostomy, but I really hated the hernia - so that was a big factor for me. Of course, I had some pain during my recovery, but doctors had been telling me all along it would be easier than my first surgery... and it was. The pain was very manageable next to what I had been through. I am not trying to sway your decision one way or another... this was just my experience, it is totally your choice! I'm sure you will do what is right for you. Best of luck!

Ben38
May 07, 2024 3:09 pm

Take your time making your decision. There's no rush. You can phone your doctor and tell them what you're thinking and want to postpone your reversal surgery until you're sure in your own mind what you want. A reversal was never an option for me, but I did have the option of having a J-pouch. It took me some time, but I decided it wasn't for me. I never had any regrets about keeping my ileostomy.

Dmyrick55
May 08, 2024 12:49 pm

Thanks, Iggie. Appreciate your feedback. Glad things are going well.

Dmyrick55
May 08, 2024 12:52 pm

Thank you, DexieB. I am glad to hear that yours went well! Thanks for responding. I have lots of thinking to do.

Dmyrick55
May 08, 2024 12:56 pm

Thanks, Ben38. You are right... I can breathe, take time to make a decision, and do what I feel is right for me. Glad to know that I am not crazy for possibly deciding to keep what I have now.

Dmyrick55
May 08, 2024 12:59 pm

Thank you, Justbreathe. I have breached the subject with a couple of family members with mixed reactions, but you are right... it has to be my decision in the end. I appreciate your feedback, and if you think of anything else I might want to know or consider, please send it.

Dmyrick55
May 08, 2024 1:00 pm

Thanks, Travelers. I will check that out.

DexieB
May 09, 2024 2:16 pm

There are also lots of stories on Reddit of people's reversal experiences - a good place to get info!

cheryl5252
Aug 19, 2024 4:57 pm

Hello,
I had an ileostomy because of the same reasons as you (April 25th).

I had my reversal done on August 6th. I read many stories and found that there are very few positive ones, which made me question my reversal also.
I am almost two weeks post-reversal and am doing well. I only spent two days in the hospital and was sent home. I had my first post-op follow-up appointment and all is going well so far.
What I have learned is that we are all here because of different reasons and every body heals and deals differently. I was excited and nervous but am glad I went forward with my reversal decision. My surgeon is wonderful and I am fortunate to not have any other health issues.

I wish you the best of luck in whatever decision you decide, but I just felt it was important to post that there are also positive results in a reversal 😊