Navigating Ostomies and Surgeries with a Partner

As the vows go "In sickness and in health," and being married for 49 years and having an ostomy for 38 of them, my wife has been there for me. When I first got my ostomy, my wife didn't know how to drive, so she learned how to do that and got her license while I was recuperating. The funny part was our car was a manual shift, and the clutch got worn out, so we had to resort to using an old '68 Chevy wood hauler pickup truck that was manual shift also but different than the car, as it was shift on the column, not on the floor. My oldest daughter also learned to drive in that old truck.

Great quote from your wife.

Haha

I have been with my partner for 29 years. He is my soul mate and rock. He was amazing when I had my surgery as I nearly died. It scared him a bit. I have always had an illness, severe IBS, and cyclical vomiting syndrome, so that started after our second child 23 years ago. So, he has always been there for me. It was me that was bothered about my bag afterwards more than him. It took a while, but I got over it and got on with life. Still recovering as only 5 months in with stoma and ileostomy. Yeah, I have two. I think that's what did me more than anything. I didn't know what I was ending up with till after I woke from surgery, but the main thing is it saved my life. I feel for those who don't get the support. It's hard enough as it is.

I had my 1st surgery in Jan 2010. Since then, maybe a handful of times playing. But she also had a hysterectomy 2 years later. I've had 21 surgeries in the past 13 years and I never felt better, but I miss alone time! Lol I don't think we'll ever get back to being intimate, but that's ok. I do miss the make out sessions! We're more friends than married. We've been together 23 years and I can't see anyone else who'd put up with my crap....

I had my 1st surgery in Jan 2010. Since then, maybe a handful of times playing. But she also had a hysterectomy 2 years later. I've had 21 surgeries in the past 13 years and I never felt better, but I miss alone time! Lol I don't think we'll ever get back to being intimate, but that's ok. I do miss the make out sessions! We're more friends than married. We've been together 23 years and I can't see anyone else who'd put up with my crap....

Not necessarily all because of my ostomy but she left me before I was fully recovered.

I've had my ileostomy for 18 years. My husband and high school sweetheart at the time, kissed me before I went under to have my total proctocolectomy. The next day after surgery, he came to visit me at the hospital and told me he wanted a divorce.... His loss!

Well, as I promised Terry, I wouldn't sugarcoat my response. Without being too dramatic, the words from a song sum up mine and my husband's experience..."when everything falls apart". To be fair, we walked into surgery #1 for me with a lot of baggage. We had lost a good friend, mom to 5 young children, to a brain aneurysm a few months before finding out I'd be saying goodbye to my colon. Then between my birthday and Mother's Day last year we realized we needed to interrupt our adoption of a little boy from Colombia, not because of my health, but some paperwork had been withheld from us till the last minute right before his visa was supposed to be issued, and that brought to light some insurmountable issues for us. We both grieved but very differently. My husband has had to watch or hear about me almost dying 3 times...the 1st during a pregnancy and the 2nd right after our son was born. He didn't talk about those 2 times for 5 years. Any time I go under anesthesia that triggers him. As my condition declined before the surgery he started unraveling emotionally and I didn't know what to do. He decided we needed to go on vacation and get away from it all, except I couldn't. I was pretty much hydrating and sleeping at that point and meeting with the psychologist virtually-her goal at that point was to get me to the surgery and then help me deal after. I told my husband he and the kids could go. My kids said they didn't want to leave me. His downward spiral continued. I think it's hard for 2 people that are falling apart themselves to find a way to hold onto each other. Thankfully, it was evident to his bosses and co-workers and he started seeing his own counselor. He is always very body positive/affirming. He made sure to be there when he knew the WOC nurses would be there so he could learn to help with bag changes. Drove me to so many WOC nurse appointments. Months later, I was not doing well from an ileus after the 2nd surgery and they said they needed to place an NG tube, he called someone he knew that had one and said "talk me through how to be there for Jodie". I'm definitely not the same person he married almost 17 years ago, and I told him when I came home I needed the freedom to be me...however that looks now. I'm still processing changes in myself from the past year. As my energy is coming back and the hyper component of my adhd is kicking up it drives him a little crazy because I just have so many good ideas. He told me the other week he misses my stoma. I texted him after a test I had done last week saying I threw up a lot, it sucked, so I was stopping on the way home to adopt a puppy. His response was "I'm so glad I married you". I think we're coming out of a tough season and figuring out how this new one will look together.

Sorry.

I'm really sorry to hear how that went down. You're right, his loss for sure.

Is your ileostomy due to cyclic vomiting syndrome?

I have been married 3 times but they all accepted my ostomy. We are no different from anyone else except for a pouch. If you talk to your potential boyfriend or girlfriend, it may come as a shock to them at first, but they should surely understand. I ended up divorcing all 3. The first one, 19 years, cheated on me. The second one, 7 years, had rotten destructive children and if it weren't for me, they would be in jail. The third, 5 years, was real flirty and also cheated on me. I have been self-sufficient from the age of 8, and I am happy living the single life again. I do think there is a woman out there somewhere who is none of the above, but only time will tell.

Well, ostomies are the best "jerk-detectors" so you're definitely better off without that jerk!

Well, my wife of 33 years decided to find someone else after I was diagnosed with cancer but before my surgery. She said she had 20-30 good years left in her and I was sick, and her new guy was not, so she left. Guess she didn't handle it well!

No, due to perforated bowel, they didn't find it until after it tried healing itself. I had an operation to clean me out, which took four hours just for that. Then, 3 drains were put in, and two were okay, but one was still collecting feces. So, another operation, but bigger, three days after the first one. 12 inches cut out of my bowels, big shock when I woke up.

Not likely. I didn't say anything here I haven't said to him. He fully agrees with me that he isn't the world's best nurse!

I had been with my husband for 22 years when I was diagnosed with bladder cancer. He has a personality disorder that makes him incapable of caregiving. He had always been abusive but his abuse escalated when I was diagnosed and became a urostomate. I tried to end the marriage amicably multiple times but was threatened with bodily harm/murder, kidnapping of our daughter, and being left destitute. 5 years and a lot of cruelty from him later we're recently separated and he has a serious relationship with a girlfriend. He's happy. I'm trying to come to terms with the likelihood of being alone for the rest of my life.

So sorry you're in the same club as me. My 27-year relationship with my husband has recently ended. My 5-year cancer surgerversary is this May.

Hey, you've been through a lot.
Do you feel that you and your daughter are safe now? (You don't have to answer that publicly)

I hope you are able to find emotional healing in the days ahead. I'm sorry you were treated that way by someone you should've been able to trust.
If you need to talk, you can message me or try to catch me online.
Thank you for being brave and sharing your story.

Where I've liked a not very happy post it's to say, "Thank you for your honesty".
I've been single a long long time. Surprise ileostomy in 2019 - 3 1/2 months in hospital. It's only fairly recently that I've started to feel like I have a normal human body.
I'm trying to ease into accepting that I'll likely be single for the rest of my life - I'm in my 60s - not many fish left in that pond - whilst not getting fixed on that idea. And seeing if there's some other kind of relationship that would include what matters to me.
I particularly appreciate the 'jerk alert'. I'm going to keep that POV close.

I'm sure in these cases our partners are just as overwhelmed as we are... they really want to help, they just don't know how... Imagine hosting a big holiday party, the entire family is there, maybe a few friends, and some originally uninvited "extras". You're up till the wee hours talking, laughing, playing games, etc. Then it's time for everyone to go home. It's late so you just turn off the lights and go to bed. The next morning you walk out of the bedroom to find the house is a total trainwreck. You know you need to get the mess in tow, you just don't know where to start. At the same time, you're so overwhelmed and exhausted that finding that "starting point" is difficult.

I appreciate your comment about "like". There's been a few posts I haven't been sure how to respond to but want to let the person know they are seen/heard.

You are exactly right! Thanks! I know he means well, and does his best. It is stressful for him and he doesn't always know what to do, what to say, etc, to help. He has always been a kind of 'absentminded professor', and his heart is always in the right place.

Terry

Unfortunately, I believe that no matter how much a spouse wants to help and understand, it's very difficult for them to understand what we go through. Especially when you get so good at the "day to day" that they often forget that it's always something top of mind for us.

And then add in other issues. For me, nobody understands that I live (in my mind anyways) 6 months at a time between scans. I get a scan, it's cancer-free. I'm good til the next scan, then you never know.

Better every day!
Thank you so much for asking

I had four intestinal surgeries so my husband and I had a lot of practice. After my first, my total colectomy, I was in a lot more pain than I expected. My roommate had a private nurse; her light was on 24/7 and she used her cell phone quite loudly throughout the day and night. I asked my husband to stay overnight which he did reluctantly after rolling his eyes and sighing loudly. My sister drove from upstate NY during a snowstorm to stay with me the rest of the time. I had three more surgeries before which he and I calmly discussed what I would need and if he was or was not able to provide it in which case I'd ask someone else. Things were much better by surgery four. Having said all that, I am in awe of how some of you weathered being abandoned by toxic partners. You are the true meaning of survivor.

As far as intimacy goes, have you asked? Or do you just assume it's off the table. Do ask, maybe she's waiting for you!

Mine has been fantastic. Back when I met her in the 80s, she was petrified of hospitals and doctors. I worked with her to ally that fear by signing us up for medical (safe) trials for pay. A 40-year tetanus shot--I guess it's time for a renewal. Then threw her into the deep end when friends got ill with AIDS and we did AIDS Hospice for a while. All this prepared her for my #1 gastric bypass from 350 lbs to today 142. In 2002. Major kink in 2010 losing more intestines then another kink and perforation resulting in the colostomy of today in 2018. When I came home from the hospital, she bathed me, changed my appliance, stood by me all the way. This May it will be 34 years and counting. I've been blessed.