Navigating Ostomies and Surgeries with a Partner

Apr 26, 2023 6:00 am

It doesn't seem to faze my husband one bit. He basically acts as if it's not there. Sometimes I'm half asleep and get up to pee and empty my ileostomy bag; I forget to put my deodorizer in. So when I get up in the morning hours later and it stinks to high heaven from not having that deodorizer in there. I told him sorry, I know it stinks and he says I'm used to it by now. It's funny because if he farts I'm thinking it's my bag and I'm sniffing myself through my shirt thinking it's me and after a few minutes I'm like did you fart? He's like yes. Lol!!

Apr 27, 2023 7:22 am

I have been married to my husband for 17 years and he is very supportive of me having an ileostomy. I was knocking at death's door and was rushed to surgery, and he has helped me every step with bag change and anything else.

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Apr 30, 2023 5:24 pm

Crappy Colon Diaries,

A great topic you decided to bring up. I think it's very important for everyone to see the good stories, to provide hope and the not-so-good stories, to provide appreciation for what they have. I've been with my wife for 31 years and she was amazing before my battle with Crohn's, let alone the two years I battled it and unfortunately lost which led to "Lily," my ileostomy, and "Ken Butt." The recovery from "Ken Butt" was the worst. I didn't want to eat, and all I wanted to do was sleep. At one point, I strongly thought about giving up and stop fighting the fight. I'm not going to tell you that because of my wife I made it through, but I will tell you that she never gave up on me. Once I decided to get better, she was there for the wound care, the showers with a trash bag around my waist, the late-night crying sessions, the changing of "Lily" when the bag leaked, and the days I was just downright mad at the world. All in all, she hung in there, and I'm so proud to have been so lucky to have a person in my life that I can call my wife that loves me for who I was and who I am now moving forward, with "Lily" and Ken Butt."

Everyone, hang in there. We fight the battle every day, and for every day we get up, it's a win, and the more wins we all have, the stronger we all get and the better our lives are!!!

May 01, 2023 2:44 am

So far, my husband has been very helpful. He helps with showering. He helps with fasteners and socks. He helps me keep things in perspective and helps me remember to laugh.

May 09, 2023 9:57 am

Hi- It's been about a year since I had the emergency surgery for perforated intestine, and my husband has been incredible. He still helps me with changing out and applying my two-piece ostomy bag: where my stoma is located, it makes it pretty hard to see anything beyond the bottom of the stoma, lol. Since I have super sensitive skin, I need to be sure everything is clean and correctly applied, and I have created some scenes trying to use a mirror to do it myself.

My husband, from day 1 in the hospital, watched the ostomy nurse and just took over.

Because my stoma is RIGHT in line with a belly fold, there is a never-ending issue with the area along the crease, by the belly button. Some people call accidents "blowouts," which is OFTEN the case, but we call a "CODE BROWN," or a "Perimeter Breach," lol.

I have, of course, tended to those situations myself, but it is so much easier and faster if my husband helps. What a bargain he got when he married ME, lol!

He has, truthfully, saved my sanity. They gave me less than 50/50 odds of living: I did, thank God, but as you all likely know: The aftermath of the surgery is harrowing. The swelling, the pain, the mental adjustment: I was really, uncharacteristically depressed. My husband brought me around by saying "I'm so thankful that you made it into surgery, and LIVED: That surgery saved your life, you should probably start being a little thankful for that." I hate when he's right.

When the bag makes its ultra-embarrassing noises at the worst times, we both die laughing...I always knew what a great guy my husband has always been, but this situation? He treats it like it's nothing and has greatly helped me to adjust to my new "reality."

Wishing everyone here the best of everything, especially: Good health!

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Jun 14, 2023 9:55 pm
Reply to tmn68

Your husband and my wife should get together.

Sep 15, 2023 10:00 pm

I am a 24-year-old female and dating a 28-year-old male. We have been together for 3 years. I have had my ileostomy for 6 months now.

When I first told my partner, he was away in another country for school. Immediately, our texting went from all day every day to one text every other day. Our Facetimes went from every weekend to not at all. This was really hard for me and hurt me a lot. I thought that once he returned to Canada, he was going to end our relationship.

Fast forward 3 months, my boyfriend is home from school and our relationship is seemingly back to normal; we are texting normally, we go on dates, we snuggle, we are intimate. On top of this, he is so supportive - he takes me to my appointments, makes sure I follow up on my appointments, took me shopping for new clothes to fit my ostomy, and tells me he loves me no matter what.

Instead, it is much harder for me to cope in the relationship with an ostomy than for him. For me, I am still in the process of accepting that I have an ostomy. Right now, I feel gross, ugly, and unwantable as a partner. I still feel a lot of shame in relation to having an ostomy. These insecurities end up manifesting into my relationship. This is where my partner really does the heavy lifting when it comes to supporting me in this transition. This surgery has given me a lot of self-hatred and I have to work on loving myself again. It turns out the relationship my ileostomy affects the most is the one I have with myself.

Sep 18, 2023 12:36 am

My husband of nearly 25 years has been great. I had a bilateral mastectomy 12 years ago. I had issues with fluid, and ended up having to wick the incision with gauze. He did it. My first colostomy surgery this past March was a disaster from the beginning, and the stoma became necrotic and fell off. For 3 months I had a below the skin line opening. Hubby changed my bags so he could keep track of skin growing over the opening. The doc was very slow to admit I needed a revision, which finally happened in July (his female partner did it.) and was successful. Hubby has been changing the bag all the time, though I finally said I can do it myself. He's not grossed out and has been very supportive. I know I'm fortunate in this regard. Stoma is named Brook, because she burbled a lot at the beginning. 😁

Oct 18, 2023 9:48 pm

It hasn't bothered him or me either way. We love each other unconditionally; an ostomy is a minor issue if you love each other. Married for 43 years.