Wife's Struggles with Stoma - Need Advice on Saving Our Marriage

Hi everyone, this is the first time I've ever posted anything but I need help. I've been married to my soul mate for 10 years now and we have two beautiful kids. My issue is my wife has confessed that she doesn't know if she can stay with me having a colostomy. I had surgery on October 29, 2018, and it hasn't been easy. My bowels blocked on three separate occasions causing me to spend more time in the hospital. And my bag has exploded during the night 4 or 5 times with my wife waking me up with me sitting in a pool of feces. Because of this, she is now terrified to wake up covered in it or having it leak or explode while we're being intimate. We had the hardest discussion I've ever had when she admitted that there is a possibility that she can't stay with me. Granted, I have been very introverted due to some other personal issues then with the diagnosis of cancer and the subsequent surgery. Please help, I just can't lose her. I knew she was my soul mate from our first date when she sat in my car.

This won't make you feel any better Liam but you are not the first to have "partner issues" following life-altering surgery.

If indeed you have a colostomy, you should ask your stoma nurse about irrigation.

You may be a candidate?

Does not work with ileostomy.

Good luck, you are a brave man to bear your soul to the world.

V.J.

Hi Liam,

I'm so sorry to hear about the problems you're having, and I can understand how your wife feels and how you feel too. How about sleeping in different bedrooms? Lots of people do that, you know...whether they have an ostomy or not. There can be other problems with sleeping together...like snoring. LOL I always slept better by myself when I was married. Sleeping separately doesn't have to interfere with snuggling or intimacy at all and it doesn't need to break up a marriage. You just do your actual sleeping in separate beds. If you can do irrigation, as Veejay said, that would take care of the problem too.

Where there's a will, there's a way. You and your soulmate will find it. Don't give up.

Thanks guys. I have thought about irrigation but my stoma nurse doesn't think it's a good idea (at least for now). I have also suggested redoing a room in the house so we would have separate bedrooms but my wife has turned it down as a possibility. She says she loves me and is working on getting over her issues with my stoma, I just don't know what to do.

You might try a second opinion as to the irrigation. Stoma nurses don't know everything. My stoma nurses didn't even mention irrigation, in spite of all the problems I was having with skin barriers sticking correctly. I had to find out about it online. Otherwise, I still wouldn't know anything about it. What does the surgeon say? What is the reason you can't irrigate? Too soon? I would find out....

Words of Encouragement from Ostomy Advocates I Hollister

Hi Liam,

I am sorry for the issues you are having. I am sorry to say that lots of people have issues with our new life but my husband would never dream of abandoning me in this critical time in my life! I hope your wife can adjust to all of this! The first few months are the toughest and before you know it, you don't allow it to rule your life! I totally agree with everyone above with irrigation! It will change your life and hopefully save your relationship. It changed mine!

Puppyluv

I don't eat anything major after 3 pm and don't have movement during the night!

Please try irrigation! Some stoma nurses are employed by sales-driven companies and are well aware that we use fewer pouches once we irrigate every 24 or 48 hours. My stoma nurse discouraged me from trying it for a while, but once she let slip that her employer had been encouraging them to sell more supplies, I decided I'd try it for myself and have never looked back!!!! It will change the way you look at your colostomy as it takes away the random output.

Thanks everyone for your feedback and advice. I guess my next step is to try irrigation.

Question: If I have an ileostomy, do I still need endoscopies?

Liam. I wish you luck and if you need any advice on the irrigation, please ask here! Those ostomy nurses, never once have lived with an ostomy! They repeat things from their patients that are not necessarily true or at least not relevant for everyone. Just Google ostomy irrigation and watch the videos several times! You get all you need to know! They do make it look cleaner and easier than it is but it is real!

Good luck,

Puppy

So sorry to hear. Separate bedrooms sounds like a reasonable solution. We learn how to more or less time our bowel movements by the timing of our meals.

How about setting your alarm for the middle of the night so you can get up to empty your bag? I've trained myself over the years to wake up around 4am for a trip to the bathroom. This has prevented many accidents. It has been years since my last accident (knock on wood).

I also have custom covers made for my pouches. Nobody wants to look at the contents of the bag and this covers it up nicely.

You can order them online.

As with any major changes in life, it takes time to adjust, for both of you. All too often, we focus on the person that has been sick or has a sudden life-changing emergency. People tend to forget about the partner, the caretaker, the children, etc.... You're all in this together. Being part of a group is so helpful. I had my surgery so many years ago and nothing like this was available, just flew solo getting accustomed to all the changes. Ask what your wife would like. Maybe you could get twin beds in the same room. For your own comfort, especially at the beginning, it would make sense to sleep on a towel in case you do have an accident. Time will really dictate what will work, both separately and together. I wish you both good health and happiness.

Liam,

You are living my horror story to the letter. Middle of the night explosions, wife moving out of our bed, virtually no intimacy other than hugs or lame kisses. At various times the first 2 years I could not go more than 4-6 hours between blowouts and my skin was so screwed up the pain was driving me mad.

Worse still is the total lack of help and support from various ostomy nurses and my doctor. My only real salvation has been the awesome folks at "The Ostomy Center" in Kansas City. The owner Steve threw me a lifeline of good advice that helped make huge leaps forward in leakage and blowouts. I've largely had to figure this out on my own.

As for your situation how about trying separate beds that are next to each other? My grandparents slept this way their entire lives, two beds pushed together in the middle of the room. This way your movement does not wake your wife and vice versa.

Here is my method for containment of my bag and blowouts: I wear an Ostomy Secrets support girdle (I don't know what else to call it) 24/7. I also wear a Nu-Hope hernia belt due to having had two hernias at the ostomy site. I use Ostomy Armor Waste Wicks under the bag 24/7. These are MAGIC and have saved many a day and pieces of clothing. I also use the wax rings to help seal the barrier to my skin. These have been a real breakthrough for me as well.

I change my bag and barrier every 48 hours give or take as my skin is made of crap and is easily irritated by any leakage. Lucky for me my insurance covers these costs 100%.

I carry a small bag of complete spares nearly everywhere I go. Not doing so bit me more times than I can count early on.

And finally my friends are 100% accepting of my problems. I decided early on to be very open about things so that they could make the choice they needed to make about my situation but also that I could be "the new me". I'm 100% comfortable with my group of friends and didn't lose anyone.

Good luck brother, we are all in this together!

Bryan

Lawrence, KS.

I've posted this information many times, but, in case someone doesn't know about this, I use Topicort Gel for red, weepy skin which was driving me crazy. My appliance wouldn't adhere and I consulted every doctor, enterostomatherapist, etc.... but none of them had a viable or even logical solution until I went into the surgical supply store and they told me to see the community nurse at the local hospital and she prescribed the gel for me. Magic, cured instantly. On another website, I've seen that people use Calamine Lotion on their skin with good results. You don't need an RX for it and it is not expensive. Hope this is helpful.

Ann

Without a colostomy, Liam, none of us would be here - or anywhere. I choose to embrace this science that has allowed me to once again enjoy a meal, leave the house without fear of humiliating myself or, worse, dealing with the excruciating pain that kept ripping apart my insides. If your wife observed the worst of times for you, for her, for the entire family, then surely she can appreciate your future together and find an acceptance of life's new normal. It really isn't so bad. I love going to a Broadway or Off-Broadway show, for example, knowing I can poop while watching an acting troupe perform instead of spending the entire time straddling a toilet and praying for, literally, a moment of peace. Acceptance and understanding. I'm lucky to have that with my wife. Truly hope it happens for you. All the best - Silveradokid.

Hi Liam.

Like you, my wife had a problem with my stoma. The way around it we found was single beds pushed together. You're still next to each other, but if you have a leak, it's only a single bed to change and you don't have to disturb your wife.

If you are having problems with leakage, talk to the company that supplies your stoma equipment. They will work with you to help, different stoma bags, adhesive sprays. There are lots of equipment to help stop leakage. And finally, watch what you are eating. As a rule, you can eat most things, but only if you chew, chew, chew. I am one of the unlucky few whose stomach acids don't tolerate a lot of things, so I have a limited diet which I have gotten used to, and both my wife and I enjoy life together.

As long as you are eating at regular intervals and not too close to bedtime, I would think your bowel movements will start to regulate to specific times. For instance, once I empty my pouch before bedtime, I usually have no output until the next morning. Try to avoid things that will cause diarrhea. Do you wear a wrap around your pouch? I've been wearing women's tube tops to keep my bag in place and reduce the possibility of separation and or leakage. Don't laugh, they work great and much better for me than a belt. I usually buy the skin tone ones.

If your wife is indeed your soulmate and loves you, she will understand your situation and accept the problems that arise. None of us are perfect, and I'm sure she has her own issues. Maybe ask her how she would feel if the roles were reversed and she was the one with cancer. I would hope you'd be there to support her as well, unconditionally. That's what marriage is about, after all, remember your vows.

Not too familiar with colostomies, but I know some find irrigation helps control and regularity, along with a plug. See your Stoma nurse asap... try different products. Good luck!