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Wife Having Trouble With Stoma

Posted: Sun Mar 17, 2019 8:15 pm

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 October 29, 2018 and it hasn't been easy. My bowls 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 now is terrified to wake up covered in it or having it leake 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 cant 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.

Posted: Mon Mar 18, 2019 2:22 am

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.

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Posted: Mon Mar 18, 2019 4:26 am

Hi Liam,

I'm so sorry to hear about the problems you're having, and I can underestand 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.

 

Posted: Mon Mar 18, 2019 7:11 am

Thanks guys. I have thought about irrigation but my Stoma Nurse doesn’t think it 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 😢

Posted: Mon Mar 18, 2019 12:13 pm

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....

Posted: Mon Mar 18, 2019 1:01 pm

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

Posted: Tue Mar 19, 2019 8:39 am

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

Posted: Tue Mar 19, 2019 3:33 pm

Please try irrigation! Some stoma nurses are employed by sales driven companies and are well aware that we use less 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.

Posted: Mon Mar 25, 2019 10:12 am

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

Posted: Mon Mar 25, 2019 10:45 am
question--if i have an iliostomy do i still need endoscopies?
Posted: Tue Mar 26, 2019 3:20 pm

Liam. I wish you luck and if you need any advise 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 irriagation 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

Posted: Tue Apr 02, 2019 3:36 pm

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

Posted: Tue Apr 02, 2019 3:55 pm

How about setting your alarm for 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.

Posted: Tue Apr 02, 2019 4:18 pm

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.M aybe 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.

 

 

Posted: Tue Apr 02, 2019 11:03 pm

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 blow outs: 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 loose anyone. 

Good luck brother, we are all in this together!

Bryan

Lawrence KS. 

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