Wife struggling to cope with ileostomy diagnosis

My wife has UC and recently received news that she had high-grade dysplasia and they would need to do a colectomy and subsequent ileostomy. She is devastated by this, and it hurts me to see her in so much pain. She has become withdrawn and robotic with most interactions with me. She has had a few breakdowns. I will send her texts of support, and I try to constantly tell her how much I love her. She will not respond or will even ignore my calls when I try to check in on her. I want to give her space, but still want to be supportive. I don't want to not give enough support, but I don't want to be overbearing with it. Has anyone else had a similar situation?

How lucky is your wife to have such a supportive husband. I think you should give her a little space. You might reach out to her doctor to let him/her know what is going on. She could use some counseling to help her through this time.

You sound incredibly supportive, but it also sounds like your wife may be depressed by this news. Depression can be overwhelming to the point where all you want to do is sit and stare at a wall. Or she may be shutting you down before (she thinks) you reject her. This is all speculation, so it might help to calmly approach this subject with her. If she feels safe talking about it, you might both learn from it.

Dear Wife of Hamstring:

I could offer many platitudes. You don't need them. Your life has been turned upside down, and you and your husband are struggling. You with your very own upcoming problem, he, as I see it, because he loves you.

You are reacting like most people would. Being afraid of the unknown, imagining what future lies in store, not just the procedures, but what may come after and the projected misery of having this happen to you. Why me? We don't really know. It could be the luck of the draw, karma, design, etc. The one thing I can assure you of is that everybody who is "blessed" in this way has to be devastated. The fight or flight syndrome will appear, and you may choose to fight or flee. Even if you are not strong enough to fight at first, with the help of your husband and kind others, this will be just one more burden you must carry. You may find your positive reaction to this challenge again. While this happened to me when I was 81, I feel even worse for you being so much younger and in a different place than I am.

Please, do not give up. My sister had the same thing (are those effects from WWII in our cases?), and she handled this insult to her body all by herself. I need help and get it from my family. Someone under a different headline on the site spoke of being kind. Kindness is, indeed, what helps. Even if you should succumb for a while to feeling so sad and hopeless, don't give up.

As you may be able to read on this website, there are many patients with similar problems who are getting along; some even have a life. I trust that you will also.

You are such a sweetheart for being openly supportive. It is difficult for many to think about how something like this may affect life. Stay supportive but maybe back off a little. She may just need time to adjust to the news.

My ileostomy was done after emergency surgery, so I wasn't given a choice. My husband took care of the house and kids, but he is grossed out by the ileostomy. He doesn't make it obvious, but I can tell. At first, it made me sad, but now I realize that it is what it is. I wish my husband was as openly supportive as you are.

Words of Encouragement from Ostomy Advocates I Hollister

It appears that your wife is still facing the unknown, with those alterations to her body still looming on the horizon.

There is no quick fix that you can do to make her feel better, Hamstring0304. Of course, it hurts you to see her in so much emotional and physical pain, and you want to be as supportive as possible. At the same time, I know you fear treading a line between being supportive and being overbearing.

My first reaction with my dear husband after my ileostomy was to become shutdown. I also became robotic and withdrawn with him. I couldn't imagine why he would find me attractive anymore, let alone understand the implications of what this ostomy would do to my life (our lives) going forward. But he was steady and relentless in his devotion. He never wavered, flinched, or so much as twitched during those ostomy nurse bag changes in the hospital. 

Understandably, your beloved is about to undergo a major life-changing surgery, but also one that might make her life much less physically painful. That itself may provide a huge source of joy and freedom to her life.  

Make sure you reinforce that you are there for the long-haul, that you're not going anywhere, and that you love her no matter what. I can't tell you much much those platitudes, as cliche as they may have been, kept me going to the finish line.

Just try to be positive and talk about how much better she will feel going forward.

It is a new lease on life. I know, as I declined the operation for 8 years and suffered all the dreadful symptoms of the disease - frequent hospital stays, steroids, blood transfusions, pain, diarrhea, and sickness, etc.

I thought my “life” would be over with a bag. I was 28 and married with 2 kids.

But it gave me a new life. I retrained and started a new occupation, and I started taking my kids to the local rugby club.

I started coaching kids and eventually decided to try playing the sport that I had always loved.

I started playing again and played for 17 seasons, and only retired when I played alongside my third son, playing regularly with my second son.

My wife has never been anything but supportive, and we have managed to travel all over the world on holiday - USA, Columbia, Peru, Australia, New Zealand, South Africa, Madagascar, and all over Europe.

So just tell her to look forward to her new life - even though she may not enjoy playing rugby. 😳

An ileostomy is a plastic bag that allows you to live life to the fullest. I got mine in emergency surgery when I was 76 and had never heard of an ileostomy. I had never had any problems before, so the whole issue was a shock, but life itself is such a precious gift that we must dig deep to embrace every moment that we are given. I've dealt with a few issues of learning to balance my electrolytes so I don't get dehydrated, and it's so important to stay active, especially as a senior. In December, I fell and broke my back, but I am back in action now, and in two months, we are going on a two-week Caribbean cruise! Please assure your precious wife that one in every 500 people has an ostomy. She is not alone. We are a strong group of warriors, and we are here to support her. Let me know if I can help!

I was in a similar situation as your wife, having had an ileostomy 6 months ago. If your wife is interested, I would be happy to talk by phone or WhatsApp.

For your information, I am 77 years old, female, and suffered from 55 years of UC before surgery. By profession, I am a psychologist, but I would actually be happy to connect for mutual support of two people stuck in the same situation.

I was in a similar situation as your wife, having had an ileostomy 6 months ago. If your wife is interested, I would be happy to talk by phone or WhatsApp.

For your information, I am 77 years old, a female who suffered from 55 years of UC before surgery. By profession, I am a psychologist, but I would actually be happy to connect for mutual support of two people stuck in the same situation.

I just had a colostomy and iliostomy in June of this year and understand. It will get better; join a support group. At first, I would not go anywhere out of the house. I didn't even tell any of my closest friends or family I was in the hospital and made excuses during my recovery why I couldn't do things. I had home health nurses for almost 3 months, which really helped me talk and work through my embarrassments. Now I am very open to people that I had my colon removed and my life is so much better now, and I am so happy I had it done. I'm still facing two more operations, which depress me, but I now have a stronger will going into it! Trust me, her life will get better, and look into support groups! God bless!

I'm a 74-year-old retired nurse who is just over 4 months post-op for an ileostomy under similar circumstances to your wife. Please assure her that life does not end with this surgery, nor does it define her. My biggest fear was that everyone would be able to “tell” that I had an ileostomy from my profile. That is furthest from the truth. My bag is concealed very well, and it's rare to see anything. I wear exercise tights, went back to doing Zumba 3-4 times a week, and do a lot of walking. I feel confident and proud of the way I've adjusted. Like your wife, I have an incredibly supportive husband who was and is with me every step of the way. It will be difficult at the beginning, but she will overcome her fears. Best of luck with her upcoming surgery.

Not sure how far y'all are from the Cleveland area…

I found out I could live without a colon at the same time I found out the only option was to remove mine (colectomy, subtotal in my case). This was 2 years ago and I have children at home. I called the digestive disease psychology department at Cleveland Clinic the day after I got the bad news and told them I wasn't doing well and asked if there was someone who could meet with me soon. I worked with that psychologist until about 2 months after the colectomy. I have an IRA now, but if she ever would like to talk, let me know.

I don't remember exactly what my husband said one day; he was trying to be helpful, but I remember my response, which was me yelling that he had no idea what I was going through, I was literally gutted, and until he had to walk around the rest of his life without a colon not to talk to me about it.
Loss of control, fear, anger, pain all swirling together don't always allow for our best selves to shine through.

Men like to be fixers… she knows you can't fix this. Messages reminding her you love her are good if you can accept she may not be able to say it back right now and it's really not personal… her pain is deep.

I can understand since I was in your wife's position almost 50 years ago. It took an understanding and loving and patient man to help me accept it. There are many types of undergarments now that your wife can look into or that maybe you can purchase for her through Ostomy Secrets. See if there is an Ostomy Group nearby that you can both join to get more information. Sometimes it is the fear of the unknown. If you can just somehow reinforce how much you love her as the beautiful person she is. A good question for her is how would she deal with it if it were you that needed the surgery. It will take time for her acceptance even after the surgery because the surgery scars don't look very pretty. Praying she will have acceptance soon. It's either this or her life. You are a good person to seek out advice to help your wife.

Kudos to you! Your wife is lucky indeed to have the patient man that you are. First of all, this was all necessary for her to live, right? Let me tell you, I never felt any remorse or withdrawal because there was still so much that I wanted to experience. Having an ileostomy was a blessing compared to the alternative. My girlfriend at the time still married me, and the thing your wife must realize is that it is the person she is inside that counts. I'm sure you love her for the woman that she is, and having an ileostomy hasn't changed a thing. Trust! Having an ileostomy does not exclude you from anything you want to do! I will say there may be restrictions on what she can safely digest; however, the only way to know is by trial and error. That brings us to the second part. Be brave! Don't be afraid to try new things. Go on vacation! Get help from her friends. Lastly, tell her she is as beautiful as the day you met. I have no doubt it's in your heart! Mike

Sadly, I can feel this as well, and do believe the wife may be suffering from depression, and needs some therapy/meds maybe?

I was diagnosed in 2006. Got an ileostomy in Dec 2019. Shitty as all time to be with a new stoma! COVID-19 happened, and I was not allowed to go to a hospital. Turns out, I *DO* go out *a lot more* now, less in the hospital, do more activities with human beings.

I also get super sad about the bag. It's depressing, it sucks, bathing is the worst thing ever, you kinda think this other human may find the stoma gross and not say so. How vulnerable are the two of you? For my SO, they need to just have sex. Bro does not care. It was a me problem but I know he felt super bad about it. He was amazing and supportive like you are! It was something I had to come to terms with.

Do I enjoy showering and maybe filling a bag in 20 minutes, at times? Okay, I hate bathing now but do it daily! So just that may be it for them? It probably is not you. Please keep sending those messages, just be different about how you word them. More focus on her than you in these messages. Never use "I", idk it helps for me.

Thank you for being such a loving husband. My dude is amazing too. She has a winner.