Husband not coping

Hi Cheerful mum

I'm not surprised that you're feeling very down after your husband's comments. It must have been very difficult for you to hear this.

Do you think it would help your husband if spoke to someone on the Macmillan Support Line about what he's finding difficult to deal with? There's someone available every day from 8am to 8pm and it's free to call on 0808 808 0000.

Sending you a ((hug))

Hi Cheerful mum,

Not sure how much I can help you here but I am 52 and have an illeostomy which I am hoping will be reversed after my six month stint of chemo (starting at the end of this month). I knew my husband was going to struggle with it. We knew I was going to need it and he said he was going to find it weird. I basically can't even refer to it or mention it. And there is no way he is going to look at it. Like you I see it as life-saving so I had to adjust. My neighbour had one and she said she totally mentally could no cope with it. Hers was eventually reversed.

My husband is very squeamish and I am resigned to it. When I was pregnant with our boys he couldn't touch my stomach to feel them moving because he was too squeamish. Initially I was very upset and I wanted him to bond with my bump. But he didn't love his babies any less. So, it would get me down but I have had bowel and liver surgery this year. After the liver surgery I was in hospital for a week with sepsis. And my surgeries kept getting cancelled because of covid. We have had a very rough ride.

One of my oldest friend's husband's had cancer. He was incredibly sick. He has a permanent stoma, and she said she found it really hard to cope with. I try not to take it to personally. My husband is who is he is. I know he still loves me. I wish he could be more accepting of the stoma but he can't. So I have to be more accepting of his problem with it if you see what I mean.

Is your husband squeamish too. Or do you think he just needs time? We have still found ways to be intimate (as much as you can after you've had two rounds of major surgery!). But we are taking it slowly.

I totally understand why you feel down. If feels like a little rejection when you need reassurance more than ever. So much about cancer is tough. My illeostomy started leaking at night and I couldn't mention it to my husband. I think my new bags have sorted the issue now but I can't vent at my husband. But I can talk here. And my stoma nurse has a sympathetic ear. 

I've rambled on a bit but I'm all ears if you want to vent. Big virtual Hugs.

SazzyJ

Hi cheerful mum, I am in the same situation apart that I have a permanent stoma. My husband said he couldn’t cope with what I had to go through. He even said he would rather die which was very difficult to digest. Like you I got used to my stoma very quickly and I don’t see it as an issue. I couldn’t really talk about it and he hasn’t even looked at yet. I don’t know what the answer is but it’s nice to know it’s not happening just to me. 

Wow. That is a pretty dramatic response. I'm not surprised you found that response difficult to digest. It's weird. I have one and would much rather live. It's interesting to see what a big issue this is for some to wrap their heads around. And it's a bit bold to make such a statement when you are not actually faced with death yourself.

Like you I am glad that it is not just me experiencing this. I don't see my husband being able to talk or look at my stoma any time soon. 

Thanks ladies ,not nice anyone going through this but feel better I'm not the only one.He never seems to want to discuss any of my illness,I feel he thinks if he doesn't talk about it it will go away .I wish it would but its not ,I have this for the next 6 months.I feel if I can deal with it why can't he.

And Sazzy no he is'nt squeamish,so don't understand why he is like this xx

My hubby is due his op in 2 weeks. I asked him never to show me. His condition for the last 2 years has wrecked my mental health and the way his specialist team have dealt with him is disgusting, I no longer trust anyone medical. I can't see it as its a reminder of what's it's all done to us. I don't want to feel differently about him or see him a diffrent way, I want to save what we have left. It's been pretty miserable for both of us. Thus all started in 2020, all the symptoms of uc, he was perfectly healthy before that, of course because of covid it took them forever to do test. Then came the uc diagnosis, we had no idea what it even was, his specialist told us to research it and I did, me researching 8t had me up the hospital with a mental breakdown. But I did everything his specialists weren't doing, when they were screwing around and not sorting our his prescriptions I would complain to the hospital and it would eventually get sorted. I wrote out for him everything he should avoid eating and safe food to eat. They have been useless, I told her his meds were making him sick and she said up them, they landed him in hospital. It sucks

Thats exactly it. That's why I can't see my hubbys bag and I don't want to talk about it. Its hard mentally for some of us to deal with, I'm sorry though and I do have sympathy. Unfortunately my mental health is so shot to pieces because of what my husbands uc has put us through that I don't want to talk about it or look at it. I just want to act like everything is fine, out of sight out of mind, because if I don't then my mental health will impact us both and I don't want theat. I never want to see him a diffrent way. I've just had a massive falling out with my mum this morning who told me this shouldn't be affecting me, boy is she so wrong. It takes its toll on both people in a relationship. I've been with him for 18 years so a long time, he's been healthy all the way through until 2020 now it hasn't stopped

Hi hayley,it must be hard ,I had a good talk with my hubby,and the truth is he can't cope seeing me go through this.He can't believe how strong I am ,but he is falling apart.Everyone deals with it in their own way.At the time of first having my stoma I felt unloved and unattractive.I am now cancer free and had my stoma reversal on the 16th February,.Our relationship feels like it did before I got cancer.Hopefully it will go from strength to strength.I will not let cancer destroy 30 years of marriage.

Give it time,I thought we would not survive this horrible journey ,but we did.i am here if you ever want to chat ,because I found talking was the best medicine.xx

Cheerful mum

You’re an inspiration. Thanks for your upbeat response. I’m six months since my LAR and like you I’m okay with it I’m just so relieved that the cancer is in the bin. 
my husbands been my rock however like you I have felt unattractive at times. 
Congratulations on getting your reversal. Hope alls good 

Did you know that over 120,000 people in the uk have  a stoma.you really would never know who has one unless you were told.we all live full and normal lives.do click on anyones name to read a short bio of how they got on.for example i myself had uc before the cancer.

I hope that things start to work out for you both

Kath