Support for longtime girlfriend of Crohn's patient

Hello,

My boyfriend and I are in our late twenties/early thirties and have been dating for 4 years. Three years ago, he was diagnosed with Crohn's Disease and it has rapidly progressed. I have witnessed several stays in the hospital, awful flare ups, countless medications, the whole works. This past October, he was hospitalized for over a month and ended up getting a small bowel resection surgery plus a temporary ileostomy (supposed to be for 6 months to a year).

I have been by his side through everything and I have tried so hard to make things easier for him. We have lived together for about a year and a half now, and I do the bulk of cleaning, bills, taking care of the dog, etc. while working a full time job. My boyfriend's health problems have resulted in him being unable to work. He is on disability.

He has been recovering from surgery well. He is now able to move around, go for walks, and eat almost like a normal person. The issue I now face is that he seems unwilling to attempt to lead a normal life. He sleeps til after noon each day. He then spends the bulk of the day playing video games. I come home from work and we spend a couple hours together before I go to sleep. Then, he is up until 4am or so playing video games, and the cycle starts again. I am still finding that I am doing the bulk of the housework, taking care of the dog, managing the bills, running the errands, etc.

I have tried talking to him about it several times to no avail. He says that video games are all he has now while coping with an ileostomy. All we do lately is fight. I feel like this all stems from an emotional response to what he's gone through, but I don't know what else to do. He won't talk to me, he won't talk to a counselor. I want to be supportive, but I am at a loss. Just hoping for some insight.

It's a very difficult process he's going through, the video games are probably his way of escaping reality.

Give him time but also communicate with him about your needs in a loving and supportive way. Remind him he is on track to getting better and it won't be like this forever.

Hey iced coffee,

not sure how to really respond to this. On the one hand, I know that Crohn's is a bitchy illness, on the other hand I have to say, in my own circumstances things were quite different.

So, just briefly some background for me re surgery. I also had surgery, also a small bowel resection (60cm) and a stricturplasty, but no temp bag. Took me about 3-4 months to really get back to being ok post surgery. Now, however, what your bf is doing (doing nothing, playing video games all the time, making you basically doing everything, while he isn't doing anything) is the exact opposite I did back then. I was 22 when I had surgery, after I had recovered over the summer, I started working full time, applied for university to start a master degree. At 23, my dad died in an accident during the time I was doing my masters, I still finished up that degree and concentrated on finding a good job, so I could support my kid sister and my mother. Things worked out for a job and despite problems for years from 2005 until about 2012, I worked really hard - from early 2012 on, I was able to get into good remission and since then things are pretty good all around. I know some people with Crohn's are in much worse shape, so they can't really work at all, but in my experience if someone can play video games all night... he can do a lot of other things as well.

Anyway, I am pretty sure that if I, after surgery, would have just done nothing but play video games until 4am each day, my body would not have healed much at all and I might even have fallen into depression. Quite honestly, it even seems like that is going on with your bf. I was somewhat depressed in the days and weeks after my surgery, but got over it afterwards with the help of my family.

This situation is hard and the only suggestion I have is to tell him directly that what he is doing does not work for you. It sounds harsh (after all I went through the post-op recovering phase myself), but the only way to deal with this situation is to take hard measures, that is tell him to get his act together (including starting to look for a job, a temp bag does not stop anyone to e.g. work part time, if the surgery is e.g. 2 months or more in the past). And if he does not seem to respond to such a suggestion, is there any way you could suggest he stays with his relatives/parents for a week or two? Sometimes, such an abrupt interruption into a depressed person's routine is the only way to get him out of it.

Sorry, it seems I cannot be much more of a help here.

I've had my own stomach issues, since my son was a toddler, so it was easy for me to empathize with his diagnosis and condition. I know all to well what a struggle is can be to do normal things. Crohn's disease is painful, scary and stressful. I find that we both want to stay home more, get take out, rather than go out and neither of us are motivated to do much physical labor. Fortunately, I have an easy job and can work from home.

Just being alive right now, is effort for my 18 year old son. He definitely likes to check out, play games etc. and rarely helps out around the house. I'm his mom, so I put up with it, but I can't imagine someone wanting to be in a romantic, mutually supportive relationship with him, as he is now. If you didn't know he was sick, you'd think he was the laziest person in the world.

First off I send you a hug. I am not envious of my loved one's position of feeling helpless while I'm in surgery /hospital / very unwell and at times having to do a lot previously shared stuff alone. You clearly care a great deal.

I don't have any answers either, I have a few thoughts...you mentioned it's been a pretty full on few years for him...sometimes I find that when I lurch from one health crises to the next all I can do is cope with the physical side, often it's only when there is a reprieve of sorts that the emotional side hits. While the disease hasn't gone anywhere, any improvement may have been enough to bring this to the fore for him. I also wonder if he feels there isn't much point trying to get going with other things while he knows he will be back in for reversal surgery in a few months. He might feel brighter when (and if) he gets that hurdle out of the way.

I would guess that you had your own fears and hopes about the op and the disease generally? Have you been able to have conversations about this with him? Perhaps sharing your thoughts in an open self dislosure fashion might be a way of broaching the subject without it being about who does what.

Finally, I don't have a crystal ball but I would say don't panic. October isn't that long ago and recovery is very variable (mentally as well as physically) especially following a long hospital stay. The fact that he is not showing interest in other things now, doesn't mean that won't shift in future, but in the end you know him best. I wish you both the best of luck.

iced_toffee said:

I feel like this all stems from an emotional response to what he's gone through, but I don't know what else to do. He won't talk to me, he won't talk to a counselor. I want to be supportive, but I am at a loss. Just hoping for some insight.

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Hi iced_toffee,

I think your feeling is correct. Dealing with all those life changes can be very draining, but I think your boyfriend is in need of some help with coping with them. If he won't talk with a counselor, maybe you would like to, to get some suggestions on how to help him (and help yourself). You might also talk with his doctor or someone else from the doctor's office (like a nurse). Maybe on of them could talk to him and get him to seek some help. If he won't talk with a counselor, maybe he can at least start with his GI.

Good luck.

jwfoise said:

Hi iced_toffee,

I think your feeling is correct. Dealing with all those life changes can be very draining, but I think your boyfriend is in need of some help with coping with them. If he won't talk with a counselor, maybe you would like to, to get some suggestions on how to help him (and help yourself). You might also talk with his doctor or someone else from the doctor's office (like a nurse). Maybe on of them could talk to him and get him to seek some help. If he won't talk with a counselor, maybe he can at least start with his GI.

Good luck.

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I totally agree, when I first found out I had Crohns and after surgery I feel in to a very dark place, one I never wish to go back to.

If he refuses to see anybody about his problems then I think your first step is for you to go and see somebody to talk about your frustrations and issues.
If nothing else he will see your willingness to help and assist and this may push him into doing something.

He is going through a very difficult time however that is no excuse not to understand what he is putting you through.

One of the worst things when I was in a bad state was the thought of being a burden and having to let my family do everything.

It is very stressful and it is clear that you love him very much and will stand by him.

I would go to speak with somebody about how you are feeling, I think this is your first step and hopefully it will be the start of gettign him back on his feet.

Good luck :ghug:

Hi all,

I know this post was years ago, so this is long overdue, but I wanted to say thank you for the support. I had my account here linked to an email address that I didn't check very often, so I missed a lot

To give an update, things did not improve for a very long time. It even got to the point where I had to have a long conversation with my boyfriend and explain that I couldn't stay with him if it would continue to be a one-sided relationship (this was after over a year of this behavior).

He ended up getting a reversal surgery, which did not fare well at all. He ultimately had to get a 2nd ileostomy because of how badly the reversal went. But, the 2nd ileostomy went much better. He started taking online classes at a local community college and he slowly but surely fell back into the person I fell in love with.

This past September he had a reversal surgery for the 2nd ileostomy, and things have been going really well. We are now engaged. I look back at this post and I can't believe how bad it was for a while. It's wonderful, supportive people like you all who make this journey less trying. Thank you for being such amazing people. I hope everyone here is doing well.

Congratulations and I am glad things are going so well.