Community Forum

I’ve been reading the forums for a long time in hopes for a better understanding of the mental and physical pain that comes from having crohns in general and dealing with flares.

I’ve been with my fiancée for over a year now. he has had crohns for over 15 years and has been incredibly lucky with his progression. He has had to take remicade only 4 times over 15 years and has been able to manage through with no flares for the last 3 years. Around october he has a new area of inflammation and is in the middle of  a flare.

I have tried to educate myself on the medical part of crohns, the treatments, the symptoms and the general support a spouse should offer but i am very discouraged in the mental/emotional aspect of coping. I’m having trouble finding something anything I can do for him to help. I can’t bare to see him suffer and sit by and do nothing. I do know that this is something I have to do at times. I miss him. he is in terrible pain, moody and emotional when awake and is consumed by what’s going on in his body. He doesn’t even hold my hand anymore. I can’t even comfort him. I try to gently broach the subject but I feel like a horrible person for feeling these feeling when hes going through this. I keep asking him if its time to go to the hospital but hes insisting that its not needed yet. Hes taking his medication and is in contact with his gi.

I guess I hope to hear from people on how I can cope and help him get through it. Everyone has feelings and I cant be there for him 100% with this in the way. I try to keep in mind that he’s sick and in pain but its very hard when hes constantly short tempered and in an ill mood.

Please help.

 Reply posted for dzna.

Thank you everyone for your wonderful input. Hearing others say just let him work through it in so many words is very reassuring for me.

Sometimes its hard to get through my head that its not me or anything I have done its just something hes got to deal with as best he can. I ve taken the "Im here if you need anything" approach and it seems to be going very well. Keeping my mind busy as well has helped so I am not always worrying after him.

Thank you guys all very much.

 Reply posted for Ca_Ginger.

First let me say, that I feel for the both of you.  I tend to get a little defensive and upset when my husband asks me about how I am feeling because it makes me feel like a sick person, but in my mind I am not sick.  I agree with the other posts that you need to let him talk to you; I think the best way to handle this is be supportive and listen when he needs it, but don't act like a mother who is pestering with questions. 

As for you, I think you need to do the things that you enjoy and keep yourself well while your fiance in going through this.  I know that it is easy to forget about how family members feel when they love someone with Crohn's.  My husband tells me all the time how difficult it is for him because he watches me suffer, but can't make it better for me, just knowing this makes a world of difference to me.  And try not to take his moods too personally, I know it is hard, but in life when we are stressed (even when we don't have a chronic disease) we tend to take it out on those we love the most.

 Reply posted for Ca_Ginger.

I was just diagnosed with Crohn's yesterday, but that's after years of symptoms. When I'm feeling lousy, I sometimes just want to be by myself, and I try to make my boyfriend see it as an opportunity for him to work on other stuff. Don't get me wrong, I think having someone there who loves you (especially when your intestines are busy hating you) is an incredible support. But for me, I know there are times I prefer to know that at least one of us is doing something more interesting than thinking "ow ow ow". 

 Reply posted for Ca_Ginger.

I agree totally with wannabeucfree. Sometimes when feeling crummy we just want to be left alone and not helped, as it were. Your sweet for wanting to do something but there may not be much you can do.

 Reply posted for Ca_Ginger.

I have been thinking about this since yesterday. The only thought that occurs is that you can let him know that you are there, you care, and that you need HIM to tell you what he needs. 

 For me,  I hate people hovering over me, I don't want to keep being asked how I feel, am I bleeding etc etc..  I prefer to deal with this as much as possible without too much drama. (I am in remission at the moment, so easy for me to talk!!!!!!).

When I was flaring, I asked my husband to let me tell him what I needed-there were days I had to ask him to do stuff for me- it was just easier and clearer for me to be specific about my needs. Plus, for those of us with IBD, it is sometimes just too disgusting to talk about. Poop loses its glamour very quickly!!!

  Good luck, take care of your own needs as well, and hopefully you can get a good dialogue going that will help you both!  Lynn