Hello everyone. I posted the below story in the "Your Story" room and it was suggested I post it in here.
I've been with my fiancée for 7 years and we get married a year from now. She was diagnosed with Crohns 5 years ago and the past 2 years have been completely hellish. She had part of her bowel removed 18 months ago and has 2 fistulas which have bled almost constantly for 2 years. These fistulas are held open by a stitch to help them drain but they have left her in such incredible pain that she can't sit properly and has been unable to drive her car for 2 years. We no longer have a sex life as the pain makes it impossible. After 12 months off her work on sick leave she was dismissed on medical grounds.
The reason for my thread is to ask what support there is out there for spouses of those with Crohns. My fiancées recent surgery, where they tried to flatten one of the fistulas out more, has left her almost bed ridden and I am seriously worried about her wellbeing. She keeps telling me to go and find someone else who isn't broken but I will never do that. She's a lot more philosophical than the girl I fell in love with and her personality in general has changed alot in the last 2 years. She gets upset very easily and I'm not much good when this happens. I don't know what to say and just end up cuddling her and telling her everything will be ok.
She has to go back to theatre in 2 to 3 months so they can see if the recent surgery has improved the situation. If it hasn't she has to decide whether to have a stoma or continue persisting. She is utterly petrified of having a stoma but the alternative could take years for her to be completely healed. Even then other abscesses may appear. The doctor thinks it's time to give her bowel a rest. She thinks a stoma will put me off her but nothing could be further from the truth. She is absolutely gorgeous and even when she's is at her lowest points I still see that girl I fell in love with in her eyes. I know deep down that a stoma will give her a better quality of life but I don't want to force this decision onto her. I want her to make the decision, I'll be there to help her wrestle with it. Her aunt has Crohns and also has a stoma. The aunt told her about it bursting and leaking and this is what is frightening her most. She keeps asking what will happen if it leaks over her dress on our wedding day.
She's also worried about starting a family if she gets a stoma. We both absolutely love kids, all our friends have kids and we've both started to get very broody. I've tried doing a bit of research on this and have read that a stoma will mean having to give birth by Caesarian. If this is the limit of the drawbacks of pregnancy with a stoma I think we could deal with that.
I'm sorry, I'm rambling on a bit here and I'm sure I sound selfish in asking about support for spouses. My fiancée has her own Crohns support group so I know she will be getting great support from that. I just want to know what is out there to help me to help her and also what other posters experiences of stomas are and what pregnancy with a stoma is like.
Thanks
Seamus
I've been with my fiancée for 7 years and we get married a year from now. She was diagnosed with Crohns 5 years ago and the past 2 years have been completely hellish. She had part of her bowel removed 18 months ago and has 2 fistulas which have bled almost constantly for 2 years. These fistulas are held open by a stitch to help them drain but they have left her in such incredible pain that she can't sit properly and has been unable to drive her car for 2 years. We no longer have a sex life as the pain makes it impossible. After 12 months off her work on sick leave she was dismissed on medical grounds.
The reason for my thread is to ask what support there is out there for spouses of those with Crohns. My fiancées recent surgery, where they tried to flatten one of the fistulas out more, has left her almost bed ridden and I am seriously worried about her wellbeing. She keeps telling me to go and find someone else who isn't broken but I will never do that. She's a lot more philosophical than the girl I fell in love with and her personality in general has changed alot in the last 2 years. She gets upset very easily and I'm not much good when this happens. I don't know what to say and just end up cuddling her and telling her everything will be ok.
She has to go back to theatre in 2 to 3 months so they can see if the recent surgery has improved the situation. If it hasn't she has to decide whether to have a stoma or continue persisting. She is utterly petrified of having a stoma but the alternative could take years for her to be completely healed. Even then other abscesses may appear. The doctor thinks it's time to give her bowel a rest. She thinks a stoma will put me off her but nothing could be further from the truth. She is absolutely gorgeous and even when she's is at her lowest points I still see that girl I fell in love with in her eyes. I know deep down that a stoma will give her a better quality of life but I don't want to force this decision onto her. I want her to make the decision, I'll be there to help her wrestle with it. Her aunt has Crohns and also has a stoma. The aunt told her about it bursting and leaking and this is what is frightening her most. She keeps asking what will happen if it leaks over her dress on our wedding day.
She's also worried about starting a family if she gets a stoma. We both absolutely love kids, all our friends have kids and we've both started to get very broody. I've tried doing a bit of research on this and have read that a stoma will mean having to give birth by Caesarian. If this is the limit of the drawbacks of pregnancy with a stoma I think we could deal with that.
I'm sorry, I'm rambling on a bit here and I'm sure I sound selfish in asking about support for spouses. My fiancée has her own Crohns support group so I know she will be getting great support from that. I just want to know what is out there to help me to help her and also what other posters experiences of stomas are and what pregnancy with a stoma is like.
Thanks
Seamus
Don't try to fix everything at once, we're all in this for the long haul. Good luck.