Advice needed!

advice needed!

hi

i don't actually have crohns myself, its my girlfriend who has and i am need of some desperate advice as i fear i am losing her.

We have only been together 5 months but we are so much in love we both know this is it.

She is 21 and got diagnosed at a very young age, about a month ago she had a major flair up and had to be admitted into hospital.They thought it was a water infection so she got sent home with antibiotics.

2 days later the pain came back and it was unbearable, i never forget seeing her like that and there was nothing i could do.

This was now the start of her 4 weeks in hospital.

They sent her for a ct scan in which they found the crohns spread quite heavily into her large and small intestine, she would have to have an op to remove part of it. The news was devastating as we never expected that. She had to be fed through tubes which went into her neck it wasn't a nice thing. I went to see her nearly everyday to keep her company and she confided in me about her fears of death, not being able to have children and the fact she might have to have a bag. She put a huge front on with everyone else but everyday i could see in her eyes she was terrified. Her family told me it's not too late to back out now that they would understand but i told them i loved her and i'm not going anywhere. She had her operation and the great news news was it wasn't as bad as first thought but she woke finding she had to have the bag. But she was so happy she can have her life back and not let crohns affect her anymore that she didn 't care and they only said it might only be for 8 weeks and they can reattach the stoma.

We were better than ever she got used to the bag but everything has changed.

The bag wasn't sticking properly and started to leak in the night her confidence levels are at an all time low. She is fine with everyone but me, in everything i say or do. We just went away for the weekend as i thought it would be good to get away we had a lovely evening where we talked about starting a family. Then overnight the bag leaked again and i could tell she was so embarrassed but i tried to assure her that i dont care. she told me she is acting like she is fine but is so worried if she has the bag for life and that its still leaking she was crying all weekend and just being plain horrible she told me she didnt believe that i was going to stay with her . I cant imagine what she is going through but i dont know what to say or do, she is now totally ignoring me.

I hope i dont seem selfish i just want her to know that i will be there for her but she wont talk to me or tell me whats going on and why she is ignoring me.

If any one has been through this what do i do?

Hi Sawyer and welcome to the forum. First, I want to congratulate you for taking the initiative to come here and try to help your girl friend. Not sure what to tell you in terms of emotional help since I didn't have that particular problem. I am sure, though, that others might be able to help you in this area.

However, I got the bag rather unexpectedly after emergency surgery and had the same problems; mentally dealing with the fact of the bag and physically dealing with the constant seeping and leaking and the loss of confidence to be able to ever socialize again. I labored through that part pretty much by myself and tried every appliance sample that was out there until (after 5 months) I finally found a system that works well for me. And, yes, for me too this was a major part of overall improvement. Do you guys have a stoma nurse? She/he might be able to help with the samples and all the tips to get a good seal, depending on the size of the stoma as well as what kind: Ileo or Colo. To give you more precise pointers, it would help if you could clarify which kind she got. All the major manufacturer are really happy to send samples and they usually arrive pretty quickly.

Also, many ostomites are depressed and take anti-depressants to help deal with all the changes and not despair completely.

Most of us also need some space when dealing with a flare or the aftermath of such a major surgery, so (probably) don't try to hard to get close to her and just BE there when she needs it. You are both pretty young and I can understand that she might think that you won't hang in there for the long run and distance herself from the next (expected) blow.

I am not sure that I helped all that much but you are doing great and she is very lucky to have you. Probably you can get her to get on the forum with you and search some topics that apply and read some of the stories of fellow ostomites.

Good luck, hang in there and ask away -- there are a lot of phantastic and very helpful peeps on here. :thumleft:

Hi Sawyer and welcome. First off, good on you for being so supportive! You're great!

I'm sorry you and your girl are having to go through this

Be sure to check out our stoma forum and ask any questions you might have. I bet the folks there can related a lot.

I wish you and your girlfriend all the best going forward.

*hugs*

Welcome Sawyer! First off, your GF is very lucky to have you. A support system is just what she needs right now, and you sound like you are extremely supportive. Though she may be embarrassed and push away a bit, continue to push back and give her the love she needs.

As far as the leaking, I don't have any first hand experience, but many people stuggle with leaking early on. Here is a thread you may find helpful:

http://www.crohnsforum.com/showthread.php?t=17176