The Story

[sebelford]

Hello everyone! I'm actually not the Crohn's sufferer, but the wife. My 31 year old husband was diagnosed in March of this year, although we've known he's had it, we just didn't have insurance. He held on as long as he can and was hospitalized 3 days after insurance went into effect. We have 4 children, ages 6, 5, and twin 3 year olds. He suffers a lot, and has a lot of flareups, which is why I'm here. I love him to death, but I'm so tired of seeing him suffer and I know my children worry a lot about him. I need help, and I'm hoping I can get him on here. I want to cry a lot because just hearing him in pain throughout the night makes me sad, and I know he's tired and exhausted but he pushes through it to help support our large family. He's gone as far as passing out at work (he's a mechanic) from being so sick.

So, here I am in hopes of advice, support, and to know that we aren't the only family going through this.

 

[Entchen]

Hi, Sebelford, and welcome. We're glad to have you here.

 

[Dexky]

Welcome Sebelford!! You've really got your hands full!! What kind of meds is he on? Maybe it's time to try something new!! Good luck to you both!!

 

[sebelford]

Welcome Sebelford!! You've really got your hands full!! What kind of meds is he on? Maybe it's time to try something new!! Good luck to you both!!

Yep, there is never a dull moment in my house. It's really hard for my children to understand why Daddy is always so sick, even though I try my best to explain to them that Daddy's tummy doesn't work right, LOL.

He was on Prednisone, which he was weaned off of, and he's been on Asacol for awhile which seemed to work, but then his GI doc switched him to Lialda, and he's had lots of problems since then.

 

[Dexky]

My son is on 6mp and asacol. After our last visit to the GI, he wanted to stop the asacol. When we tried, EJ immediately (though mildly) flared. We put him back on the asacol and it immediately calmed back down. Were there some problems with bloodwork that made him want to stop the Asacol? If it was working without other problems, I can't imagine why he'd stop it. It's such a benign med when compared to many of the others.

 

[DustyKat]

Hi sebelford and :welcome:

I'm glad you have found your way here 'cause it's a great place for support and info and you will be a very welcome addition and hopefully hubby too!

Wow, you sure do have your hands full! When is your next visit to the GI? If it's not very soon I'd be on the phone to them and letting them know exactly what is going on. Be insistent that the new regime is not working.

I hope you stick around...........browse the forums and if you have any questions just fire away. Good luck, keep us posted and welcome aboard!

Take care,
Dusty

 

[sebelford]

My son is on 6mp and asacol. After our last visit to the GI, he wanted to stop the asacol. When we tried, EJ immediately (though mildly) flared. We put him back on the asacol and it immediately calmed back down. Were there some problems with bloodwork that made him want to stop the Asacol? If it was working without other problems, I can't imagine why he'd stop it. It's such a benign med when compared to many of the others.

What is 6mp?
He said it was something to do with Asacol being taken off the market in the near future or something... I'm really not sure, but I think he's going to have to stick with it for now. He finally took some earlier and improved somewhat. He's not cramping near as bad. He's still scared to eat though.

 

[sebelford]

Hi sebelford and :welcome:

I'm glad you have found your way here 'cause it's a great place for support and info and you will be a very welcome addition and hopefully hubby too!

Wow, you sure do have your hands full! When is your next visit to the GI? If it's not very soon I'd be on the phone to them and letting them know exactly what is going on. Be insistent that the new regime is not working.

I hope you stick around...........browse the forums and if you have any questions just fire away. Good luck, keep us posted and welcome aboard!

Take care,
Dusty

Thank you Dusty! He just had an appointment and right now he's on a 3 month appointment schedule so it'll be awhile before he has one.

I read him a lot of posts from here earlier and he was real interested so I have a feeling he'll be posting on here soon. I think it would help him so much to talk to other people just like him and it will help him with his coping skills.

 

[Dexky]

What is 6mp?
He said it was something to do with Asacol being taken off the market in the near future or something... I'm really not sure, but I think he's going to have to stick with it for now. He finally took some earlier and improved somewhat. He's not cramping near as bad. He's still scared to eat though.

6mp is Mercaptopurine. It is one of several names and formulations of Azathiopurine. Here's a link to it in our forum Wiki....

http://www.crohnsforum.com/wiki/Mercaptopurine

I haven't heard anything about Asacol being taken off the market. I hope that's not the case...unless they are doing it because they have found something better!!

 

[Astra]

Hi sebelford
and welcome

I have to agree about getting in touch with GI, he shouldn't have to suffer like this, there are other meds out there that can help, the immuno suppressors like 6mp, and the biologics like Remicade for starters.
Glad you found us, lots of friends here for you, any questions, just fire away, always someone here to help
lotsa luv
Joan xxx

 

[sebelford]

Hi sebelford
and welcome

I have to agree about getting in touch with GI, he shouldn't have to suffer like this, there are other meds out there that can help, the immuno suppressors like 6mp, and the biologics like Remicade for starters.
Glad you found us, lots of friends here for you, any questions, just fire away, always someone here to help
lotsa luv
Joan xxx

Thank you so much!

 

[mrjoe]

wow I'm sorry to hear this.. You have yourself one strong man there, but he will need your help to get through this and get better.. I hope he gets the medications he needs and gets better fast!

/joe

 

[sebelford]

wow I'm sorry to hear this.. You have yourself one strong man there, but he will need your help to get through this and get better.. I hope he gets the medications he needs and gets better fast!

/joe

He started back on his Asacol instead of the Lialda and has been fine since!