Fiance has UC...(New member)

[DCH11]

Hi my name is Dana and Im 18 y.o. My fiance just turned 21 and has a severe case of UC. He was diagnosed a year ago. At first we never knew anything was really wrong except he would go to the bathroom about 12 to 13 times a day and he would always say his stomach hurt so bad he had to sit down and sometimes just scrunch up in a ball. Then it started to get worse and he began to bleed all the time. It hurt me so bad to see him like this.

To make a long story short his doctor ended up diagnosing him with UC. So the first thing was the Prednisone. He would take up to 40 mg a day and did fine. When he tapered off to 20 mg he would start to bleed again. The doctor told him that taking the Prednisone all the time could worsen his long term side effects so he went to Mercaptopurine. It seems to be helping ok but he still has flares when the med will not work. He is still losing weight and cant get the nutrients he needs and it really scares me.

Sometimes i just sit here and cry because i wish there was some way i could help him. Dont get me wrong i will always be here for him. My mom helps me a lot with keeping up with all his stuff and she is also a nurse. Her boss is very well educated and he said he wouldnt be surprised if he had to have the surgery before he was 30.

But also i am new to this thing and kinda confused on how all this stuff works so if anyone will help i would greatly appreciate it!

Thanks, Dana

 

[mommy1st]

Hang in there what he really needs is just support I have Crohns disease and my husband has known about it since we met he knows that sometimes I just need to deal but he is always there when I am ready to talk It might seem like he's never going to get better but believe me better days are around the corner My husbands cousin has UC and he had his colon removed but now he said he would do it again in a heart beat So tell your fiance that you're worried and see if he wants to get a second opinion there is so much information out there that it can be scary but good luck and I know that it might be hard but don't treat him like he's sick and going to break He knows he's sick and just be understanding
best wishes

 

[DCH11]

ok thanks Its just really hard because i know his parents care about him but they just dont understand that you know he needs to be taken care of too. He cant just get up and be on the go 24/7. But i just wonder is it better for him to go ahead and get the surgery or just kinda wait it out. I just hate for him to be in so much pain. But he had a doctors appt in the morning so i think im going to just keep the door open and just ask about it.

 

[jed]

sometimes the difference between UC and crohns is very hard for the doctors to tell what it is.

but if it is UC, and it goes to surgery, he gets cured. UC only attacks the large intestine.

good for you with helping him with this, partners can often be the greatest source of relief when your feeling crap.

welcome to the forums

 

[DCH11]

Thanks you all. We went to the doctor today and he put him back on the prednisone. We also made an appt to see the surgeon about possibly in the future removing his colon and then reconstructing a new one from his small intestines. Can anyone tell me about this? Im gonna look into it and see what i can find out. The rest will have to wait til we talk to the surgeon.

 

[mommy1st]

Thanks you all. We went to the doctor today and he put him back on the prednisone. We also made an appt to see the surgeon about possibly in the future removing his colon and then reconstructing a new one from his small intestines. Can anyone tell me about this? Im gonna look into it and see what i can find out. The rest will have to wait til we talk to the surgeon.

That is what my husbands cousin had done, he had an ostomy for a couple of months until he healed completely but then had it reversed and he looks great He was having an awful time getting everything under control and when he mentioned that he wanted to have the surgery I gave him the name of my surgeon and he feels great he had surgery about two years ago and couldn't be happier he feels like he got his life back.

 

[DCH11]

ok. Does he live his life like any other normal person or does he still have to watch what he eats and all that?

 

[mommy1st]

The last time I spoke to him he still watched some things that he ate I know that he couldn't have really hard bread at that time but he ate a ton of food that day and was fine but make sure the surgeon that you see has done the procedure many times before and ask if they could contact someone that has had it done by this surgeon and if you could call them and ask them questions it always helps to speak directly to someone who has had the same thing done by the same surgeon

 

[DCH11]

ok thanks.