Spouse with Ulcerative Colitis

[uc2013]

Hi there,
So I am new to all of this, but I figure that I might as well try this out.
My boyfriend was diagnosed this past winter with ulcerative colitis, he has been 6 months on Mezavant completely symptom free. He didn't have any symptoms leading up to the event this past winter. But our local hospital couldn't properly diagnose him so it went untreated and got worse. He was sick for about 3 weeks. He was very ill these 3 weeks, blood in the stool and lost about 30 pounds because he couldn't eat anything. He was put on prednisone and Mezavant immediately, and was weaned off of prednisone but still on Mezavant.
We have been dealing with a specialist that isn't very helpful trying to learn about the disease so we have been trying to find out all that we can. Yesterday he told my boyfriend he would need to be on these meds for 2 more years. When we asked why, he got a little angry.
My boyfriends goal is to try and live a almost normal life if he can go medication free, he'd like to with diet modification. But I guess my question to the forum is are there any success stories from people that have similar stories??
Any information will help, thank you

 

[Cross-stitch gal]

Hi and welcome

I'm sorry to hear about the frusterations your boyfriend has been going through. I can understand his desire to live symptom free without meds. I know some on here who have been able to go med free and have been able to do quite well. I even have a cousin who has crohn's that takes all natural things and is able to go without meds too. I however have not been that adventuresome.

For a few months after I got married in 2000 I was able to go med free and just take vitamins. But, the drug I was on was sulfasalazine/azulfidine. That lasted a few months and then I ended in a flare and have been on medication ever since.

I too have had a previous doctor that didn't work with me well. It's not easy when you don't have someone listening to you. It may come to that he might need a second opinion if this doctor continues in this way. But, if I were him I'd have someone working with me this time around if I chose to go med free just in case things didn't work out. Good luck on your decision. Please keep us updated on how he's doing. Xxxx

 

[jwfoise]

Hi uc2013.

I'll echo what Cross-stich gal said. I'm sorry for your frustration and I wish you and your boyfriend well.

I've had mild to moderate UC for years. I take Asacol, which I believe is similar to Mezavant, and a probiotic. While I wish you well in the quest to go med free, I would not count on it. UC is a chronic condition; most people have good periods and bad ones, but it doesn't get cured. But I've had no side effects from the Asacol, so it really hasn't been a big deal to stay on it.

You say you would like to diet modification. Have you noted any foods that seem to particularly trigger his UC? You might want to start a food diary if you want to look for such a pattern (I don't particularly have any food triggers, but stress can be a trigger for me).

 

[Smallville]

Everyone has a similar story here and each one is individual. I can't get a stable remission for 3 years but there are people who succeed and live 100% symptom-free for years. You probably know that this disease is incurable and there's always a risk of attacks, but I know a lot of people who live normal lives, get families and kids, go to work and eat pretty much anything they want. Just make sure your doctor is a professional and be around because your boyfriend needs you desperately now. Believe me, it's very hard to be alone in a situation like this. And here's a tip from my personal experience: if the medication doesn't show any visible effects withing the first month, there's no point in taking it.