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Help for a concerned and clueless wife!

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Crohn's Disease
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Posted 10/9/2014 11:57 AM (GMT 0)
My husband has somewhat newly-diagnosed moderate Crohn's that we thought for years was ulcerative colitis that he has been able to manage very well with diet. He is incredibly disciplined and always gets himself into remission during a flare. Well, this time, it's not happening. This past year has really been a struggle for him and it's getting worse. He's only 36 and we have a 2 yr old and 5 month old. I believe the next step per his doctor is Humira but for a man who has been reluctant to even take Tylenol his whole life, that thought is pretty terrifying. And for me as his wife, reading the side effects really freaks me out! Has anyone been in a similar situation and can offer me a bit of guidance? Are the biologics really the way to go for someone this young? Are there any other options? I know at this point he really needs and deserves a better quality of life. But I am worried, at what cost? Thanks in advance. Also any more pointers as to how I can be a good support system for him. He's finally starting to open up to me about all of his issues and I really hope that continues.
Posted 10/9/2014 1:16 PM (GMT 0)
I'm sorry that he's having a hard time right now. We all know how tough that can be. There are other drugs he could try, but biologics are a pretty good and safe route. They have a good amount of success and so the doctors tend to start with them. It's good to be educated, but if you read those side effects on any med, you would never want to take them. I totally get it. There's no guarantees, but I would venture to say a great majority of the people who take biologics never get the horrible side effects. If it makes you feel any better I have been on biologics since 1999 and even gotten pregnant and breastfed while taking them. I honestly feel they're safer than some of the harder stuff like 6MP or Imuran. I completely understand the hesitation in taking a biologic, but I have had good experiences (mostly) with them. My kids are young and these meds have allowed me to do what I need to do to take care of my kids. There are rough patches, but over all the meds have helped me have a good quality of life.

As for being a support, just keep being there for him. Encourage him and let him complain when he needs to. Complaining, venting, crying about it does NOT indicate weakness. He doesn't have to be the tough guy for you. I don't know if he's one of those types, but keeping it all in to be "strong" isn't healthy.

I wish him much health and that you find a med that helps him get into remission. It sounds like you have a wonderful little family.

Stef
Posted 10/9/2014 1:40 PM (GMT 0)
I started on biologics at age 25 (3 years ago) and they have been the best thing for me. I get some migraines and stuff when I get my Remicade infusions, but considering not taking anything would have killed me by now (severe Crohn's), I think it's definitely something to go for.
Posted 10/9/2014 7:50 PM (GMT 0)
Thank you both very much for your responses. @Stef17 have you found yourself getting sick a lot on the meds? With a toddler in preschool and a baby (and the fact my husband is a HS teacher) that worries me a bit - that he would get them sick and vice versa?
Posted 10/9/2014 7:57 PM (GMT 0)
It's a trade-off between Crohn's and meds, and, believe me, severe, uncontrolled Crohn's is a lot more dangerous than the meds.

I'd recommend the biologics to anybody who has moderate Crohn's, because once moderate Crohn's turns into severe Crohn's they are less likely to work. And then you are looking at surgery, which is no bundle of laughs.
Posted 10/9/2014 9:15 PM (GMT 0)
That is such a good question. I have been on biologics as well as "combo therapy" (biologics + DMARDs) and even biologics and prednisone (which is also immunosuppressive). Before I had my kids I was a public school teacher and now my kids go to public school. So... I have found in my experience I get "sick" about once or twice a year with something like a bad cold or maybe a sinus infection. Four times in the last 15 years I have gotten staph (a boil). When I get a cold if it lasts the average person 5 days, it lasts me 10.

Right now I am on 3 immunosuppressants - Stelara (biologic), Imuran (dmard), and prednisone. I wash my hands all the time. I make my kids wash their hands when they come home from school and I always wipe down/sanitize the grocery cart. I try not to touch my face if I'm in the grocery store or somewhere. I use my own pen instead of the one the customer service clerk hands me and I avoid people with colds/coughs/etc. and I don't shake hands with people. I carry a little bottle of sanitizer with me and I even sanitize my ATM card if I have to hand it to the kid at McDonalds or whatever. That probably sounds super neurotic, but I just don't want to take any chances. Then again, there's probably times where I have totally touched my face or put my card away without sanitizing.

So far I've been fine. No major problems. There IS a risk, but as long as he takes reasonable precautions, I think he will be fine.
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