How many husbands are there with active Ulcerative Colitis?
How many husbands are right in the middle of the worst flare up of their lives this very moment…Unfortunately there are too many.
What in the world can the rest of the family do when the “man” of the house is bleeding and in the bathroom all day long?
Are there any answers to these questions?
I don’t have all the answers(if you’ve got some, add them below!), but on a regular basis I receive emails from moms, wives, girlfriends and all the other types of spouses that exist. And it’s super tuff to come up with ideas on how to fix the situation since there’s no easy fix. But there is one person that I know super well, my wife Michaela, who helped me out back in my dark ulcerative colitis years of 2008-2009. I’m sure I would have survived without her, but it would have been absolute hell. I’ll get into the details in a little bit.
I’m learning as the years roll on that ulcerative colitis flares (especially the one before/after the original diagnosis) can come out of nowhere. Maybe there are some symptoms and all, but it’s like a lightning bolt that shakes the crap out of everyone when the sun is shining. “Where the hell did this come from” type of deal.
And come on, who on earth is better at hiding feelings then a “MAN” who’s running the show?
Especially if its just some blood in the toilet bowl, and increasingly frequent bathroom runs, poop splatter all over the toilet bowl. You know what I mean. Seriously, I received an email the other day from a young wife who had an undiagnosed husband who was wreaking havoc on the underside of the toilet seat. I guess he never bothered to do any cleaning(real rare case for guys…) and she was concerned. Her question was along the lines of “Do people with UC sometimes make little blood dots appear around the toilet?…”
BIG FAT YES, yes we do.
So what to do?
For years now, I’ve been a big believer in talking about UC as much as possible, especially with my wife. I haven’t met a spouse yet who is not interested in as many details as possible about their loved one’s symptoms. And that’s super great news. Great news for me, for you, and everyone else who is part of a UC’ers life.
I didn’t always think this way. Oh hell no.
There was a time (damn it was years actually) where I was hiding the true details of my symptoms. And all it got me was a long delay in reaching my eventual diagnosis of ulcerative colitis. But things are different now. And I hope that this will be the same for you if you’re in the middle of a UC story with someone else, and the open communication is not fully there.
6 Things For the Wife to Do:
- Don’t beat yourself up for not having the solution/silver bullet to getting your spouse back to normal
- There’s scientists all over the world beating themselves up, you don’t need to, it’s not your job
- Be open to hearing all the details of what symptoms are like (verbalize that to your spouse)
- Don’t get all your info about UC symptoms from websites like iHaveUC, yeah it’s a kick-butt website:), but get the real details straight from the source
- Some people disagree with me on this, but this is a no-brainer to me, why continue hiding? It’s a stress reliever for the UC’er in my opinion, and the spouse may be blowing things out of proportion in his/her head as well causing un-needed stress.
- As your husband/spouse if he/she is alright with you joining them in doctor visits
- This was one of the best things we started doing
- People with active colitis are not the best at remembering things (especially when on steroids), and if your husband is a push-over and dealing with a horrible GI doctor without saying anything, maybe you will be the reason for him seeking a new doc to work with!!
- Simply ask your husband if he likes his doctor
- If your husband has questions he wants to ask his doctor, write them down the days/weeks before your next appointment
- If you buy the cheap super thin toilet paper…surprise your man with some super soft double ply stuff
- May seem funny, but believe me, lots of time is spent on the throne and some good TP makes it more enjoyable
- And when you go out, do the UC’er a favor and pack a half roll of some fine toilet paper in your purse/bag and slip it to him when he rolls off to the toilet in public. You want to let him know you care about him…if this move doesn’t say that louder than a crazy man yelling in Times Square in the middle of the day…you get the point
- (thx Michaela for doing this:)
- Ask your husband what he thinks is the cause of the disease
- There’s lots of different ideas to this, and although you don’t have to agree with what he thinks about this idea, it’s probably a good idea for you to understand his thinking clearly. My wife comes from a very different culture/country and we for sure had some conflicting views on this during the early days, and that caused some unnecessary tension. YOU DON’T have to agree, but understand where he’s at is key.
- Ask your spouse if he’s cool with you talking about your feelings and the whole UC thing with your friends
- (Hey Husbands, if you’re willing to talk about your UC with your wife and let her in on all the details, GREAT JOB to you. Way way cool. But, go the extra mile/1.4 km and tell her its totally fine if she wants to chat with her girlfriends/family about her thoughts/concerns with your Ulcerative Colitis. This stuff is a big deal, but I am yet to hear of a single person who had any negative long term consequences of their wife talking about the UC stuff with friends/family. Seriously, get over it. You won’t have to worry about people always WONDERING what’s up your ass, and why you’re not here or there. Why you’re not able to make it sometimes to this or that. OR, why all of a sudden you BACK TO NORMAL after such a long time being “sick”
- (Thanks Michaela for telling others my “current status” while I was all jacked up with UC)
More than anything else, keep your head up. Colitis is nasty, it’ll probably make you cry if things get bad, and that’s unfortunately all part of the deal.
But it’s not the end of the world.
Your husband will indeed get back to a normal/great lifestyle once again. You will for sure be able to do all the things that are temporarily on pause. Things can and do get better. There are too many stories written by other UC’ers here on this website that prove just this. But you need to be patient(especially if your husband’s on steroids/prednisone). And you need to keep the hope alive. If your getting into the conspiracy theory side of things and thinking the medical system is out to get you, stop right now. If it’s your doctor you don’t like, that can be changed. If you’re taking medications and they are not working, there’s other options like diet for example among other things. If the symptoms have been going for so long and you being told that surgery is your husband’s only option, read the surgery survey data. Husbands (and wives) are notorious for not ever wanting surgery. I get it. I’m still kinda the same way. But after years of learning more about other UC’ers positive experiences with surgery, the whole idea is much more at ease in my mind. So get your learn on!
I wish you the best, and the same for your husband.
PS: if anybody has some other/better ideas for “what the wife/spouse is to do” question, please add them in the comments below.