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Helping my Partner cope with my colitis

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Ulcerative Colitis
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Posted 8/27/2008 2:23 AM (GMT 0)
Hi all, its been a long time since I've been on the forum. Good news is my absence has been due to me being in remission and being out enjoying life again (without planning for emergency bathroom stops.. woohoo!!) - my success came with going on imuran and anti-anxiety meds.

Okay, so now, after about a year of being in remission, I've landed smack dab in a flare again. *sigh* Blood BMs, mucous, and 'having accidents' has filled my last few weeks. My GI is on extended holidays until mid september, so I've asked my GP for cortifoam and I'm also being tested for c. diff. I'm sure I'll get the flare under control soon.

Where my challenge arises, and I'm hoping you'll all have some great advise, is in helping my boyfriend to understand colitis from a "partners" perspective. He hasn't been with me when I've been in a flare before, and its understandably concerning and scary. He wants to know what he can do for me, what to say etc... and at times, as we've all experienced I'm sure, I'm a little on edge and not so great at even knowing what I need from someone else in terms of helping me.

So, what do you say? For those of you who are partner, spouse, parent to one of us UCers what do you do? For my fellow UCers out there, have any words of advice?
Posted 8/27/2008 11:19 AM (GMT 0)
Awww BGG, it is so GOOD to hear from you again but I am so sorry that you are flaring! :( I always hope that our regulars that come here and then come up missing are out enjoying life ya know and it sounds like you have been :)

First, you need to have your bf become more educated on the ins and outs of UC. Have him come online and read about it. It is confusing as heck for sure but I feel that if they know more about what it is that you are dealing with then the less scary it can be. My husband worries constantly about me and I can't stop him from doing that. That is just the way he is. I am a "closet" sufferer. I don't let anyone know when I am in pain or miserable but lately I have been getting more vocal. I found that being quiet about my suffering that it scares my family even more. This all came out in therapy with me and my daughter. So I think that you need to sit down with him and tell him what to expect when you are flaring. And that the best thing he can do for you is just be there and offer courage and support when you need it.
Posted 8/27/2008 4:21 PM (GMT 0)
Thanks Red.

I realized that since I've dealt with this for so long, I've alread gone through the highs and lows (emotionally) with it all. But since its new to him, its scary and this big unknown. He wants to do something to help me, especially when I'm feeling really ill or when I'm having a hard time leaving the house in the morning because of frequent and urgent BMs. If poop myself, which is happening regularly at the moment, then I get emotional/frustrated... and he just wants to help.

My biggest fear is that my UC will be the downfall of our relationship... that's freaking me out right now. So I just want to help him to see that, yes its a bummer and impacts life when a flare is present, but that life can still be good and we can still carry on with our plans for the future. But I'm at a bit of a loss of how to do that.

I suggested to him that he come on here and read up on it more from people's perspectives rather than doctors/medical journals. Hopefully that will help.
Posted 8/28/2008 6:24 PM (GMT 0)
What I did with my now hubby was tell him what makes me comfortable when I'm in the bad flares. I gave him small ideas he can do to help like if I have an accident he's great about getting me clean garments ready for when I get out of the shower. I have the messy clothes rinsed and so I don't have the embarassment of him touching my messy clothes to go up and he takes them down the stair to start the wash so I don't have to when I'm exhausted. He then makes what we've come to call "the nest" for me. I have a comfortable chair that I sit in with a pillows all around to lean on or hug to my belly, what ever I need at the moment to get comfortable. Then he tucks me in with this old beaten up worn but completely soft as can be quilt that is cozy warm for me and he makes sure I have a drink. No it's not much to cover me with a blanket when I'm exhausted or throw some clothes in a washer but it does help him to feel like he's doing something to help me when he would otherwise feel completely helpless and worry more.
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