How (Not) to Help

Being sick with UC is hard. And supporting someone with UC is also extremely difficult. It’s not an easy disease to talk about. If you don’t have UC or live with someone who does, it’s a difficult disease to understand or relate to. When someone has decided that a J-Pouch surgery is the best/only option, the instant (and natural) reaction is “there must be another answer.” But, if someones has decided to have surgery, there isn’t. In order to help those supporting someone with UC (or otherwise considering J-Pouch surgery), I offer the following list of helpful, and not-so-helpful, ways to express support:

What helps:

  • Ask about UC and what it’s been like for the person.  One of my persistent and lingering doubts has always been “am I really that sick”?  Talking about my experience over the last few years with healthy people made me realize, “yes, yes I am.”
  • Ask about the surgery itself. One of my persistent and lingering fears has been living with an ileostomy for a few months or the potential that the J-Pouch won’t get me to normal. The ileostomy is psychological. Talking about it (in all its disgusting detail) with friends and family has been helpful (and will continue to be helpful) in getting over that psychological hurdle.
  • Offer your unconditional support. Offer to make food or run errands or visit in the hospital or whatever. I have no idea if I will take folks up on their kind offers, but knowing I have so many people in my corner has been a G-dsend.
What doesn’t help:

  • Don’t suggest alternative treatments or question whether surgery is “really” the only solution. People don’t decide to have their colons removed on a whim. By the time the surgery decision is made, it’s safe to say they’ve explored and exhausted all viable options and have grappled with this incredibly difficult decision. 
    • Well-intended or not, there is absolutely nothing helpful about repeatedly asking about why they haven’t explored some alternative treatment you read about on the Internet. 
    • Prefacing such questions by saying you support their decision or just want “to understand” doesn’t change anything. By asking questions or suggesting alternatives, you’re asking them to defend their decision—a decision they have undoubtedly struggled with (and will continue to struggle with)—and it’s not fair. 
    • If you have doubts or don’t think it’s the right choice, that’s on you—deal with it. But, for the love of G-d, don’t put your fear on the patient. They have enough of their own, and need to go into surgery full of optimism and determination, not cynicism and doubt. 
    • If you have genuine concerns about whether they are making decisions with full information, talk with their significant other, parent, or child—not the patient. Other than that, keep it to yourself.
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One Response to How (Not) to Help

  1. Kristina says:

    Ben – My dad got a J-Pouch several years ago. Please let me know if you’d like to talk to him about how he’s dealt with it. Best wishes, Kristina

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