My opinion is this, Mark’s family even after surgery thinks everything is fine, problem solved, whats the big deal. But now they’ve learned about our community and our struggles through our informal online communication. When we made the blog it was as if lightbulbs just started going off in people’s head – “Oh, Mark is SICK”. Wish we had documented UC times like going to the Drs. and having another and another medicine fail (it takes a lot of medicine failures to get to surgery, as you may know). By documenting the surgery, our friends and family had a way to look and see what was real, there was no longer room for denial there it was, stoma and all. Now, it seems logical to us to think, Mark’s been sick for 7 years, and now he is having his colon removed and that is a big deal. Well, it was a big for his family, but they didn’t have ANY of the emotional tools or ability to cope with what it really meant, so for them it just didn’t exist and Mark let them hide from it as well. But eventually we learned we had to educate them on it in a very bold way.

What was so funny about educating them about meant being honest about things like “Mark has accidents” – I remember Mark was working outside with his Dad and Mark was up on a forklift that I was operating and I had to bring him down – he’d had an accident. I knew by the look on his face. His Dad had NO clue, and was waiting for Mark to come right back, and I said “John, its going to be a while Mark has to take a shower and deal with his clothes, Mark just S**T himself for the 2nd time today” . I would NEVER say something like that before, but I realized they weren’t getting the subtle signals and there was no more time to keep them sheltered- we needed their support and they needed to deal with our reality, as it was their reality as well, their perfect family has some cracks and I was the messenger of the bad news.

What happened as a backlash though was once we shared everything with them, and they couldn’t hide anymore, then we started having to support them. His Mom would call me crying (one call was “I didn’t breast feed him – do think this made him sick?”), and they were WAY behind us in coping with the disease – it was amusing to watch them go through all the phases of realization. I mean we are at year 6 of UC, now prepping for surgery and his family is still asking “Should he be eating that” – hahaha, yeah, if he doesn’t eat that he is going to be FINE – we chose surgery b/c it was the easier option than changing his diet???!!!

My advice to anyone in this situation is to stop being subtle, and get the family on board b/c your support system is going to need their support while they are supporting you through surgery.

Also, I knew his friends wouldn’t really call while he was in the hospital, so I called them and said “Call Mark” and they did but one replied to me “I didn’t want to call I thought I might be bothering him”. What I realized is that unless people have experience with this stuff, they need to be educated on how to help support us through it.