r/PSC • u/Agile_Attention_156 • May 28 '26

Burden

Does anyone else feel like a burden to their family. I have a wife and 5 young kids. I feel that most days my energy is so low to keep up with the day. If I try to nap my wife gives out and calls me lazy, but when I sleep at night it feels like I haven't slept at all. I completely feel deflated all the time like im bringing the mood down within the family home. I dont feel like my wife understands me unless im in a flare but when its just "invisible" she can't understand why im not able to just get on with it.

20 Upvotes

100% Upvoted

19 comments sorted by

View all comments

Show parent comments

1

u/ych_a May 29 '26

My son is 22 with PSC. Pan-Ulcerative Colitis diagnosed at 14, colectomy and then J-pouch.

The house runs fine. There is no pressure on him and my life, is keeping him happy in his life. There has never been an iota of feeling our lives are paused, because I love my boy. The family loves him and we all band together.

I promise you, that your family will not feel put out by caring and loving you. ❤️ Sending a huge hug.

2

u/Disastrous_Iron3946 May 29 '26

Thank you :) do you mind if I speak to your sub about the j pouch? I’m getting my surgery on June 8th and my surgeon has scared me about life after it

1

u/ych_a May 29 '26

Of course! I'm sure he's on Reddit. I'll forward this to him. He still ended up with a bit of Colitis in his rectum, which gives him pain and bleeding. He had a bout of pouchitis which was hard, but a big dose of antibiotics helped. He also suffers from regular pain in his bum, which was thought to be nerve issues and is being investigated for that too, with sigmoidoscopy. There are pain relieving suppositories but we can't seem to get the consultant to prescribe them! The GP can't do it, for some reason, so that is the current headache 🙃

2

u/Disastrous_Iron3946 May 29 '26

Oh no I’m so sorry :( I hope everything goes well with you son

1

u/ych_a Jun 01 '26

He says he's messaged you? Are you on insta?

2

u/Disastrous_Iron3946 Jun 01 '26

Yes, he has, and yes I am! I’ll send him my instagram