Compassion fatigue?

What was he like before the surgery?  Was he toddler-like before he had the FAP?  Is he taking any meds right now that might affect mood/personality: opioids, steroids, etc...  Also, the anesthesia given for surgery really fucks with people and can take many months to get out of the system.  It sounds like he is depressed and miserable, but if he wasn't a depressed person before, he (and therefore you) may be dealing with the effects of these very intense medications.

Either way, it can wear you out.  Maybe you can take a little vacation by yourself, or something, and if necessary, get a friend or sibling to look after your partner just for a while.  Compassion fatigue is real and nothing to be guilty about.  Take a break if you can and take care of you!

just thought id point out @Sara Marie fap is not acquired at any point. us fap folk are born with it unlike uc folks who develop the condition in their lifetime.

len

@Len78 Thank you for that info!

I went and looked up "FAP" on the internet and got lots of info on male masturbation.  And a little on actual FAP.  Interesting what people come up with. 

I think the root of the problem is that he's frustrated to not be back to "normal" yet, or a tolerable version of normal, and I'm frustrated watching him struggle but not being able to do anything about it.  I went to every appointment, researched what questions to ask, helped with every equipment change when he had the ostomy, learned how to do wound care, and offered to cook him anything under the sun.  I've ordered medical supplies, made menus, reworked schedules and offered support where it's possible, but I cannot take the meds for him and I can't take the pain away and I can't force him to ask for help from his doctors.  I feel like I'm walking a fine line between caring and nagging...

I get it - when going to the bathroom is uncomfortable, you try to limit your foods and not overeat.  And when you eat less and do less physical activity, you're not as hungry.  And when you're not hungry you might skip a meal here or there.  And then boom!  Now we're in "hangry" territory, which I have to admit I'm pretty familiar with.  But even taking that under consideration, this food aversion he's developed is not getting any better and he's already lost 45 pounds.  When is enough actually enough?

The only other person we know with this is his mom, bless her, who had her surgery 30 years ago so she says she can't remember how long it took her to get back to feeling better.  This is the same woman who wanted to get him Taco Bell the day after we got back from the hospital so.... nope, not taking nutrition advice from that department, LOL.

I want to nudge him (shove him?) in the direction of talking to other people so he knows he's not so alone in this.  Maybe it'll have more of an impact coming from someone else.

Cheers,

Julie

It sounds like he's feeling depressed and that can definitely weigh the whole household down. I also understand not wanting to see doctors after such a major surgery. After all, they were supposed to make him feel better, not worse.

Maybe he could join this group and just stalk it for a while for information? He doesn't have to share, of course!  You could look up "FAP" on this site and just leave the search results open for him to see if he ever looks at the computer.

There are also some herbs that are pretty safe that might calm down the mood like lemon balm, chamomile, some people like st. John's wort or kava-kava. Lots of those things come in a tea form, and it would probably be good for him to get more fluids. There are a ton of things people can do to calm down the digestive system but they are different for different people, so it takes experimentation. The people with FAP in particular might provide some needed commiseration and tips for what worked for them when healing from j-pouch surgery.

As a person who lives alone (and damned proud of it,) I eat and drink whatever I want. I may pay the "price" later, but that's for me to figure out my tolerance. Also, I take zero medications except for one generic (from Costco) probiotic a day.

My advice, leave him be. You cannot control him. You can only control your reaction to him. Perhaps, you perceive him to be on a self-destructive path... But, it's his Journey and he needs to figure it out himself. I'm sure you will be be there to support him when he asks for support.

FYI: I only leaned on support when I wanted out of whatever hospital/SNF that was holding me hostage, unless I had " help at home." Friends and family would rotate for a few weeks until I was able to support myself (through illness and injuries.. See my bio.)

I truly appreciated my friend who would tell me when I was being difficult and a pain in the ass. She also supported me when I needed to take steps (like learning to walk, drive, clean, etc,) to improve my self-sufficency.  When you have a friend who tells you like it is... You have found a "true" friend!

Reflection time: Ugh, there's nothing worse than a bossypants know-it-all who isn't either A) your actual boss or B) someone with firsthand knowledge of what you're actually going through.  And in this scenario, I am neither.  Maybe that's a factor as well; I know it's annoying if someone offers you unsolicited advice and maybe it makes you more prone to digging in and doing the exact opposite just because.  I will absolutely still intervene if any symptoms start to become alarming as opposed to just annoying, but it could be time to start a more silent campaign.

For now, I'll eat when I eat and I'll cook what I cook and always travel with backup meds in my purse in case we're out too long and they're forgotten at home.  I guess "compassion" is the wrong term for what I run out of some days.  Patience?  Absolutely.  But trying to make things better for the person I love the most?  Never.

I just found out that my friend died on Saturday morning. He went to bed like usual on Friday night and on Saturday morning his wife couldn't rouse him. He probably thought Saturday would just be another day. None of us know what day will be our last. I don't know why I'm writing this here. I guess it's just something to consider. For me, it helps me keep in mind the big picture and put little annoyances aside. I'm not trying to simplify or minimize what you're feeling with the fatigue at all. I'm just sharing because I'm thinking about it, and I'm sad. My friend wasn't even sick that anyone knew of and in his early 50s. This is something I worry about with my own partner, who is not sick. He also has this worry about me. When we wake up in the night and can't hear the other breathing, we both sometimes have the thought that the other could be gone. I guess we're at that age. Anyway, thanks for listening/reading!

I’m sorry to hear about your friend. I agree with everything you said on your post. Please take care.