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Pfffft, family taking it personal

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Posted 5/9/2014 2:09 AM (GMT 0)
So my hubs is going to visit some family this weekend and I'm staying home (again). They live several hours drive away in a remote area. I'm just not ready to test my sphincter control that much right now! Seriously, I get anxious driving for more than 15 minutes in the city-where there's bathrooms all over! Well, they're throwing a pity party for themselves, asking if its because I don't like it over at their place or something eyes Seriously??!! How about I don't want to crap my pants and set back the progress I'm making with my therapist about all this g-darn horror. How about the fact I can't even bring myself to drive with my best friend, anywhere, because I'm so terrified of crapping myself in the car. It's a mental battle just to make the short drive to work, to sit through a board meeting, or to even have friends over to my house for dinner. But oh, lemme guess "you don't loooook sick" mad so angry, so hurt and so effing frustrated.
Posted 5/9/2014 2:14 AM (GMT 0)
Have you tried saying these exact things to them without it sounding mean or sarcastic? Maybe they need to hear the gory details of your current life situation. Your Hubs should also be able to explain to them why you're not in the mood to travel long distances right now. If he can't man up and defend you that's horrible.
Posted 5/9/2014 2:22 AM (GMT 0)
No way I'd be able to explain it to them without being sarcastic and or rude, so I don't. My husband explained to them, again, why I can't travel right now. I am not sure how graphic he got with them, I'd rather not know. It's just so upsetting to have to miss out on things I WANT to be doing and yet STILL have them guilt ME for it.
Posted 5/9/2014 3:15 AM (GMT 0)
graphic is just perfect.

they can handle it since they're they ones who are expecting you to make it all about them.

go for it.....but without all the expletives I'd be throwing in there. And they're ears would be ringing for a year if I told them.

You guilt yourself...keep that thought. It's your boundaries and you not wanting to travel or crap your pants. They just don't understand....end of story. Once you tell them, they'll have to deal. It's out of your hands, and no guilt.

That's how I work now...anyway.

And get your husband to buck up his vocabulary to support you. no icing on the crap cake.

q
Posted 5/9/2014 3:35 AM (GMT 0)
Oooooooo family ...

My parents are my worst stress! I had 6 months therapy to learn how to not guilt myself. It can be done.

Last fall before my folks left for the winter (praise the Lord!) my mother was writing down the name of the med her friend is on; remicade ... Ugh
After trying to feed me prime rib steak the week before!

I don't know if I will tell her I don't have UC, I think it will throw her in a spin! and I will get the "you never tell me everything"

Ok, I gotta stop or I will write a book!

I do know if I try to explain how it is to my mom, she tries to fix it. This doesn't help me.
Posted 5/9/2014 4:19 AM (GMT 0)
That's rough, a double whammy really!!

Not sure I can say anything to make you feel better, but I can sympathize, and tell you that I don't believe people, including family, really understand the mental stress that this illness brings with it, it can isolate you. I agree, and feel like your hubby needs to explain things firmly and clearly to your family, mainly so that they are aware of how bad they are making you feel with their behavior...
Posted 5/9/2014 12:32 PM (GMT 0)
Your husband really should talk to them and demand more respect for you. If they still make you feel the guilt trip then he's not getting through to them. If I was him that would really tick me off and I would lay down the law and stop visiting them myself it that's what it came down to.

On a similar theme, when I was a young teenager I used to tell my parents "F... you" when I was mad at them. It wasn't long before my mother had had enough and told me what that really meant (AKA:the birds and the bees). What a shock, and, I never said that to them again!! That really shut me up.
Posted 5/9/2014 2:00 PM (GMT 0)
i am another who can relate to missing family stuff that you actually want to do, and them thinking there's some hidden reason behind you saying no. My family is starting to get it, but sometimes i still get comments like, "well, if it's because you don't want to drive, we can pick you up" or "is there another restaurant you would rather go to?" or "we could just stay home and you can come over here for the day". Umm....NO, crapping myself in someone else's car is worse than my own, it makes no difference to me what restaurant i'm in when i get sick and need to leave halfway through the meal, and i do not care to be in a place other than my apartment, ALONE, when i am running back and forth to the bathroom all day and my guts are making loud noises, etc. They don't need to see that show.

Hopefully they will someday realize that when you say you cannot travel because of your illness, they will know you really mean, you cannot travel because of your illness. That it's not a secret code meaning you don't like them or whatever. Guess they are a little insecure.

My family is slowly catching on. I guess at least for me, details help them understand better. Now when i pass on an invitation, i just have to say i don't feel very good. End of conversation.

Keep trying and get your husband to try a bit harder.
Posted 5/9/2014 5:43 PM (GMT 0)
I'm all for being truthful and the truth is graphic. Too many times I've seen UC websites that gloss over how devastating this disease is...smiling faces to boot. I used to hide everything and now I'm so frustrated by the lack of knowledge or concern for this disease (because it's not cancer) that I just tell the truth. So to me saying "would love to come but I have this very real fear that I''ll soil myself" is truthful and blunt.
Posted 5/9/2014 6:19 PM (GMT 0)
Perhaps they can't understand why you are "well enough" to go to work and to have friends over for dinner, but you are "too sick" to visit them. They may believe that visiting them would require less from you than those other things, as you wouldn't have to do the driving or do any of the work (meals etc) while you are their guest.

If you put yourself in their shoes, that's not an unreasonable reaction. People who don't have UC have NO IDEA what you are dealing with.

I think it's always best to have a direct conversation, instead of having someone else (husband) relay the information.

If you don't have a good relationship with them in general, then they'd be more likely to think you are making up excuses. Is this a trip you'd be excited about if your UC wasn't acting up?
Posted 5/9/2014 10:01 PM (GMT 0)
Not to try to show off or anything, just giving you a personal perspective from miss embersglow

but I am either driving or flying to Pittsuburg at the end of the month. Probably flying.
So that's about 5 hours in a plane.

I know I will very likely poop myself.

I know that driving to my Grandparents tomorrow, I will likely poop myself. (30 min drive)
Or at least that while I am there... I will have to run to make it to a bathroom... and they will be horrified and confused and disgusted... because they are SUPER proper. And haven't spent time with me since I got sick.

I literally crap myself almost every day... but I refuse to let UC keep me from experiencing life. I just pack extra Depends and be happy I have the energy to leave the house these days.

I know you are working with a therapist to get through your Incontinence Anxiety... but just know... there is a young lady in Wisconsin, thrifting with poop in her diaper, crapting in a flower pot in her garage, and having her husband help clean up poop dribbles in the hall on the way to the toilet....

**hugs**
Posted 5/9/2014 11:38 PM (GMT 0)
Very good advice from all of you, thank you. I can see that I'm not being firm enough, or blunt enough. But I'm also letting UC run my life sad that parts on me. I struggle so much with opening up to people in general, and the thought of opening up to someone about my crappy bowels and the likelihood of pant crapping? Oh god, I just can't. Not yet. I don't know what the answer is. I know I can't just keep opting out of life because of all the "what ifs" cry I guess all I can say is "I'm working on it"

Thanks for listening.
Posted 5/10/2014 1:11 AM (GMT 0)
Have you changed your meds? if so, maybe update your signature.


In truth...if I crapped my pants every day, my colon would be out. Not something that would cause acceptance in the least...and that includes stopping at the side of the road or searching for bathrooms, etc. I couldn't do it, and that's with 100% certainty.

So, if one doesn't have anxiety about it....great! It would destroy me mentally to be doing that,

Maybe I don't care about making that an every day aspect of my life, and I certainly wouldn't be crapping in my car, on the plane or on the way to grandma's..

So, find your balance in what you're willing to tolerate.....

Now....what about adding Imodium to the mix?

q
Posted 5/10/2014 2:25 AM (GMT 0)
Hey Q,
My sig is up to date. Honestly, symptom wise I'm doing really well! I wouldn't say I'm 100% yet but my worst days now are 4-5 solid BMs a day, but most days it's just 1-2 solid BMs. My biggest struggle right now is mental. Having had the accidents, in the car, I'm now just paranoid about it happening again. I'm working on getting my brain to catch up with the healing my guts are doing, but seriously, it's just not happening as fast as I would like. I want to go places, I want to do things, I just...can't. It's really difficult to explain why. It's as if my fear of it just paralyzes me. I am on anti anxiety meds and still seeing my psychologist. I truly am trying everything I can think of. I guess it just takes time, and I have terrible patience. I understand that many of you are going through worse times than me, so feel free to roll your eyes at me tongue lord knows I roll my eyes at myself.

Thanks for being here.
Posted 5/10/2014 3:54 AM (GMT 0)
Just as a random thought from me... I've somehow managed to flare much of the last 11 years minus the last year or so, off and on... while being a truck driver. Can you imagine the agony at times? lol...

I've appreciated groves of trees, corn fields and river banks more than you can imagine.

Also, a few different approaches:
1. Don't eat much when travelling. When I was pretty sick I wouldn't eat much until later in the day, in order to keep my guts quiet as I worked.
2. Lomotil: has always helped slow things down for me.
3. Giving myself almost an hour of going to and from the bathroom several times to empty out before I left.

Believe me, I've lived through tough flare times. I did many online dates (which eventually led me to my wife!) where I'd meet initially at a coffee shop or deli type place. They were so nerve-wracking due to my flares that I'd end up in the bathroom before many of the first meetings. One girl texted me asking where I was as I was sitting on the pot at the place. Not sure what I did in that situation, lol.

Somehow I've gotten better. Even on Remicade I wasn't good for the first 10+ months, urgency-wise. Then I tried Cymbalta which was amazing in terms of gaining control of my guts. That unfortunately couldn't be tolerated due to side-effects (ED), but even after I went off it I've done well. Maybe it was extra healing from Remicade, or having my wife in my life (dating at that point)... but something helped. I rarely think about my gut much at all now.

It did take me a while to realize I didn't need to sit on the pot half an hour every morning anymore just as an insurance policy against leaving!

Good luck with the relatives... stand your ground!
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