fight with parents about my colon, so upset

tonight was horrible. my parents got very angry about the fact that make jokes about my colon--or lack thereof--in front of family friends. for me, humor is a part of the healing process. they feel it is inappropriate for me, not not make jokes about it would be like the white elephant in the room. basically, they are embarrassed by my situation. i have tried to explain that making jokes is like therapy for me, but maybe i shouldn't. they think it makes other people uncomfortable...

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katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
on antibiotics while undergoing further testing by doctor
will start VSL #3 when antibiotics are done.

Katie - keep that sense of humor - if close family is uncomfortable with it just be sure to keep it within yourself the way you look at things and cope - hopefully your close friends will be able to roll with it with you. As disheartening as this can be sometimes your humor and outlook is what really helps to keep you going and keeping your sanity. I see it with my husband with me and our support network of friends.

We are much older than you and your parents - when you've gone through so much in life and dealt with so much, things do take on a different perspective. So many people take things far too seriously. I am sure it is because of their love and concern for you and not understanding this accounts for their discomfort too.

As bad as things have gotten and as stubborn as this is insofar as a successful remission so far, my husband truly appreciates the fact that he is somewhat functional, has good and bad days, but there are so many people who are in worse shape that he has such sympathy for which helps him cope even easier. Kind of odd for some to understand but it's what gets him though the really rough spots. His sense of humor by and large is usually there in the forefront. (Some days I can hear and sense the frustration but that's the human and normal side of him that comes out every so often too.)

Take care Katie.

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60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

thank you all so much, last night was really rough and your words have been a great relief.

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katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
on antibiotics while undergoing further testing by doctor
will start VSL #3 when antibiotics are done.

At 48, I have so many things falling apart that I have to laugh at myself, and do so on a regular basis. That puts others at ease with it too, and hey, everyone has something....might as well have a sense of humor about it, after all stress is the worst thing for us...right? I've always joked to others about myself because I can be silly and also a huge klutz....but I'm loveable too, hee hee. I think attitude is everything!

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Carol

Remicade - will have my 18th infusion on September 5.

i understand what you are saying and i am glad to have another perspective (put more better than my parents did)

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katie
22
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery

VSL #3
Flagyl to slow gastric emptying

Great advice, I've not even considered some of them. Humour is a touchy subject to be sure.

It's a way to say and talk about taboo subjects....it's also a form of passive aggressiveness and bullying under the guise of "joking".

I think if we do at least admit how we really feel to others in there somehow...it's easier for them to wrap their heads around the situation.

Even in this forum, some cannot accept the joking or words we use...each is always in another place. We all learn...

Birdiem...your parents, I'm sure, feel the situation is very serious and have passed those feelings on to family and friends. You come along and make light of it. That's a way for others to maybe think your situation isn't as serious as your parents have made it...therefore, they may not be taken seriously either.

They have an emotional investment in your well-being and health as well as you do. I think you're handling it well...but you don't always have to make others feel OK about it...they'll eventually get to the point where they'll accept your humour.

I have a sneaking suspicion that if your parents were always making jokes about your colon/health, you'd be hurt and upset that they weren't taking it seriously...but they're not...so, maybe you should ask them to make a joke once. Tell them you know it's hard, and all the feelings that go with it are what you feel as well...it would be more difficult for you to function with all the hurt "out there" than with humour.

You do have a great sense of humour...but not all have the ability to receive it as easily as you hand it out. You could end it with..."in all seriousness, it's difficult, but at least it hasn't robbed me of my sense of humour. If I do lose it, I'll be depending on you all to be making the jokes"

...we all struggle no matter from what perspective.

quincy

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As others have posted above - not really realizing the extent of your humor - if it is passing humor and not too indepth or graphic that should not be too embarrasing for others. However I bet your parents have made others aware of your suffering (and theirs) and just maybe if you give off a certain impression it may make it appear you are not in such bad shape maybe???

Since so many out there just do not have a real good understanding of this and think it will pass or you're just going through a rough time I think the advice of Heather is on the mark.

So just go slowly with those more fortunate than you not to be plagued with this. Certain people and their personalities will get more comfortable with this over time as it is probably an adjustment for them too not really knowing how to behave around you too.

In the beginning for my husband so many friends not really aware of UC and all their "good intentions" and "unsolicited advice" was really bugging me...........that has been greatly reduced and they know and realize and respect that we have a doctor we trust, trying different meds to see which one will be the one to make the difference, going to a higher specialized place, have this support network at Healing Well and just taking it day by day as this is not an easy fix. Thankfully the advice and third degrees have stopped and now it is more support and understanding for which we are quite appreciative of....especially since none of them have MD after any of their names.....lol.

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60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

Q I have pretty nice pair of size 7 boot for you to borrow anytime ;) I use it all the time as well...I can be quite blunt at times and not realize it!

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My family laugh at the size of the Colazal capsules I have to ingest. As long as it's not offending you, then there should really be no problem with making a joke out of it. A bleak outlook would be worse, wouldn't it?

I'm chiming in alittle late but I can see how it would be uncomfortable to others to feel to "have" to laugh with you no matter what they actually think.

Sure, it's good to joke about it to other UCers but to a healthy person they may not understand your point of view and just feel like they should just go along with it, so it's not really all that funny , they're just trying not to upset anyone. Basicaly a laugh every time sorta joke, no matter what the punchline is because you have to.