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.

I went to see a comedian once at a comedy club. He had MD (Muscular Dystrophy) and he would make jokes about his condition. Many people were afraid to laugh at his jokes because we were brought up to not make fun of handicaps because it is considered inappropriate. The comedian then stated that it was ok to laugh with him as long as they don't laugh at him. Maybe you can use this as an example for your parents?

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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

I agree that humor is a great healer. I'm sorry your parents don't see that. My friends, husband and I joke about my colon all the time. My best friend and I even call my UC...EBD for exploding butt disease. To many that probably seems crude but it helped me to laugh when i was fist diagnosed.

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 20 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

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.

yeah, I get silence for my colon humor also..

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Male 36yrs old. Indeterminate Colitis 6 yrs.

100 mg 6-mp
Lialda 2 a day

Protonix
multi vitamin

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.

Playing devil's advocate here, but it can be considered inappropriate in social situations to talk about intestinal problems and it does tend to make alot of folks uncomfortable. I think humor - and explicit detail - is better reserved for places like this, with folks that understand or with close friends in more intimate settings.

On a different note, I used to dread family reunions. I have an uncle who suffered from UC for years before finally having his colon removed when he was in his 70s. Every time we got together with them, his wife would corner me and grill me about what I was doing that I had my UC so well under control. She would compare my situation to my uncle's and talk (loudly) about enemas and leakage in front of other family members. I found it humiliating. I don't want to be defined by my disease or dwell on the gory details at a family get together where everyone's supposed to be relaxing and having fun.

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Diagnosed with ulcerative colitis spring 1999

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

Katie,

Keep the humor going. It's okay to laugh at yourself once in awhile. Too much of it though could come across to others as self depreciating. Also, as has been mentioned, you want people to laugh with you about your condition, not at you -- which is not cool. You're a human being and deserve just as much respect from everyone as you give respect to others. No one wants to be the "butt" of a joke.

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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thank you for the advice, i really appreciate it. in fact my dad sometimes makes jokes "he calls me his little semicolon" but they seem to want to keep jokes between the three of us. i guess i can understand that...

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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

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

little semicolon...I like that term of endearment...and a good effort of inclusion.

Another UC wife...we don't have MD after our names...just BM..lol!

birdiem...pick your battles, and it's not so bad to accept that in some situations it's not appropriate to have a sense of humour. i've eaten lots of crow....caw-caw! and wish I had the boot attached to my butt to kick my brain in gear before my mouth spoke inappropriately.

quincy

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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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haha, well it is good to know that there is SOMEWHERE i can make colon jokes!!

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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

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?

haha. thanks, i think so :)

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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

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.

Your parents should be happy that you feel well enough to make jokes. Laughter is all we really have with this disease. I make jokes about it all the time. Just keep the laughs flowing.