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Crohn's Disease
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Posted 10/13/2009 7:08 AM (GMT 0)
I'm new here, 19 years old and diagnosed 10 months ago with symptoms starting last summer. I'm on pentasa now and used to be on Entocort for about 4 months. I'm not in remission, but I'm fairly able to get out of bed/eat most days and am a "full time" (but only 3 courses) university student. I feel like I have no energy to do my school work a lot and am feeling stressed! But I digress. These are the things I miss:
-Being able to eat whatever I want, whenever I want (I miss gluten and copious amounts of sugar!)
-Not having to worry about bathroom locations when out and about
-Not being dependent on several medications and supplements at any given time
-Being able to act my age (I'm 19 in Canada and have no interest in going to bars or drinking, or staying out late!)
-Being able to work, feeling independent

What do you miss?
Posted 10/13/2009 7:34 AM (GMT 0)
Hi sickandlucky,

I have celiac disease not Crohn's, but I miss many of the same things you miss, at least the first 3 in your list:

1. being able to eat whatever and not worry about it.
2. not caring about bathroom locationss when away from home.
3. not having to be dependent on so many meds.

But I'm 53 years old, and I work TWO jobs....although I can barely keep my head above water anymore. I don't think I can continue to work forever....but we can't afford for me to go on disability right now. I'm not a student but rather a part-time college instructor and a full-time scientist at a research university.

Oh welll...I know I'll keep plugging away as long as I can force myself to do so.

Best wishes....take care of yourself!
JoAnn
Posted 10/13/2009 7:37 AM (GMT 0)
Well, mostly everything you listed. I was diagnosed when I was 19 years old and had barely just begun the college scene.
I miss the occasional cigarette, Smirnoff Triple Black or a few shots of Stoli's every now and again.
I miss doing my nightly two hundred sit ups (or every other).
I miss being sexually active all day (sorry for tmi, but it's true).
I miss when my heart wasn't heavy.
I miss having friends.
I miss all of the possibilities I had as a healthy, promising young woman.
I miss feeling attractive.

But you know, it does get better. You still get moments of euphoria, and the things we can't have reveal things we never knew we did in the first place.
Posted 10/13/2009 10:20 AM (GMT 0)

I just joined this morning when I woke up unable to go to work. I need to "talk" to some other people about this Crohns. I am 62 and do not feel old, except when I cannot leave home for fear of embarassment. I am on Pentasa and Entocort (for flareups) but do not trust that I can go to work today........ I miss lots of things, but still can do most things. But when I go to people's houses for dinner, I almost always get sick during or afterwards, no matter how many times I explain what I cannot eat.

I do not wish this on anyone, but if there is anyone who wants to chat, I will be home. Oct. 13, 2009.

Posted 10/13/2009 10:23 AM (GMT 0)
oh, history: I was diagnosed about 10 years ago but something was wrong in my early 30s, especially when I drank milk. then it became other foods, and it took many years to realize that I needed a specialist. As you all mention, looking for every bathroom everywhere has been the secret to survival, and usually Pentasa. I will take Entocort for a week starting today. It should help.
Posted 10/13/2009 4:24 PM (GMT 0)
I do not have Crohn's, my daughter does. But I'll tell you what I miss.  I have two children. My son, who is seven, is severely autistic. I have accepted that.  I have accepted that his future is one in which he will need constant care.  My hopes, my dreams for my childrens' futures are pinned on my daughter. She is lovely, sweet, funny, kind, extremely intelligent, social, friendly, affectionate...perfect. Oh no....wait...she was diagnosed with Crohn's disease last year.  And so...I desperately miss the promise of a normal, healthy, bright and happy future for my children that other people take for granted.  I miss the innocence of being a happy go lucky person.  I miss not worrying, every single minute, of every single day.  I miss mornings where I would wake up and make breakfast, not wake up and make medicine cocktails.  I miss feeling optimistic about the world.

Thanks for allowing me to vent.

 

Posted 10/13/2009 4:56 PM (GMT 0)
Moobydoo-The character and integrity she will gain from enduring this disease can bring her a lot closer to perfection than any young girl who takes everything for granted. And even though she will have to worry about specific things other people simply don't for the rest of her life, she will have carefree moments, she will have feelings of euphoria, and she will have a good life as long as you're there to support her every step of the way.

It will be tough, but she'll be all right!

Our laments here are really a bit of catharsis I think. We have to let out our regrets somewhere, but please, please don't think this is how we all feel all the time.

I have had some wonderful times in spite of this disease. It's not whenever I want, but I can see movies with my fiance, I can go to concerts, go out to eat (but be extremely careful and picky), I can dance and sing, take strolls with a camera, etc. Life is much, much harder, but it will make your daughter appreciate all of the little things. It shows us beauty other people will never see.
Posted 10/13/2009 5:33 PM (GMT 0)
Thanks for that LMills.  I can't get it outta my head or heart tho, when she says things to me like "I hate my life. I hate this Crohn's"  She's ONLY 9.  She's way too young to be hating life!  All I can do is hug her and remind her that no one is perfect and we all have our cross to bear.  Just such a hard lesson for such a young innocent child.  ARGH.

 

Posted 10/13/2009 5:35 PM (GMT 0)
Well, I'm not going to lie...it will be like that a lot for a while at the beginning and on and off for the rest of her life. But slowly your frame of mind improves, and you allow yourself to feel happy. I'm only sorry that someone so small has to be dealing with something so big. It's a hard lesson for anyone...But she is really, really lucky to have a parent like you.
Posted 10/13/2009 6:22 PM (GMT 0)
I was diagnosed with Crohn's in August 2009 I was surprised because I am 58Yrs. and most people I hear about are much younger. I miss pizza,and the gravey (red sause) my Italian husband cooks. I am thankful that I am able to have mostly all good days. Anyone else diagnosed in the mid part of life? LOL I still don't think I am old...
Posted 10/13/2009 6:26 PM (GMT 0)
Welcome to the site sickandlucky :)

I don't miss eating junk or sugar, but I do miss not being able to hold in my "urges" to "go" and I miss only having to "go" once/day...I also miss doing things on the spur of the moment, and I miss the confidence I used to have.


:)
Posted 10/13/2009 7:13 PM (GMT 0)
There is a confidence issue, but I will say that I do much better when I avoid the foods that trigger my upsets. You and your daughter will notice that she does better after some foods than others. You might make a list. My downfall is that once I could eat cheese and dairy, and now I cannot. Other spicy things too. I ate too many of them these last few days and had to miss work today. So now I am going to do better, one day at a time, like an alcoholic trying to keep sober. Please do not give up. I had this around in my 30's, but only got diagnosed in my 50s. You and your daughter will be much wiser, and have fewer bad habits to break. Plus, you will monitor her much better than I monitor myself. There are many worse things to have, as we all know. This won't help much, but I am glad you can vent, that we all can.

lol to the broken bum joke, btw! any more jokes? i need to laugh!
Posted 10/13/2009 11:46 PM (GMT 0)
I miss sharing a big pitcher of strawberry daiquiris to celebrate the weekend. (Can't have the booze OR the strawberries!) I miss being able to say, "It's a beautiful morning--I'm going to take a long walk" because I worry about being caught where there isn't a bathroom. I miss an active sex life. (I feel crummy in the morning, and I feel grubby and edgy in the evening.) I miss eating fresh fruit, skins and all. (I ate a McIntosh apple last night--peeled, of course--and I'm paying for it today.) I miss having a butt that wasn't sore all the time! I miss being the person who could say, "No, I've never been hospitalized or had any surgery." I miss being able to snuggle in with a bowl of popcorn on a rainy winter night.

But I'm so happy I'm still here--and so happy that, despite all the daily discomforts, I can still be classified as having only 'moderate' Crohn's!
Posted 10/13/2009 11:58 PM (GMT 0)

par1230 said...
I was diagnosed with Crohn's in August 2009 I was surprised because I am 58Yrs. and most people I hear about are much younger. I miss pizza,and the gravey (red sause) my Italian husband cooks. I am thankful that I am able to have mostly all good days. Anyone else diagnosed in the mid part of life? LOL I still don't think I am old....

It's not too common but it does happen...

 

While Crohn's disease is often thought of as a disease of the young, about 25% of new cases are diagnosed in individuals over age 60.

 

My mom has UC but didn't get sick with it unitl her mid 60's (I had crohn's before she got sick with UC)...UC and CD both being an IBD.

 

I don't think you're old either smilewinkgrin

Posted 10/14/2009 2:27 AM (GMT 0)
I miss being able to be careless in what I eat, be able to have a couple beers without feeling like crap the next 3 days, eating sunflower seeds, getting full at a meal, taking no medications. Essentially, I miss being normal.
Posted 10/14/2009 2:43 AM (GMT 0)
i miss feeling sexy
i hate the poop jokes everyone makes and the smile i have to put on and pretend it doesnt make me feel so different.
i miss being ok.
i hate when someone feels sorry for me and i say "others have it worse" so i dont seem like i pitty myself all the time when thats all i want to do.
i miss staying up late
i miss all the good food
i miss not being afraid of getting fired because im sick.
i miss being a normal 20 year old.
Posted 10/14/2009 2:51 AM (GMT 0)
sulleysullivan: I'm with you on all of those. And I miss being able to feel attractive and be an affectionate girlfriend. Sometimes I feel like I just don't have it in me
Posted 10/14/2009 3:01 AM (GMT 0)
what i feel is hardest about being a girlfriend with crohn's is my fiance tries so hard to understand and do what he can for me but he doesnt do it correctly or he cant understand and i get frustrated and yell ha ha like he'll buy whole wheat bread and he doesnt get why i cant eat it poor guy gets the shaft in this relationship ha ha do things go similarly with you?
Posted 10/14/2009 3:54 AM (GMT 0)
This DD definitely takes away feeling sexy, that's for sure (I'm lucky I have a great husband, who's probably a great liar when he says he doesn't see me any less sexy...or maybe that's actually a back-handed compliment LOL who knows), but I sure haven't felt sexy in almost 2 decades since getting this disease.

:)
Posted 10/14/2009 12:00 PM (GMT 0)
Well, i have read all these replies and the list of "I misses" doesn't seem to end.
I miss it ALL too!

I miss being a good weight and not skinny.
I miss not having to worry about bathrooms and SOFT toilet paper.
I miss the good sleeps I used to have.
I miss working and being confident.
I miss many many foods - and really enjoying a meal.
I miss being sexy, attractive, fertal and able to get pregnant. [can't have children, hydrosalphinx & too much scare tissue fr. surgery]

And it is so hard to focus on the gains rather than the losses.
Like:
I am glad I have a healthier diet and watch what I eat & my family does too.
I am glad that I am a stronger person because of the disease.
I am glad that I am more interested in other chronic diseases & people who have them.
I am glad that I listen more now that I ever did before.
I am glad that my husband is still here with me and loves me no matter what.
I am glad for the support of my husband & family.
I am glad that I now have time for the smaller things in life.
I am glad that I am with U all, and it is so great to see there are many many people like me who DO understand.

Thanks for the great topic! :o)
Posted 10/14/2009 2:07 PM (GMT 0)
I like that you focused on what you're glad for too!

And I often feel bad for my boyfriend :( He's really understanding but also doesn't quite get it sometimes... Like he doesn't understand why when I'm feeling sick I really want to be at home and not at his house (he says he'll take care of me and we can watch movies but I really don't want to use his washroom that way!!!!). He's an amazing guy and probably intensely sexually frustrated.

Anyways I'm glad for my family. Thats why I made my name sickandlucky, because I feel reallly lucky that I have the people around me that I do. And I have a pet rabbit, does anyone else find having a pet extremely therapeutic?
Posted 10/14/2009 10:31 PM (GMT 0)
boy howdy, do I understand when dear hubby buys what he still (10+ years post-diagnosis) buys whole wheat bread. At least now he is getting better at buying something less rough. And we do get a laugh that I can eat a hamburger from fast food just fine..............and he says who else can eat processed food but not healthy salads? that would be me. At least since my diagnosis, my family is so much less critical of bathroom time, missed meals, etc. I would not say critical. I feel self-criticized that I can not always make it through a meal.

And I am so so yearning for that little chocolate pastry that is in the refrigerator..........I do miss buttery pastries, ice cream, and also hoping if I sneak a teensy bit, if I won't be sick the next day and miss work.

My pet dog is my granddog, and he is therapeutic. Except he also might have at least IBD if not Crohns. He gets very upset when left alone, which is how I got to keep him. But I work now so I have to pay for doggie day care so he won't explode poop in his little crate while we are away. Maybe I am therapeutic for him. Wonder how he'd do on Pentasa as well as his anti-anxiety meds? Anyone else have a dog with IBD?!? He is too skinny, too!

guess that is funny. sorta, in our world.
Posted 10/14/2009 10:49 PM (GMT 0)
I miss my parents. I miss my friends. I miss having a man in my life. I miss being able to work and go to school full time. I miss being able to bench over 230 lbs. I miss being able to run a marathon. I miss being able to walk normally. I miss being a gym rat. I miss being able to work. I miss being able to eat what I want. I miss not having accidents on a weekly basis. I miss not being in constant pain. I miss having sex. I miss not having to worry about my capability of having children, let alone have the energy to raise them.  I miss the fundimental question of my day being when to get up to get everything done, verses will I be able to get up and get anything done.  I miss being able to stand up and not worry about passing out or fracturing bones. I miss being attractive enough to model. I miss being in shape. I would be that person that gets a disease that is suppose to make them skinny and I got fat. I miss being a healthy person. I miss being squared away. I miss having a life.

With all that said I feel that having this disease has been a transcendent experience for me in that I have grown as a person and become more compassionate. Indeed I went from being a hard core military officer to being a multi PhD student in a completely different field. I want to make sure that my suffering has meaning. I have learned the fundamental question to ask is “how can I help?”

Sickandlucky, I find even petting the calves (they are there in casts to correct their legs) theraputic (I live very close to vet med center).
Posted 10/15/2009 12:56 AM (GMT 0)
someone mentioned a sore hind end. have you tried the dermatology lotion CUTAR Emulsion? it is an RX and your doc will tell you if you need it. But it clears up some of the skin issues that I have from Crohns. Use it in the tub, in a little sitz bath kind of tub, or on a washcloth on the "affected area". Get my drift? It is the only thing I have tried for the hurting skin issues from Crohns.
Posted 10/15/2009 12:57 AM (GMT 0)
CUTAR CORRECTION
oops. It used to be a prescription, but now it is not. Insurance does not cover it, but it is worth its weight in gold. it is kept behind the pharmacy at my pharmacy but I'd ask the doctor first. I actually started on it from a derm before I knew I had Crohns.
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