The Crohns Survey

[BWS1982]

I always see those cool, rich, healthy people answering fun surveys online, I want a 'crappy' one. If you have another ailment (UC, IBS, Celiac, Diverticulitis, Proctitis....) just assume "Crohns" as your illness and mention it at the start.

You can just copy, paste, and edit to answer.....

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*Flaring or Remission now: A swimmingly fun 14 month long flare still
*How many colonoscopies have you had done: 2 scopes, and 1 sigmoid/flex
*How many total GI's have you seen: technically, 4 total
*Do you know anybody personally (not the internet) with Crohns: I've only met 2 personally
*Do you believe you could have done anything in life to avoid Crohns: No, it was inevitable, but perhaps a delay?
*If you could take away one single symptom, what would it be: My urgency, bar none
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe
*Where is your Crohns located: Last scope, all in the colon
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Eh, empty/gross because I guess I can try to hover, I like my privacy
*Do you experience mostly "D" or mostly "C" with your bowel issues: The big fat, nasty "D"
*How long do most of your flares last: about a year or more for each one, dammit
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Shelled Roasted/Salted peanuts
*How Long have you been diagnosed: 2 years or so
*Were you flaring before diagnosis but didn't know it: yes, a week long flare months before the first "real" one
*Do you like your current GI doc: Yeah, he's awesome
*Have you had surgery for your Crohns: No, and I hope it stays that way, I hate the thought
*If you've been on pred, did you enjoy the experience: *#@%!!!! (that's no)
*How many hospital stays have you had: 2 depressing and costly ones
*Do You hate explaining your disease to the layman: ahh, usually no
*Currently how many trips to the toilet do you make daily: around 10
*Name one very awful food for your symptoms: spicy foods or milk I'd say
*What's your estimate of the timeframe for a cure for IBD: within 5 to 10 years I'd say (and hope)
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: that changes daily, but mostly anger unfortunately
*How many meds are you on daily: damn, about 13
*Ever use Crohns as an excuse when it wasn't one: sure, it's taken enough advantage of me, time for Karma
*What's your outlet for stress related to IBD: my girlfriend (to rant to), stand up comedy and video games and the thought of being better
*Family Members with IBD: None, but several have IBS
*Are you by chance the best or worst you've been since diagnosis: no, neither, around the middle
*Do you look up to anybody with Crohns now: David Gerrard of the NFL team the Jaguars, Mike McCready of Pearl Jam a little
*What activities do you miss the most that you can't do now: The bodybuilding lifestyle badly, but also fun stuff with the gf
*Does your employer know you have Crohns: Yes, but I they dont' understand it
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think it's a bit of the first 2 still
*Do you belong to a support group: Crohns Forum because I can poop and surf (web, not water) simultaneously if need be
*Are people close to you understanding of your disease: Most yes, a few can go to hell
*Did you ever mispell "Crohn's": No, and I'm proud of it, but I wish it wasn't spelled that way, crazy Germans
*Name one good thing Crohns has done for you: Given me humility

 

[Guest]

*Flaring or Remission now: i guess flaring - continually active Crohns ulceration
*How many colonoscopies have you had done: in the past loads, recently two
*How many total GI's have you seen:over the years, around 3
*Do you know anybody personally (not the internet) with Crohns: Yes - some close friends, some acquantancies through hospital/NACC
*Do you believe you could have done anything in life to avoid Crohns: not avoid it, but i could have taken better care to stop it getting so bad
*If you could take away one single symptom, what would it be: the bleeding
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): not been given a classification, but i'd set it at moderate
*Where is your Crohns located: approx 8" from rectum
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: no locks on doors, dirty toilet, no toilet paper, no soap
*Do you experience mostly "D" or mostly "C" with your bowel issues: before surgery, constipation
*How long do most of your flares last: my Crohns seems to just stay until surgery or meds intervene
*If one food on your "bad" list could be made "good" for your Crohns, what is it: raw veggies - love them, but daren't even go there now
*How Long have you been diagnosed: first diagnosed over 20 years ago, recurrence diagnosed 15 months ago.
*Were you flaring before diagnosis but didn't know it: yes - increasing flare over a number of years - symptoms ignored & misdiagnosed by gp
*Do you like your current GI doc: YES! we go back years - he is the one person on this earth i would trust with my life in his hands
*Have you had surgery for your Crohns: yes - lots
*If you've been on pred, did you enjoy the experience: had no horrid immediate bad effects, apart from i think it kickstarted hairloss - but no real good effects either.
*How many hospital stays have you had: too many to remember
*Do You hate explaining your disease to the layman: i don't like going into detail unless i trust the person
*Currently how many trips to the toilet do you make daily: 8ish
*Name one very awful food for your symptoms: pure orange juice. ow.
*What's your estimate of the timeframe for a cure for IBD: i'd like to think there is a cure waiting out there, but i'm not all that hopeful. coping mechanisms, i believe, are more likely.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: sad acceptance
*How many meds are you on daily: right now none, waiting to hear if i can have LDN
*Ever use Crohns as an excuse when it wasn't one: not really
*What's your outlet for stress related to IBD: relaxation, music, humour, talking, coming to this forum
*Family Members with IBD: none, some IBS
*Are you by chance the best or worst you've been since diagnosis: symptom-wise worse, mentally better.
*Do you look up to anybody with Crohns now: cannot remember her name, but there is a lady tv presenter who has Crohn's - full of energy & smiles.
*What activities do you miss the most that you can't do now: being able to hold down a job
*Does your employer know you have Crohns: had to leave work last year.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: i think we're born with a tendancy, like a ticking time bomb, and then other factors just pull the pin..
*Do you belong to a support group: used to go to NACC meetings, but they got me down. currently just this forum.
*Are people close to you understanding of your disease: yes - i think they forget sometimes though, because i look like i'm coping & cool with it all.
*Did you ever mispell "Crohn's": No
*Name one good thing Crohns has done for you: it has been a learning curve, & some of the lessons learned i can put into practice with my children, particularly regarding their diet and emotional well-being.

 

[jed]

*Flaring or Remission now: remission, several months
*How many colonoscopies have you had done: 15-20 in two years
*How many total GI's have you seen: 1 (he had some interns tho)
*Do you know anybody personally (not the internet) with Crohns: 3 others
*Do you believe you could have done anything in life to avoid Crohns: died @ 31 years old
*If you could take away one single symptom, what would it be: energy levels
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe
*Where is your Crohns located: whats left of my large intestine
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: neither affect me, i'll go antwhere
*Do you experience mostly "D" or mostly "C" with your bowel issues: at the moment, firm and normal, before that the big D
*How long do most of your flares last: flared bad for 14 months, now i'm good
*If one food on your "bad" list could be made "good" for your Crohns, what is it: KFC
*How Long have you been diagnosed: 28 months
*Were you flaring before diagnosis but didn't know it: yup
*Do you like your current GI doc: wonderful careing GI
*Have you had surgery for your Crohns: yup, most of my large intestine is gone by lil guy, i loved you as long as i could
*If you've been on pred, did you enjoy the experience: love/hate relationship
*How many hospital stays have you had: 1. a veterans hospital at that. awesome experience
*Do You hate explaining your disease to the layman: kinda enjoy it
*Currently how many trips to the toilet do you make daily: 10ish
*Name one very awful food for your symptoms: no idea, it always changes
*What's your estimate of the timeframe for a cure for IBD: cure it now you *******s! i want my life back. and you can take this fricken arthritus and shove it up you a***
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: been a bit of sadness lately
*How many meds are you on daily: down to 3
*Ever use Crohns as an excuse when it wasn't one: its always an excuse
*What's your outlet for stress related to IBD: dont have one
*Family Members with IBD: zero. one of my bro talks a lot of crap tho?
*Are you by chance the best or worst you've been since diagnosis: better
*Do you look up to anybody with Crohns now:nah
*What activities do you miss the most that you can't do now: sex without worry of what my hips are going to feel like the next day with arthritus
*Does your employer know you have Crohns: yup
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: no idea
*Do you belong to a support group:nope
*Are people close to you understanding of your disease: yeah, very much so. love them so much because they've taken an interest
*Did you ever mispell "Crohn's": lol, sometimes
*Name one good thing Crohns has done for you: 4 months off work, awesome!!!!!!

 

[merrywidow]

jed, do you ever take anything seriously? lol sharon xx

 

[mommy1st]

*Flaring or Remission now: Feeling okay but tests show flare
*How many colonoscopies have you had done: too many to count
*How many total GI's have you seen: 2 only and that was 19 years
*Do you know anybody personally (not the internet) with Crohns: Yes I know many people personally with Crohns including my younger cousin
*Do you believe you could have done anything in life to avoid Crohns: No, I don't think that it's healthy to blame yourself
*If you could take away one single symptom, what would it be: frequency of diarrhea
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): classed as severe ( always has been severe )
*Where is your Crohns located: originally terminal ileum - always comes back where first resection was
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: empty and disgusting
*Do you experience mostly "D" or mostly "C" with your bowel issues: D sometimes I hope for C but never happens
*How long do most of your flares last: not sure I start to feel okay even though tests say that I'm flaring (I guess I'm used to this wonderful disease)
*If one food on your "bad" list could be made "good" for your Crohns, what is it: blueberries, love them, hate me
*How Long have you been diagnosed: 19 long wonderful years
*Were you flaring before diagnosis but didn't know it: yes, had symptoms for a few years prior to being diagnosed but didn't know that they were symptoms
*Do you like your current GI doc: yes, he is the best
*Have you had surgery for your Crohns: Yes , three and I don't regret any of them, if Humira stops working then it will be off to surgery number 4
*If you've been on pred, did you enjoy the experience: Um no, except that it can be a quick fix when needed
*How many hospital stays have you had: honestly too many to count
*Do You hate explaining your disease to the layman: No, don't mind educating people even if they still have no idea what it is when I'm done
*Currently how many trips to the toilet do you make daily: around 10
*Name one very awful food for your symptoms: spicy greasy food
*What's your estimate of the timeframe for a cure for IBD: 5 years would be nice
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Hope I'm a very positive person and I embrace my Crohns
*How many meds are you on daily: only 2 right now (yeah)
*Ever use Crohns as an excuse when it wasn't one: I try not to ever use it as a excuse
*What's your outlet for stress related to IBD: my kids of course, my husband, coaching and playing basketball
*Family Members with IBD: My little cousin was just diagnosed
*Are you by chance the best or worst you've been since diagnosis: really hard to say
*Do you look up to anybody with Crohns now: I look up to anyone who has a Chronic illness, Crohns is hard at times and I commend those who still live their lives
*What activities do you miss the most that you can't do now: There isn't anything that I can't do
*Does your employer know you have Crohns: Yes, our practice mangers son also has Crohns so they are very very understanding
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think that its genetic
*Do you belong to a support group: Crohns Forum and I did belong to a support group but I stopped going because the other people made me feel depressed they kept telling me how bad my Crohns was and I wasn't there to feel sorry about myself but to talk to others who were going through the same thing
*Are people close to you understanding of your disease: For the most part, I have three sisters so growing up they could be a little cruel but now that we're older they're great
*Did you ever mispell "Crohn's": Sure I did I found it hard to spell in the beginning and still spell it wrong when typing fast, oh well
*Name one good thing Crohns has done for you: only reason I met my husband, yeah for Crohns

 

[jed]

@ merry, very rarely my dearest, very rarely

@ ding & mommy, your both @ 20 years with this disease? wow! just wow!

 

[Creepy Lurker]

*Flaring or Remission now: Flaring
*How many colonoscopies have you had done: Don't remember really. Probably about 5.
*How many total GI's have you seen: Just the one.
*Do you know anybody personally (not the internet) with Crohns: Yup. About four people now.
*Do you believe you could have done anything in life to avoid Crohns: Nope.
*If you could take away one single symptom, what would it be: Frequency or constipation. Can't decide.
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe
*Where is your Crohns located: No idea. Can't get decent scans/scopes past all the strictures. Suspected to be mainly the large intestine.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Crowded. I need my privacy. Disgusting, I can deal with a bit better.
*Do you experience mostly "D" or mostly "C" with your bowel issues: Alters. Currently C. Used to be D.
*How long do most of your flares last: Well, I'm technically only in my second, so I'll have to say 7 years. That's how long it took to get the first on under control.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Veg. I miss vit. C
*How Long have you been diagnosed: Just short of 10 years.
*Were you flaring before diagnosis but didn't know it: About a month.
*Do you like your current GI doc: Yup. He's great.
*Have you had surgery for your Crohns: No, but it looks like I will soon.
*If you've been on pred, did you enjoy the experience: Love and hate. It works.
*How many hospital stays have you had: None. My GI does everything he can to keep me out. MRSA is nasty.
*Do You hate explaining your disease to the layman: Nope. I like the look of discomfort as I give them too much info
*Currently how many trips to the toilet do you make daily: 0 - 10 depending on what's going on.
*Name one very awful food for your symptoms: Cabbage
*What's your estimate of the timeframe for a cure for IBD: 10 years.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: None of these. I'm pretty resigned to my fate now.
*How many meds are you on daily: 5
*Ever use Crohns as an excuse when it wasn't one: Yup. It's the perfect pre-made excuse for certain things.
*What's your outlet for stress related to IBD: None really.
*Family Members with IBD: None.
*Are you by chance the best or worst you've been since diagnosis: Nope. I've been worse. I've been better.
*Do you look up to anybody with Crohns now: A bit embarrasing really... Anastasia.
*What activities do you miss the most that you can't do now: None. I still lead a similar lifestyle. Just more toilet trips involved.
*Does your employer know you have Crohns: Yup.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetic with an environmental trigger.
*Do you belong to a support group: Are we a support group?
*Are people close to you understanding of your disease: Not really. To this day my Mother still thinks I'm just lazy.
*Did you ever mispell "Crohn's": Nope.
*Name one good thing Crohns has done for you: Taught me not to dismiss other peoples problems.

 

[Rosemarie]

*Flaring or Remission now: In Remission! =)

*How many colonoscopies have you had done: 3 or 4... can't remember.

*How many total GI's have you seen: OMG..... uuh.... 5 or 6 not including student doctors....

*Do you know anybody personally (not the internet) with Crohns: No.

*Do you believe you could have done anything in life to avoid Crohns: I dont know. It was probably inevitable.

*If you could take away one single symptom, what would it be: Fistulas.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate.

*Where is your Crohns located: Small bowel/perineum

*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Disgusting and full of other women when I had a bad case of the "liquids".

*Do you experience mostly "D" or mostly "C" with your bowel issues: Goes back and forth for me. Either one or the other... and sometimes both at same time.

*How long do most of your flares last: Depends... 1 week to 1 month or more.

*If one food on your "bad" list could be made "good" for your Crohns, what is it: Ice cream!

*How Long have you been diagnosed: 3 years, 8 months

*Were you flaring before diagnosis but didn't know it: YES.

*Do you like your current GI doc: Yeah... he's ok.

*Have you had surgery for your Crohns: Colorectal.

*If you've been on pred, did you enjoy the experience: HELL NO.

*How many hospital stays have you had: around 10? Hard to remember everything....

*Do You hate explaining your disease to the layman: Yes. They just dont get it.

*Currently how many trips to the toilet do you make daily: 50 lol =) to pee... Im pregnant.... I havent been pooping much.

*Name one very awful food for your symptoms: Sun dried tomatoes

*What's your estimate of the timeframe for a cure for IBD: No idea... hopefully soon.

*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Hope =)

*How many meds are you on daily: 4 right now.

*Ever use Crohns as an excuse when it wasn't one: A few times...

*What's your outlet for stress related to IBD: Books, Art, soft music and hot baths.

*Family Members with IBD: None I know of.

*Are you by chance the best or worst you've been since diagnosis: Best! =)

*Do you look up to anybody with Crohns now: I look up to them all.

*What activities do you miss the most that you can't do now: Being intimate with my husband lol.... my butt issues keep me from enjoying certain things for looooong periods of time.

*Does your employer know you have Crohns: Im unemployed.

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: A combination of environment, diet, stress, and infection triggered mine....

*Do you belong to a support group: This forum =)

*Are people close to you understanding of your disease: Mostly.

*Did you ever mispell "Crohn's": HAHA few times on accident.

*Name one good thing Crohns has done for you: Made me appreciate things I DO have more then ever. Allowed me to meet people and travel to places I never would have had a reason to.

 

[katiesue1506]

*Flaring or Remission now: Not remission, but I won't say its a full fledged flare either
*How many colonoscopies have you had done: 1
*How many total GI's have you seen: Just the one.
*Do you know anybody personally (not the internet) with Crohns: Yes but only one
*Do you believe you could have done anything in life to avoid Crohns: Kinda... I keep telling myself "If I had just controlled my stress levels, if I just hadn't gotten that damn vaccine" but then part of me thinks it may have been inevitable
*If you could take away one single symptom, what would it be: Hmm... toss up between diarrhea and fatigue
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): mild-moderate is what my records say
*Where is your Crohns located: No idea, at my last and only colonoscopy my GI said it was everywhere
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Crowded... I can only go if I'm in there alone.
*Do you experience mostly "D" or mostly "C" with your bowel issues: Diarrhea
*How long do most of your flares last: I'm not sure. After diagnosis it lasted 11 months, this time its harder to gauge because I'm not in a full fledged flare.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: POPCORN
*How Long have you been diagnosed: Hey... this month is my two year anniversary... oh BOY.
*Were you flaring before diagnosis but didn't know it: 6 months.
*Do you like your current GI doc: I think so.
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: NO!
*How many hospital stays have you had: None really... I was in the ER the day before I was diagnosed and they gave me blood tests and a Barium CT before ordering an emergency colonoscopy for the next day, but they sent me home.
*Do You hate explaining your disease to the layman: Depends on my mood, some days I'd just rather not deal with it.
*Currently how many trips to the toilet do you make daily: 1-2 on good days and 4-5 on bad ones.
*Name one very awful food for your symptoms: Hmm... beef
*What's your estimate of the timeframe for a cure for IBD: Oh gee... I don't even know. I've prepared myself for a lifetime of this disease, but 10 years would be nice.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Hmm... boarderline hope... I would say I'm optimistic and just strive to be happy despite my diagnosis. I really like to achieve and I love to overcome things... so being happy is the only way for me. Of course I have my down days... but don't we all?
*How many meds are you on daily: 1 (LDN)
*Ever use Crohns as an excuse when it wasn't one: Oh yes... most frequently used when friends ask me to go out drinking.. "oh sorry, I'm not allowed to consume alcohol... it would upset my intestines greatly"
*What's your outlet for stress related to IBD: Movies, hot baths, my puppy, my boyfriend
*Family Members with IBD: None.
*Are you by chance the best or worst you've been since diagnosis: I would say I'm not in the best because Remicade was a godsend... but I'm certainly no where near the worst
*Do you look up to anybody with Crohns now: Yeah... Shannon Doherty... I love the show Charmed, and so I will watch the earlier ones and try to see if I can tell she's suffering... never can besides when you can tell she's lost weight.
*What activities do you miss the most that you can't do now: I miss dancing... but that's not purely a cause of Crohn's... its also because I'm now in college and have a job and have no time for that stuff
*Does your employer know you have Crohns: Well I JUST got a new job... so no, they don't know yet. But my previos employer knew.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetic with an environmental trigger.
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: Umm... depends on the day, I try to be understanding of them because I know it must be so frustrating to see someone they love suffering and they can't do anything about it... so they mostly try to pretend I'm okay... but I realize that is just a coping mechanism they have. And I'm okay with that.
*Did you ever mispell "Crohn's": NEVER!
*Name one good thing Crohns has done for you: It really put my life into perspective... I don't take as much for granted anymore. I try to live life to the fullest when I'm well and I make goals when I'm sick. It has also made me a more optimistic person. I realize I may not always have my health, but at least I have my life.

 

[mrs. vr]

*Flaring or Remission now:[/B] Flaring
*How many colonoscopies have you had done: 1 colonoscopy, 1 endoscopy, 1 small bowel follow through, 1 video capsule swallow, couple of pelvic MRI's, and an abdominal ultrasound so far.
*How many total GI's have you seen: 2
*Do you know anybody personally (not the internet) with Crohns: No, but people keep telling me they know someone who has it.
*Do you believe you could have done anything in life to avoid Crohns: I don't think so, still not even entirely sure what I have.
*If you could take away one single symptom, what would it be: Joint pain.
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): N/A
*Where is your Crohns located: Apparently, mine is invisible.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Dirty. I have real nightmares about it. I'd rather clear a room.
*Do you experience mostly "D" or mostly "C" with your bowel issues: Diarrhea
*How long do most of your flares last: I don't know, I'm not sure I've been totally OUT of one for a very long time now.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: whole grain stuff
*How Long have you been diagnosed: like the Enegizer bunny, I'm stillllll going.
*Were you flaring before diagnosis but didn't know it: having symptoms for years.
*Do you like your current GI doc: So far
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: Actually, I loved it. It was the first time in probably a year I've been free of pain.
*How many hospital stays have you had: None
*Do You hate explaining your disease to the layman: Meh.
*Currently how many trips to the toilet do you make daily: most days, maybe 7 or 8.
*Name one very awful food for your symptoms: anything with a lot of fiber
*What's your estimate of the timeframe for a cure for IBD: I don't know, medical science has progressed a lot in my lifetime, so I'm optimistic.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: None of the above, FRUSTRATION best describes how I feel.
*How many meds are you on daily: 4-5 depending on how I'm doing.
*Ever use Crohns as an excuse when it wasn't one: pleading the 5th.
*What's your outlet for stress related to IBD: reading
*Family Members with IBD: None, but I have a brother who has had serious stomach issues.
*Are you by chance the best or worst you've been since diagnosis:I'll let you know when I get a dx.
*Do you look up to anybody with Crohns now: As someone else said, I look up to anyone with a chronic illness who is able to stay positive.
*What activities do you miss the most that you can't do now: Running. My knees wont let me.
*Does your employer know you have Crohns: N/A
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetic with an environmental trigger.
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease:I guess. I know it's hard for my kids to understand though.
*Did you ever mispell "Crohn's": Yep.
*Name one good thing Crohns has done for you: Ugh, I don't know if I'm there yet.[/QUOTE]

 

[teeny5]

*Flaring or Remission now: Flaring still though a lot better
*How many colonoscopies have you had done: 1
*How many total GI's have you seen: 3
*Do you know anybody personally (not the internet) with Crohns: Nope...co worker's husband and another co worker's daughter in law does though.
*Do you believe you could have done anything in life to avoid Crohns: Nope
*If you could take away one single symptom, what would it be: Pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): mild to moderate
*Where is your Crohns located: only in colon
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: crowded and clean...I would try to clean as good as possible if it was that dirty then go.
*Do you experience mostly "D" or mostly "C" with your bowel issues: only the "D"
*How long do most of your flares last: never been not flaring yet
*If one food on your "bad" list could be made "good" for your Crohns, what is it: beef
*How Long have you been diagnosed: just a few months
*Were you flaring before diagnosis but didn't know it: yes, months...thought it was stress and exhaustion
*Do you like your current GI doc: he's ok I guess, met others I might try to switch to
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: Haven't been on it yet
*How many hospital stays have you had: none
*Do You hate explaining your disease to the layman: nope
*Currently how many trips to the toilet do you make daily: 2 yay!
*Name one very awful food for your symptoms: beef
*What's your estimate of the timeframe for a cure for IBD: ???? there are so many diseases that they can't cure...don't mean to be pessimistic, but just don't think it is a priority to most
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: hope...finally found meds that make me feel better
*How many meds are you on daily: 4
*Ever use Crohns as an excuse when it wasn't one: yeah, easy excuse if you don't want to go somewhere or do something
*What's your outlet for stress related to IBD: video games
*Family Members with IBD: none
*Are you by chance the best or worst you've been since diagnosis: best
*Do you look up to anybody with Crohns now: not really
*What activities do you miss the most that you can't do now: not sure, just getting use to the disease and haven't tried too many strenuous things yet
*Does your employer know you have Crohns: Yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think it is a combination of things and then is triggered by something in the environment
*Do you belong to a support group: this site...yay!
*Are people close to you understanding of your disease: Mostly, but still think many don't really get what it is.
*Did you ever mispell "Crohn's": No
*Name one good thing Crohns has done for you: Let me be more compassionate towards others with ailments or life issues. Just sucks when things seem out of your control.

 

[RHOV]

*Flaring or Remission now: remission, finally
*How many colonoscopies have you had done: uno
*Do you know anybody personally (not the internet) with Crohns: Amy, kind of
*Do you believe you could have done anything in life to avoid Crohns: nope, i think it's genetic
*If you could take away one single symptom, what would it be: inflamed skin
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): my GI said
"moderate to severe," but i'm in remission right now...
*Where is your Crohns located: currently nowhere, but it was in my colon, small intestine, stomach, and esophagus.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: crowded. i hate having other people around.
*Do you experience mostly "D" or mostly "C" with your bowel issues: usually D, but I've had both in the same day
*How long do most of your flares last: week or two or a few months
*If one food on your "bad" list could be made "good" for your Crohns, what is it: ice cream
*How Long have you been diagnosed: year and a half
*Were you flaring before diagnosis but didn't know it: for like 6 months
*Do you like your current GI doc: yes, but he treats me like i'm 4 yrs old
*Have you had surgery for your Crohns: no
*If you've been on pred, did you enjoy the experience: I LOVED IT SO MUCH!!!! (*sarcasm*)
*How many hospital stays have you had: never been admitted
*Do You hate explaining your disease to the layman: yes, because it's usually to my friends, and that's awkward
*Currently how many trips to the toilet do you make daily: 6
*Name one very awful food for your symptoms: cherry tomatoes
*What's your estimate of the timeframe for a cure for IBD: probably not for a while.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: hope
*How many meds are you on daily: remicade and vitamins
*Ever use Crohns as an excuse when it wasn't one: probably, but i honestly can't remember
*What's your outlet for stress related to IBD: be a b**** to my friends and not tell them why
*Family Members with IBD: none, but one w/ RA
*Are you by chance the best or worst you've been since diagnosis: uhh...
*Do you look up to anybody with Crohns now: I look up to all of you. You are my heroes.
*What activities do you miss the most that you can't do now: yawning
*Does your employer know you have Crohns: i don't have job
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: genetics
*Do you belong to a support group: this
*Are people close to you understanding of your disease: they try
*Did you ever mispell "Crohn's": exclusion of the apostrophe doesn't count, so no
*Name one good thing Crohns has done for you: gave me an essay topic for college apps. too bad it's so cliched.

 

[Guest]

@ merry, very rarely my dearest, very rarely

@ ding & mommy, your both @ 20 years with this disease? wow! just wow!

yup Jed, i thought i had got rid of the Crohns monster when i had extensive surgery back in the late 80's. unfortunately it crept back just over a year ago.


btw Benson, this is a superb survey idea of yours - well done!

 

[danman]

*Flaring or Remission now:
Flaring

*How many colonoscopies have you had done:
10 approx.

*How many total GI's have you seen:
4, latest one for 10 years.

*Do you know anybody personally (not the Internet) with Crohns:
no.

*Do you believe you could have done anything in life to avoid Crohns:
no.

*If you could take away one single symptom, what would it be:
Fistulas.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps):
moderate at present.

*Where is your Crohns located:
large bowel/colon.

*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:
no paper, I also visited one once which was worse than the toilet in the film "Trainspotting". scared me for life.

*Do you experience mostly "D" or mostly "C" with your bowel issues:
always D

*How long do most of your flares last:
anything from 1 month to 2 years.

*If one food on your "bad" list could be made "good" for your Crohns, what is it:
No food effects me during a flareup. I don't get any better or worse. and when in remission, nothing can stop Superman.

*How Long have you been diagnosed:
19 years, July 1989.

*Were you flaring before diagnosis but didn't know it:
Yes, for about a year.

*Do you like your current GI doc:
Yes, the best in my country by miles.

*Have you had surgery for your Crohns:
yes, 3 times.

*If you've been on pred, did you enjoy the experience:
Yes, on many occasions. I've never noticed the side effects, accept moonface. I think I'm just glad when it works.

*How many hospital stays have you had:
7

*Do You hate explaining your disease to the layman:
No, as someone said earlier, I love to see them squirm. I was diagnosed at 16, so any embarrassment soon left. I'm comfortable with my Crohn's.

*Currently how many trips to the toilet do you make daily:
8-10

*Name one very awful food for your symptoms:
None, see above.

*What's your estimate of the timeframe for a cure for IBD:
The advances I've seen over the last 19 years have been enormous, but I'm not holding my breath.

*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope:
Again as someone said, none of these. I've had this for most of my life, I just get on with it.

*How many meds are you on daily:
3

*Ever use Crohns as an excuse when it wasn't one:
No, never.

*What's your outlet for stress related to IBD:
Family, and supporting my football team (you call it Soccer)

*Family Members with IBD:
No.

*Are you by chance the best or worst you've been since diagnosis:
about the same at present.

*Do you look up to anybody with Crohns now:
Don't know anyone.

*What activities do you miss the most that you can't do now:
Nothing really. My life has changed from I was a 16 yearold

*Does your employer know you have Crohns:
I've always been upfront with employers, but I've not told my present employer. I'm waiting for a contract extension and don't want to jeopardise it because they don't understand.

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither:
Genetics.

*Do you belong to a support group:
No

*Are people close to you understanding of your disease:
Generally yes, but sometimes my wife forgets.

*Did you ever mispell "Crohn's":
constantly.

*Name one good thing Crohns has done for you:
It's helped me, generally, to get on with life, and not look back.
Although on a negative side, sometimes I dismiss other peoples ills. (suffering, what do they know about suffering, they've got a ingrown toenail!!!... these type of thoughts.)

 

[BWS1982]

I'm tired but I have a lot of reading to do, glad I came up with a good idea.

 

[Lom]

Hey guys, just recently found this forum so thought this would be a good way of introducing myself!

*Flaring or Remission now:
Flaring

*How many colonoscopies have you had done:
Just the one!

*How many total GI's have you seen:
1

*Do you know anybody personally (not the Internet) with Crohns:
nope

*Do you believe you could have done anything in life to avoid Crohns:
Nothing to avoid it, but feel I could of followed a better diet before i was diagnosed to prevent it being as bad as it has been.

*If you could take away one single symptom, what would it be:
Abdominal pain.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps):
Doc says from Colonoscopy that it is only mild, however after reading up on the disease I believe I am moderate.

*Where is your Crohns located:
large intestine/colon/bowel (i think)

*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:
Crowded and clean

*Do you experience mostly "D" or mostly "C" with your bowel issues:
equally have both.

*How long do most of your flares last:
Only been diagnosed 6 months and been flaring ever since (instead of a 3 week period when i was on a high dosage of preds)

*If one food on your "bad" list could be made "good" for your Crohns, what is it:
Pizza

*How Long have you been diagnosed:
6 Months

*Were you flaring before diagnosis but didn't know it:
Yes

*Do you like your current GI doc:
No, he doesn't seem interested in my health at all. He laughed when I said I was getting a lot of pain because he says I only have mild Crohn's

*Have you had surgery for your Crohns:
Nope, and seriously hope I don't have to!

*If you've been on pred, did you enjoy the experience:
Been on it for 3 months, felt brilliant at first but now I am getting the demon side effects and can't wait to get off it! (4 weeks of tapering to go!)

*How many hospital stays have you had:
None

*Do you hate explaining your disease to the layman:
Yes, mainly because I am no good at explaining it!

*Currently how many trips to the toilet do you make daily:
3-4

*Name one very awful food for your symptoms:
Mcdonalds

*What's your estimate of the timeframe for a cure for IBD:
Don't think there will be a full cure in my lifetime, although I believe over the years advances will be made to make the live's of people who suffer from the disease a lot easier.

*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope:
On preds so one minute I'm full of hope, then the moment I get a bit of pain or d i'm sad and angry!

*How many meds are you on daily:
4

*Ever use Crohns as an excuse when it wasn't one:
No and I don't use it as an excuse when I should!

*What's your outlet for stress related to IBD:
Listening to music

*Family Members with IBD:
No.

*Are you by chance the best or worst you've been since diagnosis:
Neither

*Do you look up to anybody with Crohns now:
Don't know anyone with it (both famous and non-famous) but as some people here have said, I admire the people who always have a smile on their face when they have a chronic/serious illness.

*What activities do you miss the most that you can't do now:
Playing football (soccer!), partying with my mates!

*Does your employer know you have Crohns:
Yes, and they have been really supportive and understanding. Which is a great help.

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither:
I believe my Crohn's has been with me all my life, however I think I have made it bad enough via an unhealthy lifestlye!

*Do you belong to a support group:
No

*Are people close to you understanding of your disease:
No, I find it hard to understand myself a lot of the time.

*Did you ever mispell "Crohn's":
Yup, I always spell it as Chron's! In fact this question has made me go through all my answers and correct the spelling of it!

*Name one good thing Crohns has done for you:
Made me appreciate the things in life most people take for granted.

 

[Lom]

Thanks for the welcome Pen, glad I found this forum. Although my friends and family have been brilliant in their support, they can't fully understand what I'm going through without experiencing it themselves so talking about things on here will help.

 

[Lom]

Yer you could say that, here in the UK we don't talk openly about problems with our digestive systems!
Everyone I'm close to has been brilliant to me, it's just when they try and help they come out with stupid comments such as 'there is always someone worse off then you' etc. (How is that meant to make me feel better?!) and also advice such as 'drink milk because it lines your stomach'. I know they mean well but it really doesn't help! Thanks about suggestion on book, all my close family have scaled the internet vigorously reading up on the disease, but as you say can never understand the emotional aspect of it!

 

[fenway1971]

*Flaring or Remission now: Trying to get out of my worst flare.
*How many colonoscopies have you had done: 3
*How many total GI's have you seen: 1
*Do you know anybody personally (not the internet) with Crohns: Yes
*Do you believe you could have done anything in life to avoid Crohns: Not sure. I believe it's genetic. That said, I can probably eat better foods for my digestive system.
*If you could take away one single symptom, what would it be: The runs.
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): colonscopy suggests moderate-severe. systems feel moderate.
*Where is your Crohns located: Large intestine only.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Disgusting. I'd rather poo in my pants.
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: We'll find out. I don't think I ever truly recovered from my first flare 5 years ago. This time it's bad and we're 8 weeks and counting.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Nuts
*How Long have you been diagnosed: 5 years
*Were you flaring before diagnosis but didn't know it: Yes
*Do you like your current GI doc: He seems like he knows what he's doing.
*Have you had surgery for your Crohns: No. And, I hope never.
*If you've been on pred, did you enjoy the experience: On it now and HATE it!
*How many hospital stays have you had: None.
*Do You hate explaining your disease to the layman: I used to be embarassed and hide it. Now, I'm accepting of the disease and have no problem talking about it.
*Currently how many trips to the toilet do you make daily: 1-2 on good days. more on bad days.
*Name one very awful food for your symptoms: beer
*What's your estimate of the timeframe for a cure for IBD: Cure? I'd say 20-25 years. Significant improvement in drug treatment? Next 5-15.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Now it's sadness. Acceptance that I actually have a disease that's chronic. Hope that I can aggressively manage it with improved diet and lifestyle changes.
*How many meds are you on daily: 3 (colazal, prednisone, prilosec) plus 5 supplements.
*Ever use Crohns as an excuse when it wasn't one: Hell yeah.
*What's your outlet for stress related to IBD: My girl - the love of my life.
*Family Members with IBD: Mom had UC.
*Are you by chance the best or worst you've been since diagnosis: Worst
*Do you look up to anybody with Crohns now: No. Don't know anyone.
*What activities do you miss the most that you can't do now: None. So far, I can still do whatever I want.
*Does your employer know you have Crohns: Yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetics with environmental/dietary triggers.
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: Mom is - since she had UC. Others sort of understand it but nobody ever will completely unless they experience it. I think because I look healthy on outside, few realize how unhealthy I am on the inside.
*Did you ever mispell "Crohn's": Never.
*Name one good thing Crohns has done for you: Teaching me to reevaluate what's important - which is health.

 

[My Butt Hurts]

*Flaring or Remission now:
Flaring

*How many colonoscopies have you had done:
3

*How many total GI's have you seen:
2 and a colorectal surgeon

*Do you know anybody personally (not the Internet) with Crohns:
2, but EVERYbody I talk to seems to know someone who has Crohn's.

*Do you believe you could have done anything in life to avoid Crohns:
I guess not.

*If you could take away one single symptom, what would it be:
Urgency, and not knowing when it's coming on.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps):
moderate to severe. Depends on the week I guess.

*Where is your Crohns located:
No idea. I asked once but I forgot.

*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:
Disgusting.

*Do you experience mostly "D" or mostly "C" with your bowel issues:
Always D

*How long do most of your flares last:
Too long. Months.

*If one food on your "bad" list could be made "good" for your Crohns, what is it:
One? I have to pick one??
Can't do it. Onions, I love raw onions but they KILL me. I'm in love with celery, nectarines, cherries, broccoli, anything fried, and spicy. Looooove spicy.

*How Long have you been diagnosed:
6 1/2 years

*Were you flaring before diagnosis but didn't know it:
Yes, I knew something was wrong, but didn't call it a flare obviously.

*Do you like your current GI doc:
I think so.

*Have you had surgery for your Crohns:
Not internally. Butt fistula.

*If you've been on pred, did you enjoy the experience:
I'm in love with pred. It makes me feel so good. I wish it was good for you to stay on. Figures.

*How many hospital stays have you had:
0

*Do You hate explaining your disease to the layman:
Yeah, they just don't get it.

*Currently how many trips to the toilet do you make daily:
About 5 or 6 for the past few weeks down from 10 thanks to pred.
3 or 4 this week. Why? No idea. Hope it stays that way.

*Name one very awful food for your symptoms:
Onions, fresh apple cider, beans.

*What's your estimate of the timeframe for a cure for IBD:
I don't think there will EVER be a cure for Crohn's. New medications maybe, better medications I HOPE, but a cure? Nah.

*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope:
The only fear I have is not making it to the toilet, but then I'll just change, clean up, and get on with it. Not too bad emotionally. It is what it is.

*How many meds are you on daily:
3 daily right now, Imuran, pentasa, pred. Plus Humira.

*Ever use Crohns as an excuse when it wasn't one:
No, never. I do use it as it is - if I don't feel like going somewhere, I don't go, But it's not an excuse, it's true and I say the reason.

*What's your outlet for stress related to IBD:
Not stressed.

*Family Members with IBD:
No.

*Are you by chance the best or worst you've been since diagnosis:
In the middle. Right now I am no where near my worst or my best.

*Do you look up to anybody with Crohns now:
Nope

*What activities do you miss the most that you can't do now:
Going for a walk for excercise. Afraid to crap my pants around the block. Could wear a diaper I guess. Maybe I'll do that in the spring. Better yet, maybe I'll feel better in the spring!.

*Does your employer know you have Crohns:
My principal knows, she's always asking how I feel, and seems concerned with my well being. My vice principal is a cute young kid, and he does NOT need to know my butt details!

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither:
Genetics I guess.

*Do you belong to a support group:
Just a GREAT one online!!

*Are people close to you understanding of your disease:
Yes.

*Did you ever mispell "Crohn's":
Yup.

*Name one good thing Crohns has done for you:
Made me appreciate the time that I DO get out and enjoy things.

 

[Sparky]

*Flaring or Remission now: not sure...never been totally in remission, but currently have reasonably *normal* bm/habits
*How many colonoscopies have you had done: 1
*How many total GI's have you seen: 3
*Do you know anybody personally (not the internet) with Crohns: No
*Do you believe you could have done anything in life to avoid Crohns: I don't think so. I think I had genetic predisposition, and then got a stomach bug when on holiday in Antigua
*If you could take away one single symptom, what would it be: Joint pain - no question. I hate that there are so many things I either can't do(like open a jar of coffee in the morning) or have to think about (ds's sports day)
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): moderate, I guess
*Where is your Crohns located: through my large intestine, with small patches through my small intestine
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: empty and disgusting - I cringe at the thought of having to go somewhere that's rank
*Do you experience mostly "D" or mostly "C" with your bowel issues: D always
*How long do most of your flares last: Depends on your definition. True flares for me involve no solid food for a period of time, so a true flare means pain, decision to stop eating, 5-10 days with no real food, then up to 2 weeks settling down from that.

*If one food on your "bad" list could be made "good" for your Crohns, what is it: red meat

*How Long have you been diagnosed: 5 years
*Were you flaring before diagnosis but didn't know it: yes, but only for about 3 months
*Do you like your current GI doc: Changes all the time.
*Have you had surgery for your Crohns: No. And, I hope never.
*If you've been on pred, did you enjoy the experience: OMG no. never again. Nearly destroyed my marriage.
*How many hospital stays have you had: None.
*Do You hate explaining your disease to the layman: I don't tell people unless I absolutely have to
*Currently how many trips to the toilet do you make daily: anywhere between 3 and 10
*Name one very awful food for your symptoms: beef
*What's your estimate of the timeframe for a cure for IBD: I worked for years for a pharmaceutical company. IMO, they'll never cure it - it's far too lucrative.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: acceptance - this is my life, and I will deal with it..
*How many meds are you on daily: azathioprine, entocort, codeine.*Ever use Crohns as an excuse when it wasn't one: No, never.
*What's your outlet for stress related to IBD: Still looking for that. Tend to disappear off upstairs to lie in bed and just chill.
*Family Members with IBD: None.
*Are you by chance the best or worst you've been since diagnosis: somewhere in the middle, probably upper side of middle
*Do you look up to anybody with Crohns now: No. Don't know anyone.
*What activities do you miss the most that you can't do now: I miss having energy. I'm so tired all the time, it puts me off doing things
*Does your employer know you have Crohns: No. I'm a contractor - can't risk my new employer (takeover situation) knowing I have chronic health problems
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetics with environmental/dietary triggers.
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: DH is. he's amazing tbh.
*Did you ever mispell "Crohn's": yep, regularly
*Name one good thing Crohns has done for you: changed my perspective

 

[Wiles]

Flaring or Remission now: Feel like I'm flaring, but haven't been seen in a while so I don't really know.
How many colonoscopies have you had done: 2 maybe? I like to avoid them
How many total GI's have you seen: 4, not including ones I've seen while hospitalized
Do you know anybody personally (not the internet) with Crohns: I've met people, but I don't really know anyone personally
Do you believe you could have done anything in life to avoid Crohns: Nope, but I probably could have taken better care of myself.
If you could take away one single symptom, what would it be: This is a tough question. I would have to say the urgent need to get to a bathroom, closely followed by fatigue.
Is your Crohns classed as mild, moderate, or severe (CDAI helps): I really don't know how the severity of this disease is classed.
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:I don't like using public washrooms, especially when other people are in them.
Do you experience mostly "D" or mostly "C" with your bowel issues: I mostly experience problems with D, but the few times I have had problems with C were terrible. I'd rather have D any day.
How long do most of your flares last: Too long
If one food on your "bad" list could be made "good" for your Crohns, what is it: Junk Food. If potato chips were the cure for Crohn's I'd be ecstatic
How Long have you been diagnosed: 8 years or so.
Were you flaring before diagnosis but didn't know it: Yeah, my doctor told me I was lactose intolerant and blowing things out of proportion.
Do you like your current GI doc: I haven't tried finding one here yet.
Have you had surgery for your Crohns: Yep.
If you've been on pred, did you enjoy the experience: It gave me terrible acne that I still have scars from
How many hospital stays have you had: I haven't kept count.
Do You hate explaining your disease to the layman: I don't mind.
Currently how many trips to the toilet do you make daily: 6-10
Name one very awful food for your symptoms: Anything with milk
What's your estimate of the timeframe for a cure for IBD:Next week (I can always hope, right? )
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Apathy
How many meds are you on daily: Just imuran and losec
Ever use Crohns as an excuse when it wasn't one: I can't think of an instance where I did.
What's your outlet for stress related to IBD: My computer.
Family Members with IBD: I've heard of some distant relative with some sort of IBD, but no one in my immediate family.
Are you by chance the best or worst you've been since diagnosis: Neither.
Do you look up to anybody with Crohns now: You people are an inspiration! We're all in this together!
What activities do you miss the most that you can't do now: I'm always paranoid about bathrooms, so I wouldn't go camping at a campground without proper toilets.
Does your employer know you have Crohns: I'm going to University and not working right now. I haven't brought it up with my professors yet.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think it's probable that there is more than one way to develop Crohn's.
Do you belong to a support group: This one!
Are people close to you understanding of your disease: Most of the time, yes!
Did you ever mispell "Crohn's": I probably have at one point or another.
Name one good thing Crohns has done for you: I got to meet a great group of people at the Crohn's forum

 

[Mazen]

*Flaring or Remission now: Remission more or less for a couple of months now
*How many colonoscopies have you had done: 2
*How many total GI's have you seen: 3
*Do you know anybody personally (not the internet) with Crohns: Yes but only one which I met at the hospital
*Do you believe you could have done anything in life to avoid Crohns: Maybe being less of an anxious person and eating right; not much junk and sugar...
*If you could take away one single symptom, what would it be: Pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): moderate
*Where is your Crohns located: Terminal Ileum
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: I never had D so I don't know....
*Do you experience mostly "D" or mostly "C" with your bowel issues: Constipation
*How long do most of your flares last: a month or so, but then I need Pred or antibiotics to go back in remission
*If one food on your "bad" list could be made "good" for your Crohns, what is it: POPCORN
*How Long have you been diagnosed: 8 years
*Were you flaring before diagnosis but didn't know it: 3 months.
*Do you like your current GI doc: I think so.
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: sometimes
*How many hospital stays have you had: 5
*Do You hate explaining your disease to the layman: Always; it seems nobody understands how terrible it just and just thinks it's tummy ache ...
*Currently how many trips to the toilet do you make daily: 1 or none
*Name one very awful food for your symptoms: Garlic
*What's your estimate of the timeframe for a cure for IBD: 5 years I hope or at least they approve milder meds like LDN
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Hope; I just newly married and hope things will get better and more stable now
*How many meds are you on daily: 2 (Pentasa and Imuran)
*Ever use Crohns as an excuse when it wasn't one: Sometimes
*What's your outlet for stress related to IBD: TV, reading, my wife
*Family Members with IBD: None.
*Are you by chance the best or worst you've been since diagnosis: in the middle *Do you look up to anybody with Crohns now: No
*What activities do you miss the most that you can't do now: Eating out
*Does your employer know you have Crohns:He knows i have some stomach issues and he's OK with it
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think it's a bacteria; but you have to be gentically susceptable or having a low immunity to get it
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: They try to; but often they get frustrated with my whining about it
*Did you ever mispell "Crohn's": NEVER!
*Name one good thing Crohns has done for you: It made me think of the important things in life and become wiser on what's important out there...

 

[ThatGuy2006]

==================================================
*Flaring or Remission now: Flaring once again since 03/2008
*How many colonoscopies have you had done: at least 4-5, working on 6 depending on how my visit with the dr. goes.
*How many total GI's have you seen: 2
*Do you know anybody personally (not the internet) with Crohns: No
*Do you believe you could have done anything in life to avoid Crohns: No
*If you could take away one single symptom, what would it be: The abdominal cramping. I dont mind the trips to the bathroom and whatnot but its hard to have a job, and goto school when you are in pain all day.
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate
*Where is your Crohns located: Ilium and last section of the small intestine
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: empty and disgusting. i am a clean freak!
*Do you experience mostly "D" or mostly "C" with your bowel issues: The Big "D" and I dont mean Dallas.
*How long do most of your flares last: Usually for a few months then the meds would kick in...not so much this time around.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Sweet and Sour Chicken
*How Long have you been diagnosed: 02/2004
*Were you flaring before diagnosis but didn't know it: yes, for a about a month or two. Family doctor wrote it off as GERD...
*Do you like your current GI doc: Yes, he take my case personally because his son is the same age as me and is dealing with a very similar case.
*Have you had surgery for your Crohns: No, and i would like to keep it that way for as long as possible
*If you've been on pred, did you enjoy the experience: What the hell kind of question is this?!
*How many hospital stays have you had: Only 2 so far
*Do You hate explaining your disease to the layman: yes because i always get this look or reaction like, "well at least its not (place terminal illness here)"
*Currently how many trips to the toilet do you make daily: 3-8
*Name one very awful food for your symptoms: Spicy foods and milk
*What's your estimate of the timeframe for a cure for IBD: hopefully in the next 5 years.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: usually alot of anger and sadness.
*How many meds are you on daily: 4
*Ever use Crohns as an excuse when it wasn't one: Not really.
*What's your outlet for stress related to IBD: If it were not for my girlfriend, i would have no hair (because i pulled it all out) and be absolutely insane...
*Family Members with IBD: My Grandmother has UC but its a pretty mild case
*Are you by chance the best or worst you've been since diagnosis: getting close to worse if i dont gain some weight and stop the pain soon.
*Do you look up to anybody with Crohns now: Dwight D. Eisenhower...if he can run the country with Crohn's, then I shouldn't have a problem
*What activities do you miss the most that you can't do now: I miss being able to be outside and stay out there without having to worry about going to the bathroom.
*Does your employer know you have Crohns: Yes, and is pretty understanding.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetics mainly IMO.
*Do you belong to a support group: Besides this awesome site? No.
*Are people close to you understanding of your disease: There are the people that are, and they know who they are...others would just rather ignore it and not face the problem at all.
*Did you ever mispell "Crohn's": I haven't but apparently the spellcheck plugin on Firefox thinks so...
*Name one good thing Crohns has done for you: Made me appreciate the small things in life and made me take things one day at a time.

 

[Han Shan]

*Flaring or Remission now: Remission since mid-July 2008
*How many colonoscopies have you had done: 1 (plus 1 endoscopy)
*How many total GI's have you seen: 1
*Do you know anybody personally (not the internet) with Crohns: No
*Do you believe you could have done anything in life to avoid Crohns: Don’t think so
*If you could take away one single symptom, what would it be: Abdominal pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate
*Where is your Crohns located: Terminal ileum and middle duodenum (my GI doc says I’m a pretty unusual case)
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Don’t have a public restroom nightmare (see below)
*Do you experience mostly "D" or mostly "C" with your bowel issues: Neither…my only real symptom, besides weight loss, is abdominal pain, which is often excruciating (as I said, an unusual case)
*How long do most of your flares last: I figure that my symptoms started in August 2007, became progressively worse, and were not under total control until July of this year. That made it about a 10 month flare.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Raw veggies
*How Long have you been diagnosed: 2/21/2008
*Were you flaring before diagnosis but didn't know it: Yes.
*Do you like your current GI doc: Yes
*Have you had surgery for your Crohns: No, but I came awfully close this spring.
*If you've been on pred, did you enjoy the experience: Definitely. Pred started me on the road to recovery and instantly reduced my pain episodes by over 95%. My only side effect was mild insomnia the first couple weeks
*Do You hate explaining your disease to the layman: Not really.
*Currently how many trips to the toilet do you make daily: About 3.
*Name one very awful food for your symptoms: Any veggies not cooked very soft
*What's your estimate of the timeframe for a cure for IBD: 10 years
*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope: Currently hope
*How many meds are you on daily: The “Cade” every 8 weeks. Folic acid and iron every day
*Ever use Crohns as an excuse when it wasn't one: Not really
*What's your outlet for stress related to IBD: Music, movies, reading, and kratom tea
*Family Members with IBD: None, but I have 2 lactose and fructose intolerant sisters
*Are you by chance the best or worst you've been since diagnosis: Right now, best for sure
*Do you look up to anybody with Crohns now: NFL quarterback David Garrard, and, um, Shannon Doherty (I always did love 90210). Plus President Eisenhower, he who warned us of the military-industrial complex
*What activities do you miss the most that you can't do now: Well, being in a remission at the moment, I can still do it all. However, I love traveling and planning a trip is out of the question when flaring
*Does your employer know you have Crohns: Yes, and he has been super cool about it
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I’d say a little bit of both
*Do you belong to a support group: No
*Are people close to you understanding of your disease: Totally
*Did you ever misspell "Crohn's": Now that you mention it, probably so
*Name one good thing Crohns has done for you: Made me very appreciative and grateful for the times I’m free of pain

 

[BWS1982]

Bump for the new members...let's start sharing.

I'll have to come back and put an updated post; as I read my initial one, I noticed some of it is obsolete or has evolved.

 

[Becky]

Flaring or Remission now:
Not remission, but hopefully heading that way

*How many colonoscopies have you had done:
2
*How many total GI's have you seen:
3
*Do you know anybody personally (not the internet) with Crohns:
no
*Do you believe you could have done anything in life to avoid Crohns:
no
*If you could take away one single symptom, what would it be:
pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps):
mild-moderate
*Where is your Crohns located: ileum
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Crowded...
*Do you experience mostly "D" or mostly "C" with your bowel issues:
D
*How long do most of your flares last: I'm not sure. its harder to tell because I'm not in a full fledged flare. I have been on entocort with my remi for 2 yrs trying to get me back to “normal”.

*If one food on your "bad" list could be made "good" for your Crohns, what is it: tomato sauce or salads
*How Long have you been diagnosed:
about 4 yrs
*Were you flaring before diagnosis but didn't know it:
about 3 months.
*Do you like your current GI doc:
yes
*Have you had surgery for your Crohns:
No
*If you've been on pred, did you enjoy the experience:
just briefly for joint pain. I wasnt on it long enough to get the fun side effects
*How many hospital stays have you had:
just 1 for 5 days where I recieved diagnosis
*Do You hate explaining your disease to the layman:
no
*Currently how many trips to the toilet do you make daily:
average day 3-4 bad day could be up to 10
*Name one very awful food for your symptoms:
tomato sauce
*What's your estimate of the timeframe for a cure for IBD:
no idea
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope:
sometimes hope sometimes sadness
*How many meds are you on daily:
just vitamins daily and then remicade
*Ever use Crohns as an excuse when it wasn't one:
yes
*What's your outlet for stress related to IBD:
relaxing
*Family Members with IBD:
None.
*Are you by chance the best or worst you've been since diagnosis:
in the middle
*Do you look up to anybody with Crohns now:
nope
*What activities do you miss the most that you can't do now:
no really any activities. I miss not having to constantly worry were the bathroom is

*Does your employer know you have Crohns:
yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither:
Genetic
*Do you belong to a support group:
Crohn's Forum
*Are people close to you understanding of your disease:
for the most part yes
*Did you ever mispell "Crohn's":
no
*Name one good thing Crohns has done for you:

 

[MapleLeafGirl]

*Flaring or Remission now: Flaring
*How many colonoscopies have you had done: Two.
*How many total GI's have you seen: One.
*Do you know anybody personally (not the internet) with Crohns: Yes - she has it far worse than I do.
*Do you believe you could have done anything in life to avoid Crohns: No.
*If you could take away one single symptom, what would it be: Pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate
*Where is your Crohns located: Terminal Ileum.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Empty and Disgusting. I don't care who hears me go, but I need cleanliness!
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: I am still on my first major one since being diagnosed and it has been on-going since April 2009.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Mushrooms!
*How Long have you been diagnosed: 4 years.
*Were you flaring before diagnosis but didn't know it: Yep, probably numerous times.
*Do you like your current GI doc: Love him.
*Have you had surgery for your Crohns: No, but likely will soon.
*If you've been on pred, did you enjoy the experience: Yes and no. Love the relief, hate the side effects.
*How many hospital stays have you had: Zero
*Do You hate explaining your disease to the layman: No
*Currently how many trips to the toilet do you make daily: 1 or 2, but I'm on prednisone
*Name one very awful food for your symptoms: Red meat
*What's your estimate of the timeframe for a cure for IBD: 20 years.
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Hope.
*How many meds are you on daily: 2
*Ever use Crohns as an excuse when it wasn't one: Definitely, it's one of the perks .
*What's your outlet for stress related to IBD: Yoga.
*Family Members with IBD: Zero.
*Are you by chance the best or worst you've been since diagnosis: No - I'm in the middle.
*Do you look up to anybody with Crohns now: Kello/MisB/Pen - all really amazing inspirations.
*What activities do you miss the most that you can't do now: None - I still do pretty much everything I really want to do.
*Does your employer know you have Crohns: Yes.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetic with an environmental trigger.
*Do you belong to a support group: Just this forum
*Are people close to you understanding of your disease: Some are and some aren't and some really don't want to understand.
*Did you ever mispell "Crohn's": No.
*Name one good thing Crohns has done for you: Taught me to truly appreciate the good days.

 

[Zalanicht]

*Flaring or Remission now: Surgery induced remission.
*How many colonoscopies have you had done: 1
*How many total GI's have you seen: 2
*Do you know anybody personally (not the internet) with Crohns: Aunt has Crohn's
*Do you believe you could have done anything in life to avoid Crohns: Ate better and got more physical activity.
*If you could take away one single symptom, what would it be: Pain
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe
*Where is your Crohns located: Used to be in the terminal ileum, now it's probably re-occurring at the surgery site.
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: N/A
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: only had one and solved it by surgery so don't know.
*If one food on your "bad" list could be made "good" for your Crohns, what is it: tomato sauce
*How Long have you been diagnosed: 7 months
*Were you flaring before diagnosis but didn't know it: Of course
*Do you like your current GI doc: Yup
*Have you had surgery for your Crohns: Yes 28 cm ileum, ile valve and R colon.
*If you've been on pred, did you enjoy the experience: Liked eating until throwing up but hated mood swings.
*How many hospital stays have you had: 5, including surgery stay, 30 days in total.
*Do You hate explaining your disease to the layman: I tell people straight up and show them scar and they usually are interested.
*Currently how many trips to the toilet do you make daily: 1 solid BM
*Name one very awful food for your symptoms: spicy tomato sauce
*What's your estimate of the timeframe for a cure for IBD: 5-10 years
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Happiness for me being in remission and staying there for as long as possible. But definitely anger when I was flaring, probably the pred.
*How many meds are you on daily: 1, aza. if you don't count vitamins.
*Ever use Crohns as an excuse when it wasn't one: Yes
*What's your outlet for stress related to IBD: Pain killers when I had them or video games.
*Family Members with IBD: 3, aunt with crohn's, mom with some itus, grandpa with diverticulosis o ritus.
*Are you by chance the best or worst you've been since diagnosis: Best
*Do you look up to anybody with Crohns now: Drew Mcfedries a ufc fighter.
*What activities do you miss the most that you can't do now: Being too sick for snowboarding
*Does your employer know you have Crohns: Past employer yes.
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Both
*Do you belong to a support group: Crohns Forum
*Are people close to you understanding of your disease: Yes, one of my good friends has bad UC so we can relate to each other.
*Did you ever mispell "Crohn's": No, but my doctor spelled it "crhon's on some note which I thought was funny. Wasn't my GI so i wasn't too worried.
*Name one good thing Crohns has done for you: Pushed me even farther away from religion which is a good thing.

 

[seaofdreams]

Flaring or Remission now: I've just come out of hospital from a flare, waiting for the Methotrexate to start working and Prednisone is doing it's thing in the meantime.
How many colonoscopies have you had done: Only 1 so far, thankfully!
How many total GI's have you seen: Two in total.
Do you know anybody personally (not the internet) with Crohns: Yes, my aunty.
Do you believe you could have done anything in life to avoid Crohns: I genuinely believe there is nothing different I could have done to prevent it.
If you could take away one single symptom, what would it be: Urgency!
Is your Crohns classed as mild, moderate, or severe (CDAI helps): I would personally say moderate but my GI says moderate to severe.
Where is your Crohns located: Terminal ilium
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: It would depend on how crowded, if there's a line then I will take the nasty, empty toilet any day! lol.
Do you experience mostly "D" or mostly "C" with your bowel issues: I'm fortunate enough to only have either every now and again.
How long do most of your flares last: A few months.
If one food on your "bad" list could be made "good" for your Crohns, what is it: Popcorn! Oh how I miss you.
How Long have you been diagnosed: Just over a year.
Were you flaring before diagnosis but didn't know it: On and off for years.
Do you like your current GI doc: He's great, I couldn't ask for a more attentive or genuinely caring doctor.
Have you had surgery for your Crohns: No and I hope to stay away from the operating table for as long as possible
If you've been on pred, did you enjoy the experience: I am on Pred right now and counting down the ways until I'm off it again!
How many hospital stays have you had: Two
Do you hate explaining your disease to the layman: Yes, I find it really uncomfortable.
Currently how many trips to the toilet do you make daily: It ranges from 0-5, very occasionally it can be more.
Name one very awful food for your symptoms: Dairy
What's your estimate of the timeframe for a cure for IBD: There are so many amazing and promising treatments being developed at the moment but the word "cure" is a really tricky one. I'm not entirely sure there ever will be a permanent "cure" for IBD.
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: It changes a lot (damn pred!) but I'm feeling hopeful that the Methotrexate will help me.
How many meds are you on daily: Only one daily med.
Ever use Crohns as an excuse when it wasn't one: All the time! I need to get some positives out of this disease lol.
What's your outlet for stress related to IBD: Talking to my mum and my friends, they're amazing and I don't know what I would do without them.
Family Members with IBD: My aunt has been diagnosed with Crohn's and my younger brother has been experiencing symptoms for much of his life but has never followed it up.
Are you by chance the best or worst you've been since diagnosis: At the moment I'm at a bit of a lower point but I'm definitely on the way up again
Do you look up to anybody with Crohns now: Every person on this forum. Even though you're all struggling with your own illness and other issues, there's so much support and inspiration
What activities do you miss the most that you can't do now: Just being able to spend the day not wondering where the nearest toilet is.
Does your employer know you have Crohns: Yes and they are so incredibly understanding and supportive.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think that there are both genetic and environmental factors in the development of Crohn's. I honestly don't believe there will ever be a simple answer though.
Do you belong to a support group: Just here.
Are people close to you understanding of your disease: The tiny handful of people I consider to be the closest to me are very understanding of my Crohn's.
Did you ever mispell "Crohn's": Never
Name one good thing Crohn's has done for you: It has given me a whole new perspective on life. Even the smallest things are an achievement and I don't take anything for granted.

 

[tmgread]

*Flaring or Remission now: not sure
*How many colonoscopies have you had done: 1
*How many total GI's have you seen: 3
*Do you know anybody personally (not the internet) with Crohns: no
*Do you believe you could have done anything in life to avoid Crohns: Maybe
*If you could take away one single symptom, what would it be: fatigue
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): moderate to severe
*Where is your Crohns located: all in colon
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: crowded
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: I don't know. I never know for sure if I'm flaring or not
*If one food on your "bad" list could be made "good" for your Crohns, what is it: popcorn
*How Long have you been diagnosed: 8 months
*Were you flaring before diagnosis but didn't know it: yes, but not GI issues
*Do you like your current GI doc: Yes, but he's 6 hours away
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: refused it
*How many hospital stays have you had: none
*Do You hate explaining your disease to the layman: no
*Currently how many trips to the toilet do you make daily: 1-3
*Name one very awful food for your symptoms: popcorn
*What's your estimate of the timeframe for a cure for IBD: 5 years
*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope: fear
*Ever use Crohns as an excuse when it wasn't one: no, but I've been tempted
*What's your outlet for stress related to IBD: I desperately need one
*Family Members with IBD: daughter
*Are you by chance the best or worst you've been since diagnosis: neither
*Do you look up to anybody with Crohns now: members of this forum
*What activities do you miss the most that you can't do now: have energy after long workday to go to yoga
*Does your employer know you have Crohns: Yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: both
*Do you belong to a support group: Crohns Forum
*Are people close to you understanding of your disease: They try, but just don't get it.
*Did you ever mispell "Crohn's": No,
*Name one good thing Crohns has done for you: Made me appreciate good days

 

[treehugger]

*Flaring or Remission now: Flared, have been for almost 2 years now
*How many colonoscopies have you had done: 2
*How many total GI's have you seen: 2
*Do you know anybody personally (not the internet) with Crohns:1, she lives across the road, but uses speed to help her crohns, so we no talk! lol
*Do you believe you could have done anything in life to avoid Crohns: No way
*If you could take away one single symptom, what would it be: The weight loss
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Unsure
*Where is your Crohns located: Small intestine I believe (can't remeber)
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:Empty and Gross
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: year or longer
*If one food on your "bad" list could be made "good" for your Crohns, what is it: Chocolate
*How Long have you been diagnosed: 13 long years
*Were you flaring before diagnosis but didn't know it:yes and saw HEAPS of doctors and was mis diagnoised many times
*Do you like your current GI doc: who? lol
*Have you had surgery for your Crohns: NO!
*If you've been on pred, did you enjoy the experience: Yes
*How many hospital stays have you had: 3 and I was so hungry! GRRR
*Do You hate explaining your disease to the layman: nope
*Currently how many trips to the toilet do you make daily: way to many
*Name one very awful food for your symptoms: spaghetti bolganase (I spend the night in pain on the loo and vomiting) but! can eat lasange no worries...
*What's your estimate of the timeframe for a cure for IBD: They can cure it? or almost have? you serious????
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: today hope, who knows tomorrow
*How many meds are you on daily: 2
*Ever use Crohns as an excuse when it wasn't one: nope, oh, yeah... LOL. To get out of *whistles* with my boyfriend haha
*What's your outlet for stress related to IBD: computer and best friends and LOTS of dvd's!
*Family Members with IBD: None, oh distant cousin (4th) has it and has had surgery (she's younger then me!)
*Are you by chance the best or worst you've been since diagnosis: worst emotionally, been worse physically
*Do you look up to anybody with Crohns now: Not really, only know of one person famous with it and he's a tool...
*What activities do you miss the most that you can't do now: Living!
*Does your employer know you have Crohns: My employer (before I left due to agoraphobia) did know about it and were great! (had my own loo! only cause I was the only girl working there lol)
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: never really thought about it tbh
*Do you belong to a support group: Just this forum, think maybe I've not wanted to know about my/our disease
*Are people close to you understanding of your disease: Yep, they love the phone calls with me screaming 'I did a normal POOOOOOO' lol
*Did you ever mispell "Crohn's": Probably lol Sometimes my fingers are quicker then my head
*Name one good thing Crohns has done for you: Slowed my lifestyle down HEAPS

 

[D Bergy]

==================================================
*Flaring or Remission now: Remission.

*How many colonoscopies have you had. Two too many.

*How many total GI's have you seen: One good one.

*Do you know anybody personally (not the internet) with Crohn's? One person, but it is a tough ice breaking question.

*Do you believe you could have done anything in life to avoid Crohns: You bet.

*If you could take away one single symptom, what would it be: I don't have any current symptoms, so I will settle for that.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate as rated by the Gastro. Mild as rate by me.

*Where is your Crohns located: Stricture was in small bowel, Terminal ilium had some scarring.

*The worst nightmare in a public restroom. Sharing it with Larry Craig. I bet you have to look that up.

*Do you experience mostly "D" or mostly "C" with your bowel issues: Almost never C, but there are certain foods that will give me a short bout of D.

*How long do most of your flares last: Only had one big one, and that was for over two years. None since.

*If one food on your "bad" list could be made "good" for your Crohns, what is it: Onions.

*How Long have you been diagnosed: Four years maybe?

*Were you flaring before diagnosis but didn't know it: Yes.

*Do you like your current GI doc: I like his ability to diagnose, but I do not follow his recommended treatment, as mine is better.

*Have you had surgery for your Crohns: Yes, it was quite an experience.

*If you've been on pred, did you enjoy the experience: No, I deliberately avoided that treatment.

*How many hospital stays have you had: One, hopefully the last one.

*Do You hate explaining your disease to the layman: I usually just say my guts are rotting, and that ends the conversation for the most part.

*Currently how many trips to the toilet do you make daily: One or less.

*Name one very awful food for your symptoms: Milk, Onions, Malt, and Water Melon gives me the trots.

*What's your estimate of the timeframe for a cure for IBD: I will find one before the researchers will. But I will gladly be wrong.

*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: I have no emotional attachment to the disease. It just is.

*How many meds are you on daily: One.

*Ever use Crohns as an excuse when it wasn't one: No, I do not like being sick or letting anyone know I am sick.

*What's your outlet for stress related to IBD: I do not really have any stress related to IBD, but I avoid stress to prevent problems. I keep busy.

*Family Members with IBD: None

*Are you by chance the best or worst you've been since diagnosis: I am better than I have been in years.

*Do you look up to anybody with Crohns now: Just the members here. They put up with some awful problems and symptoms.

*What activities do you miss the most that you can't do now: I can do anything I was able to do before, except for dating. My wife insists that I do not do that.

*Does your employer know you have Crohns: They might, since I took time off for surgery, but I do not advertise it. I am also self employed and I think the owner has Crohn's.

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Both and maybe other factors also.

*Do you belong to a support group: If this is a support group, then yes.

*Are people close to you understanding of your disease: They were when I was really ill. I am not ill now, but I think they would be supportive, if I was.

*Did you ever mispell "Crohn's": No, but rhythm gets me every time.

*Name one good thing Crohns has done for you: Made me think about how to get rid of the symptoms, which led me to getting rid of depression. It gives me something to try to cure. I need better hobbies.

 

[Bosmom1008]

*Flaring or Remission now: Remission.
*How many colonoscopies have you had. at least one a yr for the past 13 years
*How many total GI's have you seen: 2
*Do you know anybody personally (not the internet) with Crohn's? not a one
*Do you believe you could have done anything in life to avoid Crohns: No and I don't put energy into worrying about what already is.
*If you could take away one single symptom, what would it be: fatigue
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate
*Where is your Crohns located: Sm. Intestine and bowel- Patchy is the medical term
*The worst nightmare in a public restroom. Long lines
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: I get two a year like clock work and each last about a month
*If one food on your "bad" list could be made "good" for your Crohns, what is it: raw veggies
*How Long have you been diagnosed: 13 years and counting
*Were you flaring before diagnosis but didn't know it: Yes.
*Do you like your current GI doc: Yes he's the best
*Have you had surgery for your Crohns: Let me knock on the dresser- NO
*If you've been on pred, did you enjoy the experience: I've never been off of it. Yep 13 yrs and never been able to get down past 10 mg daily. Currently on a tapering dose for a separate issue. Having what I like to refer to as Prednisone Personality. Probably don't need to clarify that one for any of you
*How many hospital stays have you had: Honestly probably around 15 +
*Do You hate explaining your disease to the layman: Not really. I've come to accept the fact that most of them either won't understand or will try to give me their own advice
*Currently how many trips to the toilet do you make daily: One or less.
*Name one very awful food for your symptoms: Green bell peppers
*What's your estimate of the timeframe for a cure for IBD: My glass is always half full but being realistic I think at least another 20 years or so
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: After 13 years I don't know that I have a feeling towards it, I've just accepted that this is life a part of my life
*How many meds are you on daily: 10
*Ever use Crohns as an excuse when it wasn't one: No but my husband has on MANY occasions
*What's your outlet for stress related to IBD: Playing with my son, baking, exercising (when I've got the energy) and reading
*Family Members with IBD: No but my mom has IBS
*Are you by chance the best or worst you've been since diagnosis: I think I'm doing pretty well
*Do you look up to anybody with Crohns now: Nope
*What activities do you miss the most that you can't do now: I don't think I've really allowed my Crohns to disallow me from doing anything. Sure I've missed a few concerts and such but other than that it's been life as usual with MANY bumps along the way
*Does your employer know you have Crohns: Yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think it's a mix but the longer I have it the more I lean towards genetics that were compounded by environmental factors
*Do you belong to a support group: No I tried a local meeting once but it wasn't for me
*Are people close to you understanding of your disease: Yes they are understanding but no they don't really understand the disease

*Did you ever mispell "Crohn's": No

*Name one good thing Crohns has done for you: Made me realize that even when I feel awful, theres always another person who has it worse than I do. Oddly it's made me a more optimistic person

 

[BWS1982]

*What activities do you miss the most that you can't do now: I can do anything I was able to do before, except for dating. My wife insists that I do not do that.

:lol:

 

[Shannon]

*Flaring or Remission now: Flaring for nearly a year now.

*How many colonoscopies have you had done: 2 scopes.

*How many total GI's have you seen: the entire GI team at Children's.

*Do you know anybody personally (not the internet) with Crohns: Not personally, but everyone always tells me "I know somebody with Crohn's".

*Do you believe you could have done anything in life to avoid Crohns: Well, we'll never know.

*If you could take away one single symptom, what would it be: The fatigue, since the other symptoms are managed well with pills.

*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe

*Where is your Crohns located: From the terminal illeum all the way down.

*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Just give me garaunteed privacy, it's hard enough dealing with the symptoms. No audience, thanks.

*Do you experience mostly "D" or mostly "C" with your bowel issues: Mostly D interrupted only by C.

*How long do most of your flares last: Well, it would seem a good long time, it was a year of symptoms before my recent diagnosis.

*If one food on your "bad" list could be made "good" for your Crohns, what is it: Spicy foods like chili.

*How Long have you been diagnosed: About two weeks.

*Were you flaring before diagnosis but didn't know it: Yes, for nearly a year.

*Do you like your current GI doc: I love her, she's very thorough.

*Have you had surgery for your Crohns: No, I'm hoping to avoid it at all costs.

*If you've been on pred, did you enjoy the experience: No, I'm still tapering and hating the bad acne, the constant sweating, the frequent urination, the bloating, the extra chins, the moodswings, the panic attacks, and the insatiable appetite.

*How many hospital stays have you had: 1 stay, for a week. No more please!

*Do You hate explaining your disease to the layman: Not that bad. I don't like it when people can't grasp that it's not merely a diet or stress issue.

*Currently how many trips to the toilet do you make daily: Without meds, easily 10 and upwards. On meds, between 4 to 6.

*Name one very awful food for your symptoms: Right now anything carbonated.

*What's your estimate of the timeframe for a cure for IBD: I'm not versed in the progress of the whole thing, but I would like it to be far along.

*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: I battle it all a few times a day, but what stays is a general desire to handle this with poise.

*How many meds are you on daily: 22.

*Ever use Crohns as an excuse when it wasn't one: It's hard not to think of it as something that makes itself relevant in every part of my life right now. I'm trying to separate it, it gets easier every day.

*What's your outlet for stress related to IBD: Eating right makes me feel proactive. Schoolwork soothes me because I am trying to live a normal senior year. Corresponding with family and this forum relieves a lot of stress. Prayer and a heart for God is the ultimate, though.

*Family Members with IBD: My uncle was diagnosed with Crohn's but suffered one flare up and no subsequent ones, without any treatment. A few have IBS.

*Are you by chance the best or worst you've been since diagnosis: The best, health wise. My symptoms have been managed by the pills, but the pills have their own toll on me. Emotionally, I am stripped and getting stronger. Spiritually, definitely the best I have been.

*Do you look up to anybody with Crohns now: The people on these forums are the strongest I know.

*What activities do you miss the most that you can't do now: Going to highschool and being able to handle a reasonable amount of stress, having the energy to have a healthy relationship with my boyfriend, going out and not paying for it the next day, feeling good about my appearance.

*Does your employer know you have Crohns: Unemployed.

*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I think environment and genes contribute.

*Do you belong to a support group: This forum is basically that for me.

*Are people close to you understanding of your disease: They try and I have a lot of autoimmune in my family, so for the most part they succeed. My boyfriend struggles with understanding how much it affects my personality, not just my body.

*Did you ever mispell "Crohn's": Yes, the first week of my diagnoses. I spelled it as "Chrones" and "Chron's" for awhile.

*Name one good thing Crohns has done for you: Change everything in a beautifully and terribly abrupt moment.

 

[Nyx]

Flaring or Remission now: Remission
*How many colonoscopies have you had done: 4, it'll be 5 in November
*How many total GI's have you seen: 1
*Do you know anybody personally (not the internet) with Crohns: yes
*Do you believe you could have done anything in life to avoid Crohns: Yes
*If you could take away one single symptom, what would it be: feeling sick when eating
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): was severe, now mild
*Where is your Crohns located: all in colon
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: disgusting for sure
*Do you experience mostly "D" or mostly "C" with your bowel issues: C
*How long do most of your flares last: 6 months or more
*If one food on your "bad" list could be made "good" for your Crohns, what is it: veggies
*How Long have you been diagnosed: 4 years, 4 months
*Were you flaring before diagnosis but didn't know it: No
*Do you like your current GI doc: Yes
*Have you had surgery for your Crohns: Yes, colostomy
*If you've been on pred, did you enjoy the experience: Loved it, hated the moustache and fat face
*How many hospital stays have you had: 2
*Do You hate explaining your disease to the layman: no
*Currently how many trips to the toilet do you make daily: a normal amount
*Name one very awful food for your symptoms: fried food
*What's your estimate of the timeframe for a cure for IBD: 15 years
*How many meds are you on daily: none
*What's more prevalent in your diagnosis now, anger, fear, sadness, or hope: Hope
*Ever use Crohns as an excuse when it wasn't one: No
*What's your outlet for stress related to IBD: Unfortunately for him, my bf
*Family Members with IBD: None
*Are you by chance the best or worst you've been since diagnosis: best, by far
*Do you look up to anybody with Crohns now: members of this forum
*What activities do you miss the most that you can't do now: none, I do more now than I did before I diagnosed
*Does your employer know you have Crohns: I'm not employed, but my teachers and fellow students know
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: pathogens perhaps, not necessarily genetic
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: yes, very
*Did you ever mispell "Crohn's": No
*Name one good thing Crohns has done for you: made me appreciate all the good things I do have in my life. You can get through anything with a good support system.

 

[dreamintwilight]

Flaring or Remission now:I want to say I'm in remission now, but haven't had the official confirmation yet. I've had no pain or problems since April though!
How many colonoscopies have you had done: One so far, but I'm supposed to have one done in November/early December. I never thought I'd say it, but I'm excited to get it done because I've been feeling so well!
How many total GI's have you seen: Technically, I've seen 4, but 3 of the 4 were when I was in the hospital getting my diagnosis. I'm happy with the doc I have now!
Do you know anybody personally (not the internet) with Crohns: I found out someone I knew from college has Crohn's. She's miraculously has been able to keep it under control despite taking no conventional medicine, no surgery, and only taking aloe vera!
Do you believe you could have done anything in life to avoid Crohns: Based on all the research that is out there, there is no evidence that diet plays a role in the onset of Crohn's, but I still feel like my poor diet through college didn't help matters. But, I think the ultimate trigger for me was one of the most stressful times in my life, which was out of my hands.
If you could take away one single symptom, what would it be: Strictures - I would be willing to do more trial and error with certain foods if I didn't have the fear in the back of my mind that I was going to have a blockage.
Is your Crohns classed as mild, moderate, or severe (CDAI helps): Moderate-severe, due to the presence of fistulas, narrowing, and an abscess.
Where is your Crohns located: Terminal ilium mainly, but my scope showed slight signs of colitis in the upper part of my colon leading into the ileum.
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: I don't struggle with urgency, so I would have to say empty and disgusting.
Do you experience mostly "D" or mostly "C" with your bowel issues: More on the C side. I can tell when I haven't had enough fruit or veggies the day before.
How long do most of your flares last: I am not sure. I didn't start noticing terrible symptoms until last summer and they continuously got worse until December when I couldn't take it anymore. I've been essentially symptom free since April once my meds got figured out. So, I haven't yet had a flare since the first one ended.
If one food on your "bad" list could be made "good" for your Crohns, what is it: I would say fiber and things with skins! I never realized how much it was a part of my diet until I had to stay away from it. I really miss so many fruits and beans!
How Long have you been diagnosed: Officially, coming up on 7 months, but it's been about 8 months since they suspected I had Crohn's.
Were you flaring before diagnosis but didn't know it:Yeah...I can go back 4 years prior and recognize early signs. Last summer was when I started having severe abdominal cramps and bloating.
Do you like your current GI doc: Yup! He talks super fast, but he answers all my questions and listens to me.
Have you had surgery for your Crohns: Nope
If you've been on pred, did you enjoy the experience: I've been on Entocort and it wasn't too bad. The only thing I hated was my skin went out of control, which I hate.
How many hospital stays have you had: Diagnosis and then partial bowel obstruction
Do you hate explaining your disease to the layman: No, but I find that people don't really seem to think it's that big of a deal.
Currently how many trips to the toilet do you make daily: Usually 1-3 times a day.
Name one very awful food for your symptoms: I'm still not 100% sure on trigger foods as I've tended to stay away from lots of the general no-no foods. But, I think if I eat too many corn chips it makes my stomach all gurgly and stuff and my bathroom trips seem to be more frequent the next day.
What's your estimate of the timeframe for a cure for IBD: I honestly have no clue. I think I'd rather be prepared to deal with this for the long haul and then be surprised when a "cure" comes early.
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Mostly hope, but a little bit of fear knowing my medications will be decreased soon and I'm hoping to stay symptom-free through that.
How many meds are you on daily: One daily medicine, not including all my vitamins/supplements.
Ever use Crohns as an excuse when it wasn't one: Not really, but I'm sure it will happen one day
What's your outlet for stress related to IBD: My husband's really been a tremendous support through all of this. For specific concerns, I go to the forum
Family Members with IBD: None of my family has been diagnosed with any type of IBD, though my brother-in-law has diverticulitis.
Are you by chance the best or worst you've been since diagnosis: I'm definitely the best I've been since diagnosis. I'm really praying and hoping it stays this way for a long while!
Do you look up to anybody with Crohns now: I'm inspired by all the people who have to deal with so many more difficult things regarding this disease than I have whether it's physically, emotionally, etc.
What activities do you miss the most that you can't do now: Cooking new foods and traveling to exotic places.
Does your employer know you have Crohns: I'm not currently employed.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I definitely think there's something to the genetic predisposition that is then triggered by something.
Do you belong to a support group: Crohn's Forum!!
Are people close to you understanding of your disease: Yes, though, most of them do not live near me. So, they don't really know what it's like to be around Marisa the Crohnie. But, they are learning
Did you ever mispell "Crohn's": I think a few times at the beginning and then I remembered.
Name one good thing Crohn's has done for you: I definitely have changed my outlook on life. I'm more positive than I was before and actually feel I have a purpose. Crohn's gave me a reason to reevaluate my life and what's truly important!

 

[Entchen]

Flaring or Remission now: Either flaring and not responding fully to Prednisone or have developed a second condition. Will know soon!
How many colonoscopies have you had done: 1/2,because it couldn't be completed. It's double balloon procedures for me from now on.
How many total GIs have you seen:1
Do you know anybody personally (not the internet) with Crohns: Pretty sure my mom does, but the medical record says extensive PAST disease and she is only sick about once/year and has never had it investigated as she thought it was just a strange occasional thing, like how sometimes people seem to get food poisoning more than others.
Do you believe you could have done anything in life to avoid Crohns:
No. The literature does not support this, although some papers suggest that perhaps the date of onset can be affected by external factors. Pre-Crohn's, I ran half marathon distances, competed in amateur ballroom dance competitions, ate tons of salad and fruit and was in the absolute best health I'd ever been in.
If you could take away one single symptom, what would it be:Pain.
Is your Crohns classed as mild, moderate, or severe (CDAI helps): Mild to moderate. So thankful.
Where is your Crohns located: Colon. Something shows up in two spots in the small intestine, but my GI doesn't know if it's Crohn's or not there, too.
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Empty and disgusting.
Do you experience mostly "D" or mostly "C" with your bowel issues: D
How long do most of your flares last: We aren't sure if we've stopped the first one yet.
If one food on your "bad" list could be made "good" for your Crohns, what is it: Hot dogs. Hee hee. I used to treat myself to a couple of chicken hot dogs every once in a while as a treat for my otherwise good behaviour.
How Long have you been diagnosed: May 25 (tests suggested it in April)
Were you flaring before diagnosis but didn't know it: Yes. I went to a doctor a few years ago, and she suggested that having D 12 times EVERY day was "just normal for some people." So then I learned to live with that and the bloating and the indigestion until the pain and vomiting started.
Do you like your current GI doc: Yes. He could be a little more open to a few things (ex: he claims that, if I'm not having D right now, then my current pain and other symptoms aren't from Crohn's, even though the Prednisone is almost certainly responsible for stopping the D), but otherwise, yes.
Have you had surgery for your Crohns: No.
If you've been on pred, did you enjoy the experience: No, although I am learning to laugh at the moon face. Sort of.
How many hospital stays have you had: 0.
Do you hate explaining your disease to the layperson: No.
Currently how many trips to the toilet do you make daily: 6-10
Name one very awful food for your symptoms: Lettuce makes me bleed!
B]What's your estimate of the timeframe for a cure for IBD: 65 years.
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: Mostly hope, but a little bit of fear knowing my medications will be decreased soon and I'm hoping to stay symptom-free through that.
How many meds are you on daily: Prednisone. Soon adding Salofalk back into the mix, too.
Ever use Crohns as an excuse when it wasn't one: No.
What's your outlet for stress related to IBD:Exercise! When it hurts to stay still and it hurts to move, I might as well move. Feel like I'm walking on air after a spin class, pain or no.
Family Members with IBD: Probably my mom.
Are you by chance the best or worst you've been since diagnosis: Not either one.
Do you look up to anybody with Crohns now: I look up to a number of people here who present levelheaded advice and offer kind words.
What activities do you miss the most that you can't do now: Running.
Does your employer know you have Crohns: HR at the university college doesn't know, but I'm being very open about it, just haven't formally informed them.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: I definitely think there's something to the genetic predisposition that is then triggered by something.
Do you belong to a support group: Crohn's Forum.
Are people close to you understanding of your disease: People keep surprising me by telling me about reading and research they've done to better understand what's going on. Love them!
Did you ever mispell "Crohn's": Nah. I learned about the disease for a 6th grade science fair project.
Name one good thing Crohn's has done for you: Gives me better insight into chronic illness, something that's been one of my key interests as a research health psychologist. Maybe eventually I'll get a chronic illness study off the ground as planned years and years ago! (Grad school required a change in initial study plans.)

 

[DustyKat]

Flaring or Remission now: Roo is in remission.
How many colonoscopies have you had done: None.
How many total GIs have you seen: 2.
Do you know anybody personally (not the internet) with Crohns: Yes. One other distant relative and 2 other people in the same town.
Do you believe you could have done anything in life to avoid Crohns: No.
If you could take away one single symptom, what would it be: SBS.
Is your Crohns classed as mild, moderate, or severe (CDAI helps): Initially severe.
Where is your Crohns located: Ileum.
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: ?
Do you experience mostly "D" or mostly "C" with your bowel issues: C before diagnosis now D.
How long do most of your flares last: Hasn't had one since surgery/diagnosis.
If one food on your "bad" list could be made "good" for your Crohns, what is it: ?
How Long have you been diagnosed: July 10 2006.
Were you flaring before diagnosis but didn't know it: Yes. GI reckons the Inflammation was present for about 2 years.
Do you like your current GI doc: Yes.
Have you had surgery for your Crohns: Yes.
If you've been on pred, did you enjoy the experience: N/A.
How many hospital stays have you had: 2. Trying to diagnose the problem.
Do you hate explaining your disease to the layperson: No.
Currently how many trips to the toilet do you make daily: 5 - 7.
Name one very awful food for your symptoms: Red meat.
What's your estimate of the timeframe for a cure for IBD: 30 years.
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: hope.
How many meds are you on daily: 1 tablet daily, 1 tablet three times a week.
Ever use Crohns as an excuse when it wasn't one: Yes.
What's your outlet for stress related to IBD: ?
Family Members with IBD: Distant cousin.
Are you by chance the best or worst you've been since diagnosis: The best.
Do you look up to anybody with Crohns now: My daughter and the members of this forum.
What activities do you miss the most that you can't do now: Not an activity but spontaneity.
Does your employer know you have Crohns: N/A.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: Genetics and a trigger.
Do you belong to a support group: Crohn's Forum.
Are people close to you understanding of your disease: Yes.
Did you ever mispell "Crohn's": No.
Name one good thing Crohn's has done for you: I think it has shaped Roo into the young woman she is today and what she has become I cannot fault. She is kind, caring, warm and passionate about life.

Hope that's not too confusing

Dusty.

 

[Dippymint]

Flaring or Remission now: Flaring
How many colonoscopies have you had done: 5+
How many total GIs have you seen: 4
Do you know anybody personally (not the internet) with Crohns: No. Only friends of friends
Do you believe you could have done anything in life to avoid Crohns: No.
If you could take away one single symptom, what would it be: D
Is your Crohns classed as mild, moderate, or severe : Moderate to Severe now.
Where is your Crohns located: small bowel
The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: empty and disgusting
Do you experience mostly "D" or mostly "C" with your bowel issues: Mixture of both
How long do most of your flares last: up to a couple of years
If one food on your "bad" list could be made "good" for your Crohns, what is it: Curry
How Long have you been diagnosed: 34 years but had for 41 years
Were you flaring before diagnosis but didn't know it: Yes.
Do you like your current GI doc: Yes.
Have you had surgery for your Crohns: Yes will ahve 27th Sept 2010.
If you've been on pred, did you enjoy the experience: N/A.
How many hospital stays have you had: 5 and next 1 on 27th
Do you hate explaining your disease to the layperson: No.
Currently how many trips to the toilet do you make daily: 15 - 20.
Name one very awful food for your symptoms: lettuce.
What's your estimate of the timeframe for a cure for IBD: 10-15 years.
What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: sadness & hope
How many meds are you on daily: Nil
Ever use Crohns as an excuse when it wasn't one: Yes.
What's your outlet for stress related to IBD: used to be swimming

Family Members with IBD: Nil
Are you by chance the best or worst you've been since diagnosis: Not as bad as 41 years ago but bad enough for surgery.
Do you look up to anybody with Crohns now: No
What activities do you miss the most that you can't do now: Walking.
Does your employer know you have Crohns: N/A.
Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: neither
Do you belong to a support group: Crohn's Forum, NACC
Are people close to you understanding of your disease: Yes.
Did you ever mispell "Crohn's": Yes
Name one good thing Crohn's has done for you: Made me a caring person of other peoples health problems

 

[HeatherMN]

*Flaring or Remission now: let's call it maintenance
*How many colonoscopies have you had done: 4, also SBFT, esophagram, 2 abdominal CT's and an MRI
*How many total GI's have you seen: 4
*Do you know anybody personally (not the internet) with Crohns: yes, my sister
*Do you believe you could have done anything in life to avoid Crohns: not gotten food poisoning?
*If you could take away one single symptom, what would it be: fatigue
*Is your Crohns classed as mild, moderate, or severe (CDAI helps): Severe
*Where is your Crohns located: small and large bowel
*The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting: Eh, empty/gross because I guess I can try to hover, I like my privacy (ditto!)
*Do you experience mostly "D" or mostly "C" with your bowel issues: D
*How long do most of your flares last: 6 mo to 1 year
*If one food on your "bad" list could be made "good" for your Crohns, what is it: popcorn
*How Long have you been diagnosed: 9 years
*Were you flaring before diagnosis but didn't know it: yup, was pregnant with twins at the time so I was told it was all hormonal
*Do you like your current GI doc: Yes I do
*Have you had surgery for your Crohns: No
*If you've been on pred, did you enjoy the experience: No
*How many hospital stays have you had: not directly for Crohn's but have had to have my gallbladder and tonsils out due to side effects from meds and the disease
*Do You hate explaining your disease to the layman: it's embarassing
*Currently how many trips to the toilet do you make daily: 5-6 depending on what I eat
*Name one very awful food for your symptoms: McDonald's
*What's your estimate of the timeframe for a cure for IBD: not in my lifetime...
*What's more prevelent in your diagnosis now, anger, fear, sadness, or hope: shame and anger
*How many meds are you on daily: too freaking many!
*Ever use Crohns as an excuse when it wasn't one: probably a few times
*What's your outlet for stress related to IBD: trying to relax, yoga when I have the energy
*Family Members with IBD: Sister w/Crohn's; also have colon cancer in my mom's and dad's sides
*Are you by chance the best or worst you've been since diagnosis: ?
*Do you look up to anybody with Crohns now: everyone here!
*What activities do you miss the most that you can't do now: I would say exercise, but I didn't really do it before either
*Does your employer know you have Crohns: Yes
*Where do you think Crohn's comes from, a pathogen, pure genetics, or neither: both
*Do you belong to a support group: Crohn's Forum
*Are people close to you understanding of your disease: most of them
*Did you ever mispell "Crohn's": once in a while
*Name one good thing Crohns has done for you: weight loss

 

[stefan]

• How many colonoscopies have you had done:
  I think 4 upper-endoscopies and 4 colonoscopies, usually done together
  
• How many total GI's have you seen:
  I have only seen the one GI, but have seen 2 different GIs of his choice when he's been unavailable
  
• Do you know anybody personally (not the internet) with Crohns:
  I've met about 20 through an Aussie website (some are UC not CD), but otherwise no
  
• Do you believe you could have done anything in life to avoid Crohns:
  No, but perhaps avoiding Roaccutane would have reduced the time before it came to the surface
  
• If you could take away one single symptom, what would it be:
  Tiredness/lethargy (be it a symptom or side effect)
  
• Is your Crohns classed as mild, moderate, or severe (CDAI helps):
  moderate/severe by CDAI, but other than the actual bowel ulcerations, I'm relatively asymptomatic
  
• Where is your Crohns located:
  oesophagus and towards the end of the colon
  
• The worst nightmare in a public restroom, crowded and clean, or, empty and disgusting:
  somewhat disgusting at clubs in the city
  
• Do you experience mostly "D" or mostly "C" with your bowel issues:
  C even with regular Normacol, D only ever medication induced
  
• How long do most of your flares last:
  months
  
• If one food on your "bad" list could be made "good" for your Crohns, what is it:
  none, food doesn't seem to be much of a factor for me, provided I'm not feeling sick
  
• How Long have you been diagnosed:
  5 years (mid 2005)
  
• Were you flaring before diagnosis but didn't know it:
  No
  
• Do you like your current GI doc:
  Yes, it's great having someone that I get along with well, though the other 2 GIs I've seen are great too
  
• Have you had surgery for your Crohns:
  No
  
• If you've been on pred, did you enjoy the experience:
  No, on 10mg still feel lack of tolerance and patience, but worst is the cataracts & osteoporosis at 24
  
• How many hospital stays have you had:
  14 or more actual admissions
  
• Do You hate explaining your disease to the layman:
  It's interesting sometimes, but I explain it very differently depending on the background they have
  
• Currently how many trips to the toilet do you make daily:
  1 or 2
  
• Name one very awful food for your symptoms:
  None really
  
• What's your estimate of the timeframe for a cure for IBD:
  A decade or five, but I expect we'll see much more useful treatments (ie more targeted than TNF inhibitors) appear in the next decade.
  
• What's more prevelent in your diagnosis now, anger, fear, sadness, or hope:
  Hope that it'll stay under control
  
• How many meds are you on daily:
  6 prescription and 9 over the counter daily, plus 3 weekly/fortnightly
  
• Ever use Crohns as an excuse when it wasn't one:
  Not really, but I may have over played the other effects (eg tiredness) a couple of times to avoid explaining my reasons in depth
  
• What's your outlet for stress related to IBD:
  humour, and learning/researching the issues
  
• Family Members with IBD:
  none
  
• Are you by chance the best or worst you've been since diagnosis:
  best now
  
• Do you look up to anybody with Crohns now:
  not exactly, but I admire a lot of people I know elsewhere that are doing realy well for themselves now
  
• What activities do you miss the most that you can't do now:
  Socialising properly
  
• Does your employer know you have Crohns:
  N/A still studying, but yes those at uni that need to know (and some that don't) are all aware
  
• Where do you think Crohn's comes from, a pathogen, pure genetics, or neither:
  Genetic predisposition which may or may not be triggered by environmental/dietary issues of some description.
  
• Do you belong to a support group:
  Not a physical one, but I use an Aussie support forum like this regularly
  
• Are people close to you understanding of your disease:
  Yes, family and some good friends
  
• Did you ever mispell "Crohn's":
  No, but I always laugh when I see it wrong
  
• Name one good thing Crohns has done for you:
  Given me a much better understanding of a wide range of health issues