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AndiGirl

AndiGirl

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This post is meant to let off some steam. There are many of us who are stressed out over being in pain, along with being misunderstood. Feel free to add your comments, two cents worth, and please share comments that were directed to/at you as a sufferer of CD.

My thoughtless brother-in-law- "You can overcome your disease if you just try harder."

A pharmacist at my medical center- "Oh you have Crohn's Disease. I feel sorry for your husband. My ex-wife had that disease. Man! She was hard to live with."

A co-worker- "Your husband is great, he is standing by you through this disease." Please understand that she just went through a very ugly divorce. My husband knew that I had the disease before we got married.

My mother- "I don't know why you have that disease?" Never mind that it is on both sides of my family. My answer to her stupid question/statement, "I decided to order it from the catalog."

My female cousin- "I wish I had the disease. I wouldn't have to worry about my weight."

A doctor (before I was diagnosed)- "I think the pain is mostly in your head. If you want to feel better, you can. You need to change your thinking."
 
Nameless: "I think your pain is all emotional. You should go to counseling." Of course, this is the same person who told me it was silly of me to be scared after 5 weeks of coughing up blood because, "It's nothing."
 
Walk-in clinic doctor, several years before diagnosis, responding to my report of severe D of 10 - 15+ times/day: "That's just normal for some people."

Family doc, in response to my comment that I would be reading to learn about my new Crohn's diagnosis: "Don't read so much that you scare yourself."

And humourous positive: "I wish I had your disease! Never have to eat vegetables again!" (Friend A) and "She has a disease that doesn't let her eat vegetables" (Friend B). I so appreciate when my friends show compassion by coming alongside me and take the lighter side of things. So much easier for me to hear than "I'm so sorry," which they know makes me cry, lol.
 
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Nameless: "Why did you quit your job? What are you going to do with yourself, won't you get bored? "
Me thinking to myself: work with my doctors to get my Crohn's in remission, stay off my feet because of my 3rd DVT in the groin & work w/my other MD to get rid of it, take some serious pain medication as I am hurting & then I'm going to slap you upside the head

Sister bugging me for several months when I was flaring: Why don't you try and get pregnant? You can go off your meds for 9 months to have a baby. It WON'T AFFECT your Crohn's.

Me thinking to myself: Do you have an MD after your name? Then I said to her in order to shut her up as I really didn't want to argue with stupidity: I'll talk it over with my doctors & get back to you.

my mom talking to me in the ER after my husband, then boyfriend, brought me in due to a full blown bowel obstruction: You do know that he's going to dump you after all of this is over with.

Me thinking to myself once I recovered and still dating my husband:Well guess what....mom you ARE WRONG!!! My husband educated himself by attending the local CCFA and ostomy support group meetings in order to learn what to do in case of flare ups and obstructions before we got married so there. We've been married for almost 14 yrs. now, what do you have to say about that?? nyay nyay

and my favorite of all time from my "loving sister": you are a bag lady
after I had my ileostomy surgery
 
Gutless, your husband rocks! I imagine you two must be so good to each other.

:award2:
 
I agree with Kelly. You are blessed. I know this sounds incredibly morbid, but sometimes I think others are just waiting for my husband to leave me. I am a teacher and the teacher in my building had made the comment about my husband sticking by me. I should have said, "Well the marriage vows do indicate, in sickness and in health." I am glad that there are loving and supportive spouses out there.
 
"nobody will take you on with your f***** illness" - one of my charming ex-husband's parting shots...

i'm getting married in August. :D
 
Conversation not long after diagnosis, I was still very thin because I was still in a flare.
Work colleague- How do you stay so thin?
Me- Well it's because of the Crohn's.
Colleague- What's that got to do with it?
Me- *graphic explanation with lots of hand signals and sound effects*
colleague- oh

And another favourite of mine- in hospital, after having a dose of codeine and 2 shots of morphine every night, the doc told me they couldn't find anything wrong and discharges me because 'everyone gets stomachache sometimes'!
 
GutlessWonder86 said:
and my favorite of all time from my "loving sister": you are a bag lady
after I had my ileostomy surgery
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Hee hee...I still get that one from my fiance..I think it's hilarious! lol But I always threaten to stick the bag on his nose...we're weird that way. I just have to laugh...
 
"it could be appendicitis"..... this, from an A&E doctor after i'd explained that i'd had surgery in 1986 to remove all my large intestine...

my answer - i couldn't think of one... i just stared blankly at him and eventually he got it. lol!
 
AndiGirl said:
I agree with Kelly. You are blessed. I know this sounds incredibly morbid, but sometimes I think others are just waiting for my husband to leave me. I am a teacher and the teacher in my building had made the comment about my husband sticking by me. I should have said, "Well the marriage vows do indicate, in sickness and in health." I am glad that there are loving and supportive spouses out there.
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My then-wife, calling from the airport, where I thought she was leaving on a business trip: "I'm moving back to LA". This was 8 months after my symptoms began, and 4 days after going with me on my 1st visit with my 2nd GI doc & hearing him say I might have Crohn's or a tumor. The divorce papers arrived 1 week later.

We had written our own marriage vows. Stupid me, left out the part about "better or worse".

It's truly amazing how insensitive the people we encounter at all levels in our lives can be sometimes. Having a partner who stands by you must really make a huge difference in being able to stand all the other nitwits.
 
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dingbat said:
"it could be appendicitis"..... this, from an A&E doctor after i'd explained that i'd had surgery in 1986 to remove all my large intestine...

my answer - i couldn't think of one... i just stared blankly at him and eventually he got it. lol!
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Amazing, Sue. Anatomy must not have been his best subject! :D

And glad to hear about the wedding!
 
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David in Seattle said:
Amazing, Sue. Anatomy must not have been his best subject! :D

And glad to hear about the wedding!
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lol - he must've thought i was one of those lucky patients who gets all the colon removed but the appendix is left inside :D

thanks re the wedding.. i hope things are ok for you now - & that you find (or have found) a more understanding soulmate. :)
 
Boss #1 after my return to work after 2 months of sick leave: "you should enter that slimmer of the year competition!..... er er.... er... not that you were fat before, I didn't mean that".

Boss #2 (in a truly wonderous display of male chauvinism) - to my ex-boyfriend in a bar just after I'd returned to work after 2 months of sick leave: "don't worry mate, it's not your fault.... When I left my last wife she got really ill and lost tonnes of weight too. Women just don't handle break ups as well as us men."

Apparently I don't have a nasty chronic illness, I'm just heartbroken. You have to laugh.
 
Nameless family member: "If I were on that much prednisone, I would have refinished your house by now."

Anesthetist: "You're not old. So, why are you here for a colonoscopy today?"
 
Locum Doctor - 'You've brought this disease on yourself because you smoke'

Old GP from years ago - 'This is all in your head, I think you're depressed, how many Mars bars do you eat again?'

A work colleague - 'I wish I had Crohn's so I could lose some weight!'

My boyfriend Mark - 'What will it be? Pred or Dead?'

The Big Burly Scot - 'Humira? What do you want that for? You're not that ill!'

Mark's Mum - 'Crohns? Oh yeah, my neighbour's brother's aunt's sister's cat had that!'

Jeez, it beggar's belief!
 
Just remembered another comment- when I was not long diagnosed I went to a party and we had a buffet. So I was scraping all the veg out of a piece of quiche so I could have the pastry and the eggy stuff, and this woman came to talk to me asking why I was eating weird stuff. So I explained, and she basically said my diet would give me cancer!
 
David in Seattle said:
My then-wife, calling from the airport, where I thought she was leaving on a business trip: "I'm moving back to LA". This was 8 months after my symptoms began, and 4 days after going with me on my 1st visit with my 2nd GI doc & hearing him say I might have Crohn's or a tumor. The divorce papers arrived 1 week later.
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Oh, David, that's just unbelievable. I hope she's got good deodorant because she is going to be sweating in hell when she gets there.

Here's a funny convo I had with my husband years back. I was never a big one on "why me" or trying to find some sort of logical reasoning why I had a disease, but one day in a fit of introspection, I asked, "What gives? Why did this happen to me?"

Levi: "The rest of your life is perfect. You needed some bad karma to balance it out."

Me: "What about you? Your life is perfect. Where is your bad karma for balance?"

Levi: "Oh, honey, you got enough bad karma for both of us."
 
Going to see one of the out of hours doctors, before I was diagnosed with arthritis, as I was unable to walk because of the pain and being told "there is nothing I can do, would you benefit from counciling?"

This was followed by me bursting into tears I didn't need counceling I was in agony, I needed painkillers and strong ones.

This one is similar to some of the others when I went for my first lot of humira the nurse said before my injection "you have a lovely flat stomach".

Had to stop myself from saying "yep I havn't eaten properly in over two weeks and I spend my life in the bathroom this it what happens." Lol
 
My GP, when at the end of his medical tether and couldn't figure out what else to prescribe or suggest, asked if I'd considered meditation and yoga. I made some kind of weird noise which must have sounded like I was interested, and he reached into his filing cabinet and whipped out a sheet of paper that read "Apologies and Forgiveness." Basically, it was a chant where I would ask the universe (I suppose?) to forgive me for all the bad things I'd done and that would set me on the path to healing. My doctor felt that I really carried a lot of guilt and once I'd seriously applied myself to the business of 'apologizing' and asking for 'forgiveness', I'd be all better.

Seriously, I just about fell off the chair. I mean, when I've done something I believe was out of line, hurtful, disrespectful, or that I regret in any way, I go straight up to the person, apologize and try to figure out how to take responsibility to change things. I don't need to bloody well chant about it. Sheesh. I've always known that my doctor is a bit flaky and a bit of a hippy, but this really confounded me.

Ameslouise, let me know if you want a copy of the mantra!:)
 
I am so sorry for all the ignorant and insensitive comments. I'm so glad to be a member of this forum. I can laugh at some of the stupidity that I have faced in my life. I feel for all those who have lost relationships due to this horrible disease.
 
I think the best one for my was receiving a call from my boss whilst in hospital. My boyfriend had left a voicemail on his office phone the night before explaning that I'd been admitted into hospital again and so I wouldn't be in work the next day, and that either he or myself would keep my boss updated. My boss called my mobile on picking up this message, to check that I was OK. I explained to him that I'd come to hospital for a CT scan, and that they'd found a tear in my intestine which had leaked fluid and gunk into my gut, creating a 5cm abscess, and the doctors insisted that I needed to stay in hospital for treatment and monitoring.

"Oh," he said, "well you don't sound very sick."

Gah!
 
I thin this goes to unbelievable comments. My GI usually acts as if he feels incompetend if I am not sick as a dog. Our dialogue usually goes like this

How are you?

Fine I just have diarrhea

But you have blood on your stools

No I dont

But you have abcesses

No I dont

But there is one fistula showing at your latest colonoscopy

I know, its a blind one, you used methylblue the last time and nothing happend

no gas from your vagina?

No

Funky smell?

No

But you have perianal fistulas

No I dont

But you have hemorroids

Yes since I was 5 years old loooong before crohns

So you are fine

Yes except the diarrhea

Looks at me TOTTALY dissapointed

Ok here is your prescription bye.

Just because I am labeled "Moderate to severe" I think he feels obliged to give me prescription after prescription of drugs just to think he is doing a good job and I am taking this feeling away from him just by not needing 1000+drugs
 
And the list of the worst comments so far

-You have crohns? No you dont, my brother-uncle-niece-friend has Crohns and he/she is thin, you cannot be fat and have Crohns

-you have crohns? You should do homeopathy my friend-uncle-blah blah was cured from Crohns that way

-You have diarrhea? I envy you, I go to the bathroom once a week, I wish I had your problem (be my guest)

-And the winner... Crohns? What is this? (from a GI NURSE)
 
Ignorance is NOT bliss! I'm in shock! I changed general practitioners a few years ago because he couldn't believe that I had Crohn's because I was not totally emaciated looking. Never mind that he had all the information from my gastroenterologist. I used to be heavier, before my diagnosis. I lost 40 lbs. after being diagnosed. It wasn't from dieting either. That thoughtless doctor used to greet me by saying, "How are you? You look well." That would make me see red every time. I wouldn't be coming to see you if I felt well, and trust me, I have better things to do than to be sick, or sit around in a doctor's office.

I am normal weight now, but I did receive an unusual comment from a friend at work. She didn't know that I have Crohn's Disease, and she said, "You're the thinnest person that I know with that disease. My other two friends are very heavy." Wow! From one extreme to the next. What exactly is person with CD supposed to look like anyway? LOL! Maybe thin with chubby faces from the Prednisone.
 
When I went to ER with excrutiating pain (prediagnosos) it was in all my notes that 'the patient looks well, but appears to be in some distress'. I should note here that I am mixed race, so even if I do look pale, I still have some good colour in my face! And as for 'some' distress, if one more doctor had come to do the rebound test on me, I might have rebounded on them to see how they like it. 'Does it hurt more now?' *bam* 'or now?' *BAM*
 
ok Rebecca - THAT got a chuckle out of me...thankfully I didn't spit my coffee all over the keyboard!
 
Oh, I got one from my dad, and I quote

I appreciate u have a severe health problem. However, you have allowed it to consume your life and why it maybe very difficult to break out of the box u are forced to be in because of it. You need to kick and fight instead of surrendering.

Now, our only contact for years now has been a weekly phone call and one email a week (if I am lucky). That was his defence after I told him what I though of his question " got any parties coming up". That was my evidence that he does not and has not for a long time listened to me!

Anyone who has seen my posts here (I hope) will disagree that I have surrendered since I have had to fight for pretty much everything.

Hope his wife or step kids never get sick with that attitude!
 
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StarGirrrrl said:
Oh, I got one from my dad, and I quote

I appreciate u have a severe health problem. However, you have allowed it to consume your life and why it maybe very difficult to break out of the box u are forced to be in because of it. You need to kick and fight instead of surrendering.
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Star,
My mother has used one similar to this one on me.
Mom- now, you've learned to become sick, this is not how I want you to live, and you need to try and forget you have this sickness, move on and you'll see you will get better.

I'm sorry, but how do you "learn to be sick"? I have not been well since I was dx, I do the best I can. I am a stay at home mom (as docs deemed me too sick to work), my son is autistic, I take college classes online and have a preteen daughter! When did I have time to learn to be sick!?
So star I know how you feel with this one, we fight everyday especially the bad days and we're not fighting?! ARRGHH lol

The other one that I know WE are ALL sick of, "I'd take your guts for a month to be as thin as you" (said by my very overweight friend) my response- if I could give it to you and take all of the weight you ever wanted to lose I would gladly do it, but I really think that after a day maybe two you would want to trade back!

But I always chuckle when I get the line "my cousin's sister's boyfriends aunt has that", I wonder do those people stop others with broken bones to tell them they know someone who broke a bone too? lol

LOL
Thanks for the thread!

GG
 
A doc at A&E - 'I know how you feel. I've got IBS. I'm afraid there's not a lot I can do for you at the moment. We all get stomach issues" I ended up throwing up fecal matter in the waiting room two hours later...
 
Good one Rebecca!

ER doc to my husband (at th time married 2 months): she is hysterical, she needs a hysterectomy. I though my husband was going to pull this guys lungs out through his nose!

My Aunt before I was dx: rubbed her hands on my head, prayed and then said "all you have to do is accept Jesus Christ as your lord and savior and you will hurt no more."

Friend (not anymore): "I don't care if you have to wear a diaper, you are going to the concert." Well darlin' I am so glad you don't care!
 
where do I begin?

MOM- I know a girl at work who has it.....She is fine, eat what she wants and still has a job.....ME- Mom she is a receptionist with a clean bathroom about 10' away in a heated/cooled building w an hr lunch break! Im a commercial plumber who has to be at work at 5:30am, work out in the elements, only gets a 1/2 hr lunch and has to share Port-a-Potties with about a hundred disgusting men....ask her if she'd trade?

Father- (Post Diagnosis) You know Jake if you dont want to buy a house and marry Linsay just tell her, you dont have to make up having an illness!

Mother and Father- Well its not Cancer your not dying so its time to get back to work!

Mom- You know your gonna have to go back to work because the bills arent gonna stop comin so you mite as well quit putting it off!

Former Co-workers- (pre diagnosis) If you dont want to work just quit dude! Plumbings not for everyone! (This was after 10yrs in the trade and an attendance record that was well better than most)

GI Doc- (2 days prior to confirming colonoscopy) Its def not Crohns, it doesnt add up!

Primary Doc- (I left his practice after this convo) Heres my tablet (throws it on my lap) write out what you want since you know more than me! ME- I want you to do your fn Job, look at my chart Im never here, this has been going on way too long to be constipation and anxiety WTF am I anxious about! Im making the most money ever, Got a great job, Im with a great girl who I want to marry, I got a brand new $45,000 truck parked out front and about to sign on a custom home both of which I can easily afford! I want you to start running some more tests other than simple CBC's, doesnt me losing 25 pounds in less than a month along with numerous trips to the ER tell you something! Primary Doc- You need to see a psychiatrist! (Once I was diagnosed he found out and called me into his office to apologize) He never fully took 100% responsibiltity but did apologize, he said I didnt present like a person with Crohns normaly would! I said "well you cant tell whats really wrong with a car unless you look under the hood!"

Diff Family members at the Dinner table- Well why cant you have that? Why cant you have this? You mean you cant even have corn?

MOM- well once you take this medicine will you be ok? Me- I dont know! MOM- What do you mean you dont know! Me- It takes time and it might or might not work, theres no guarantee! MOM- What, you need a new Doctor cause this one doesnt know what he is doing!

I could go on and on!
 
-"We don't think you're sick. What do you think?"-Two doctors who couldn't figure out why I was sick

"EWWW! I hate it when I get a Crohn's patient-they smell!"-Mean nurse to another nurse in hospital

-"I think you should eat more vegetables,that would help."-Mother in Law

-"You must like going to the doctor, that's what I think."-Aunt, after colon cancer diagnosis

-"You are a better man than I am for staying with her."-So-called former friend, to my husband, afer surgery

-"You can't have Crohn's you're fat."-Sis in Law

-"You have Crohn'sdisease-so basically you have diarrhea, so what?"-Disability Claims person

-"I wish I had that, then I wouldn't need to throw up to be thin."-Crazy chick who asked what was wrong in a public bathroom

-"Maybe waxing would help keep it from returning."-ER Resident who examined my fistula

-"Sadly, this isn't the worst thing I've ever put in my mouth."-Current Best Friend, as he helped me finish the Go-Lightly prep when a mean nurse yelled at me.

-"You might feel better if you had a baby."-well-meaning elderly friend of my Grandma

-And the topper-"I just can't take this constant sickness with you anymore, you're no fun anymore."-Former best friend, while I was in the hospital
 
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If I do turn out to have CD (as Collitis seems to have been ruled out), I am going to remind the Dr who misdiagnosed me with IBS, of her words.

"If it was CD you would have lost weight"
"Well what about the inflammation levels in my blood?"
"Oh I wouldn't worry about that, it's very low, you probably have cystitis"

(any lady on here will tell you guys we know when we have that- eek!)
 
I love this thread!


Edit: Just in case the above was misconstrued, I don't love that people are saying horrible and mean things to you, it's not what any of us need when going through these things. But I do find it amusing to read some of the ridiculously stupid ignorant comments that people make - it makes me laugh because I think "they can't be serious!" Maybe I just have a wapred sense of humour...
 
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It must be that all people who arent sick, think that they are not sick because they are strong enough to not let it affect them! IF THEY ONLY KNEW!!!!
Both my Parents would swear that Im letting the disease control me! Well MOM and DAD...most Doctors with their fancy medicine and expertise cant control it but I guess I can?????
They are both outta shape and mildly overweight! They both have high-blood pressure and my MOM is closing in on diabetes! So I say to them, why cant you control your weight, and your blood pressure? Another News Flash for them but these 2 things are something they actually can control themselves! Their response: "Well we are getting old (Mom 50, Dad 52) but you are young!" I said well its funny because before I got diagnosed and was having all these symptoms their answer was: "Well, your gonna have aches and pains and days when you dont feel good your not young, and your getting older!" I WAS 29 @THE TIME!!!!!!!!! Ive learned with them.....it's pointless!!!!
 
I am so touched and shocked by all your comments. I can say, "I feel your pain." People who are not sick just don't understand. I can relate to the weight comment, "You're too fat to have Crohn's." Well, that may have been the case at first, but I have lost a lot of weight since then. I'm sure my weight critics have noticed, as many have commented. An ex-boyfriend in college thought I was was being spoiled. I remember his comment, "How can you feel sick all the time?" Thank goodness I didn't marry that guy. My mother has been pretty loving, and understanding throughout my whole ordeal. I think she is even more upset over some of the wasted doctors appointments and nasty comments.

We now believe that Crohn's Disease on both sides of our family, though I believe it is stronger on my father's side. My dad is old school and is definitely not a very sensitive guy. He grew up on a fishing boat with a house full of brothers and still has some very macho tendencies. I was deeply hurt when he seemed less than understanding of my CD. His father had it pretty bad and eventually required surgery to remove his colon. My brother has CD, and when my father was 24, he had a perianal abscess that required him to be hospitalized, along with surgery to drain it. In spite of all that he's said some dumb things like, "It's all in how you react to it. You have to fight through it. Others have gone through it, and will go through it. You can't cry over the pain." EXCUSE ME! Never mind that I was a girl when the horrible pains started. My mother was very upset with his attitude and even said, "You need to be nice, she probably got that sickness from your side of the family." Mom completely got upset with him for his cool,cavalier attitude. My dad has become nicer, but it was after many trips to the ER, being curled up in fetal position with excruciating pain, many tears, and questions of the quality of life. Like Jake, and many others, I have a good life, and no I would never choose to be sick.
 
My favorite so far was "There's nothing showing up in your blood. Maybe you should see a naturopath? They could help you with diet. This could just be because you are overweight." That was an ER doctor who did a CBC and glucose test and then told me that when they came back normal.
 
Thanks Andi, as I stated in "MY STORY", I still cant believe to this day that they havent been more helpful! For a guy who had a great job, worked out, played sports and just generally loved living life, for them to think I gave it all away by choice...even after diagnosis.......Makes me question..."Was my whole life a lie between my parents and I?" I even ask myself..."Who are these people?"....Cause the parents I know actually cared for and loved their son! Im not saying I was perfect but to abandon me at this point is beyond belief to me! Oh well.......Im movin on!

PS- I too deal with the weight issue! My Crohns is 85% constipation/15% D so my weight does fluctuate and I am slowly losing it but very, very slowly!
 
Hang in there Jake! I enjoyed your story. It's too bad that those we love are usually the last ones to believe us, and sometimes the first to be critical of us. It sounds as if your parents might be grieving your disease. I know that my parents went through a little of that.

I suffered for several years before my father even told me about my grandfather's CD. I should have known earlier when he was referring to it as ulcerated intestines. I was upset that dad didn't think that might apply to me as well. My father and I have a hard relationship anyway. He wanted me to be a boy, hence I became Andi, as I was supposed to Andrew Charles. I was an Andrea instead. We have a hard time with communication because he the stern, quiet, old-fashioned type. Naturally I had to be a sensitive, artistic girl. He doesn't get girls and all their emotions.

My mother grieved my Crohn's at first by thinking the diagnosis was wrong. She also prayed and was certain that I would be healed. She accepted it fairly quickly and does her best to be supportive: leaving corn out of meals, cooking veggies until their soft, and helping out with my kids if the flare is really bad. My dad would never say it, but he too has accepted it. At first he thought I was being whiny, a worrier, and trying to get attention. I was floored because the doctor, that I cut ties with said almost the same things of me. I found out that my mother not only talked with my dad about the situation, but even bawled him out several times. She let him know that I have never been one to use illness to get attention.

I am ashamed to say that after going through this, I wrote my doctor a letter and told him exactly how I felt. I was polite and stated facts but I also said that I was very upset and discouraged when he treated me like a crazy woman. I included the ultra-sound, colonoscopy findings, blood tests. I concluded that I graduated from college with honors. I'm a teacher, a wife, and a mother. Throughout most of young adult years, I've had to suffer through the CD without a diagnosis, and even without support from anyone. I am not crazy, depressed, or needy. I was a pageant girl, embraced as much of the college life that I could, was a Greek (a sorority girl), had many outside interests, and a stable and loving family. Why would I want to jeopardize any of that with creating an illness.

My advice is let your parents grieve your CD. They are probably feeling bad that you are having to go through that. They will come to accept it, though on their own terms. My father will never be the great sympathizer, but he is more understanding and caring towards me. I found out that he felt bad, thinking that he caused my disease in some way. My brother also has CD, and has been through several procedures to clear up abscesses. He and my dad get along because they never discuss health or medical issues. I made sure that I told my dad that he didn't cause the illness. It's just one of those things. It runs in the family, and you never know who will get it. My guess is your parents may even have some fears about CD. Educating them will help.
 
Andi, its great to be able to talk with you and I want to thank you for your words and advice!

Its funny because our dads are kinda similar! My Dad was very stern as a kid! He did do a lot for me but he still had his strict ways and always right attitude! My mother and I always had to deal with his ever changing moods! The good times were great but the bad times were the worst! So I learned early how to make my father happy, but also when to stay away!

I always had to get good grades and I did! But even though my grades made him proud....as a man its not something you brag to your co-workers about! As a youngster...I was a skinny healthy, funny kid! Then came the Tonsils and Adnoids having to be removed and it turned me into a chubby young kid, who honestly was a little lazy! Not much for a Dad to be proud of, I guess! I was the best chubby kid on the baseball field! So good in fact that I played for the best little league program in Maryland and traveled all over the east coast playing, falling 1 game shy of the Little-League World Series! And guess who went on that trip w/ me? Nope not Dad but Mom! During this time I did play Football, but since during my youth football programs had weight limits, I struggled to make weight and although I was good I had to be a back-up because of the weight Issues! Once again Dad didnt take much interest!

My Dads sister, whom he was close with had a son, my cousin! He was 4 yrs Older than me and when we were younger he always seemed to steal my thunder so to speak! He too got good grades but was a 3 sport Athlete and a good one at that! Naturaly talented but didnt want to work hard! My Uncle, his father was very strict on him about sports making it not fun for him which led him to quitting before highscool was over! Waste of time and talent! I became close with My cousin in my teens and early 20's but since then we've drifted apart! I bring him up because Ive been compared/judged to him and what he did with his life! My Father always treated him great cause I think he felt bad for him sometimes but to me it seemed as though maybe my cousin is what he thought I should have been!

Fast forward to highschool! I lost all my weight, got into lifting and became a 3 sport star making all-state in baseball, basketball, and football! During this time, Dad was proud of his son! He Dj'ed at some of my games! Brought friends, family and co-workers to all my games, had team parties at the house and I even heard him brag about me a couple times! I also graduated in the top 10 in my class! Not going to College was/is my biggest regret! Maybe my fathers too but he never got involved in the process! I put all my eggs into 1 basket concerning school, that fell through and I was not gonna attend community college because I had watched my friends enrolling, then partying and not going to class! So dad said that i wasnt gonna sit in all summer that I was gonna go work with him as a plumber!

To prove to everyone that i accept some responsibility in my parents attitude towards me, I will tell you that the first couple years after highscool I didnt use wisely! I partied a lot, just drinking, never a hard drug user! I dated a lot, got more into softball and flag football than into my career and spent all my free time either @ the gym or on party trips with my friends! My credit was a mess, no debt but late on a lot of payments! Bills were always past due! I missed work here and there, and def came in late a bunch of times! Nothing too drastic but a far cry from my father who hardly missed time and was never late! So to call me lazy, unfocused, procrastinating young man, who was not maximizing his potential would not have been a huge exaggeration!

There comes a time in most peoples lives when they make a choice to step up and become a productive adult! Well I did, I stopped partying as much, paid off my vehicle, saved some money, repaired my credit and started applying myself @ work! Next thing I know I had gotten a great job offer doubling my salary, took a big chance leaving my company(comfort zone) and went for it! During this time I manged to save a lot of money, purchase my dream truck, and was on my way to designing a nice, modest custom home to be built! Gettin up at 3:00 everyday mon-fri/sat to drive an hr and a 1/2 to work 10-12 hrs a day at my new job which was tough but I loved, for 40-60hrs a week! My Father and I well our relationship was great! I was successful, (more succesful than any cousin or family member @ the time) and we spent a lot of weekends together watching football, grilling out, DJ'ing parties, just pretty good times! We had our moments but for the most part good!

Which leads us to now! I have cousins, uncles, aunts and friends who have taken the lazy way out in life! They havent worked, tried to take advantage of the system, in all honesty some of them are just real pieces of ____! Not all but some! Especially my cousin who Ive been compared to all my life! So I guess my father is now lumping me in with them! My mother was sympathetic at first but she too has adopted some of his attitude of, I know you dont feel well but you gotta get up and work and using the disease as a excuse is not acceptable! What really sucks is my mother and I were really close! We could talk to each other about anything and we did! She knows all my secrets and vise-versa! My Dad has a good way of making you believe what he says is true and I guess since he has molded my mother for so many years that it doesnt take much to convince her! Add to the fact that she lives with him everyday and only hears his side of things, it makes it very easy!

I know that my parents love me! I do think that a lot of the way they are handling this has to do with the fact that their only son is sick and there is nothing they can do! My Dads side is full of diff bowel/stomach problems! My grandfather had colon cancer twice and beat it! My grandmother had stomach cancer and beat it, although her cancer happened before I was born and apparently later in life they questioned whether or not it was cancer @ all! (Maybe Crohns or some inflammable disease)? She always had bathroom problems, energy problems and the weirdest diet ever! Who knows! My father has always had bowel issues with urgency! He carries toilet paper, baby wipes and neosporin everywhere he goes! He had horrible anxiety in his early twenties and has been told he has IBS and a spastic colon! He fits most of the pre-crohns/colitis symptoms but somehow he never developed it Im guessing? Maybe my Dad feels a little guilty that it came from his side/him? Im also aware of their ignorance....meaning they really dont know or understand! And maybe by not being around me while absorbing the downfall of all I worked for and going thru this....it makes it easier for them to deal with! I know for a fact that the minute I get back on track (GOD WILLING) and my life starts to go in a more positive direction, that they will somehow come around! The time I needed them most and they let me down! Not unforgiveable but def UNFORGETTABLE! My only fear is that it will be a little too late!
 
I think that some parents use the "You have nothing" or the "Dont let it rule your life" Attitude to cope with their grief. I mean its quite difficult to accept that your child has a serius, pottentially life-threatening disease. And that the only thing he/she can do is to take meds just to ease the symptoms, cause the disease itself will never get cured (so far). I know my parents do that. Especially for those who were diagnosed later in life. I was 35 when I was diagnosed, I was married, had a steady job and two kids, my parents thought that my life was, more or less, settled and then I almost died and then I survived but they found out I would be sick for the rest of my life. I know they pretend to ignore that I am different. Thats their way of coping. Still I think that they do not understand the real nature of the disease.

After I had a million objections about going on Humira, my parents started fighting with me to start the drug. A couple of weeks ago they asked me how long I am going to be on Humira I said "For as long as it works" My mother was shocked "FOREVER?" I said yes. I could litteraly hear her mind working and going over the original objections I raised.

For healthy people is really hard to accept those who are sick IMO
 
@ Scifimom, That is the one of the biggest problems and attitudes here in the US! None of the healthy people here want us to have a federal healthcare system(at least not most)! The big reason for this is the fact that healthy people who have a decent job and who's company pays a portion of their premium dont really think things should change! Meanwhile the costs of healthcare are sky-rocketing to unaffordable amounts! Mostly in part to the people who have no coverage abusing the ER as their primary doctor but also to the fact that the unchecked insurance companies are unjustly raising prices while lowering coverage!

I dont want to get into politics and debate healthcare! My point is that the belief healthy people have is that anyone who needs the system to take care of them is plain lazy and looking for a handout! They sit on their healthy pedestal and judge! Its kinda similar to when people say that there senators and representatives are outta touch with the needs of the people because they are rich and livin the "Good Life"! Same goes for healthy people, but its so much more true! They can not relate to sick people or people with chronic illnesses! They have no idea what its like! They all think that no matter what happens they will find a job and keep working!

I dont wish Crohns on anybody! I do wish that for just a brief moment they could experience not the "American Dream" but what Ive come to call the "American Nightmare"! Lets see how their opinion might change if one day they start getting sick! So sick that they are missing a lot of time at work! A job they have worked hard @ for 10yrs! A company they put so much time into with a promising future ahead! Their company keeps asking why they keep missing work, but the doctors cant figure out why! You start dipping into savings some to pay for the missed time @ work but bills keep coming as you get sicker and sicker! With the thought of losing your job and the affect it would have on your family on your mind, all of a sudden you get rushed to the hospital and need emergency surgery! You awake days later from surgery to find out you have a chronic illness and might not ever be able to return to your job along with an envelope your wife got from the mail containing a termination/lay-off notice that you no longer have a job! Your Bills will drain your bank account in a month and you cant collect unemployment benefits cause you are technically not ready & available to work! On top of this your health is still causing you both mental and physical complications! Youre whole way of life and daily health has forever changed but guess what life's not waiting up for you, it keeps going! Lets hope your wife decides to stay with you, cause that would be a whole nother can of worms! At this point you are facing the toughest time of your life! You worked very hard, put in your time! Did things the right way and had a bright future ahead! You know the "American Dream"! But now, you have no way to pay your Bills, Your about to lose your home and your vehicle(s), all the while trying to adjust to your illness and uncertain future plus trying to keep food on your families table and a roof over their head! Youve got to come up with co-pays and gas $$$ to get to your numerous doctors apptmnts as well as overpriced prescriptions you need to get filled! Oh and by the way, your temporary insurance has run out and its time to find a new one! But now that you have a serious chronic illness most companies wont accept you and the ones that will cost more than the mortgage on your home!

Now I ask you "Healthy People", if this was your situation do you still think we shouldnt get medical assistance or some form of disability? If this was you, would you still turn down that so-called handout? Would you consider yourself another lazy piece of trash sucking off of the government?

Dont even think I have to answer that one!!!!!!!!!!!! Sorry this is a bad subject for me(Just Venting)
 
This has turned into a wonderful post. I feel very supported! If I remember rightly from your posts, Jake, you are relatively new to Crohns. In that case you are still grieving the illness and losses that go with it. You may be treating yourself harder than you should. It is a scary thing and it is unpredictable. You are dealing with a lot of new adjustments. When I first started getting sick and feeling debilitated, I was very scared.

We have a lot in common when it comes to our families. My guess, is your parents, particularly your father is dealing or coming to terms with more than your illness. If I remember rightly, you are an only son. My brother, who also has CD, is an only son. There are three girls and one boy in our family. He and my father get along okay, but he has let my dad down in many ways. Oh men and their egos! (Sorry to generalize.) My father was an awesome basketball player. He coached basketball and was extremely disappointed when none of his children wanted to play basketball. My brother chose baseball and hockey. When my dad was in a nasty mood, he'd sometimes bring it up by saying things like, "What the h@ll is wrong with my kids. Not a one of them plays basketball. The girls are too prissy, and don't get me started on my son!" Nice! My brother tolerated fishing with my father, but he never really got into it. It must have been very hard for a man who loves fishing, had a sea captain father, and tons of brothers (11 brothers, 1 sister). I started out liking fishing, but I think dad didn't want to deal with girls aboard. He used say things like, "It's not really a good place for girls."

I've always tried to be the peacemaker in the family. I sensed my dad's frustrations and tried to get his attention. I really don't think my father's approval mattered as much to my two sisters. They always did their own thing and played the good girls in the family. My brother had his own interests and kind of played it cool. I was the emotional one who tried to help out. I was also the adventuresome, head strong child, who got in trouble more often than the other girls. I'd say that most of what I'd done and accomplished, I did for two reasons, to help myself out and to please my parents. I did good in school and originally wanted to become a nurse. That greatly pleased my father. My mother was a nurse. I think in dad's mind he saw it as a way for me to meet some doctor to marry and take care of me. I loved the nursing field, but I had problems getting into the program because of the limited slots and long waiting list. I ran out of money and had to move back in with my parents. That was very upsetting to my dad, and he got his digs in every now and then. I found a job and started working for the local school district. I loved working with elementary students, and announced to my parents that I was changing my major to elementary education. That really pissed my dad off. How could I do that after taking all those difficult science classes? He did his best to try to talk me out of it. I think that he was seeing it as his loss, though he would never admit it. The sister closest in age to me also graduated from college. She has an English degree and has never worked in her field once. She's worked mostly in banks, and her husband is in the military, so she has spent much of her adult life as a stay at home mom. My oldest sister married young and never really started college. You can't really count two classes. My brother didn't graduate from college though he has worked some good jobs. I think I was dad's bright spot when it came to his kids, and I was taking that away.

Parents seem to want to live vicariously through their children. My children are two years-old, and almost one. I hope that I don't make the same mistake of putting pressure and conditions on them. I think that many parents grieve the fact that their children aren't what or who they want them to be. That is life, and you and I both know that life isn't fair. I believe that Crohn's Disease has made me stronger in many ways. Sticking up for myself has been one of them. I've also learned from personal experience that there will be some tense even ugly moments when it comes to dealing with loved ones and CD.

I got the courage to talk to my father, and tell him how I've always felt. I never really talked back to my dad because I've always been scared to, but I had tensions brewing that needed to come out. I basically apologized that I wasn't what he wanted and that maybe he wasn't what I wanted either. He looked perplexed and I said, "You wanted a houseful of sons who played basketball, fished, and made a salary of six digits." That's not what you got, I'm part of it, and I'm sorry. Maybe I wanted a nicer dad." That was really gutsy on my part. He looked angry so I was cautious. I said what bothered me, "You make me feel bad for not finishing nursing school. When you say, I've got two kids that are broken (referring to the CD). That really hurts my feelings. I have a lot of things that I want to do with my life. I'm not pretending to be sick. Nobody in their right mind would want to be sick. I'm going to stop mentioning what is going on in my life to you. I feel that you are critical of everything with me. I won't disrespect you, but we just don't get along and it's best to be civil to one another."

I know this is a long post and I apologize for that, but I hope it's helped some. Since that conversation many years ago, my father has come around. He loves his grandchildren. I think he's becoming more empathetic in his older age, now that he has aches and pains of his own, and my mother's health is deteriorating some. He's had digestive troubles off and on, but his, "spit and vinegar," attitude has kept it hidden, and he will never complain. Here is what worked for me when it came to accepting that I had CD:

* Grieving the losses
* Getting angry and venting to those who understood.
* Learning as much as I can about the disease.
* Letting my supervisor know as much about the nature of my disease.
* Understanding what my legal rights were at work, along with discrimination in the workplace.
* Finding an awesome gastroenterologist.
* Changing doctors to one who really respects and believes me
* Educating my family about the disease. I went through my mother, sisters, and brother. When my father was around he listened, though I would direct the comments to someone other than him.
* Being honest with my family when they've been thoughtless or hurtful when my illness was concerned.
* Joining a support group.
* Doing things that I really enjoy. You need to have some fun in your life.

Hopefully, some of the suggestions will help as you start down the road to recovery, life change, and feeling good.
 
Def helps Andi! As you can tell by my long posts I am def angry and have so much I want to say! Thanks for taking the time to read them! Without a doubt a big part of my anger is the "Why Me?" attitude! As I said I partied pretty hard in my early 20's! I never used any hard drugs! I had so much fun just being out in the social scene that a nice buzz from drinking was all I need! (I do miss that buzz from time to time).....I wasnt a health nut but was into fitness and modertely watched what I ate! I now cant help but look back of all my friends who abused drugs, ate whatever they want and didnt spend a minute in the gym, and Im the one with this..Disease! While they are still living good and there health isnt even on there mind, Im stuck with a life changeing illness, I have the worries of what the future brings! Its bad enough that life itself can be hard but add to the fact I have a Chronic Illness! I see their facebook updates and their biggest problem is traffic and that this friday @ work is taking forever, cant wait for the weekend! HA, if they only fn knew! Yes, Ill say it...its not fair! I recall in my early 20's having a conversation with some of my workout buddys about STEROIDS! I refused to take em, and told them how bad it would screw us in the future! That was 10yrs ago and guess who's the one that has health problems in the now(future).........ME! Its also been said that a more sedintary lifestyle is in part the cause of bowel/health problems..........Well, then what about the pieces of_____ it my family who are sucking off the system .......Why not them? Why me? I dont wish this disease on anybody, and I know there are a lot of people with worse circumstances my only wish would be for compassion and understanding! Actually I wish we all were cured too!

PS-Andi, at the height of the tension between me n my parents, not long after being diagnosed....My Father and I got into a huge verbal argument which led to me unloading 20 years worth of things I wanted to get off my chest! Trust me they were not good things either and the one comment that set it off was........

FATHER- "What am I suppossed to tell the guys @ work?" (this is where how we are perceived by other people is more important than how we perceived ourselves...to my father!

ME- "Tell them whatever you want cause I guess the truth isnt good enough.......is it DAD?....No, no, better yet tell them this,....Im just not the son you wanted me to be, just like your aren't the DAD I wanted you to be!"

The shock on his face.........Priceless! We havent spoke since!
 
I want to share something humerous that was said two weekends ago. My parents live in Wasilla, Alaska. For those of you who are familiar with Sarah Palin, that's where she lives. Whether you associate her with good or bad, it's hard not to associate Wasilla with her. My parents love living out in Wasilla. If you hear me say,"the valley," that refers to Wasilla and Palmer, Alaska. One of my sisters and her family lives in Wasilla. My other sister lives in Palmer. My children and I usually try to go out to visit the grandparents every other week. My mom prepared something special on Saturday, January 15th. My sisters children were also visiting. I couldn't eat certain things and one of my young nieces wanted to know why. My sister's oldest daughter said, "Auntie has cone's disease." The younger one was wondering what that was. The wise older sister said, "It's when you can't eat what you want and your bottom hurts all the time." I was shocked. I've mentioned stomachaches, but I've never mentioned anything about the bottom. My parents and sisters all started laughing. Oh goodness! I might need to have a talk with my sister.
 
Awwwwww bless andigirl, children can be surprisingly empathatic!

I decided to take a break from contact with my Dad for awhile, I really miss him but then I remind myself of all the things that frustrated me. And then I have a lovely email from Nana, his mum, about how she hopes my long and difficult road is coming to an end and that she will see me out and about as a young woman should. Talk about skipping a generation lol. That is the kind of thing I need from Dad.

I once told him that sporting acheivement (his stepson apparently is a prodigy at baseball, soccer and bowling!) is not the only kind of acheivement (outside academic), and he was genuinely surprised I think!
 
I think sickness is very threatening to a lot of people hence the stupid comments. I'm not excusing them. Reading this thread has made me laugh at some of the dumb comments but mostly angered me. My opinion is if you can't say anything decent keep your damn mouth shut.

I'm really sorry everyone here has had to endure so much cruelty and ignorance and lost relationships.
 
Andigirl,
Love the "cone's disease" and the other observations. Kids are so honest. My 4 year old granddaughter notices things. She noticed that sometimes my belly hurts because I move a certain way or that I am running to the potty many times in a day. One time as I was quickly heading to the potty, she shouted out "Mimi, you can use my wipes! I know your poor old butt has got to be getting sore by now!". I was laughing so hard, along with all the others that heard it that she became upset. She was trying to help, she yelled at everybody. Mimi can't help she has the driggles all the time, stop laughing at her.

Now I no longer have the dreaded D, I have the driggles along with permission to use my granddaughters wipes!

Gotta love it,
Michele
 
Thank you StarGirrrl and Michele! I understand how you are feeling about your father, StarGirrl. I still visit my parents, but I quit trying to get my dad to talk to me. I say, "Hello," and answer any questions he asks, but I mainly visit with my mom. He likes being alone, so I greet him and then leave him alone. I think he is finally realizing that he has hurt me in many ways. The past couple of visits he hugged me. That's from a man who is not very affectionate.

I often wonder why so many people say such rude things to people with digestive disorders? I never think of making remarks to people who have cancer, diabetes, or other disabilities. None of us would have lousy digestion given a choice. I often feel that because we may look well in many aspects that people assume that we are, "carrying on," or "not that sick."

Michele, what a funny comment! I've noticed that kids find a lot of humor when it comes to the butt.
 
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rof!!! Driggles!!! I love that. your granddaughter is such a treasure. Did she make up that word all by herself?? that is so funny. Driggles. I'm going to have to remember that one.
 
I think a lot of it has to do with the fact that we 'just don't look that sick'. I mean, since September at work I struggled with mild dizzy spells due to anaemia, pins and needles in my legs whenever I over exert myself, random hot sweats, constantly yawning due to being so flipping tired, bouts of forgetfulness (which was affecting my job performance), one virus after another, and people were still surprised that I decided to cut my hours back?
 
Ari said:
A doc at A&E - 'I know how you feel. I've got IBS. I'm afraid there's not a lot I can do for you at the moment. We all get stomach issues" I ended up throwing up fecal matter in the waiting room two hours later...
Click to expand...

That is horrible! Talk about incompetence at its worst.
 
Thanks for this thread Andi. :thumright:

I'm not entirely sure if we should blame people for being generally ignorant, but to compare IBS to CD as a doctor is pushing it a tad too far. Being a man I have problems describing how strong my pain can be, so I often refer to the words of one lady with Crohn's who said it could be worse than labour. Obviously I have no idea what kind of pain you get when you go into it, but I know it goes away and you have such a wonderful reward for it...which can't be said about Crohn's. :yfrown:
 
Well said, Ari! I have been through labor, and some terrible flare-ups with cramping have felt like labor. I'm glad this thread has been helpful to others. Venting to others who can relate really does help.
 
One girl who was in my Uni class, who knew I have Crohn's. " I've had such a bad tummy ache and nausea for two days. I must have a stomach bug. You don't have a clue how horrible it is to feel like this."

Oh I don't? Do I? No I've never had a stomach ache or felt sick......no never.
This is the same girl who made a massive massive fuss and drama about having to have one xray and a blood test at the hospital.
I told her "yeah? Well at least you don't have to have a camera shoved up your bum like I do!!"
How can people be so unthinking.

On a funnier note, my old GI, a big, very bald Icelandic man, told me when I was worried about my hair falling out from the aza "don't worry, you'll never be as bald as me!"
Haha, I had to laugh!
 
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GutlessWonder86 said:
rof!!! Driggles!!! I love that. your granddaughter is such a treasure. Did she make up that word all by herself?? that is so funny. Driggles. I'm going to have to remember that one.
Click to expand...

"driggles" came about when she was potty training. She had to go on this horrible medication that made it difficult for her to hold her bladder. One day I spilled a bit of water on the floor and I asked her to stay back because "I dribbled some water from the pot". She heard me say it and for her it became driggles in her panties. I guess anything doing with the potty or small amounts in your pants is a driggle.
 
I love this thread! Unbelievable.

Here is mine, with a friend at work.

Friend: Did the doctor figure out what is wrong?

Me: Yes, I have Crohn's Disease

Friend: What is that?

Me: Its going to the bathroom for Diahrreah 10 times a day and having such bad pain that you have to go to the ER.

Friend: Oh, is that all.
 
DougUte said:
Friend: Oh, is that all.
Click to expand...

:rof: I've gotten variations on this one before. "This one time..." Yeah, not exactly. ;)

I really do think that it's because most of our dear friends and family see it from their own perspectives and don't have the frame of reference we do -- and thank God! I think people generally do try to understand, but, yes, as this thread proves, they don't always understand like we do.
 
Here's another one which I found rather thoughtless- I was playing violin in orchestra last night. I didn't feel too good, but when I went to get some paracetamol, I had run out. So I asked the other violin players if they had any. One of them said 'no, I don't believe in taking tablets unless it's absolutely necessary'

Well you know what, neither did I, and look where it got me.
 
Okay, I think we should vote for the funniest ones. Let's just forget the mean,nasty or just thoughtless but well meaning comments for now.

My three favorites are:
Sadly this is not the worst thing I've had in my mouth.
Cones disease
Driggles (well, you knew that was coming, right?)

I hope all take this in the spirit intended and that no one is offended. If so, please let me know via pm & I will remove, okay?

Michele
 
Well here's a comment I made (you gotta laugh at yourself, right?).

I went for my first smear test mid may (a week or so after my colonoscopy). So I'm laying on the bed, ready for her to do the test (what a lovely mental picture!) Because it was my first one, the nurse was being really nice, showing me the stick thing and saying reassuring things to me.

My response? 'Oh, that's nothing, you'll never guess where they shoved a camera last week!'
 
Ha!

I had a colonoscopy once and lo and behold, there was a friend (male) that was the nurse. Well, I got passed it. Several weeks later at the local watering hole, I bumped into him and asked....

"Well, did you introduce yourself to Lucy and Ethal (what I named my hemerriods) while you were down there?". I thought he was going to spew his beer.

Michele
 
Hi! This thread is amazing! I'm actually not alone!

I had my appointment with my GI yesterday. I must admit, it was more than a little disappointing. In short "They Can't Help Me." :depressed:

It was a total farce of an appointment. I was prescribed a loads of laxatives and chemicals which I have previously tried and which previously had no effect of my digestive problems. Then I was sent away.

I then saw my GP yesterday afternoon and relayed to events to him. He promptly decided to say something, which frankly scares me to death:

"Heidi, this is you causing all your problems, this is all in your head. You must get over it. Eat, or you will die."

:hallo3:

What good is that? Even if it is me causing this, I haven't a clue in hell how I'm doing it to myself, so what are they going to do to help me?

Now, more waiting. I have to wait till 10th March to see my useless psychiatrist (who cannot help me, because I am not "Anorexic" as I have been diagnosed) in order to get a referral to a psychologist, will they be able to help me?

One thing is for sure, I am now terrified of eating, because of the horrific symptoms I get. I think I now have a phobia.

Could a chronic anxiety and an Eating phobia, really cause someone to physically make themselves so ill, they cannot eat food without excruciating pain and horrific IBS?

My biggest fear is that my GP will stop prescribing me the Elemental Drinks. I will starve to death if he does. He wants me to be working towards getting off them, how long will he give me? Panic!!!

:confused:

Could I really be doing this to myself?

My mum thinks I'm doing it to myself, all my consultants think the same, my dad thinks its all for attention my GP thinks its in my head.

What in Gods name do I do now?

:grumpy:

(Sorry I hope nobody is religious, this isn't intended to offend anyone, if it didn't say that I think I might actually swear though!)

xxx
 
sorry to take this thread off track, but i really want to reply to Heidi...

if you've had all the possible tests for IBD, colonoscopies, endoscopies, scans, blood tests, biopsies... etc... and the medical people are still saying it's pyschological, then it's one of two things.. either they're right, or they've missed something.

what do you think? we tend to know our bodies and how they behave on a day to day basis better than the docs sometimes, whereas they look at specific symptoms and flags that they can make sense of.. i would advise you to start a really detailed diary, writing down every single thing that you think, feel (both physical and emotional), try to eat, result, etc.. do it for a few days and see if you can see a pattern emerging.. use it as therapy, get all your feelings down on paper - you might be surprised at what comes out, and how you feel after reading it back when you've completed a few days..

the other thing i wanted to say, regarding your doc's comment of "you're doing this"... i went through horrendous panic attacks years ago - the symptoms were physical, not mental, and i fought & fought against the diagnosis of anxiety/panic.. i did not believe that my emotions could produce such massive debilitating physical symptoms.

i was wrong. once i started to believe it, i started to get better.. and the most important thing i learned was that what goes on in your head really can affect your body physically... just something for you to think about...
 
I relate to so many of your stories! Here are just a few gems from me:
A co-worker: “You are so lucky that your husband has stood by you,” (during my ostomy) “because most people would have left you. You come with a lot of bad you know.”

Same co-worker: “ I have a brother-in law who has Crohn’s and he is so lazy he hardly even leaves the house.”

Same co-worker countless times: “I’m so sorry for you for having such an horrible, embarrassing disease!”

This is a funny one, although also a little scary considering the source:
Several months after I had my ostomy, I went to see my GI. Mind, I had seen my GI several times since I got my bag. My GI said he needed to look at my stomach, but when I showed it to him, he frantically asked me what had happened to me. Confused I asked him what he meant and he pointed to the large scar down the middle of my tummy from where they had gone in to do my ostomy. My bag was in plain view! I was like “ummm…” and pointed to my bag, “I just got an ostomy remember?” He was just like, “oh yeah.”

This one was pretty insulting actually, but a bit funny. A week ago, I just saw that same GI, and the first thing he said to me was, “so what’s the deal with this weight gain? Are you pregnant?” I was like, “Umm, no. I am just able to eat now that I am healthy.” He said, “well, you have my permission to diet if you want. Has anyone ever seen you this big before?” I am 5’4” and only about 125-127 pounds! It’s not like I’m a whale! I told him, yes, this is what I always weight when I am healthy. I’m not meant to be super skinny! It’s just not my natural body type.

I really did put the weight on fast in the last few months, but it is just because I can eat again. I guess he is just used to seeing me a lot closer to 100 pounds. It was a blow to the ego to have a Dr call me fat, but he also told me I was in remission for the first time EVER that day so, you know, bigger fish to fry.  He’s a nice guy, just tactless, as most Drs are.

He is a peach compared to my old GI who was a real nightmare. She was always awful, but here are a few examples:

My Old GI: (exasperated), “Well, it looks like you failed humira, just like you failed Remicade.” Excuse me? Weren’t the drugs failing me not the other way around?
My Old GI: (After over a year of me telling her I was in horrible pain and couldn’t work): “Well you have Crohn’s disease what do you expect?” She refused to do any tests, and basically said it was my problem. I changed GI’s and found out right away after he ordered the tests that I needed that I had a raging infection that had probably been going on for over a year that almost killed me, plus the start of a fistula, which is why the meds had basically stopped working (all of this lead to me needing my temporary ostomy soon after). After my new GI ordered me X-rays and tests, they went to my old GI by mistake and she called me frantically to tell me how sick I was and that I needed to be in the hospital. I was like, yeah I know. That is what I have been telling you for OVER A YEAR! It was all I could do to not just hang up on her.
 
Heidi-
Do you think that you are fat? If not, then you are not anorexic. It’s a simple as that. You are not doing this to yourself. I’m so sorry that you don’t have more support, but it is just so hard for people who have never been in pain like we have to understand. I have been where you are when I was in high school and look at me now! A 125 pound hippo according to my Dr! Just don’t give up. Try other Drs. Hopefully someone will figure out what the right treatment will be for you (here’s a hint Drs and family: telling you are crazy IS NOT IT!).
 
Jer's Girl, OMG! What is your GI paying at saying that to you about your weight? 125 pound is very slim for a woman of 5 ft 4 ins! :thumbdown:

I can't believe some of the comments you've had as well. Its just disgusting, if it wasn't so terrible and devastating it would be ironic.

I really seriously think some professionals are under the impression that people deliberately make themselves ill, which is total nonsense, nobody would give themselves Crohns Disease because it is horrendous.

You take care and stay healthy chick, and you be proud of your 125 pound frame because it is healthy and nurtured and therefore beautiful no matter what that idiot says.

I certainly don't see myself as fat, I am very underweight and look nothing at all like I should, I am not Anorexic and I resent being called it by so called "professionals." I can't imagine why anyone would choose to starve themselves, if they are able to eat. I wish more than anything I could eat and I look forward to the day when I can :)

Thank you hun for your lovely message,

you take care of yourself and nurture and love yourself, :Karl:

xxx
 
Thanks Heidi! Don't worry, I don't think I'm fat ether. I am very happy to be healthy and be able to eat like a normal person. My husband is also very happy that my curves have returned. :) It was very hard on me last year when I went through a major flair and got down to 101 pounds. I didn't feel like myself at all, and like you, I really really missed food!

I really do know how you feel not being able to eat and losing too much weight. For the most part (excluding my Dr I guess), no one is going to say to someone who is over weight, "You are too fat," but they seem to have no problem saying whatever stupid thing they want to someone who is thin. People don't understand that is not your choice, it just really really hurts to eat and it becomes not worth it to even try, no matter how much you want to.

I really hope that you start feeling better soon and can put on some much needed poundage, but in the meantime, try not to be too hard on yourself or let others tell you this is all in your head. So many of us on this forum have gone through exactly what you are going through and we can't all be crazy!
 
The only ones I can think of right now.....

when I was in the doc's office, and he was telling me after some more tests that he was pretty sure I had CD and not UC I said to him, "but I'm not skinny enough for CD." See, I didn't know then what I know now. Now, being 25+ pounds heavier after being on prednisone for almost 6 months....I've learned you never know.

Another day I was complaining about an ache and was told "Is that your disease of the week?" UGH.

One I hear often and makes me irritated all the time - sounds like many of you have too - "So and so has it and they are fine." Me wanting to say to them - well great for them, but I'm not right now!!! UGH

And lastly, "well atleast it's not cancer." Again, I want to say but don't ---- "Cancer can be cured. CD can not. Oh and as a bonus, CD meds can CAUSE cancer, and CD itself can predispose my butt to cancer.... so there!"

Love this group.
 
Never-never-never ask an older women if she is pregnant...unless she is wearing a "baby on board" tee shirt. I get so embarrassed. I am really bloated and I know I look it but...I would never ask someone unless I was positive-positive-positive!
 
Spingirl, don't let it bother you. People are (for the most part anyway) well meaning just well meaning tactless jerks. They don't mean the jerk part, it just is.
I would always smile real big and say well no darling, I'm just fat. Very calmly like I was talking about the weather. It worked to.
Michele
 
I lost a baby at 36 weeks 15 years ago. I remember going out with my husband and there was a line and at the bar, a woman got up and gave me her seat. She said "i don't usually do this because you never know if someone is pregnant but in this case...I can tell you are". My hsuband's jaw dropped - it was our first time out and he was trying to get me out of the house...and he didn't know what hte heck to say...so I just said thank you - trying not to cry my eyes out and make a scene...and then I ordered a beer!!! hahaha...the look on her face when I ordred my 2nd one! I will never in my life forget that. I
 
Oh boy, tough one. Full points for you & hubby. Got my stories with that too but not on this thread. I feel like I am high-jacking!

New rude comment just this morning from someone that I care about deeply but is on so many pain meds right now she would tell off the Pope:
Girl, your house looks so nice, I know you are faking this Crohn's crap.

Michele
 
spingirl said:
I lost a baby at 36 weeks 15 years ago. I
Click to expand...

I just had to say, "I'm sorry." I know it's off topic, but I had lost two baby girls, one at 20 weeks and the other at 18 weeks. I hope that if you tried again, you were successful. My hubby and I adopted a little boy, three years after my second loss. I found out that I was pregnant when my little boy was six month old. I carried our daughter to term and she's a healthy little girl.

I might as well add some more strange and rude comments. I was in the ER with a partial blockage. My chart has Crohn's Disease written on it, and it almost everywhere. My doctor was very nice; however, the nurse was rude and seemed to be as dumb as a box of rocks. She must not have thought that I was listening; either that, or that I was too dumb to know that she was talking about me. Right out loud at the medical station, she said, "What the hell is Crohn's Disease? We always get weird things in the evening and late at night." I was in pain and very nauseated. I felt like shouting out, "Where the hell did you go to nursing school?"
 
Doctors to me on the morning of discharge from hospital;

" Matt looks good and has no fever or pain, you can go home. Now you do realise that Matt was one very sick boy when you brought him in. You really shouldn't leave things that long next time."

I explained his symptoms hadn't changed since he was last discharged from hospital until that day. I think they were doubtful.

3 hours later and payback time;

Doctors - "Sorry you can't go home his WCC & CRP are through the roof again."

Me - "Well isn't that a bit irresponsible wanting to discharge my son when he is so ill?"

Haha, I think they got my drift. ;)

Dusty. :)
 
Sweet, sweet vindication, Dusty! So sad that you had to stay longer, of course, but vindication nonetheless. :ycool:
 
I saw the new Nurse at my GP surgery for a non-IBD check up. She said to me she thought IBS and IBD were the same thing, even when I explained IBD was Collitis and Crohn's! :eek:

Needless to say I only see the Nurse once a year but I will not be visiting her again!
 
@DusyKat...glad you spoke up. To lay that on you in the first place was so unfair. I think they are always looking to do this so they don't have to look like they don't know what the hell they are doing...which I am convinced many of them don't. I read on this site so many different treatments and changes...I bet if we had a voting system (like polling the audience on the game shows) we would come up with great treatment plans for us all!!!
 
Here's a cute one to lighten the mood again. My cousin was living with my family for a while. She was aware of my CD and how it affected me. She also spent a lot of time with our grandfather, who ended up with a colostomy bag because of severe CD. Our fathers are brothers. After a horrible bout, Liz said, "I hate your guts!" I couldn't smile because I hurt. She then said, "I hated grandpa's guts too. I'm sure Scott and your parents hate your guts too." I do hate my guts!
 
I had a nurse say to another nurse, right in front of me,"I hate having Crohn's patients! They smell and always make messes!"
 
WHAT??? The total cow! Nurses have a reputation for being caring, but where it comes from I have no idea Jeanette, caring they are anything but. I think they choose to be nurses because its just a job that needs doing and it pays the rent, not because they are caring (not saying its the case with all, but I'm going on personal experience and so evidently are you)

I was in The Royal London Hospital last year, me and another patient in there were very underweight, because neither of us were able to eat, and had both been left to just starve and suffer by the NHS. Unfortunately our beds were the only two in the ward next to the open windows. This was January last year and FREEZING cold! But apparently only to me and Sheila, the rest of the ward complained it was too hot, so we had to suffer in the freezing cold draft of the open windows.

Naturally we both complained. Then one day one of the nurses matched into the ward and down to mine and Sheila's bed, she said at the top of her voice:

"You two skeletons have made yourself like that through starving yourselves. So now you'll have to suffer the consequences and be cold."

I couldn't believe it! xxx
 
@supercell - I hope you told your doctor what that nurse said. I would have, when I was feeling better and out of there, called someone...the board of nursing or something. As much as I know its done and whatever...I like to think about the next person that will have to go through it with her.

@Mountaingem - right in front of you? OMG - I would have been mortified. I am curious what the other nurse said. That is the rudest thing I have ever heard. As if you could help what was happening. She should not be caring for you. What do you do with that...I mean...talk about kicking a dog when he is down. Wow. I am sorry you had to hear that. I can't even tell you right now...my heart is heavy...that is just so mean. I truly believe what goes around comes around. She is going to have her day. She really will. Good luck to her. Maybe she is the one I should feel sorry for.
 
Heidi,
Insufferable. I would have hit the roof! I actually got a nurse fired from a hospital once. She was just horrible to me and to another pt across the hall that had Crohn's. I made her cry as I was leaving the hospital. I am rather proud of that.
Michele
 
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Good for you Michele! I know here in MA - nurses are paid very well. I know its not an easy job and I think they deserve the $ but it is a job and they can think what they want to themselves or say what they want to each other in private but we are, in a way, customers. I am going to say it again...good for you Michele!
 
"Just try not to get stressed."
"YOU have Crohn's? Well, are you on medication for it?" (As if MY Crohn's wasn't worthy.)


I have to thank you all for these posts .... had a "crappy" week (both pun intended and not intended). I needed a good laugh and found it here. You guys rock!

Doglover
 
@Heidi-In all fairness, most of my nurses are caring, helpful people who have really got me through tough times. But this one...

@spingirl-The other nurse just stared at her with her mouth open and said "You know there's nothing wrong with her hearing, right?" First I burst into tears, then I got mad. I told her to get the hell out of my room. I called my husband, who came to the hospital and called the doctor in charge of the floor, told her what she said, and then wanted to see a hospital administrator. He filed a complaint against her, I doubt she had a job after he was done.
 
Yeah, perhaps saying ALL nurses are cows was a bit unfair of me, but I am horrified how she treated you though chick. What an awful woman, she deserved to lose her job over that. I hope you know that what she said was TOTAL CRAP because it was, and don't you think on it for 1 second. She's not worth your thoughts.

Big Hugs

xxx
 
Well, we all know good nurses. I have two sisters that are nurses so that is two that I know on a personal level! Just like teachers, all you ever her about are the crappy ones, not the good ones.
Michele
 
Boy can I relate! I am a teacher, and my mother was a nurse. Sadly, there are bad apples in all professions.
 
"Well maybe you shouldnt have anymore children because you could die of crohn's and make them orphans." This was said in response to my infertility issues.

This from my cousin who is a mother, and was phoning me from her cell phone....while driving.

Dont worry about whats going to kill me lady. Worry about yourself.
 
Well, looks like you won that battle. What a witch! Is she normally thoughtless & just plain cruel or was it a momentary lapse into bitchiness? I don't know if I would have been able to forgive that comment even if she is normally a Mother Teresa clone.

My sister said something to me after I had tried so hard to get pregnant & just couldn't. Along the lines of well you are not a mother & never will be, so you don't have any idea what a mother will do for her children.

No way reaches the comment of your cousin but man it hurt!

Michele
 

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