I hope you will help, guys!

[Shannon]

My friend is hosting a CCFA awareness fundraiser and she is compiling a book of interviews with Crohn's patience, and she needs a few more. I told her the people on this forum are so lovely they'd certainly help. You may remain anonymous. THANKS.




Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis?
What was your reaction to the news?
How old were you when diagnosed?
What has this disease stopped you from doing in your life?
What is it like living with this disease?
How have your diet/ eating habits changed?
Has this lifestyle lead to depression or anxiety?
How many hospital visits or operations have you had? (if any)
How many medications have you been on/ or switched too?

Name* ______________________________ Age* _______
*= (optional)

 

[Guest]

i'll be glad to contribute, Shannon... i'll pm you with my answers tomorrow.

 

[Shannon]

I appreciate that! She certainly will too.

 

[Manzyb]

Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis? No! I had no idea what it was.
What was your reaction to the news? At the time, I was a bit relieved, I was told for so long that I was faking, I had IBS, or I had an eating disorder.
How old were you when diagnosed? 15
What has this disease stopped you from doing in your life? Not a whole lot, I really try to keep living my life as normally as possible. There are always days where I can't do certain things, but I don't think it has really taken anything away from me.
What is it like living with this disease? ROUGH!!! I've been diagnosed for almost 12 years now without being in remission. It can really take a toll on you if you let it.
How have your diet/ eating habits changed? Now, I pretty much just try to eat whenever I am feeling well enough to eat. I eat a lot healthier, and much much smaller meals.
Has this lifestyle lead to depression or anxiety? Yes. I've been on anti-depressants and anti anxiety meds since I was 17, I am now almost 27.
How many hospital visits or operations have you had? (if any) I have had too many hospital visits to count! I've had several operations, but none that were directly Crohn's related.
How many medications have you been on/ or switched too? Many many different medications! I've bee on prednisone, entocort, all kinds of antibiotics, anti-spasms, 6-MP, Imuran, Methotrexate, Pentasa, Asacol, Remicade, Humira, phenergan, Zofran, Questran, Zegerid, prilosec,nexium, and I'm sure there are others that I can't quite think of right now!

Name* _Amanda_____________________________ Age* __26_____
*= (optional)
__________________

 

[Mountaingem]

Glad to help Shannon!

Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis?
No, I hadn't hear of any of these.

What was your reaction to the news? First I was shocked, and then I went into denial. I convinced myself this would just be some annoying thing I would need medication for once in a while, but that my life wouldn't really be affected by it.

How old were you when diagnosed? 19

What has this disease stopped you from doing in your life? It stopped me from starting a family, since my husband has Crohn's on his side of the family too. It also stopped my career; I used to be a commercial artist, but the rheumatoid aspect of this disease affected my hands and made impossible to draw and paint as I once did. It limited some of my favorite hobbies, such as hiking, backpacking in the High Sierras,etc.

What is it like living with this disease? It is extremely difficult to deal with, mentally and physically, for me. It turns my whole life upside down, and when I was diagnosed, it changed everything I thought my life was going to be. Everyday it's some new symptom or complication. The flares stop everything I previously planned cold, for weeks, sometimes months on end. Even when I'm not flaring, I catch myself worrying about the next one. The constant doctor visits,tests, infusions are necessary but also a bummer. I've missed many important occasions in my life because I've been too sick to participate.

How have your diet/ eating habits changed? Yes! I no longer eat lots of yummy vegetables and fruits because of the pain. I also used to be pretty adventurous in trying new foods, which I no longer do.

Has this lifestyle lead to depression or anxiety? I have moments of depression and anxiety, especially when I have a new complication. Sometimes I worry that I will die; but I only allow myself a certain amount of time to be depressed and scared; if I don't I feel I'm free-falling. So I have my pity party, then I move forward. After I had colon cancer I've made it a point to remind myself of all of the good things in my life on a daily basis, so I try not to dwell on the what-if's.

How many hospital visits or operations have you had? (if any) Only one major operation (abdominal hysterectomy). I had a large fibroid that kept me in a continual flare. Too many minor surgeries and hospital visits to count, over 10on both for me for sure.

How many medications have you been on/ or switched too? 22

Name* Jeannette Schaefer Age* 38
*= (optional)[/QUOTE]

 

[Entchen]

Oooh, a survey!

Had you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis?
--> Yes. I did a science project way back in the 6th grade on digestion and included a section on colostomy. I have a PhD in health psychology, so I was also generally aware of IBD as a serious lifelong digestive disorder and I was familiar with the major symptoms.

What was your reaction to the news?
-->I knew something was wrong, but I hadn't expected it to be something so serious. I was disappointed.

How old were you when diagnosed?
--> I was 30 years old. One nurse at the hospital commented that I was "a bit old" to be newly diagnosed with Crohn's.

What has this disease stopped you from doing in your life?
-->This question is a bit concerning to me because it is not balanced with a question about new opportunities or realizations that I have had since diagnosis. It also assumes that I have been stopped from doing something, when this might not be the case.
-->Being anemic at the present time (this might well be temporary) means that I cannot scuba dive in cold water (i.e., 99% of the lakes and rivers in my country). This is the only thing that Crohn's has stopped me doing.
-->In future, I will not accept a job outside of Canada in case it places my insurance coverage at risk.
-->Otherwise, I have adjusted my life to ensure that Crohn's does not stop me doing things that I want or need to do. For example, I make sure that I get enough sleep -- even if that means going to bed at 8 p.m. I also make sure that I exercise faithfully, even on days with lots of pain, to make sure I am in good "fighting form" and ready to face each day's challenges and joys. If I want to try something new, I simply wait for a "good day" to do it, or I do it more slowly, or I adapt my goals to fit with reality.

What is it like living with this disease?
It is difficult to predict what each day will look like, symptoms-wise, but I prepare myself for this and make sure I have back-up plans and supplies as needed.
Even on my best days, I continue have a limited amount of energy available, so I find that a great deal of planning is needed to make sure I use my energy stores wisely. For example, I may not go grocery shopping and to the YMCA on the same day, or if I want to do both, I will have a nap during the afternoon.
I experience considerable anxiety when I think about whether and/or when the pain will return. I feel anxious when I wonder whether I will be able to access needed resources when I experience severe pain.

How have your diet/ eating habits changed?
My GI has placed me on a low residue diet -- low fibre, no leafy vegetables, etc. I used to be a conscientious and healthy eater and find that a significant portion of my former diet is not presently available to me. I ate just a very few small bites of salad yesterday and spent the rest of the day wondering if I was going to be sick (I was fine).

Has this lifestyle lead to depression or anxiety?
The lifestyle of a person with Crohn's? No, if you are asking about generalized anxiety. I experience temporary anxiety when wondering if a new symptom is okay or if it needs to be reported to my GI, when thinking about pain that could return at any time, and when wondering about whether Crohn's will ever interfere with my ability to get through an entire lecture (it can be scary teaching a three hour class when you're running to the washroom on a moment's notice!).

How many hospital visits or operations have you had? (if any)
One visit to Emerg for what turned out to be a side effect of Prednisone. I had numbness and tingling in my arms, legs, and along my jaw, and the nurse I spoke with was concerned something serious might be happening, such as a stroke -- so she sent me to Emerg.

How many medications have you been on/ or switched too?
7, if you count a round of Cipro and Flagyl.

Name: Kelly Age: 31

 

[Shannon]

Thanks guys!

 

[kildare crohnie]

Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis? no
What was your reaction to the news? pissed off
How old were you when diagnosed? 20...symptoms since 19
What has this disease stopped you from doing in your life? had to quit my job as a bricklayer, caused da split up of my relationship, due to steroids, mood swings.. stress, stopped me from travelling, missed so many nights out and weekends away, havent held a proper job 4 over 4 years, before that i was workin 5 years straight no problem
What is it like living with this disease? a pain in the ass..diseases are for old people or so i thought!!
How have your diet/ eating habits changed? yes i lead a boring non descript life, no drinking, eating bland boring food...etc
Has this lifestyle lead to depression or anxiety? yes ive being depressed
How many hospital visits or operations have you had? (if any) bein hospitalied 3 times,no operations thank god...
How many medications have you been on/ or switched too? 2 many to mention

Name* kieran______________________________ Age* ______26_
*= (optional)
__________________

 

[Astra]

1. Yes I had heard of Crohn's, UC etc before dx

2. I was ecstatic with the news! I had fought for 15 years for a dx,

3. I was 42 when I was diagnosed

4. This disease hasn't stopped me from doing anything except have time off work

5. Last year I was hospitalised for the first time with an infection, it frightened the life out of me, I was told I nearly died, and it took a long time to sink in how serious the disease could get. So, any tweak or twinge in my tum makes me think it's all gonna start again. So as a result of this, I'm extra vigillent, take good care of myself, take my meds, and rest whenever I can. I won't be a Martyr to this disease.

6. I don't eat fried food, takeaways, McDonalds, KFC or any junk. I haven't had any alcohol for nearly 20 months now, and don't intend to drink again, it's not worth it.

7. No depression or anxiety. I'm a very happy person!

8. No Crohn's surgery, one hospitilisation for a week.

9. Azathioprine, Budesonide, 6mp, Prednisolone, Metronidazole, Pentasa, Amitriptyline = 7

My name is Joan I am 47

 

[Rossy]

Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis? Yes
What was your reaction to the news? Not surprised, I thought I had IBD
How old were you when diagnosed? 37
What has this disease stopped you from doing in your life? Applying for promotions in work.
What is it like living with this disease? Not very pleasant and very changeable.
How have your diet/ eating habits changed? Not really, always eaten healthy foods, veggie for 25 years (hasn't done me much good though:ysmile
Has this lifestyle lead to depression or anxiety? yes
How many hospital visits or operations have you had? (if any)1 admission
How many medications have you been on/ or switched too? Aza, Pred, Entocort, Asacol, Mezavant, Balazide + some!Name* _____Graham_________________________ Age* _45______
*= (optional)[/QUOTE]

 

[acg101]

My friend is hosting a CCFA awareness fundraiser and she is compiling a book of interviews with Crohn's patience, and she needs a few more. I told her the people on this forum are so lovely they'd certainly help. You may remain anonymous. THANKS.




Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis?
No

What was your reaction to the news? Wanted to know more about it.


How old were you when diagnosed? 40

What has this disease stopped you from doing in your life?

I stopped smiling. I stopped eating.


What is it like living with this disease? living for 15 yras with Chrons is hell. constant pain. side effects of meds. emotional stress.

How have your diet/ eating habits changed?

could not eat most foods, primarily, no fruits or veggies, no cheese, no breads.

Has this lifestyle lead to depression or anxiety?

Yes, anxiety when I could not find a bathroom or was in so much pain I could not function.

How many hospital visits or operations have you had? (if any)
Hospital visits 20+ , surgeries 1


How many medications have you been on/ or switched too?
20+


Name* ______Dan________________________ Age* _______
*= (optional)

I hope that helps

 

[Absentminded]

Have you ever heard of Crohn’s Disease, Colitis or IBD before diagnosis?

-- Yes I had, my Mum has had UC since she was 23.

What was your reaction to the news?

-- Pretty scared. I thought that it could be Crohn's, but I never thought I'd have an illness as serious as it.

How old were you when diagnosed?

--23

What has this disease stopped you from doing in your life?

-- Nothing so far, and I don't intend to let it.
When I was diagnosed a lot of my family thought that I should give up studying but I refused and have just passed my master's degree with distinction. So there! In your face Crohn's!!

What is it like living with this disease?

-- It can be hard, I get very tired a lot of the time.
It's also quite a lonely disease, I feel quite isolated because of my stomach pains and bms. It's hard for people without crohn's to understand that even if you look well you may not be.

How have your diet/ eating habits changed?

-- I was on a low residue diet for about 6 months, but now I'm in remission I generally eat what I like, with the exception of nuts, wholemeal things, dried fruit, seeds and too much cabbage.

Has this lifestyle lead to depression or anxiety?

-- I had depression for a number of years before I became ill. However, 7 months of prednisone triggered something and I've been back on the anti depressants for the last 6 months.

How many hospital visits or operations have you had? (if any)

-- No crohn's related operations yet. I've had two hospital admissions so far, one when I was first diagnosed and one 4 months later for a blockage.

How many medications have you been on/ or switched too?

-- Remicade, azathioprine, asacol, prednisone, sertraline, hydrocortisone

My name is Lucinda and I am 25 years old.