Your Help is Needed! Questionnaire.

[guest78]

Hi Everyone
I am starting my final major project for Uni at the moment, and my starting point is talking to fellow IBD sufferers. If any of you lovely fellow IBD-ers would mind answering the following questions and posting on here, I would be ever so grateful!
Thank you all so much!
x



Thank you for agreeing to participate in my questionnaire. By agreeing to participate you are allowing me to save and analyse any answers and use them to further my area of study. Although the results will be analysed, your name, identity and any contact details will be kept completely private. With all other results remaining anonymous.
Thank you


Age
Gender
Country you live in?
IBD condition
How long have you had symptoms?
How long have you had the disease?
How has your health been in the past year?
Have you spent time in hospital? Explain
Have you ever required surgery? Explain
Do you have a stoma? If so, when was created?
Has the disease effected your life outside your health? Explain
Has the disease effected you psychologically/emotionally? Explain
Has the disease effected your confidence? Explain
Has the disease effected your relationships? Explain
Describe your support system.
Has the disease effected your body image? Explain.
How could any of these things be improved?
What could be done in society/the community to help you deal with your disease?
Have you ever met with other IBD sufferers? If not, would you consider meeting?
Have you ever done any fundraising for IBD charities? Explain.
If not, would you?


Are you willing to be contacted for further information or questions?


IF A STOMA OWNER
Are you open about having a stoma? Please explain who knows.
How did you find adjusting to owning a stoma?
Have you named your stoma?
Did it have an effect on your confidence?
Did it have an effect on your body image?

 

[Jennifer]

This member has been approved by an Administrator to post this message

I'm not adding this to your title under your avatar because you're a regular member.

 

[SarahBear]

Age? 21.

Gender? Female.

Country you live in? US.

IBD condition? Crohn's.

How long have you had symptoms? Starting at around age eight, so almost fourteen years, I'd say.

How long have you had the disease? I'd assume as long as the symptoms. If you mean how long I've been diagnosed, it'll be five years this December.

How has your health been in the past year? My Crohn's has been in remission, but I appear to have another yet undiagnosed condition that has flare / remission cycles as well. In the past year, I've experienced two flares of whatever that is. I also experience Crohn's-like symptoms somewhat regularly, but as they increased with the flares of whatever else is going on, I'm not sure what exactly they should be attributed to.

Have you spent time in hospital? Explain. No.

Have you ever required surgery? Explain. No.

Do you have a stoma? If so, when was created? No.

Has the disease effected your life outside your health? Explain. Absolutely. I was frequently absent from school, thus leading to academic and social issues as a child. I'm still struggling with those.

Has the disease effected you psychologically/emotionally? Explain. The biggest issue would be that I have difficulty connecting with others and forming friendships. As a child, I was never in school enough to form the same kinds of relationships as the other kids, and when I was there, I was usually focused on my stomach problems rather than being social.

Has the disease effected your confidence? Explain. In social situations, sometimes. I am confident in myself physically, though.

Has the disease effected your relationships? Explain. Yes, but I'd rather not explain.

Describe your support system. The forum.

Has the disease effected your body image? Explain. Only when I drop too much weight. I don't really feel badly about myself as much as worried though. The worry shifts focus onto my weight, and when focus is there, it sometimes becomes an issue.

How could any of these things be improved? Not really sure.

What could be done in society/the community to help you deal with your disease? Increased awareness would create a better support system for everyone, with less judgmental attitudes.

Have you ever met with other IBD sufferers? If not, would you consider meeting? I haven't, but I'd love to.

Have you ever done any fundraising for IBD charities? Explain. No.

If not, would you? If I found the right one and had the opportunity to do so.

Are you willing to be contacted for further information or questions? Yes.

 

[valleysangel92]

Age

20

Gender

Female

Country you live in?

Wales, United kingdom
IBD condition

Crohns disease
How long have you had symptoms?

Around 6 years

How long have you had the disease?

Just under a year

How has your health been in the past year?

It has been poor for most of the year

Have you spent time in hospital? Explain

yes, admitted 6 times in the last year, 5 as emergency and one planned. 3 of the five emergencies were before I was diagnosed... After diagnosis- 1 was because of my GP admitting me and the other was through A+E after severe pain.. I had an obstruction which was treated with fluids , pain meds and rest

Have you ever required surgery? Explain

Yes, a hemicolectomy for a stricture

Do you have a stoma? If so, when was created?

No

Has the disease effected your life outside your health? Explain

I had to leave university and I am unable to work

Has the disease effected you psychologically/emotionally? Explain

Yes - being unable to stay at uni was tough

Has the disease effected your confidence? Explain

No

Has the disease effected your relationships? Explain

It's made us stronger

Describe your support system.

My boyfriend, mum and dad are my main support

Has the disease effected your body image? Explain.

No

How could any of these things be improved?

N/a

What could be done in society/the community to help you deal with your disease?

A local support group would be nice

Have you ever met with other IBD sufferers? If not, would you consider meeting?

Yes I would consider

Have you ever done any fundraising for IBD charities? Explain.
If not, would you?

I haven't yet but I would

Are you willing to be contacted for further information or questions?

Yes

 

[Justanothercp]

Age: 44
Gender: f
Country you live in?: USA
IBD condition: Crohns
How long have you had symptoms?: 23 years
How long have you had the disease? Diagnosed 20 years ago
How has your health been in the past year? Fair-good
Have you spent time in hospital? Yes, bowel resection in 2002. And, 2 days in 2011 for obstruction.
Have you ever required surgery? Bowel resection, terminal ileum
Do you have a stoma? If so, when was created? N/a
Has the disease effected your life outside your health? Yes, it has negatively effected my marriage, my mental health at times, and somewhat my ability to travel.
Has the disease effected you psychologically/emotionally? When in a flare it is a lot of stress and worry about my health/quality of life, how it effects my family and my livelihood/finances.
Has the disease effected your confidence? Probably, but I think that kind of comes and goes with a flare.
Has the disease effected your relationships? It is a big strain on my marriage at times.
Describe your support system. : I have family (mom) and spouse that are always available, but I try really hard not to need/ask for help.
Has the disease effected your body image? Sure. It did more 10 years ago when I was really sick, I felt ugly, gross, diseased. I feel better about myself now that I'm not as sick. But, as you know, this isn't a sexy disease!
How could any of these things be improved? Geez, I wish I had an answer to that. I think and hope improvements in treatment and maybe even a cure would help. I think another thing is education, I've even had MDs who didn't seem to understand what I was going through.
What could be done in society/the community to help you deal with your disease? I can't think of anything. I sort of feel like this is just my burden to deal with, I'm not sure society can do anything to help, and honestly I don't expect them to.
Have you ever met with other IBD sufferers? If not, would you consider meeting? Yes, I went to a support group for a while, but it wasn't convenient. The online forum seems way more helpful. So many more people, you are more likely to find people who have some of the same concerns.
Have you ever done any fundraising for IBD charities? Explain. No.
If not, would you? Yes, I should. I give to other charities, probably because they make it easy by so much marketing. But, now that you've made me think about it, maybe I'll change who I donate to!!


Are you willing to be contacted for further information or questions? Yes.


IF A STOMA OWNER: n/a
Are you open about having a stoma? Please explain who knows.
How did you find adjusting to owning a stoma?
Have you named your stoma?
Did it have an effect on your confidence?
Did it have an effect on your body image?

 

[hbrekkaas]

Age 28
Gender - female
Country you live in? - Canada
IBD condition - Crohn's
How long have you had symptoms?Since I was a child/teen I had really mild symptoms (that we know now were symptoms), but severe ones for 4 years
How long have you had the disease? - I was diagnosed in April, but had the disease for longer, just undiaognosed
How has your health been in the past year? - Pretty bad
Have you spent time in hospital? Explain - Yes, I was diagnosed April 1st 2013, admitted to hospital April 2nd. I spent the next 2 months in and out of hospital, all 4-5 day stays (3 total) before being admitted to the ICU and haivng an resection on May 31st.
Have you ever required surgery? Explain - Small bowel resection, 30.5", 2 abscesses (1 ruptured) and a fistula were removed.
Do you have a stoma? If so, when was created? no
Has the disease effected your life outside your health? Explain - The only thing its really affected is that I"m not always to do what I want to do with and for the kids. I'm too tired, or I cant trust that I won't need to go running for a bathroom etc.
Has the disease effected you psychologically/emotionally? Explain - Not really, if anything it made me stronger
Has the disease effected your confidence? Explain - Not really
Has the disease effected your relationships? Explain - Nope
Describe your support system. - I have my kids who all help if needed, my mom and dad, my husband and his family, my brother and his wife...there is always someone to step in and help if needed, and I'm never left alone in town with the kids without my husband or my parents....yes, I kinda have babysitters.
Has the disease effected your body image? Explain. - Its pretty hard to always feel good about myself when I"m too bloated or wear most of my clothes or I"m putting on weight because of prednisone use, or when I'm losing hair, always pale....it doesn't bother me too often though, usually I"m ok with myself
How could any of these things be improved? - No idea. Maybe?
What could be done in society/the community to help you deal with your disease? Education! There are so many people who dont' understand what IBD is, or they assume that every IBD is the same and what works for one will work for others.
Have you ever met with other IBD sufferers? If not, would you consider meeting? There are not many IBD sufferers in our small town, but right after I was diagnosed one reached out to me, we talk on facebook often. We haven't met in person though.
Have you ever done any fundraising for IBD charities? Explain. - No, I was planning on being involved in the M&M bbq this year, but I was stuck in the hospital instead.
If not, would you?

 

[Talaia]

Age: 19
Gender: F
Country you live in: Canada
IBD condition: Crohn's
How long have you had symptoms: since I was eight, so coming up on 12 years
How long have you had the disease: see previous question, diagnosed shortly a couple of months after first symptoms
How has your health been in the past year: continual mild flares, switching meds twice and having some nasty side effects, low energy levels, but not disastrous
Have you spent time in hospital? not overnight (amazingly)
Have you ever required surgery? yep, but not for crohn's
Do you have a stoma? If so, when was created? no
Has the disease effected your life outside your health? yes, definitely, but I'm not sure I want to elaborate publicly
Has the disease effected you psychologically/emotionally? yes, although more recently than as a kid. I get very stressed/anxious/panicky about medical issues. I do not have a great relationship with my body.
Has the disease effected your confidence? No, I don't think so. Most of my confidence comes from doing really well in my field of study.
Has the disease effected your relationships? If you mean romantic relationships, then NA. I don't think it has affected my friendships much.
Describe your support system. These days, mostly my awesome friends.
Has the disease effected your body image? Yes. I don't think of my body as part of myself. To me, it's just this (somewhat ******) tool I have to work with to get things done.
How could any of these things be improved? One major problem for me is that I still don't have access to my chart from the children's hospital where I was treated as a kid. Now I'm flying blind trying to navigate the adult healthcare system. I wish someone would jut hand me the information I need to make good decisions instead of me trying to navigate this giant bureaucracy.
What could be done in society/the community to help you deal with your disease? In academia, you're expected to work constantly and intensely. Well, I can't always do that but I still do excellent work. The culture is such that people take you less seriously if you don't pull crazy caffein filled all-nighters, which sucks.
Have you ever met with other IBD sufferers? If not, would you consider meeting? Not officially, but I've talked to other people in my life who happen to have IBD.
Have you ever done any fundraising for IBD charities? Explain. No, as a kid I was too embarrassed/scared to talk about it and now...I guess I don't have a good excuse.
If not, would you? This is kinda selfish, but I really just want to get on with my life. When I feel good I don't want to be thinking about IBD and when I feel bad I'm not up for fundraising. Plus, it's just depressing to look at how little money goes into IBD research. It seems almost futile.

Are you willing to be contacted for further information or questions? Sure, message me.