What would you like people to know?

[Bmwife]

Hello Everyone,

I am a nursing student. I have a concept map on chronic disease to design and I have decided to do mine on Crohn's disease. This will be seen by around 30 nursing students and nursing professors.
I was wanting some input into what you would like people to know. Are there misconceptions you would like addressed? The different types of conventional and non-conventional medications that can be tried. Emotional responses to the illness and the impact on your life, family and friends. Anything is up for consideration as I need to paint a broad picture of all aspects of the disease. I obviously have one view of the disease but please feel free to share. I am taking this opportunity to reach students who may have no idea about the disease.

I will not be using any names of putting any identifying information in my presentation.

Thank you all

 

[Jennifer]

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

 

[Layla]

OK, I'm sure there are loads of things to share but let's start with:

If a person looks healthy, it doesn't mean they are
People with IBD can be overweight
There is no diet that will suit everyone

I'll probably think of quite a few more but I'm keen to see what other people say as well.

 

[tots]

Exactly looks can be deceiving

Having worked for a GI before I was diagnosed I feel confident a lot of us downplay our disease, meaning we don't make a big deal about it, we handle a lot on our own. Many people don't have a strong support system and in fact probably not a lot of us have people
With the disease close to us. We want to be trusted to know when something is wrong with us.


Lauren

 

[Cross-stitch gal]

It would be nice to have someone who's open to suggestions and listens to others. Whether it's the patient themselves or their spouses/family members who happen to be in the room with us. Sometimes our family members can explain things better than we can.

Also, there are many forms of IBD as well as where the disease is located and not all patients are the same. I myself was on too much medication at one time for the size of person I am and it was me causing more problems for me rather than helping me.

 

[Bmwife]

Hello Cross-stitch-gal et al,

I understand what you are saying about too much medication. My DH recently had an increase in medication during a flare up and became very ill. It's very sad and frustrating to watch and I feel for all of you who battle this disease. Thank you all so far. I am taking note.

 

[my little penguin]

That constipation ( not diarrhea ) can be a presenting sign of Crohn's disease .
Not all constipation is "functional" and some can be the result of inflammation .

That rectal prolapse in children over 4 can also be a sign of Crohn's disease due to inflammation in the rectum.

Not all people shows signs of inflammation from crohns in their bloodwork
Some can have normal inflammatiry markers but still have active inflammation going on.

 

[ronroush7]

I might spend a while in the bathroom because that is part of the disease for me.

 

[2thFairy]

That IBS is *not* the same thing as IBD! Yes, you can have both, but they are not the same condition.

 

[Tuff]

I no longer tell people about my Crohn's because of the comments I've received. I've been told by people I know things like their babysitter's cousin's neighbour cured their Crohn's with acupuncture, yoga and aloe vera. So I should definitely try that. Or any number of cures like that. I put on a strong exterior, but the reality is that I've come close to death. It's like people think if I just took better care of myself, I could heal. I probably have a way better diet than they do, and get more exercise and sleep. If it was only that easy.

 

[MissLeopard83]

I no longer tell people about my Crohn's because of the comments I've received. I've been told by people I know things like their babysitter's cousin's neighbour cured their Crohn's with acupuncture, yoga and aloe vera. So I should definitely try that. Or any number of cures like that. I put on a strong exterior, but the reality is that I've come close to death. It's like people think if I just took better care of myself, I could heal. I probably have a way better diet than they do, and get more exercise and sleep. If it was only that easy.

I completely understand what you mean. That's true for any chronic illness. I have chronic depression because of what doctors call a chemical imbalance. I've tried several times to go off the medication and I always have regression about a year later so I have to stay on it. I've had both family and friends tell me, "Oh, you should try (insert suggestion here). I did it and it worked for me." There was one friend that told me that she had depression too and she tried diet and exercise which worked for her. However, I still see signs of depression in her as she is always posting sad things on her Facebook page. There are just some people who don't understand the meaning of "chronic illness." It's frustrating. Especially because most of those people don't like the idea of taking medication the rest of their lives. I prefer to feel better rather than constantly feel depressed.

 

[Lizzie]

I'd like people to realise that I really can't eat what they're offering me, much as I would love to and appreciate their kindness, and that it just doesn't help to force me to say no half a dozen times. So many people just don't understand that food can cause harm to a person with Crohns.

 

[DougUte]

I have people who think that my weird dietary issues are all in my head or something. They don't understand that low fibre diet during a flare will help prevent blockages. I generally avoid roughage in my diet in order to avoid pain.

 

[scottsma]

I really can't be sure if I'm going to be able to have a day out,or go for a coffee until the actual day. All morning appointments are likely to be cancelled on the day,and re-booked for an afternoon.

 

[wild_one353]

Disease activity is linked to higher rates of anxiety and depression, there are studies that show this.

And if you really want things to get interesting tell them them most chronic diseases are practically nonexistent/extremely low in non-developed countries where there is practically no technological advancements.

 

[Beach]

In general, an example I can think of is, if I'm explaining my IBD condition or why i'm having a bad time with the stomach at the moment, it isn't necessary to let me know of someone else with a condition you feel is equally as bad as I have. This seems to be a knee jerk reaction for most people I run into.

Disease severities are not contests. IBD conditions can vary from person to person in severity. Our conditions can be devastating all to often both physically and mentally. For some reason though many tend to believe they have it just as bad, or someone else is worse. It can run into the comical side at times I've found.

For doctors and nurses, most I've met, whether an IBD specialist or not, will let me know a cure is soon to happen. It happens without fail what ever the speciality. I appreciate the good news and beliefs. After nearly 30 years of hearing this I'm naturally skeptical in what articles you are reading if reading IBD articles at all.

I'm OK if you tell me you do not know why there are IBD conditions. Medical science doesn't have the answers for many health conditions. Offering support and kind words can brighten my day.

 

[woops!]

I commend your nursing school for giving you a project that will help new nurses have a better understanding of different chronic dx's
I would want others to understand the following:
1) just because someone with crohns can eat broccoli and feel fine, doesn't mean I can! Don't assume we all eat exactly the same food.
2) as mentioned above, just because I don't look sick doesn't mean I am not.
3) if I don't eat what you have made, please don't think I'm being rude.. I just don't want the pain and bathroom trips.
4) yes I loose weight rapidly, so don't tell me "I wish I had Crohn's for a while so I could loose weight too." (Yeah that made me mad).
5) understand that almost my every decision involves my disease. Here is a 10 min example of my day.
Wake up- need bathroom as soon as I stand- is my husband out of toilet, if not I have to wait.
Get dressed- do I need to wear elastic waist for quick bathroom access, or can I be brave and wear pants with buttons.
Breakfast- what can I eat, what should I eat, can I even eat at all
It goes on and on.........
Woops!

 

[Bmwife]

Disease activity is linked to higher rates of anxiety and depression, there are studies that show this.

And if you really want things to get interesting tell them them most chronic diseases are practically nonexistent/extremely low in non-developed countries where there is practically no technological advancements.

That's really interesting. I'll look for some journal articles. Thank you.

 

[Tuff]

IBD patients have a threefold increased risk of developing DVT or PE.
http://www.ncbi.nlm.nih.gov/pubmed/11307809
I was diagnosed after I almost died of a pulmonary embolism.

 

[wild_one353]

That's really interesting. I'll look for some journal articles. Thank you.

Here are some articles to get you started. Denis P. burkitt is one guy who made alot of discoveries in this area.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1588096/pdf/brmedj01541-0038.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659900/

This paper shows crohn's rates around the world, nova scotia way higher then china these are old statistics though chinas rate may be rising now but just to show you how low other countries USED to be.
http://biologie.univ-mrs.fr/upload/p87/Economou.pdf