What is the most important thing that family & friends need to know about their loved ones illness?

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graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/25/2008 1:49 PM (GMT -7)   
Dear friends,
 
I used to post on the Lyme Disease Board last year. I'm doing better now but I just found out that my cousin has been diagnosed with Crohn's Disease for about a year.
 
I know what it's like to suffer with a long-term illness and deal with lack of understanding from family and friends. I would like to be better informed about my cousin's illness so I can offer her good support.
 
Please could you give me an idea of any good resources, articles or books that I can look at and get to know more about her illness?
 
What would you consider the most important thing for your family members to know about what you go through on a day to day basis?
 
Any help you can offer is greatly appreciated. Thank you so much!

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom free.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 

Please check out all the Lyme friends from Healingwell...

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karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/25/2008 2:22 PM (GMT -7)   
try the CCFCA website. there is tons of info there. http://www.ccfa.org/
 
My favorite story I got here from someone posting it. the spoon theory. It is written by a person with Lupus but she is good at explaining how a chronic illness effects our daily lives.  I have shared this with my family a lot.
 
 
 
So nice of you to try to understand your cousin's illness!
 
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/25/2008 2:30 PM (GMT -7)   

Hello Grace,

I would direct people that want to know about Crohn's to this site.

http://www.ccfc.ca/English/info/diagnosed.html
Also to the right you will see Resources, you may want to browse our resources as there are book available.

Most of all like anyone who has just learned they have a chronic disease just let them talk  about how they are  feeling, if their in pain, whats going on with their body and you  will learn as you they  through this. Validate their feelings of fear and pain and be there for them.

Gentle hugs for you.  You are truly doing the right thing in looking for ways to educate yourself and your family about this disease.


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/25/2008 3:25 PM (GMT -7)   
Wow! You are great! I wish you were in my family! LOL :) Alot of people seem to think that if I'm not in the hospital, then all is fine. They fail to realize that it s a daily struggle every single day. There is a free book you can get online called 100 questions and answers about crohns diseas and ulcerative colitis.

graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/25/2008 3:32 PM (GMT -7)   
This is great information! Thanks so much all of you, keep it coming!

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom free.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 

Please check out all the Lyme friends from Healingwell...

http://new.photos.yahoo.com/lymetimes


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 1/25/2008 4:00 PM (GMT -7)   
The fact that you care, and also that you struggled with your own chronic illness will be a big help. Everybody copes differently, so asking your cousin how best to support her would be a good idea. Don't assume if you don't hear from her that everything is fine. My sis-in-law called the other day and as soon as I picked up the phone she said, "since you have been doing better I never hear from you." In actuality I have been very sick...I just felt like hanging up the phone!!!! Also, and maybe this is just me, but sometimes I'm sick of talking about my illness, and really want to talk about other things...try to take those cues too. Hope this helps.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 1/25/2008 4:30 PM (GMT -7)   
Oooh, I hadn't read that Spoon Theory before. That was great.

I want people to know the daily struggle of Crohn's. That just because I may look and feel and act GREAT one minute, I may be doubled over in pain and in the bathroom the next minute.

I want people to know how terribly alienating this illness can be. I mean, think about what usually happens when people get together as a family, as friends, as church members, as coworkers and even at funerals...WE EAT!! Many times, that's what brings people together - good food!!! But for the Crohnie, a get-together involving a healthy person's food (steak, burgers, fries, pizza, salads, chips, etc) can be a nightmare, particularly if we are in a flare period. We can spend a lot of time in the bathroom and a lot of time couped up in bed. This can be lonely, very lonely when everyone else is out doing their thing.

I want people to know that Crohn's doesn't JUST affect out gastrointestinal tract. Because it's an auto-immune disease, having a Crohn's flare can set other things off as well that don't even remotely seem related to the intestines. For example, I get urinary tract infections a good bit. I also get awful mouth ulcers which makes it hard to talk. I take meds for stomach ulcers. During a really bad Crohn's flare, my feet get inflamed to the point that I can't drive or walk well. When I can't walk well, it makes it hard to get to the bathroom fast enough during that flare. Skin rashes, bursitis...I'm sure the list could go on with others experiences.

I want people to know that Crohnies have to often PLAN a road trip carefully. During a flare, I cannot travel. I may have a BM fit and 10 minutes later have another one. And have to go again 20 minutes later, or 5 minutes later. But even when I feel OK and DO travel, I bring an arsenal of stuff! The BEST toilet paper money can buy (Charmin Aloe + E is the BOMB!), my anti-diahreal syrup, Gas-X, prescription meds, plain crackers, washcloth, extra underwear...

I think you're AWESOME for wanting to understand Crohn's so you can understand your cousin better. That rocks!
Diagnosed in October, 2003 at age 31.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/25/2008 6:03 PM (GMT -7)   
I loved the spoons article I have never seen it before and its a perfect discription of living with chronic disease.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/25/2008 9:27 PM (GMT -7)   
The most important thing that I need friends and family to know about me having crohns is that I may need a toilet at a moments notice....and that alone is very hard on ones mentality/emotions.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 1/26/2008 12:02 AM (GMT -7)   
For me, the most important thing is that this disease is not who I am....its part of what I have to deal with everyday but it doesn't define me.
Also, I've learned over the years that its important for me to speak up...when I'm not feeling well I owe it to myself to take care of myself ...that is easier said than done. We all tend to push ourselves even when we aren't feeling great....it's nice to hear from a friend or family member...."Now, we've made these plans, but if we need to cancel at the last minute that is perfectly ok."
Knowing that someone else is dealing or has dealt with a chronic illness is helpful too....You are helping more than you know just by informing yourself and trying to understand.....
Love and prayers!
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/26/2008 9:00 AM (GMT -7)   
I want my friends and family to understand that now means now. As PB4 said, needing a toilet at a moments notice is really hard but friends and family can do a lot to make it easier on you. My friends give me the aisle seat at the movies, my 6'5" husband gives me the aisle on an airplane (he is a saint), and just having one less obstacle to the restroom makes me breath easier. Also, I have had people quietly tell me where another bathroom is at a gathering, one that is more remote and private, without a line. That really helps too. Who wants to stink it up w/ all your friends waiting to get in? At a work function at the bosses house (his wife is a nurse and knows about my crohns) she pulled me aside and said, "everyone is using the downstairs bathroom but you are more than welcome to go upstairs if you want to). I really liked that.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/26/2008 10:44 PM (GMT -7)   
Thank you all so much for your responses. Yes, a little kindness and consideration does go a long way for someone who is dealing with a chronic illness. I know that from my own experience too.

I think from talking to my cousin, something that Marie-Claire said is also essential to her:

". . . the most important thing is that this disease is not who I am....its part of what I have to deal with everyday but it doesn't define me."

She also told me that she doesn't talk to other family members about it too much because:

1. She doesn't want them to worry and
2. She doesn't want to seem like she's feeling sorry for herself

Also it seems to her like a lot of information on the net about Crohns is pretty negative & depressing.

How much information is too much for other close members of the family?
How do you guys cope when you read some of the negative or depressing information that's out there?

Thanks very much again for all your help. My cousin has been reading your posts too, we both appreciate the time all of you have taken to reply to us.

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom free.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 

Please check out all the Lyme friends from Healingwell...

http://new.photos.yahoo.com/lymetimes


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/26/2008 11:33 PM (GMT -7)   
Kittikatt said...
Oooh, I hadn't read that Spoon Theory before. That was great.

I want people to know the daily struggle of Crohn's. That just because I may look and feel and act GREAT one minute, I may be doubled over in pain and in the bathroom the next minute.

I want people to know how terribly alienating this illness can be. I mean, think about what usually happens when people get together as a family, as friends, as church members, as coworkers and even at funerals...WE EAT!! Many times, that's what brings people together - good food!!! But for the Crohnie, a get-together involving a healthy person's food (steak, burgers, fries, pizza, salads, chips, etc) can be a nightmare, particularly if we are in a flare period. We can spend a lot of time in the bathroom and a lot of time couped up in bed. This can be lonely, very lonely when everyone else is out doing their thing.

I want people to know that Crohn's doesn't JUST affect out gastrointestinal tract. Because it's an auto-immune disease, having a Crohn's flare can set other things off as well that don't even remotely seem related to the intestines. For example, I get urinary tract infections a good bit. I also get awful mouth ulcers which makes it hard to talk. I take meds for stomach ulcers. During a really bad Crohn's flare, my feet get inflamed to the point that I can't drive or walk well. When I can't walk well, it makes it hard to get to the bathroom fast enough during that flare. Skin rashes, bursitis...I'm sure the list could go on with others experiences.

I want people to know that Crohnies have to often PLAN a road trip carefully. During a flare, I cannot travel. I may have a BM fit and 10 minutes later have another one. And have to go again 20 minutes later, or 5 minutes later. But even when I feel OK and DO travel, I bring an arsenal of stuff! The BEST toilet paper money can buy (Charmin Aloe + E is the BOMB!), my anti-diahreal syrup, Gas-X, prescription meds, plain crackers, washcloth, extra underwear...

I think you're AWESOME for wanting to understand Crohn's so you can understand your cousin better. That rocks!

The bold part is really important that friends and family understand. You are fine, right up until you're not. Then, you are *really not* fine. If your Crohnie friend/relative suddenly gets up from the dinner table at the restaurant, don't ask questions, and don't get uncomfortable. Also, if the Crohnie doesn't order anything at the restaurant, don't ask questions, and don't get uncomfortable. I'm forty years old, and my Mom still drives me nuts with this one. She *knows* I have Crohns, yet everytime we all go out to a restaurant for some big family occasion, she badgers me if I don't order food to the point where I have to just come out (in front of all the family and guests), and say something like "Mom, I have Crohns. I would like to spend this get together enjoying the company of our friends and family. Not reading a newspaper in the restroom. I'm not ordering food, ok?" Which usually results in a few red faces around the table.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/27/2008 8:08 AM (GMT -7)   
Thanks Crohn'sDaddy! I like that you have some serious chutzpah!

Diagnosed with Tick-Borne Illness in August 2006. Symptom free six months and counting.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 1/27/2008 3:29 PM (GMT -7)   
The travel issue is big for me as far as hoping for understanding. It is nearly impossible to get into a car for the first 5 hours I am awake and not worry. And, it's no fun when you're worried. The bathroom at a moment's notice is important, too. It's embarrassing enough to have the disease, it helps to have someone not question if I jump up in the middle of a sentence. Sometimes, if I waited for the sentence/topic to end (so as to gracefully leave the conversation), it would lead to an even *more* embarrassing moment!

And, finally... yes, we hate having Crohn's, but it's important to know we have support and people to talk to about it. Thanks for asking this question. I wish everyone were as thoughtful as you!

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/27/2008 4:18 PM (GMT -7)   
I have to add a what not to do as my mother just did it to me agaim. If you have a family member with a chronic illness and you don't bother learning much about the disease (or even if you do) then don't pretend you know more than the doctors and offer non medical medical advice. I saw on the internet that if you would just do...(insert newest fad here) then you would (insert spurious miracle here).

Obviously you would not do that as you cared enough to come here and listen to all of us give advice.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/27/2008 7:06 PM (GMT -7)   
I agree with everyone else, especially about feeling fine one minute and in terrible pain the next. It's very unpredictable. Also, that WE ARE NOT LAZY sometimes the crohns just makes us really tired. Also, for me the thing that used to get me is when i say i'm in pain, please just understand that i'm in pain, i don't necessarily want to discuss what kind of pain ( I often get abcesses on my bottom, that make me walk funny, and they'r rather embarassing) Most aspects of the crohns are rather embarassing.

O and last but not least i'm not sure if i over looked someone saying this already. EVERYONE'S CROHNS IS DIFFERENT. I can't tell you how angry i get when someone says to me that they know someone with crohns and they're not as sick as I am, or its all in your head or diet, or this medication will work or won't. Trust us, if it were up to us we wouldnt be sick. We would not fake our symptoms!

Ur a great person for trying to find out more info. I think your question was a great one. There was so much i wanted to write but didnt even have to b/c everybody else already has.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

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