How to communicate with others about Crohn's

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Wilder
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 8/9/2010 9:13 AM (GMT -7)   
I read all the time how important it is to communicate with friends, family about your illness.  Yet when I try to do this, I'm usually met with either awkward silence or a rapid change in subject, as if I'd never even said anything. 
 
I feel like the reason my wife left me was due to this illness.  It seems I am constantly having to turn down social opportunities due to either illness or medication side effects. 
 
How are you supposed to follow the experts' advice and communicate to others about your illness, when others want you to pretend that this thing doesn't exist?

[color=green>Wilder

Current meds: Cimzia, 6-MP, Prednisone, Lexapro, Ativan, Fosomax, [/color]

Supplements: Multivitamin, calcium, Vit. D, B-12, probiotics, fish oil

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 266
   Posted 8/9/2010 9:20 AM (GMT -7)   
My wife had known that I had Crohn's before we got married and I had alreday told her about the potential complications.
 
As to my colleagues and friends, I try not to tell them about my Crohn's disease, because it can be hard to explain.  I just tell them that I have digestive issues so I cannot eat cheese, spicy foods, etc.  They understand.  Does this affect my work?  Yes, but not a lot.

Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/9/2010 9:27 AM (GMT -7)   
I find communication one of the harder issues to deal with this disease. It is usually met with cool indifference, mainly
because that people at large have bouts of diarrhea and toilet cramps, so therefore, "what's your problem". We can't really
blame the population as a whole, this is just a disease that is given little or no media cover. It's almost brushed under the
carpet.
Once, a long time ago, we started a thread that had us all contacting Oprah Winfrey, in the hope we could give our forgotten
disease some "air time". Unfortunately, even though lots of us wrote to Harpo studios, we, again, weren't listened to.

All I can say is, we know how you feel. BUT you will be listened to here!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/9/2010 9:30 AM (GMT -7)   
Wilder, I start with basic information and try to leave out the gross stuff that most people don't want to hear.  Most people are content to learn that it's an inflammatory disease in my intestines and that I have arthritis along with it.  If people probe for more information, then I will be happy to give it to them, but most don't ask specifics about the bowel aspect.  I'm amazed at how many people now respond with, "I know someone with Crohn's," compared to several years ago.  Many more people have heard of it now, so you may not have to give as much information as you are thinking you do.   
 
This disease is hard on marriage sometimes and I've heard of many people getting divorced over it.  Luckily, I already had issues when I met my husband, so he has grown up dealing with this.  That doesn't mean it isn't hard on him when I am really sick, but he at least knew somewhat about what he would be dealing with.  It helps that he has his own health problems, so we sit on the couch or take a nap together like two old people (and we're 29). 
Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 8/9/2010 11:21 AM (GMT -7)   
I personally have no desire to broadcast the details of Crohn's disease to the world. I'm not saying this is what you do at all, but think about it- do you enjoy hearing other people drone on and on about their health problems? It could be awkward, embarrassing or just plain boring to the other person. Maybe just try to keep the details to a minimum. You could say "I am not feeling well/ up to that right now", "I am having some digestive issues today" "I have some health problems, and they can be rather serious". If someone asks, you could say that you have Crohn's and if they ask for more details I would explain little by little. But yes, you should certainly leave out any bowel movement/gas descriptions. Keep in mind that other people have no idea what this is like and it can sound like you are looking for attention or sympathy. I'm sure that everyone on this board understands what it's like but other people have no idea. You don't have to try to make them understand the full brunt of the illness, it will just make some people uncomfortable.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 8/9/2010 12:11 PM (GMT -7)   
you know I was watching tv the other night and there was a commercial on about crohns, and it started out with a young man probably 30 running into a br. and dropping his pants all you see his himm run into the stall and then the camera pulls back and you see his pants around his ankles and then the commercial goes on about socially embarrasing cd is. and painful but i wiah they would run that ad alot. today cd has no age preference nor religious preference, nor gender. it seems people are getting younger and younger with cd.

artist guy

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 8/9/2010 12:40 PM (GMT -7)   
I have been told I provide too much information.  I have never found it difficult to talk about my crohns.  I have no shame !! yeah
Diagnosed 2005.  42 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants
 
My partner has UC & Crohns

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 8/9/2010 1:18 PM (GMT -7)   
i used to be pretty open about my crohns. I mean i didnt give detail about BM's and gas, but i told it how it was. Most people ran away screaming so i now i rarely speak to people about my disease. Not that i have many people to speak to anyway barring the medical community. I'm totally open with them. Poor sods!! ;)
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
Was at uni, but have paused the course to try to figure out my health!

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 8/9/2010 1:48 PM (GMT -7)   
I usually tell people very basic stuff, but only if I feel they need the information. I've come a cross a fair number of people who know someone else with Crohn's.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche

sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 8/9/2010 3:11 PM (GMT -7)   
I will just tell people I have Crohn's and sometimes they already know what it is. If they don't they will usually nod and say ok, a few will ask more questions so I'll just tell them basically what it is w/o disclosing nasty details.

However with my family, I tell it how it is. When they ask how I'm doing today CD wise I'll tell them. I'm grateful I have such a loving husband too. I don't think he'll ever leave me because of this. We've been through worse than this.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's December 2009.
Flaring since October 2008 with occasional spikes in symptoms
Possible Rheumatoid Arthritis
Osteopenia

Medication: Imuran 75 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine, Calcium w/vit D

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/9/2010 3:21 PM (GMT -7)   
Wilder, do the "experts" mean that we should be graphic about our symptoms, or that we should be more communicative about our abilities and limitations, about our pain levels and how we're feeling emotionally, how fatigued we are, and what (if desired) others can do to help us?

My feeling is that the constant discussion about communication is more to do with the latter.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/9/2010 5:22 PM (GMT -7)   
I try to keep things 'medical.' People react much better when you say "frequent stools" instead of "lots of pooping."

I also usually stick to the group of friends I already have. Some of them know more about the gritty details than others (this directly correlates to the amount of time we hang out) but they all know that when I say I don't feel well, I'm not just making excuses, and that I poop a lot. They are comfortable enough with it/me that they occasionally crack a joke about it. They're usually pretty funny, too. Anyone new will usually be with at least one of the guys, so if I'm absent they can get a basic rundown. I generally don't bring it up as its own topic, except in vague "I feel like crap" comments, but if it's relevant to another discussion or someone asks about it, I'll bring it up and/or give a basic explanation of the disease itself and some vague references to the symptoms.

Of course, this is one of those generational things. I'm 22, and the oldest of my friends is in his mid thirties, so we're of a generation that's been between old-school stuff and new-school stuff (for example, my classmates and I got to pick between the new and old SATs). Also, the internet became a big thing in our teens... and with it, Google. So we're generally pretty adaptable and open-minded.

My parents's generation, on the other hand, would be horrified by some of the things I say in casual conversation with my friends. They're in their 60s, and while they themselves are exceptions (they have health issues of their own, and have lived with my Crohn's just as long as I have), some of my family members are not. So, I find it best to tailor my conversations to the audience. My friends and parents get the R rated content, my extended family and acquaintances get the PG13 content, that sort of thing. I do the same thing with swearwords.
Diagnosed with Crohn's late December 2004. Narrowly avoiding a full-blown flare using nothing but sheer awesomeness.

Post Edited (Bane) : 8/9/2010 6:31:43 PM (GMT-6)


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/9/2010 6:53 PM (GMT -7)   
I have become open about my disease. I find that many people do know a bit about it but that most do not. I have found one or two that have what is obviously mild disease and have NO idea what severe CD is like. I learned last February what the difference was between mild/moderate & severe. OMG

I don't think I can help you much when I say that I don't give a rats rear-end about people who are turned off or run away screaming. I mean I don't feel a need to tell them that the word "STENCH" may be inadequate to define our abilities. But I think it is fair to say that it hurts like bloody hell, makes you have to go to the bathroom suddenly and urgently, and that it makes you weak and tired even though you may LOOK HEALTHY.

Shame on your relatives and shame on your wife if your accusation is true. In sickness and health????? Talk openly if that is what you need to do either for your own mental health or to make others understand why you don't attend their social function. I am actually a painfully shy person and so this disease doesn't hurt me socially as much as many of our CDers. I am open because why should I hide? WHY?

Folks who change the subject or get uncomfortable have shown their immaturity at best and their shallow nature or worst. But please, no bloody D at the table talk. :)
 

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/10/2010 1:55 AM (GMT -7)   
There is no need to ever feel embarassed that you have this disease or a need to hide it but there is also no need to advertise it. All too often I hear people complain and moan about their lives with one another and soon it becomes a my life is worse than your life contest. Then it becomes a my illness is worse than your illness conversation. I think you all know where i am going and have been with people that start these conversations with no idea of what this disease really consists of.
When asked about the disease I am more than happy to talk about it and depending on the person I am speaking with even go into different levels of details. One of the most important things for me is to never come across as looking for sympathy or complaining. My focus is purely in educating in a manner that helps others understand without being scared off by the gory details. Why on earth would someone need to know that I have 15 plus bowel movements a day or skin tags? There are many details that come acrossed less as them being immature but more as too much info. Start with generalized descriptions and then depending on your relationship with that person you may be able to go into a little more in depth details.
People are almost always grossed out or bothered by bathroom talk or medical conditions below the belt. Plus I like to keep some level of personal health matters so that people don't just think as me as the guy with the crapping disease. If at all possible I would love for many people to not know that I am sick so that they are not focused on it and don't get weirded out. Many people just do not understand illnesses and tend to segregate themselves from people that are sick. They feel uncomfortable about what to talk about or how to act around you, so they just stop coming around.
As for those in relationships I really encourage you to remember that even though we may be extremely sick or in pain, our spouses and partners are experiencing Crohn's disease too. They are just as much involved in many ways as we are with this disease because their lives are not the same as if they were with a healthy person. This is not always a bad thing for those other people because it can help bring you closer together and form a bond that many people will never experience. It can also be extremely hard due to the financial obligations and pressure that this disease can put on a relationship. We need to not forget their needs and feelings too. Sometimes we become desensitized to our Crohn's talk and need to remember that others don't usually talk as openly about the subjects that we do.

Post Edited (tsitodawg) : 8/10/2010 2:58:19 AM (GMT-6)


Lori M
Regular Member


Date Joined Aug 2010
Total Posts : 65
   Posted 8/10/2010 7:34 AM (GMT -7)   
Excellent post, tsitodawg. Especially the part about our relationships. I'm very new to CD and have been pretty sick over the last 3 months or so, and I've found that it's so easy to get all wrapped up in your disease and forget about how your partner is dealing. My hubby and I had a long conversation the other night about this very issue. He really opened my eyes to the fact that this disease is affecting him as much as it's affecting me (course in a different way). He said that for the better part of the last 3 months he's been walking on egg shells, not sure what to do, trying to do whatever I need him to do. But he feels isolated and helpless. He asks how I feel and I say I feel like crap. What is he supposed to do with that? I felt completely selfish after the conversation. Like because I'm sick, the world must revolve around me! As I said, it was a very eye-opening conversation and what I took away from it was the fact that I need to remember that he's in this too. Ask him about his day....focus on him for a change. Not everything has to be about me!
46 years old. Diagnosed with Crohn's August 3, 2010
Started predinose on 8/4/10 for 4 weeks (40 mg 1st week, 30 mg 2nd week, 20 mg 3rd week and 10 mg final week)
Asacol 1200 mg 3 times a day

Glori
Regular Member


Date Joined Jul 2010
Total Posts : 42
   Posted 8/10/2010 7:48 AM (GMT -7)   
I was married (it was a rapidly deteriorating relationship, but the fact remains that I was married) when I was first diagnosed. I was trying to help my ex-husband understand what I was feeling, but didn't want it to be all about the disease, so I limited myself to no more than 5-10 minutes of discussion about the disease in the morning and in the evening. Because the relationship was deteriorating, I felt that there were many other issues that needed to be up for discussion other than my disease. That would be true for a good relationship, too.

If I discuss the disease with friends, I try to keep it light, and inject humor when possible. I don't want (and quite frankly, can't) to hide the disease from close friends, but I also don't want the disease to monopolize the relationship. I am so lucky to have such great friends who can laugh with me about the disease and can look beyond it to find out who I really am.

Glori

Wilder
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 8/10/2010 10:08 AM (GMT -7)   
Ivy6- you are absolutely right. I am speaking about how to communicate our abilities and limitations, pain & fatigue levels, how we're feeling emotionally, etc. Not specifics about the disease itself.

There are just times when this feels like such a burden to carry alone and it helps me to share it. Other times, like this past weekend, I tried to let a couple buddies know I was going to be taking some medicine that would likely make me very sick for a couple days, and would they mind checking up on me- no dice. Its like everyone is fine to be your friend on your good days, but want to sweep it under the rug when you are having a bad one. And I don't walk around with a "woe is me" attitude all the time either. I generally consider myself a pretty positive, upbeat person.
Wilder

Current meds: Cimzia, 6-MP, Prednisone, Lexapro, Ativan, Fosomax, [/color]

Supplements: Multivitamin, calcium, Vit. D, B-12, probiotics, fish oil

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/10/2010 4:06 PM (GMT -7)   
You may be expecting too much from your friends. It is a rare and good friend that will check up on you in the way you expressed. This is not always because they are not good people but for a variety of reasons.

What are you taking that would require people to check up on you? You may be leaning on them too hard.
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/10/2010 4:17 PM (GMT -7)   
Sadly, I think that healthy people can be pretty clueless about that sort of thing, Wilder. I hope you know you can always check in with us, here?

If you are feeling vulnerable living alone, it may be possible for you to get some sort of alert button that you can press if you get yourself into strife and need help. I don't know what services are offered where you live, but here the Red Cross and St John's also have a service where volunteers call an isolated, ill or shut-in person to check that they are all right, and raise the alarm if they can't find you.

I find that the arthritis community is better at publishing things about constructive communication than we are. Here's one article to get you started, but I have a book recommendation for you too, which I'll try to post later.

http://health.howstuffworks.com/diseases-conditions/arthritis/overview/how-to-adjust-to-life-with-arthritis3.htm

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 7:30 AM (GMT -7)
There are a total of 2,734,622 posts in 301,227 threads.
View Active Threads


Who's Online
This forum has 151346 registered members. Please welcome our newest member, heelm007.
315 Guest(s), 13 Registered Member(s) are currently online.  Details
alephnull, JayMot, Psilociraptor, JNF, Paul's Brother, Tickled6, FSLondon, pmm73, blksteeda, Traveler, pitmom, Snarf, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer