Explaining Crohn's to others....

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Regular Member

Date Joined Jan 2010
Total Posts : 24
   Posted 3/2/2010 9:36 PM (GMT -7)   
Ok so call it a new years resolution or a change of heart, whatever. But I have finally made the decision to be totally and completely honest with everyone in my life, especially those closest to me. In the past I've always beat around the bush, and lied, so that nobody would know about my health struggles. I know that it's nothing to be ashamed of or necissary to hide, but it is obviously embarrassing ( you all know that first hand). And i'm sure many of you have been in the same position one time or another.

So because Ive take this step and am being more open with people, I am having the moments of explaining basic history of my own struggle as well as what the disease is itself. As I am going through this process with close friends and co-workers etc. I'm finding that it's slot harder to explain to some than others than I thought it would be....

So I'm just wondering if anyone has suggestions for any type of situation that relates that could help me with this process. I've read that spoon story thing and I'm not sure if that is directly applicable to crohn's or not. But anyway, any and all help is much apreciated!!

artist guy
Veteran Member

Date Joined Jan 2010
Total Posts : 1373
   Posted 3/2/2010 10:00 PM (GMT -7)   
when I was a work and I would tell people I have crohns, they would say whats that? to keep it simple, I would say it's the worst diarreha you could possible have times 10. then people that have rock iron stomach would savvy a little bit.

artist guy

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 3/2/2010 10:11 PM (GMT -7)   
I say that my immune system gets confused, thinks my guts are bad and attacks them... That it leads to bleeding, abdominal pain, fatigue and low-grade temps (what I suffer with mostly). Then, if I need to simplify, I can say it's sort of like having the flu every day but with pain/bleeding.

Congrats on your new freedom. I don't go into details with everyone, but most people in my life (regularly) know i have Crohn's.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 3/2/2010 11:42 PM (GMT -7)   
I explain to people that it feels like having a stomach bug, not necessarily the throwing up part (for me, but for some CDers yes), but the D and the urgency part of it being like a stomach flu, since most people can relate to a gut bug (or food poisoning) it gives them a better understanding of how it makes us feel...I also simply tell them the symptoms are a result of having intestinal inflammation, and that seems to clarify things well for the people I tell.

bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Regular Member

Date Joined Jan 2010
Total Posts : 222
   Posted 3/3/2010 3:54 AM (GMT -7)   
when I explain to people that I have crohns, I usually tell them that effects the body by attacking the immune system, but to put it short for some people, i usually tell them that if I have to go to the loo , i have to go to the loo there and then if I disappear suddenly! A lot of people are aware of crohns now a days and I think I've been lucky so far that i haven't had to go into much detail.They might not know all the ins and outs of it but know it effects the intestines mainly.
I found that it is easier if people around you know that you have crohns, especially if you are having a bad day, it can make it better for you in the long run.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 3/3/2010 5:52 AM (GMT -7)   
When I'm really simplifying the explanation I just say "my immune system doesn't recognise my intestines and tries to kill it off every so often!" so that way if I ever have to explain my meds I can say its just keeps my immune system down so it can't go crazy and attack me. If I ever have to explain my arthritis I say the first line again but add "oh and I'm in the lucky 30% where it tries to attack your joints too!"
I keep it pretty light-hearted, if people want to hear more I'll tell them more but most are satisfied by that and it doesn't seem to freak anyone out.

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 3/3/2010 2:16 PM (GMT -7)   
I love that you are doing this!!  I am doing this too.  I am not embarrassed that I have Crohn's with the people (family, close riends, etc) so don't know why I am so hesitant to tell other people.  most of the time I will just say "i have stomach problems' and leave it at that.  i am sure some of these people wonder why I drop off the face of the earth for months at a time, come back super skinny with a fat face and still pretend like I have run of the mill IBS. :)  but it is hard to explain to people!  And no one WANTS Crohn's, we all want to be normal and healthy but I am kind of lookingat it now like it's a blessing - I am more aware of the plights of others and more compassionate and understanding to other's health problems (i think I was before too but now I can really understand the whole interrupting-your-life thing).  I think overall having a chronic illness is making me a better person, and I thank God for that.
I am trying to be more open and honest and just say "I have Crohn's".  Although for me it is easier to say I have Crohn' Colitis (which I do) instead of saying I have Crohn's Disease.  Saying the word disease still makes me feel not so good about my situation.  I am going to work on that too. :)  We did not ask for Crohn's, no one wants to have it, there is nothing we could have done to prevent it - so why is it hard to talk about?

33 yr old Female
Crohn's Colitis
DX 12/06
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 

Post Edited (wednesday2007) : 3/3/2010 2:24:44 PM (GMT-7)

Veteran Member

Date Joined Sep 2005
Total Posts : 675
   Posted 3/3/2010 2:22 PM (GMT -7)   
HA!!! Try being honest when your only symptoms are rectal!!! People did and did to find out what's wrong, exactly. sometimes I tell them the truth: I have a giant cut in my lower lower intestines and it feels like hell when I poop, and then it hurts all day after that! They cringe.

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.

Post Edited (snappy) : 3/3/2010 2:42:26 PM (GMT-7)

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 3/3/2010 2:40 PM (GMT -7)   
I am at the point where I will tell whoever. I seriously don't care. I didn't choose to have this, and it doesn't necessarily make me who I am, but when people know about it they understand me SO much better.

Usually whenever it comes up I'll just be like, "I have Crohn's Disease..." and if they don't know what that is, I'll say it's a disease where your immune system attacks your digestive tract, and mine happens to be in my colon which means I'm the queen of diarrhea city.

I am a very sarcastic person so I usually deliver the info in kind of a funny way, which makes people more comfortable with it. Usually I find that if I'M cool about it, THEY'RE cool about it. Everybody poops and everybody knows how awful it is to feel crappy, so they're usually understanding. The key is that if you're awkward about it, they will be too.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 

Veteran Member

Date Joined Oct 2009
Total Posts : 1070
   Posted 3/3/2010 5:49 PM (GMT -7)   
I am out of the closet too after many years. Most people know what Crohn's is. Those that don't I tell them to google it if my simple explanation doesn't suffice. With this incredible flare that I am coming out of I add periodic "blinding pain" day and night.

Regular Member

Date Joined Apr 2009
Total Posts : 55
   Posted 3/3/2010 7:34 PM (GMT -7)   
I was honest from the start. I tell people its like food poisioning from hell 24/7. It gets the point across without being too graphic

Regular Member

Date Joined Jan 2010
Total Posts : 24
   Posted 3/4/2010 12:14 AM (GMT -7)   
Wow that is all very great advice! I knew that I wasn't the only one in this situation by any means, but it is still just great to hear everyone elses specific examples. I know exactly what some of you have said about falling off the face of the planet and coming back looking like a different person, and it sucks but ya what are we to do. I am the type of person that believes each person is given their specific situation in life because they are the only ones who can deal with it the best. Although a lot of peoples situations are similar ie ours here on this forum.... But no ones is exactly the same ever, but it was given to you for a reason that's for sure. And I'm not even a religious person haha...

@ snappy i agree that being specific about everything is more of a struggle. There is still no way in hell I'm going to tell people that I have a fistula that starts inside and makes it's ugly way outside of my butt! But I think you will agree with the point I'm trying to make of just being open to the extent at least of telling people about the actual disease and not just saying ' oh I have stomachs issues...for the past 7 months....haha.

But again thanks to all for the input, I have taken a lot of great advice that I will use!

Regular Member

Date Joined Feb 2010
Total Posts : 75
   Posted 3/4/2010 5:14 AM (GMT -7)   
Hi , when people ask, I just tell them I have crohns, which means my body does not absorb fat very well. And if they ask more I just tell them crohns affects your digestive system from your mouth all the way to your butt. In your intestines it thickens them so nothing passes thru and your on your way to a blockage. any more I tell them to go online. Hope it helps.

Regular Member

Date Joined Jul 2008
Total Posts : 384
   Posted 3/4/2010 5:36 PM (GMT -7)   
When I tell people I have Crohn's and they don't know what it is, I ask them if they have ever heard of ulcerative colitis... (maybe because the name is a lot more descriptive they at least have an inkling that it's ulcers in the colon) most people say yes. I tell them it's kinda like that but it affects the whole digestive tract. Yeah, I know its alot more involved than that, but it's usually enough to head off additional questions.
I don't care if people know that I have it, I just don't like going into this whole detail about what it is. I'm not looking for sympathy, I don't want you looking at me differently because I have this disease, but if I say I have to go to the bathroom, get the hell out of my way!
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...
Currently just take a multivitamin, calcium, magnesium, and fish oil.

Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 3/4/2010 6:08 PM (GMT -7)   
I decided when I was first diagnosed I was gonna be super honest with everything! Especially with my (adult) children. My Mother was sick alot as a kid and she didn't tell us anything. I was gonna be different.  I was going to tell everyone when I didn't feel good and be completley honest even about daily symptoms.  Now, I'm not so sure I made the right decision. Maybe my Mother was smarter than I think.  Everybody knows we have symptoms every darn day! Well ...I sound like a broken record and any sane person doesn't want to hear about my Pain that they can't stop. It's hard! I don't blame them one bit!
Seems like it's all anybody wants to talk to me about.  I'm all for educating people on the disease and sticking up for it and all ..but I am more than Crohns! I don't want Crohns to be the only things that defines me. Some days it would just be nice to have a friend come up to me and say....what are your plans for the summer...or what book are you reading ..just random stuff.. Or even if they heard about the disease and educated themselves about it. I can seriously say I don't even think my Husband know's exactly what it is all about! Instead most people say..you look sick..I bet your Crohns has been really acting up in this weather ...yada yada..
I know I look like I have it..but I have to think about it 24/7... I don't need people to tell me what I look like! I just want to escape and not talk about it ALL the time!!! I just really appreciate it when people treat me like me ...not my disease. 
guess I had to vent...
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

Regular Member

Date Joined May 2009
Total Posts : 201
   Posted 3/4/2010 8:22 PM (GMT -7)   
When I don't feel well, or am having symptoms that keep me away from some activities (quiet places like church) I feel like I want to tell why.  But I too have rectal symptoms, I don't have D, I have pain, well, noise,....anyways lots of other gross stuff. 
When I tell people I have Crohns, those that know someone with it, all wonder why I'm not skinny.  Or as sick as "so & so".... I want to stay positive, and yet I find myself wanting to say how sick I am b/c I don't look sick.  But so many don't know what Crohn's is, they think IBS.  Honestly, rather not have to tell............ugh!
Diagnosed with CD 2006.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....

New Member

Date Joined Feb 2010
Total Posts : 8
   Posted 3/4/2010 9:36 PM (GMT -7)   
I don't say much at work about it because I don't want to be labeled as "sick".  When friends ask I tell them it is autoimmune and good bacteria that is usually in your belly..that my belly thinks the bacteria is bad and it attacks it.  Then I get lots of pain, ulcers and stomach upsets.  My pain is more sharp except when it is bathroom pain.  I also call my fistula's "tunnels of infection" in my body.  I don't love telling people about fistulas.  I do want to educate people on the disease.  One thing that really bothers me is when I am sick and someone says oh you must be stressed out.  My crohns does not seem to react to my stress so when I hear stress from them I feel as if they are not understanding that the disease is one that can flare at anytime..stress or no.  My weight losses and gains I try to explain as medicines and also that when I am loosing weight my body is not absorbing the food or nutrients and when I gain weight I am absorbing food again.  This is the way I do it but who knows...I am sure I will get better.  It has been about 1.5 years only since I learned I had this.
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