Are you open about your Crohn's?

New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

KEL1318
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 3/31/2010 9:13 AM (GMT -7)   
I'm just wondering how other people handle going through everything.

I'm a high school teacher and when I was dx'd in 07, I was hospitalized for a month. I really had no other choice but to explain it to my students. With this current flare, I have been out of work for a week, and will return tomorrow to many questions. I don't really care about answering them, better that people understand, I guess.

I do have a co-worker who has UC and is very hush hush about what he goes through. Definitely personal preference, I was just wondering how others deal with it at work.

Have a great day!

smilewinkgrin
Dx: Crohn's in 2007 (after 10 yrs of symptoms)
Laporoscopy 10/07, Pentasa, Entocort, Prednisone (not working)
6mp - Nov/07-Nov/08 (worked great, but went off the meds in hopes of conceiving-no luck)
Remission until 2/10...Major Flare 3/10
Meds:Prednisone taper and back on the 6mp, Vit.D, Culturelle, Folic Acid, Pre-Natal Vitamin


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 3/31/2010 9:25 AM (GMT -7)   
I am usually pretty open about it.  I don't just come out and talk about it but if someone questions why I go to the bathroom so much, I just explain it.  I don't care who knows and it doesn't bother me.  I actually like educating people about the disease.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2039
   Posted 3/31/2010 9:31 AM (GMT -7)   
I guess it's a matter of personal preference, tact, and situation.  I don't hide my illness, mainly because I obviously am debilitated and I would rather people know why.  It also helps put a personal face on the disease.  I just don't share the TMI stuff; no one wants to hear that!  Well, maybe other Crohnies, but no one else. smile
50 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.  Severe depression past two years.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/31/2010 10:06 AM (GMT -7)   
I too do not hide my Crohns. I just tell people I have a chronic inflammatory bowel disease that likes to flare now and again, and this is one of those times. Hope that helps. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/31/2010 11:17 AM (GMT -7)   
I am somewhat private about it. My friends know I have it; but for those that don't know, I spare them the details. I feel there is better conversation to be had at most times than talking about my bowels and stomach problems lol.
28 Y/O Male DXed Crohns in 2000.
Fistulotomy/Fistulectomy 2001
Been on many meds including Remicade.
Asacol and Pentasa on a when-needed basis as of recent
Current regimen: Diet and Exercise.


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/31/2010 1:11 PM (GMT -7)   
I have very medical friends (a few are xray techs, some have parents who are doctors, etc.) so I'm open about it. In my group of friends there are 2 of us with CD. Everyone knows (probably too much because of medical background) what CD entails. It actually helps to have someone very close that I can vent to. (Strangely also, both of us have had pulmonary emboli within about a year of each other, so we lean on each other for advice and experiences)

Also, working in the medical field, it's hard to "hide" what's going on because my coworkers always talked to each other about medical stuff, whether it was about us or others. I also had all testing, admissions, and surgery at the hospital I worked at so that adds to the not being able to hide things.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/31/2010 1:21 PM (GMT -7)   
I am too sick to really hide it, but I generally tell people that is like the worse stomach flu you have had in your life and that the disease ulcerates my intestine so I lose some blood too.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 3/31/2010 2:54 PM (GMT -7)   
I just say it's my Crohn's acting up and if they want to know...I'll educated them! Other than that, I don't advertise, but I don't hide either.

Now I have an ostomy so if the conversation gets deeper and they want to know why I function better, I'll share, but I don't advertise that either:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/31/2010 4:16 PM (GMT -7)   
When I was diagnosed I was 18 and I was embarrassed about it. I went through the first few years of college feeling isolated because of that. I slowly realized that I am much happier when I am open about it, becuase people understand me better.

Now I am to the point where I'll share it with just about anyone. I like educating people about it, and also I figure if I have to live it, they can deal with hearing about it. I just had surgery and now have an ostomy, and I feel the same way about that. It just helps me feel more understood and I don't have to hide things.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 20mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/31/2010 4:49 PM (GMT -7)   
I'm usually very open, but I too was a teacher...at times, some of the administrators(alas, they had a friend or two with the disease, so new what to expect) had some issues with the illness, I think it was always in the back of their minds, though other teachers missed more work due to children, other family issues, and other things; it was brought up that they were "unsure" of my health...I don't think they liked to hear that one ended up in a hospital, but even if I only missed 2 days of work...I went back to work the day after discharge (kinda stupid in retrospect)

I guess what I am trying to say...just play it by ear...and hoping you don't have to go back to hospital for a long long time...
"The earth laughs in flowers"

Post Edited (Becoming undone) : 3/31/2010 7:49:14 PM (GMT-6)


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 3/31/2010 4:51 PM (GMT -7)   
I usually tell people its a digestive disorder . I dont really get into it unless someone is really interested. And even then i leave some out its embarrassing.I tell them to pull it of the web too. When i was younger i was really embarrassed of it. Now that I'm older I'm just tired and dont care as much. Only in the romance department I dont know how to go about it with a mate or potential close friend if you know what i mean. Hope it helps.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/31/2010 5:52 PM (GMT -7)   
I am very open about it, but I'll be honest - my main symptoms are not typical embarassing ones. They are mostly pain and other manifestations. Never diarrhea.

I'm an open personality, anyways, but I also think it helps people put a face to the disease, it opens up discussions regarding it, and raises awareness. I've also learned there are SO many people with it!

Living with a chronic disease has become who I am. It affects my daily life, the decisions I make, and my lifestyle choices. It'd be too hard to hide it.

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 3/31/2010 6:49 PM (GMT -7)   
Everyone in the office knows I have it, but was caught by my VP who doesn't know I have. We were eating lunch yesterday and I ordered this really big sandwich. He asked how I stay so skinny and I said I guess its luck of the draw. While just about everyone who knows I have it kinda stared at me. It's not that I care he knows, just didn't want to get into a conversation on what crohn's is, etc.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 4x/day, 500mg Vitamin C, 1,000 I/U Vitamin D3, 1 Florastor 2x/day, 1 Nature's Way Primadophilus Reuteri at bed time.
----------------------------------------------
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/1/2010 6:12 AM (GMT -7)   
Hi, At work the people that need to know, know all the ins and outs of my condition. When I was off last year for 6 months some off the staff that were really concerned and genuine and didn't know what was wrong with me at the time were very supportive and asked me alot of questions about crohns which was fine, but some of the ones that just wanted a bit of gossip I just told them that I had astomach compaint that needed sorted, I have been at this job for 9 years and have sussed out the genuine to the plain nosey!!!!!!! Bev x wink
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/1/2010 8:58 AM (GMT -7)   
I am open about it. I don't run up to perfect strangers of course smilewinkgrin ..but i wanted my coworkers to be aware and they have been most understanding. Of curse I had to tell them something as I lost so much weight so quickly. I would rather people know ihave crohns that think I have an eating disorder!!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/1/2010 9:25 AM (GMT -7)   
Speaking of strangers one time I had one of those moments that I had to throw up with very little warning and one of the people who was there was worried cause they were on chemo, and thought I was contagious.
I have to admit my explanination was probably not the best way to handle that.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 4/1/2010 9:57 AM (GMT -7)   
I am very open about my CD, always have been and always will be.  I tend to be like that in most things in my life.  It helps me if people know I have CD, they make allowances for me.  My partner has UC and is very private about it. He is currently in a flare so I dont know how well it is hidden.
Diagnosed 2005.  41 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/1/2010 5:10 PM (GMT -7)   
I'm not. Only to very close friends, my Mom, & employers or Co-workers who NEED to know. ( which is darn few. You can never be too sure what gets back to your insurance Co. these days!).
But then, I am a private person.

Matthew
Except here amongst my support group. LOL

oldcrohnie
Regular Member


Date Joined Feb 2007
Total Posts : 123
   Posted 4/1/2010 5:25 PM (GMT -7)   
For the first 25 years, only my family and close friends really knew or cared about it. By my third resection, I had to tell people at work before I went in the hospital. They really think if you have surgery, wa-la - you are cured!
And of course, every woman wants "what you have" for a while so they, too, can be slim.
I now believe that I was wrong not to talk about my physical problems, not in depth, mind you, but just to maybe milk it a little because now, when age and this darn disease is taking it's toll on me, no one, not even my husband and kids, have much sympathy. I was always so independent and strong (and controlling, I admit), that it is difficult to now get the support I need. (It doesn't help that heredity causes me to look 10 years younger.) People believe that if you look good on the outside, you must be OK inside. I can be in a major flare, push myself to go to work, and have people say how glad they are that I'm over my illness! If they only knew what we know.
34+ years with Crohn's - 3 resections, abcess, fistula
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/1/2010 5:29 PM (GMT -7)   
I'm usually open about it with people I know... professors... Anywhere I spend a lot of time... If I pass out or something, it'd probably be useful for the paramedics to get that info from someone...

I used to be a little more reserved about it... But now.. Eh... //^_^\\'...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 4/1/2010 5:53 PM (GMT -7)   
I'm very open about it.  How could I not be when I missed almost 4 months of work last year because of surgeries and such.  Everyone is very understanding, and my general manager made flyers and hung them all over the building to get people to come to the Take Steps walk to support me....237 people out of 600 employees came...not bad!  I feel it's very important for those around me to know my condition incase something happens.  We are the voice of Crohns, people need to learn about it!!
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 4/1/2010 6:04 PM (GMT -7)   
when i was a horse jockey i was very hush about it, I did not want anybody think I was to sick to ride, when i retired from that after 18 years, i went to work 2005 in a casino and i got what is called on going medical so i could call in sick when needed up to 80 days a year, so people would ask what is crohns? and I said it is the worst diarreha you ever had times 10. all my family, from wife's family are really good with it

artist guy


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/2/2010 7:43 AM (GMT -7)   
I try to be open about it. I usually just say it in passing and if someone doesn't know what it is I'll say it's an inflammation of the intestines, it's an auto immune disease, etc.

I find it a little hard now that I am dating. I don't know who's going to be freaked out by it. It's always been pretty much a non issue since I'm generally usually in remission but now that it's out of remission and harder to hide (like when I'm in pain) it's a bit harder. I just had a guy just talking to me because of it when meanwhile we already had hung out around 6 times. I had a first date a week ago but then I was hospitalized so that would be a bit much for someone to handle after only one date.

My coworkers at my retail job I'm open with. I just tell my managers that there may be times when I'm in pain or that sometimes I may have to use the bathroom more frequently. But I wouldn't know how to tell at my other job, as a substitute teacher. I had to stop subbing the other week because I still don't have any painkillers so I wouldn't know what t do in the middle of a class and being in pain. And when I subbed once a few weeks ago there was no private bathrooms and it was very frustrating.
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 mg of Prednisone.  And I really really don't want to.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2010 8:02 AM (GMT -7)   
Very well said Mag102886! People need to be educated to what we live with. I just don't think Crohns is well known. The majority of my coworkers know. I have a coworker with Crohns, but the whole time he has worked for the company he has been in remission. He has actually only had one flare in his life. Lucky dog! In fact, most of those closest to me are able to read my face on those bad days, and always tell me if it gets too bad, you go home, okay. But for the most part I always go to work, unless its one of those days where I can't eat or hold anything down, then I will stay home.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/2/2010 5:10 PM (GMT -7)   
The fact that keep remissions for longer than in the past has also reduced the need to talk about it very much. A fact I'm usually grateful for!

Matthew
New Topic Post Reply Printable Version
27 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, December 04, 2016 5:40 PM (GMT -7)
There are a total of 2,732,777 posts in 301,055 threads.
View Active Threads


Who's Online
This forum has 151206 registered members. Please welcome our newest member, KrazyKorean5.
347 Guest(s), 12 Registered Member(s) are currently online.  Details
Bololidat, Ides, dacarte3, jennydancingfish, Lizzie70, mtm3461, Scaredy Cat, jared16, NiceCupOfTea, lymedriven, Broncofan18, NotQuiteAntonio


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