How do you "talk" about Crohns with your family/children?

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Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 12/23/2009 8:16 AM (GMT -6)   
My children are adults now. When I was DX they were in Highschool. They are home  for the Holidays, it always amazes me how time heals. It seems I always have to remind them of the "speed" I'm on...Crohns speed. They bring me gifts of sweet, with nuts, and I feel as if nobody in my family remembers what I can and can't have.  I don't want to constantly be bringing up Crohns and at the same time I "WANT" to depseratley be that old person I was. Sometimes, I think they don't even know what Crohns is...or how it effects my body. Is that rude, denial or lack of communication? idk???
I'm usually tired, low of energy and don't know if I should always bring up my daily rituals such as my many bathroom visits, diet, and just feeling resonable crummmy. They'll  say " Why are you so unhappy, MOm" ??? I'm exhausted at the moment and a feel as if I could sleep for 2 days straight and the Holidays aren't even here yet!  How does everyone explain to their children/family that they are ill. Like chronically. It doesn't go away! I feel my expectations are so high as a Mother and also, wishing I could do the things I used to...

 "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!

Post Edited (flowery) : 12/24/2009 12:46:53 AM (GMT-7)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 12/23/2009 8:58 AM (GMT -6)   
Sometimes no matter what you say, they never will get it. For me it took an emergency resection for them to realize the severity of the disease. But honestly, no matter how much you explain, sometimes they just don't get it. What sucks is for most of us, we look ok on the outside, and people can't see the pain we are suffering with inside. 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"*

kia c.
Regular Member

Date Joined Jun 2004
Total Posts : 111
   Posted 12/23/2009 9:20 AM (GMT -6)   

God love my husband.  He sits in the bathroom with me when I'm doubled over in pain.  He cleans up after me when I pass out from the explosive diahrrea hits.  But when I say I can't eat salad because it's coming out of me like a salad shooter ... he challenges me and says I don't know what I'm talking about.  Coworkers keep complimenting me on how "good" I look these days 'cause of the weight loss.  They don't see the dozen trips to the bathroom everyday.  I think we ALL don't understand other peoples illnesses.  I don't know how you "fix" it.  Accept the sweets ... and bring them into the office and hope co-workers will enjoy them?  Throw them out?  I don't know.  Hugs ...



Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 12/23/2009 9:58 AM (GMT -6)   
Flowery, I don't know how to answer your question, I just want you to know I feel the same way you do, and I'm sure many others do too. Only, I'm the daughter, the youngest, and NO ONE understands in my family...especially my mom which almost breaks my heart. Only, how can I be mad at them for not understanding, when I don't even understand it half the time either. 
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.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 12/23/2009 4:06 PM (GMT -6)   
Thank you and REGIFT/bring it to the office. And if they confront you about it then say well darling it was a lovely gift, but it was like giving taffy to the man with no teeth (like in that avert), so I pasted your gift on to someone who can really enjoy it without the damage it causes me. It makes you feel good to share the gifts of your children.

It is not that you are unhappy (or maybe it is, did you know that it is not good protocol to dx someone with a mental condition when they have a physical illness, because of how much it is just tiresome to have such a constant physical drain. Like when they have the stomach flu how much do they feel like doing? I think they should be complimenting you on your strenght, stamina, and just shear grit.

Sometimes people will just never get it, even if they become chronically ill themselves. Sometimes you have to accept the charater short falls of other human beings, because their are not doing it out of malicinious (or at least you hope they are not) they are doing it out of wishful thinking of hoping for you to be well.
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…

Regular Member

Date Joined Sep 2006
Total Posts : 171
   Posted 12/23/2009 7:37 PM (GMT -6)   
I don't know if it's the right thing to do or not but I have referred people to this forum in the past so they could learn what Crohn's is. I really can't think of another way for ppl to understand what it's like.


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 12/23/2009 8:46 PM (GMT -6)   
I completely understand your frustrations.
I am 28 and was diagnosed at 18. I was pretty much an adult when I got sick so my parents never had to try very hard to understand much. Now I live 1,000 miles from them, and when they come to visit I get so frustrated. I have been trying to tell my mom over the phone about my latest flare (6 months worth of weight loss, steroids, and liquid diet) and she just changes the subject. It's almost as if she doesn't know how to deal with it or what to say...I know it's hard for her, but it feels like she's downplaying the severity of this. Just recently my family was visiting and my grandma even said, "You're so skinny!" and I said, "yeah, I've been sick but I'm getting better. I'm starting to gain it back." Then like 5 minutes later she commented, "you must be so skinny becuase you are so active." WHAT? Did you JUST hear me? Did you forget that I'll never be well? It's so frustrating.
I try to rely on my friends and some of them try hard to understand, but as somone else said, how can I expect them to understand something I can't even figure out? My best friend said he'd be here for me no matter what and said I wouldn't have to deal with this flare alone, but then 4 months into it he basically blew up at me and said, "i'm not your mom, I'm not your guardian...this is too much for one person to take." and basically told me he needed a break from me because he didn't want to deal with me being sick and all of the depression that goes with it.
I've given up trying to find a relationship becuase I just don't believe that I can force this on anyone else. People try to understand but they just never will.
Yes, flowery, it is incredibly frustrating...sometimes like screaming at a brick wall. 
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, Rowasa Enemas.
Currently on: 30mg Prednisone (Tapering from 60), 100mg Imuran, Align, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention). 

Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 12/24/2009 2:45 AM (GMT -6)   
Yes, it is depressing I saposse...this neverending battle of Crohns. When I wake in the morning I just don't have any zap for getting up and starting the whole routine again. I've had an emergency resection, but my family just goes on believing I'm going to be healed. I actually have a sister who has told me if I believed in healing or Jesus more I WOULD be healed! You stop talking about it (which I basically have) they think your fine! I think this web-site helps sooo much! I can so relate to the people saying "Hey you look great...loosing weight?" ha..and I'm like no! just feeling crappy actually. It's hard not to become sinicale. And then the next day someone telling me my face is fat....(because of pred) I had a lady at work ask me why I took the "good food" out of my meal and pushed it away! Like I should be thankful...(wish I had a choice)!
One thing for sure, I sure don't assume what shoes people walk in anymore! One never truly knows.
I know my family desires the best for me but, I too feel like I'm yelling at a brickwall!
 "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 Apr 2006
Total Posts : 192
   Posted 12/24/2009 10:47 AM (GMT -6)   
I can soo relate to this. Sorry I"m not active on this forum, but linger. I soooo understand everyone here. I hate it soo much that no one understands, yet I'm so grateful that they don't cause you have to live it to understand. I don't even want to go to see my family on Christmas. It's more than just the food, its the constant judgement and questioning and same questions year after year, then no words til the next "season". I just don't think I'm going to participate anymore. The only one in my family who understands and really tries is my grandmother. She lives with me and sees what I go through on a daily basis. She also is allergic to gluten so she understands all the food issues. I guess one thing about this DD is that you start to see who really cares about you and how much care and concern each person needs whether in your family or those out there who have no one and are lonely. I guess I've gotten to the point that just because people are in my blood "family" outsiders can become more of your family than you could ever imagine and show more love and concern than those who you would expect to. So just because you don't see it in your own family there are people out there who will show you how much they care, maybe not today but one day.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 12/25/2009 5:18 AM (GMT -6)   
It really depends on which side of the family I'm dealing with. My mother's side is extremely supportive, and they make an effort to understand what's going on in my life. My father's side is half and half, and I tend not to communicate with those who completely deny or ignore the fact that anything is wrong. If we're forced to speak then I try and make it as clear as possible, but there's no getting through someone who refuses to leave the stage of denial...I'm hoping that time helps in healing this kind of thing, but until then we all have each other at least. My cousins (father's nieces that is) are angels though. I wish more people were like them.

I'm sorry to hear so many of us have the negative deniers in our lives though. Very sad...It really does cause a lot of meaningless stress.
Diagnosed with Crohn's in May of 2008.
Currently taking for Crohn's: Pentasa, omeprazole, Loestrin birth control, and Align probiotics.
Also taking Elmiron and RE Methylphen for Interstitial Cystitis.
"He who has a why to live for can bear with almost any how."

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