Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Tips for better supporting people with IBD

09-01-2011, 05:55 PM   #1
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Join Date: Feb 2006
Location: Naples, Florida
Tips for better supporting people with IBD

1. Do not tell people with IBD that it is, "All in their head" or "Think positive thoughts and you'll feel better". IBD is a very real physical condition that affects someone emotionally, not the other way around.

2. Please understand that people with IBD may be downright unhappy at times. Please don't expect them to be happy all the time or get upset when they're not. It's may be hard to understand why someone with IBD isn't happy, but sometimes you have to let them feel that way so they don't have to fake their emotions.

3. People with IBD don't expect you to fix them. They tell you how they're feeling because they need to vent. Unless you know of a very specific and proven remedy, don't try to fix what they're saying, just listen and be compassionate. "That's terrible" and "That must be so awful" are often good responses.

Please add your own
It's good to be back
09-01-2011, 06:56 PM   #2
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Yes - if you just weren't such a stressed out person you wouldn't hold all this emotion inside you and then your bowels wouldn't hurt!!!

Yes - if you would just exercise and eat better this would all go away( look at your sister she exercises more than you and eats better and doesn't have to take any meds for her Crohn's - you just like to play the victim so your playing up how sick you are)

OOPs mini-vent there!

A good suggestion would be to ask what the person really can't eat when planning potlucks and make sure something is brought that they can eat.

Offer to help with errands or housecleaning as their energy levels may not be up to this at times - I had to hire a houskeeper just to save my sanity as I couldn't always keep the house the way I wanted to by myself(single mom of two unhelpful kids)
09-01-2011, 07:03 PM   #3
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Thanks for this thread. As a caregiver, sometimes its hard to know how best to offer support... I'm sure I'll find this helpful and learn a lot!
09-01-2011, 07:39 PM   #4
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Location: Florida
4. Don't criticize our food choices. Some of the things we eat might seem counterintuitive but we have to go with what we know won't cause us pain, which happens to vary from person to person.
Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
Vitamin D
SCD Multivitamin
09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!

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09-01-2011, 08:50 PM   #5
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Location: Pennsylvania

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Thanks for reading this thread and being there for your loved one with IBD. Support is so important.

IBD can be frustrating in many ways, both for the patient and for you. It seems like there are always more questions than answers. I wish it was all as easy as cause and effect, but it's likely that someone with IBD can be the "good patient" and still be punished by this terrible disease.

Unfortunately, I have found that there are no answers that fit across the board. The best investment you and your partner, family member, or friend can make is to learn how all this affects them personally. Everyone is different, and unlike many illnesses, the answers aren't always simple or interchangeable among patients. This might be frustrating, but worth the effort.

And, lastly, IBD has its share of "strange" problems, symptoms, tests, complications, procedures, medications, diets, etc. If it sounds scary or strange to you, it is definitely strange or scary to your loved one. Give a big hug and come here to the forum to take some of the strange and scary out of it. There's alot of experience and friendly folks to help.
09-02-2011, 08:24 PM   #6
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I just wanted to add; that we're not ALWAYS sick.
09-02-2011, 10:19 PM   #7
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We know that our partners do many things for us: you don't need to point out how much you do. We really wish we could do it ourselves. And yeah, we are not always sick (thanks, like that one).
09-02-2011, 11:17 PM   #8
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Location: Seattle, Washington

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Buy them health insurance/give them lots of money so they don't have to deal with the stress of working.
09-02-2011, 11:40 PM   #9
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Join Date: Mar 2010
Just be my friend. Be yourself. I'll keep up as best as I can.
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
09-06-2011, 06:37 AM   #10
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Make rice for them. I hate making rice, but it is a staple of my diet. I want someone to make it for me.
09-06-2011, 06:40 AM   #11
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I will make rice for you Ben...

Dusty. xxx
Mum of 2 kids with Crohn's.
10-06-2011, 05:20 AM   #12
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"Your always sick!" I get that one alot to. Uncaring family. Seems to be true. But the pain, stress, physical and emotional areas this disease affects can't be stopped by just one quick solution. Living in pain 24/7 can very negatively affect your life and your loved ones. Wish everyone well. X
10-06-2011, 10:11 AM   #13
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Take you lead from your loved one- they may not want to be asked often how they are, or want to talk about it alot. Or they might want to.

Plus: please be understanding when your loved one cancels plans again. Being sick means you can't do all you want. Most of the time you 100% WANT to go out and have a life, but when you are sick, you can't always do what you want, so it's a case of can't, now won't.
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!

Last edited by StarGirrrrl; 10-06-2011 at 04:26 PM.
10-06-2011, 05:08 PM   #14
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Understand that just because we may look fine on the outside, that may not be a reflection of what's happening on the inside. When I flare, I lose weight easily and some people seem to think that makes me look better. And looking better = healthy and awesome, in their minds anyway. But that's not the case.
10-08-2011, 02:41 PM   #15
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Sometimes we break our diets.. we're not superheroes. We're human. Please don't tell us it's our fault when we get sick.
10-08-2011, 11:21 PM   #16
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I get that all the time Lorie when I's something I ate. AUGH!!! NO!! it's's a hormonal flare most of the time and if I am ovulating and flaring then it's a true flare . I think after 25+ years with this illness I know my body by now. DUH!!

Makes me want to just either walk away or just smack them upside of the head as I am so sick and tired of repeating myself. Like I'm talking to a brick wall.

So glad my husband understands and can tell by how I'm acting. I'm so praying for menopause to kick in so the hormonal flares stop.
10-09-2011, 01:18 AM   #17
Slim Johnson
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Be patient with your loved one. They may not know what their day is going to be like in two hours, let alone in two weeks. Understand that the best laid plans fall through. I can't imagine one person here that would not do their best to have a good day, sometimes our best is not our personal best. These are two different bests. Both are equal.

LISTEN to the person you are dealing with. Most often, we are quite up front with our needs. For example: Noting where the bathrooms are in a public setting. Or not wanting to eat something because it is going to make our night horrible.
Don't assume my posts are about you. But if you are affected, that must mean you are guilty of something.
11-22-2011, 12:52 PM   #18
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A couple to just chuck in there . . . .
- don't abandon me when I say, I feel ill, talk . . . I'm ill, I don't have 2 heads!
- don't tell me my poo smells . . . really??
- don't say, 'oh, you missed a great meal', it's not very helpful
- don't try and pop over/want to meet up late at night, I need sleep . . .
- on a more positive note, show you care . . . . I like tea, cuddles and hot water bottles, oh and jelly babies are ALWAYS appropriate, lucozade however, is not!!
01-03-2012, 08:55 AM   #19
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This is more for the girlfriends/boyfriends of crohn's sufferers who you can't be with everyday. When my boyfriends having a flare up, and I know I wont be there for the worst of it, if I'm at college or I can't get to his house, I'll leave him little love notes around his room letting him know why I love him. Apparently a lot of his family/friends/ex's didn't understand that having a flare up can be emotionally draining too. Hope this helps xx
01-03-2012, 09:44 AM   #20
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Join Date: Feb 2011
Location: Balch Springs, Texas
even if some of us are always sick, nobody needs to point this out!! We know we are sick, so never ever say "You are always sick".
Crohns dx 1992
Bowel resection in 2000 and remission since then.
150mg Azathioprine maintenance dose
Ferrous Sulfate
Folic acid
Bentyl as needed
Lyrica x2 daily for pain
Norco as needed for pain
Ondansetron as needed for nausea
Miacalcin for the bones
That's a lot of stuff, but I feel good

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01-03-2012, 11:52 AM   #21
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A hug is always appreciated, and sometimes the little gestures mean the most, like coming home after work just wanting to sleep, to find that the washing up has been done already.
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
01-03-2012, 07:25 PM   #22
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I Looooovvvee hugs Rebecca. sometimes I wish folks would just give me more of those instead of criticizing that it's something I did or didn't do. (sigh)

That is why I collect teddy bears. I can always hug them, they are there for me, and they don't judge me.
01-03-2012, 11:11 PM   #23
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Have a sense of humor!! Laugh with us when we laugh at ourselves!
01-04-2012, 07:57 AM   #24
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Don't constantly ask us how we are feeling when we are in a flare - are you feeling better than yesterday/this morning? Sometimes its hard to know. We are still the person we used to be before we got ill and can still talk about normal things as well! If we don't get bombarded with questions we might be more likely to open up.
Diagnosed with CD March 08 at 17
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01-04-2012, 09:08 AM   #25
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I think a good support system is key for someone with crohns. My fiancee wanted to be able to help me after my surgery and I know she cares, but for her to show me, she learned how to change my packing for my abscess and now is a HUGE help with it. She never complains about changing it or being an inconvenience. It seems like something small but its so much better than having nurses come out everyday.

For me trust is a big thing too. I know I can tell her anything no matter how gross it is and she won't tell a single person or look at me differently because of it
01-04-2012, 11:44 AM   #26
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Don't say things like, "you really need to be eating more meat and veggies, no wonder your tired all the time".
argh I CAN'T eat those things! Leave me and my 100% starch diet alone.
Age 24
  • Diagnosed with Crohn's at age 7
  • Partial colectomy at age 18
  • Total colectomy with ileostomy at age 23
infliximab & azathioprine
01-04-2012, 11:52 AM   #27
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I honestly do believe it would be easier if we walked around with our bellys open to the elements so that people could see the outer scarring, stoma's etc. There really is a vast pool of ignorance. I saw someone recently who I class as a fair weather friend, he said I looked well & I explained I was on very strong meds but I still might need some more gut removed. He trundled off saying good you'll be cured then. I actually put him right on that. If we were in a wheelchair or something very visible I'm sure these things wouldn't be said by what are intelligent people.
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate, Humira & Inflectra.

Currently on:
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
01-04-2012, 12:46 PM   #28
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As KWalker mentioned above, those little things make the world of a difference.

During my last flare, after losing all my weight and energy, I was too weak to take care of myself. My mother showed up at my house just to visit, but ended up giving me a make-over. I felt beautiful again. But mostly, I felt cared about.

Your service does not go unnoticed.

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
01-04-2012, 01:25 PM   #29
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Location: Plymouth, United Kingdom
I hate it when I am asked how I am doing and I say not so good and I get 'Well you look ok'
Does my head in!!!
Also my hubby moans about not going out to do stuff as a family. I have been in a flare for 14 months, run a house, do the shopping, do housework, wash the clothes, cook the meals and do the school runs. By the time the weekend comes I am dead on my feet not looking to go walking across the moors!!
DX: September 2011 UC now possible Crohns Feb 2012
Have tried: Pentasa(all forms),Prednisolone,Aza, 6MP, Infliximab,colifoam,metronizadole
Allergic/sensitive to: Penicillin, medical adhesives, tramadol
Am on: Citalopram,warfarin, paracetamol
Ozzie was born on 2/2/12
23/2/12 p.e in both lungs.
Now the gallbladder decides to say hello!!
01-04-2012, 02:08 PM   #30
KWalker's Avatar
I hate it when I am asked how I am doing and I say not so good and I get 'Well you look ok'
I hate this one! Last term while at school I had to go explain to my teacher that I couldn't sit through a three hour exam because I had a big abscess on my ass and phsyically could not sit. Sure enough "You look okay". I had to get a doctors note so I didn't have to write it, and had surgery 3 days later. She sent me an email apologizing and asked how I was doing.

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