Tips for better supporting people with IBD

Crohn's Disease Forum

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David

David

Co-Founder
Joined
Feb 13, 2006
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13,705
Location
Naples, Florida
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 :)
 
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)
 
Thanks for this thread. As a caregiver, sometimes its hard to know how best to offer support... :hug: I'm sure I'll find this helpful and learn a lot! :ghug:
 
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.
 
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.:ghug:
 
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).
 
Buy them health insurance/give them lots of money so they don't have to deal with the stress of working. :p
 
Make rice for them. I hate making rice, but it is a staple of my diet. I want someone to make it for me.
 
"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
 
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.
 
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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.
 
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.
 
I get that all the time Lorie when I flare..it's something I ate. AUGH!!! NO!! it's nooootttt....it'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. :angry-banghead::angry-banghead: 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.
 
Another tip

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.
 
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!!
xxx
 
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
 
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".
 
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.
 
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. :)
 
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.
 
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
 
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.
 
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.
Rgds
Grant
 
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. :hug:

Your service does not go unnoticed. :)
 
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!!
xxxxxx
 
shazz said:
I hate it when I am asked how I am doing and I say not so good and I get 'Well you look ok'
Click to expand...

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.
 
The more ill I get the healthier I look. I know, I am very strange!!
My skin is positively glowing at the moment. Mind you I think thats from all the allergic reactions from all the meds they keep pumping into me.
Plus I am fat, so a lot of people think she is fat must be eating well. lol
 
It is 1:05 AM, 03-13-2012. I am glad I found this website. I am sure I will be learning a lot specially how to support my husband, who suffers from Chron's since he was 12. The disease was into remission, but since last July he has been on ongoing flare ups, until on Feb 28 he finally accepted to go to the hospital. Small bowel obstruction. NG tub. Prednisone. He is back at home. But I need guidance and support too. He says he is so blessed to have me that I have been very supportive, though sometimes I do NOT KNOW what to do, what to say. I never heard of this disease until I met him, so I am entering in a new area in which I do not want to be ignorant. I want to support him as much as I can. One thing I have learned to do when he has those painful pressures: hold his hand (if I am there) sometimes he calls me when I am at work. I let him know I am praying for him and I love him.
 
When we are at a family/friend function, and you have lots of ymmy food. If I choose not to eat anything... .LEAVE ME ALONE!!!!!

I hate it when I am made to feel guilty that I am not eating the nice food you spent time preparing for everyone. Please stop putting pressure on me to 'just try a little bit,' or 'well this is good for you, it will give you energy,' or my personal favorite (from my mum) 'why are you making an issue out of this just eat something.'........ Really my stomach is hurting, and I can't! I know you spent alot of time on this food, that is not lost on me, but right now I am hurting.

If you offer us food and we refuse. Stop there... don't push us.
 
I'll be taking notes. Hahaha. Sometimes I feel like I don't know what to say sometimes! My bro has Crohn's (and is on this forum too. hey Jake. :p) so I hope I can use this forum to know how to better support him
 
Every post was awsome! I am new to this forum...........thank God I found people like you that are like me!!!!!!!!! I thought I was alone in this battle. So glad to find peeps that are on the same page! Hugs to all of you! I found a place in this world
 
JohnL said:
I'll be taking notes. Hahaha. Sometimes I feel like I don't know what to say sometimes! My bro has Crohn's (and is on this forum too. hey Jake. :p) so I hope I can use this forum to know how to better support him
Click to expand...

Welcome to you, and Camie. :dance:

I think you are a good brother to get on here, and find for yourself how to support your brother. It takes a lot of heart to learn about your brother's condition, rather than making judgements based on ideas, or stories from people that have no idea what IBD is all about.
 
Slim Johnson said:
Welcome to you, and Camie. :dance:

I think you are a good brother to get on here, and find for yourself how to support your brother. It takes a lot of heart to learn about your brother's condition, rather than making judgements based on ideas, or stories from people that have no idea what IBD is all about.
Click to expand...

Yeah, we're pretty close, and sometimes I feel like we have so many misunderstandings you know? So that's what I came here for. Learning about it, its actually really interesting stuff. I'm just really sorry he has to deal with it all...

He might get a liiiiiiittle mad at me for being on the same turf but oh well. :p
 
Newlymarriedtocrohns, I've been married to Crohn's for 20 years and I still find myself occasionally asking "How are you feeling" but for the most part I can tell when a flare is coming on or if he is not feeling well. He is usually trying extra hard to be nice :wink: that's when I know he really feels like crap and will try and take over and do everything so he can just rest. He usually just wants to be left alone when he is not feeling well so I try and take the kids out for an activity so he can have quiet.
Now I'm trying to figure out my son who was dx'd 3 years ago, after the first year we had to agree not to nag as long as he promised to tell us when he was not feeling well. Well I still nag (I'm his mother after all) but I think we have a pretty good balance and he will let me know when he is not feeling well.
 
I'm still learning how to support my partner best. I never ask how he's feeling I do like to know how doctor's appointments went and don't always get a straight answer as he isn't a talker. I also know that having IBD can make you feel unattractive and I let him know regularly how sexy I find him. We also make jokes about the gas as it can surface at the funniest times. My problem with the food is with not spending enough time together I only know about tomatoes and any veggies or fruit with seeds. He eats almost everything else and I'm not sure he even knows what causes a flare as I don't think for him that it's the same all the time. I also try never to get to upset if plans get canceled I feel bad that he's sick but of course still wish we could see each other lol. I'm glad I found this site and know I can get more info and advice to help me support him better.
 
Hey,

My fiancé and I (he's on here, I'm not stalking/checking on you baby!) have been together 8 years, we met aged 18 (engaged now for 5 years) he's been in a 'constant' state of flair for 4 years now, he's not really able to leave the house let alone work. The Drs told us for 2.5 years it's Ibs & all in his head. I have always tried to fight in his corner but I started to believe them after a while (well for all of about 1 month, until his symptoms changed) we then battled for another repeat colonoscopy & it turns out he had CD. I feel so guilty for doubting him for a few weeks :(

The consultant thinks its CD & IBS.

We've been through a lot & I've said some things I look back on & think 'WTF?! What was I thinking/I'm an evil cow'/how could I pressure him' however on the whole I think we cope well & we have a very open communication about how he is feeling, gas, symptom changes, various states of well...poop & always try to make light of the situation.
If he does feel up to leaving the house I have a toilet finder app on my phone & I try not to eat in front of him.

His painkillers make him very dopey ATM, he is flairing very badly & his gout has cropped up.

Has anyone got any tips in how to get him out of a 'funk' (he can switch to down very quickly even in front of company) or to stop sounding like I'm constantly nagging at him to eat (he's lost over 3st in 12 weeks) or even just take some pressure off him?
 
When they're feeling sick and don't want to do much watch their favorite movies or tv shows, videogames too (if they're into that).
If you know they're cheating on their diet, instead of lecturing them or getting mad, get something to help them if possible. For example: my fiance is lactose intolerant and hos favorite food is pizza. To compromise i make him pizza with lactose free cheese or buy him lactaid pills so it won't make him as sick.
Don't force them to talk about anythin they don't want to. Just remind them you're there for them no matter what and let them come to you when they're ready.
 
dont tell me to get a job after ive been on disability the last 6 years. my brother and dad have no idea. i should be as strong as them. need hugs but people around me dont show affection including my husband. noone wants to hear me complain. parents and x husband believe everyone with crohns has a normal life because ccfa says so. i have pmdd too. double wammy. and very lonely hospital stays. feel very unimportant.
 
Try not to over fuss when your loved one is sick, sometimes it's easy to keep asking 'are you ok?' 'do you need help with that ' but it's not always the best way. Let them know you are there to help with whatever they need but try not to over crowd them. It can be very difficult mentally when made to feel like you cannot perform simple tasks for any reason and they could get frustrated and aim it at you accidentaly
 
Don't ask a Crohnie after they leave a job due to health issues"WHAT ARE YOU GOING TO DO WITH YOURSELF SINCE YOU QUIT?" Um, let's see.....UM, TRY AND GET MY CROHN'S UNDER CONTROL & TO BE PAIN FREE AFTER SEVERAL MONTHS OF ER VISITS.

I left my job due to my CD getting worse to the point where I had to make a very tough choice (I really loved my job & it broke my heart to make this decision).

Oh, and don't put us down by saying we're lazy. If we are in a world of hurt, YES, WE ARE GOING TO LIE DOWN TO REST & TAKE PAIN MEDICATION. if people don't understand they can just ___________________(fill in the blank)
 
Hi David :) I certainly could feel the good intention behind what you have written..But i have a different take on this. While i do fully agree that its just not a mental thing but i feel the disese gets even more strength psychologically when it starts playing on our mind...Why give extra importance to it? We can treat it with a smile..:) Yes its very awkward to speak about it as nobody is comfortable about speaking things like bowel movements, loose stoos etc but big deal !! Our passing stool is same as our brushing, bathing etc. Its a body part that God has given to all...If people feel like joking let them go to hell !!! Its our body and our problem !! Yes i absolutely do agree to your point that nobody should expect us to be happy or in jovial mood always but every human being is like that. People may agree with my point of view or disagree. But i do appreciate the fact that i am in this forum :)
 
Adding to gutlesswonder's point.. This is something that really winds me up actually, do not call us lucky because we don't work/study!

There are many of us who would do anything to be in the position to be healthy enough to work, even just for a few months or years.

Leaving uni and not returning is the hardest thing I've ever had to do, but the admissions doctor said no. That's not lucky.
 
valleysangel92 said:
Adding to gutlesswonder's point.. This is something that really winds me up actually, do not call us lucky because we don't work/study!

There are many of us who would do anything to be in the position to be healthy enough to work, even just for a few months or years.

Leaving uni and not returning is the hardest thing I've ever had to do, but the admissions doctor said no. That's not lucky.
Click to expand...

I hear that! I have FMLA to protect my job if I have intermittent absences and people at work say I’m “lucky” I get to leave early or come in late. I usually just make an uncomfortable joke like “I’ll gladly trade places with you and stay at work if you’d like to be in constant physical agony” (I’ve always had a dark sense of humor so I can get away with these jokes) my boyfriend has also occasionally insinuated that I abuse the fact that I can miss work and I take of days that I could have pushed through. People just don’t understand, they might try though and I’ve seen a change since I became more open about it and started educating family, friends, and coworkers on what it’s really like for me day to day. Just know you aren’t alone, I would give anything to go back to my “normal” life that was taken from me 3 years ago after I was diagnosed with Crohn’s disease. <3 stay strong
 

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