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


 
01-04-2012, 02:23 PM   #31
shazz
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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
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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!!
03-13-2012, 12:11 AM   #32
priscy777
 
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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.
06-07-2012, 11:00 AM   #33
woops!
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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.
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06-27-2012, 10:11 PM   #34
JohnL
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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
06-27-2012, 11:02 PM   #35
Camie
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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
06-28-2012, 04:32 AM   #36
Slim Johnson
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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
Welcome to you, and Camie.

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.
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06-28-2012, 11:25 AM   #37
JohnL
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Welcome to you, and Camie.

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.
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
12-03-2012, 03:33 PM   #38
newlymarriedtocrohns
 
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Thank you for the tips! Particularly thank you for the suggestions to reach out and show love in other ways, since repeating "How are you feeling?" does get annoying after awhile.
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12-03-2012, 04:08 PM   #39
Jmrogers4
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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 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.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-08-2013, 09:22 PM   #40
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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.
07-30-2013, 05:50 PM   #41
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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?
08-06-2013, 12:08 AM   #42
Kittenz999
 
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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.
08-06-2013, 12:09 AM   #43
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Also, don't assume they're a drug addict because they need pain medication on a regular basis.
09-26-2013, 09:11 AM   #44
plantluvr
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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.
09-26-2013, 09:21 PM   #45
valleysangel92
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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
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
09-26-2013, 09:37 PM   #46
GutlessWonder86
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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)
09-27-2013, 01:22 AM   #47
ASISH
 
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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
09-27-2013, 02:48 AM   #48
valleysangel92
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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.
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