Getting family to understand Crohn's - Crohn's Disease / Ulcerative Colitis Message Board

ZoeGirl · 09-24-2007, 08:12 AM

Hello,
I've posted about my stomach pains/treatments long ago. I seem to have a better handle on things and less questions so I don't come by as often now.

I wonder though, if others with Crohn's or similar, also have problems getting family to understand the reality of the Crohn's flare ups? My husband says he understands, but often during a flare up he seems frustrated with me and asked the same questions like "isn't there a pill you can take for that?" Or "take a prilosec for that burning". For me, it's not heartburn, that burning/tearing feeling is in my intestines (feels like a gremlin trying to break out) and I found out way before I saw a gastro dr that Prilosec has no affect on it. And he knows that, yet he still suggests I take them (or other heartburn remedies) when I have a flare up - in a frustrated tone.

The only thing that seems to work for me in Entocort (steroid). I take it a couple months and I am better. It only takes 1-2 weeks to stop the pain and then I continue for a while. My flare ups aren't often, but the first week is usually pretty bad. I'm getting better at knowing when I am having a flare up before it gets too bad though.

I guess I'm looking for literature or suggestions on how to get him to understand. There are web sites and he assures me he's read them, yet I get the impression he still isn't getting it. I don't make up this pain and I feel that he thinks that. I also get the feeling he's comparing my pain to his chronic back pain. I sympathize with his pain (he takes pain medication regularly) but even without pain medication he can still function. Often a flare up will immobilize me. And I'm not saying mine is worse than his either, but it is definitely different.

Suggestions are welcome (and thanks for letting me vent a little).

miknan · 09-24-2007, 01:24 PM

I have the same problem with my family concerning my gastroparesis. I really don't think someone who doesn't have a disease and suffer the way you do can really understand. It is frustrating and I wish I had an answer for you. You could try finding something on the internet but I think for the most part after awhile family/friends sympathize for a short time but later they just want to assume you are okay and everything is normal. In a way I can understand their frustration and I try not to complain too much. I usually vent here or on another web site that has a gp support group. Have you found a Chrohns group anywhere? The support group that is specific to my gp has helped me.

Pooh nut · 09-24-2007, 07:54 PM

Quote:

Originally Posted by miknan

I have the same problem with my family concerning my gastroparesis. I really don't think someone who doesn't have a disease and suffer the way you do can really understand. It is frustrating and I wish I had an answer for you. You could try finding something on the internet but I think for the most part after awhile family/friends sympathize for a short time but later they just want to assume you are okay and everything is normal. In a way I can understand their frustration and I try not to complain too much. I usually vent here or on another web site that has a gp support group. Have you found a Chrohns group anywhere? The support group that is specific to my gp has helped me.

As a fellow paresis sufferer I would love to know of any other sites that help.

miknan · 09-25-2007, 09:55 AM

Pooh nut,

I would love to give you the link but it is against the rules of these boards and I already got in trouble once. If you do an internet search "gastroparesis support group" you will see several references to it. Good luck. BTW, how long have you had GP and how do you deal with it? I have only been diagnosed 4 months but taking Domperidone and watching my diet has made my life so much beter. Still have my bad days but I still have some good ones too.

Grana · 10-19-2007, 09:36 PM

I have been dealing with clostridium difficile now for over 5 years and it has definitely ruined my family life. This is a bacterial infection in the gut caused by too many antibiotics from an infection I had at one time and the bad bacteria took control of my gut. I have good days and bad days. I can not plan ANYTHING because sure as I do I will have a horrible cramping, diarrhea day where all I want to do is go to bed with a heating pad. I also experience extreme fatigue at times (even with b12 injections) and my grown daughters have a severe problem in understanding me not wanting to babysit grandchildren to the point they have all but stopped coming around. Do they not understand that I would LOVE to keep them too but just can not manage it? Chronic illness either brings families closer together or pushes them apart and unfortunately mine seems to be pushed apart. NO one understands until they are going through it what it is like. I was guilty myself of not understanding how people could not pick themselves up and carry on until now. Somedays I fake it and carry on like all is well when in fact I feel like I am about to fall on my face but sometimes I just cave and give into it and go to bed. Life can be so unfair at times!