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Crohn's Disease
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Posted 12/28/2008 2:25 PM (GMT 0)
Wow I really had a rather shocking experience over Christmas.  My eldest brother basically said that he does not believe that I am sick and that I have been faking all along.  And even if I might be sick now it is because I made it happen. It is mainly a mental defect.

I was so flabbergasted.  Luckly I have the U.S. government (and several doctors) saying that I am very sick and might never be able to work again.  So I was just wondering how many other people have had this experience?

 

Posted 12/28/2008 2:37 PM (GMT 0)
I feel your pain. Crohn's is a disease that no one really knows about. (I work in a hosptial and see it spelled wrong all the time!!). My husband always tells me that I bring on the flare-ups my-self with my "emotions." It is unfortunate, but when people don't understand something they tend to disregard it. What makes it worse, is that the disease is not consistant - each flare may be different and different people have different severities of the disease. Your brother is probably only seeing that you don't have to work - he is not seeing all that pain that you are going through. Try to educate him as best you can or invite im to come to the GI with you. Good luck.
Posted 12/28/2008 2:47 PM (GMT 0)

navy

i was in bed xmas eve and xmas day with one of the worst flares that I have ever had. i had to cancel driving an hour to see cousins. when i called to say that i was ill,  they were very frosty. i have heard nothing since, even though it was obvious that i was spending the holiday alone, with no-one to help me out should i need it. i heard thru the grapevine "italian family variety" that they had the same opinion of me as your brother does of you. who would choose this? to be feeling horrible on xmas and to then have to spend it alone? i just don't get some people. it is sad that a bunch of relative strangers on the internet are acting in a more caring and supportive fashion than our own flesh and blood.

feel better

Posted 12/28/2008 2:53 PM (GMT 0)
Oh my gosh Navy that is horrible that you have suffer thru this from a FAMILY member. I haven't even seen you in person but even I know that you are seriously ill. That is one thing with this disease, people can look at us from the outside and think "she doesn't look sick", but little do they know inside we are literally dying from the pain. And ladybug0709 is right it is a disease many have never heard of. And how many of us hear when we flare, well did you eat something wrong, or you shouldn't let stress get to you so much. It truly is frustrating.

My family or really even my friends never really took my illness seriously until I had to have an emergency resection. I think they saw how I went from one day being fine to the next in excrutiating pain that led to the surgery and being in the ICU for two days afterwards. Now my friends are always saying if your case is mild, what is severe like. And I can only say "I can't even imagine", because I can't.

I think you should invite him to come along with you to your GI and let the doc explain how sick you really are. I am sorry that his ignorance upset you so.

Hugs
Gail *Nanners*
Posted 12/28/2008 3:09 PM (GMT 0)

That is hard to imagine. 

I have not had to face that at all, but maybe that is because I have gone through some major physical changes that are very hard to ignore (loss of over 100 pounds and then surgery this year)  I have met several folks with crohns who appear on the outside very healthy but I know suffer a great deal from the disease.

I just have to live with the hope that all of the help and support I get would be the same if all I had to support my illness was my word and not the physical changes.  You never wish this on anyone....but if only for a day some of the folks we know could experience what we already know.

Posted 12/28/2008 3:41 PM (GMT 0)
I'm sorry you had to go through that, Navy... :(.... I think the only person I know for sure who wouldn't do such a thing to me is my mom... *She doesn't understand the disease, but then... she doesn't really understand anything... and she thinks we're all complete angels... //@.@\\'...* I've had the same thing happen to me... My sister (recently, around Thanksgiving) was trying to tell me that Crohn's was my fault because I didn't get outside enough when I was younger to build up my immune system (or whatever)... And back when I was living full-time with my Grandma... I heard one of my aunts say that I must be some kind of queen, not doing any work around the house and laying down a lot... :(... *I did lay down a lot, but I always tried to do some work around the house... That aunt was always making me feel bad, though, even before I got Crohn's...*

It hurts... and I'm oversensitive, to boot... but... It probably doesn't hurt me as much as it would other people. I kind of have this wall around me, I guess you could say, to protect me from all the crap that goes on in my family...
Posted 12/28/2008 3:53 PM (GMT 0)
Hugs Navy!!! That is NOT right and I stuggle with others who have told me similar things as well!

When I explained to one of my siblings around Thanksgiving that I was getting started on Remicade and how expensive it was, he asked me if I had sought a second opinion. I got upset and emailed him a very detailed list of how many doctors--GI's, eye doctors, etc--I have seen with all of this AND all the side effects or whatever you call them, I have with Crohn's. I reminded him of how awful and red my eye was during my son's birthday party back in September and asked him if he recalled seeing it. I reached a point where I was sick of trying to explain why they "think" I have Crohn's. As far as this goes, I am not going to bother explaining it to him anymore.

It really hurts when someone does not believe you. I know from previous posts that you have been VERY sick with this disease and it is upsetting that even after all of that, they still don't believe you.

When most of my family didn't believe I had Crohn's (this was before my official diagnosis) my doctor told me that it didn't matter what the family or others thought, because they were not doctors. It was still hard though. Even after my official diagnosis, I still had a few doubters, one of them mentioned above.
Posted 12/28/2008 4:06 PM (GMT 0)
Navy, I am so sorry anyone could think of saying that to you. It's absolutely WRONG, and I hope your brother is able to open his eyes to the truth someday about what is really going on. All I can offer is my support...I hope you're all right otherwise..
Posted 12/28/2008 4:11 PM (GMT 0)
That's terrible Navy, I'm sorry to hear that. Hopefully you have other family members who aren't as stupid.
Posted 12/28/2008 4:47 PM (GMT 0)
HUGS Navy.
Posted 12/28/2008 4:49 PM (GMT 0)

Navy,
   Now I know why we were posting in the middle of the night over the holidays. My husband is/was Mr Mom, and I love and respect him for that. My oldest Daughter (who has never had children) was talking with her new step-child this week and told her " See how my Dad is, this is why I am a great parent". Now I know how Dad's feel!  As a parent who when she was a child `nearly passed out at my job, then spent 9 days in the hospital life threatened still with no answers for fourteen more years, it was shocking to find out that she gained no parenting skills from me.
   This is painful to me, I am one of he people who "doesn't look sick", but feel my husband could have done much more. I try to have understanding for the fact that he was never an outgoing person, and this was more of a factor in his not working than his illness was. I was unable to get any disability for him for many years-they just told him to go back to work. After to much time passed to receive any social security, they finally approved him for SSI, I am not sure if it was awarded on mental issues or physical ones. He thinks mental, because they made me his payee. I just try and remember "he didn't look sick" and always give him the benefit of the doubt, but I never once saw him push himself the way many Mothers do on a daily basis.

   I often wonder if my "Mental Defect" were not being a workaholic who refused to take a day off and took to many NSAIDS for joint pain to keep going (someone had to feed them), would I have ever even had Crohn's or would I still be in "remission" with unspecified autoimmune disorder. I don't know about you but my other mental defect was often dropping everything or climbing out of bed in the middle of the night help a friend, or my children and their friends.**** me for caring so much, no wonder he is the parenting example.

  Thanks for letting me vent, now it is plain to see why we get more compassion "from strangers we never met", it is hard to put yourself in others shoes. It seems most Crohnies try to take up the slack in the family unit, until we just can't any longer then they see us as failures who "always did it before".

 Survivor,

  I have a dear friend at work who is from an Italian family of beautiful women, who are rather traditional, and somewhat critical of her. She told me that every day she prays she never suffers from a autoimmune illness, like myself and many of our customers because she feels they would just not "get it". She is a wonderful young woman and I can't imagine how they find so much fault in a child they raised so well. I just think the old ways were to find fault and point it out in an effort to help the loved one better themselves, and in her case there seems to be a little jealousy involved.. This is also common in the large Mexican family I married into 35years ago as well. It seemed quite mean to me, but there is in reality so much love.


Posted 12/28/2008 6:14 PM (GMT 0)
Not me,,, and how are you coping with his denial of your situation?Apparently some people seem to have problems accepting that the people they love could have such a condition. I really don't know how to deal with that but perhaps others might. lol gail
Posted 12/28/2008 6:30 PM (GMT 0)
Umm, Margie, I don't mean to sound rude or anything... but... I couldn't understand your post exactly... Are you the one with Crohn's or is it your husband? Or both? Or do you have Crohn's and he has some other disease? *Is confused* And I can't tell if you're praising your husband for being a Mr. Mom or condemning him... //@.@\\'... And who's mothers are you talking about? Yourself? Friends? I know a lot of mothers that don't push themselves at all and they aren't sick (sick-minded, maybe)... (or if they do, in the complete opposite direction, meaning it seems like they go out of their way to neglect their kids. I have this cousin who has three kids... and she left them all by themselves while she went to a completely different state to meet her internet boyfriend. She's not the only mother like that, either... I can name several more, some from my family, and others I've had the misfortune to meet that aren't family)....
Posted 12/28/2008 6:36 PM (GMT 0)
I think some of the stuff we have to hear from our family is just an extention of our own "this can't be happining to me" denial. We have reminders every time we can't get out of bed, or when we get up and visit the little room, and it is still tough to face up to our own illness. I pray everyday for those of you who face this with your children. To really know first hand and watch your child suffer the same must be a nightmare.
Posted 12/28/2008 6:52 PM (GMT 0)
I feel your pain!!! When I first got sick, my sister told me it was all in my head(while I vomited in front of her). Well, it must have flowed from my head and went out through my mouth and butt(at one point it would happen at the same time). When I was in high school I would practice "sick" faces because no one would believe me. My family and others still don't believe me!!! I have this relative who "one up you" with illness. My stomach hurts, hers feel like hell. I was on the toliet 6x in a hour, she was on the toliet for an hour. I haven't ate since yesterday, she hasn't ate a thing all week!!!  A lot of times I forget that I am sick because I am so mad with her. When I complain about feeling bad, she would watch me like a hawk(like she is waiting for me to slip up). I am like what is her problem. We are both sick, what is up with the competition? She should know better because she is like 20+ years older than me. Others are urging me about disability, but I don't know if I can deal with the "whispers". If you didn't sleep all night, of course you are going to sleep when "normal" people are up. If you have constant diarrhea of course you are going to be in the bathroom. If I have cramps of course I am not going to run your errands for you when you have own family. That's why my enemies are my family.      

Posted 12/28/2008 7:00 PM (GMT 0)
Slip him some ex-lax in some food or drink, then when he complains of having a ton of D tell him it's all in his head and you don't believe him...I know it's not the same as actually being sick with an IBD but the effect is similar...I also know it's not a nice thing to do but I'm in a mood today. devil

:)

Posted 12/28/2008 7:18 PM (GMT 0)
//>.>\\'... It isn't a nice thing, pb4.... But man...

What a way to push some tempting ideas... *LOL*
Posted 12/28/2008 7:20 PM (GMT 0)
LOL celey, I always have good advice for others in situtations like this (okay, mean advice) but the truth is I would probably never actually follow my own advice...but think it would be a lesson learned in this case.

:)
Posted 12/28/2008 7:24 PM (GMT 0)
Celey,
It is never rude to seek to understand where someone is coming from. I greatly appreciate the fact that you are reading my post and trying to understand what I was trying to convey.As to praising or condemning, some of both. He was a great stay at home Dad, who has Diabetes. He seemed to "give up" so easy even prior to being ill, but being a Crohnie, I know you just can't tell from the outside. As to the Mothers, I was thinking mostly of the Moms here who are sick at heart when they can't do what they want with and for their children, and the Moms on the Pecanbread forum , many of whom are Crohnies dealing with children who have ASD or autism, and often GI issues of their own. Yes, our family has fostered many children who have neglectful Mothers, so I do understand that many Moms leave much to be desired, but so often the personalty types who suffer from Crohn's seem to give and keep giving, much to our own detriment.

I once posted a comment my Husband made to the effect of "what if he got well and I was sick". I took it as he didn't want to have to take care of me like I have him, and someone here on the forum pointed out that he was just feeling really hopeless, and was really worried about where to go from there. Sometimes I take things wrong, when I am in a lot of pain, or depressed because I can no longer do the things I used to do. I feel very worthless when I can't carry in the groceries, or some other simple task, and I let it put me in a "I am a worthless person now" funk. If my feelings of worthlessness are so strong, I'm sure he can't help feeling the same about me. I try not to show I feel worthless, I don't want him to feel worthless about himself, but some days I feel we are both worthless. It is very hard for us both to accept that we cannot be all things to all people any longer. He also gets very angry when the children say things like the "this is why I am a great parent" statement. He knows all to well how hard I worked for them. Denial is strong though, several years after the Doctor confirmed my DG with a c-scope, and told Hubby the results before I was awakened, and again in front of me, Hubby asked me if I really had Crohn's. I can't imagine it would be easy for me to accept such a diagnosis for one of my family members.
Posted 12/28/2008 7:30 PM (GMT 0)
Navy sorry you are goin through this. I have went through similar situations. Although I do think that lots of stress for me does make me flare worse, which is the reason I think the flare I have now seems to be running rampted. Before I was dxed my family actually thought I was faking and on drugs. To make the story really short it took me getting down to 88lbs at 5'7 before finally a test was run and when I drank the stuff and they took the pictures it was barely barelly going though at one spot. I was 15 and they basically kept me at home letting me starve to death b/c they thought I was faking. (Mom did take me to the drs a few times but they said nothing was wrong w/ me and so that was that).

My dh still says I bring it on myself to a point. Like now, he says it is my fault b/c I'm stressed. While I dont deny the fact that stress seems to make the symptoms worse its still not like I do it to myself. It is hard for him to understand he just says not let the stress both you so much?

My mil actually told my husband when I had surgery in 98' (we were only dating then) that if I was tougher I wouldnt be having to have the surgery. I had a blockage and had spent 24 days on gut rest and them trying all kinds of stuff to get the inflammation down. They had to remove 2 ft. But it was because i wasnt tough enough. I was 19 then. She tried to get him not to marry me b/c of this dang disease too.

My mom still to this day says oh you must have ate something bad, or my belly has been hurting too I think there is a bug going around. That is all very flustrating too.

Ihave been don disabilty since 21. Not just b/c of Crohn's but mostly from it and all the other junk it causes besides belly issues. MIL says there is no reason while I can't work although she misses if she gets a stomach bug and has one episode of D. FIL works at the same place as dh and has came told him before I'm leaving I just went to the bathroom and had D. Well why can't they work when they have D. On extremely bad days I may poop 30 times (or on occassion more) I think they would think they were dying!!

My gi has tried to send info he gathered up for my mil years ago to help me out but she flat refused to look at it. And I feel like those type of ppl dont deserve our time or most importantly energy to try to make them understand. I just give up and try to stay away from her! LOL Best of luck to you and hopefully he will realize his mistake and apologize to you soon!
Posted 12/28/2008 8:29 PM (GMT 0)
Ahhh... Okay. I understand, now. I know where you're coming from... Being sick can be so frustrating.
Posted 12/28/2008 9:55 PM (GMT 0)
Hi.
I had that problem at first because my family kept saying "you don't look sick." It took an extended hospital stay and them reading my diagnosis records to get it through their heads that the disease is real. My mom is a big believer in mind over matter and is always telling me that I am giving the disease to myself by believing that I have it. It doesn't matter that 1 of my sisters has Crohn's as well and another has Colitis. My grandmother and great grandmother also suffered from ulcers and needed many stomach surgeries throughout their lives, which leads me to believe that they just weren't diagnosed. I wasn't diagnosed until I did the camera pill endoscopy. It really sucks that some people don't understand illness unless they have it themselves. Sorry that you're having to deal with that. It really hurts, I know. Hang in there.
Posted 12/28/2008 10:12 PM (GMT 0)
Celey,
I find myself firmly planted with one foot one each side. I know my family is struggling with the difference between encourgament and cruelty. I am struggling with the same for myself and my husband. I know I have to deal with stress in a healthy way, so I try to forgive myself when my yardstick of compassion seems short, but live in a world of always trying to balance it for myself. Navy is so strong, I often wonder if I could handle the level of her illness, and remain so strong, or would I give up? I guess I thought someone so ill wouldn't be called to the mat by loved ones as often as someone less ill like myself.
Posted 12/28/2008 10:17 PM (GMT 0)

It is frustrating for some of us to have our own family not "understand" the disease.  I've tried very hard to make my parents understand and they just won't.  They think because I look fine and seem to act fine, I'm cured.  I'm pregnant right now and doing really well.  My grandma thinks that after I deliver the baby "the disease will correct itself".  (Her exact words.)  I'm not sure why people just don't get it even when you explain time and time again.  On the other hand, my in-laws totally understand what is going on.  They've read up on Crohn's and know just about everything there is to know about it.  They are very supportive of me.  As is my husband. 

Thank heavens for this forum and for people who do understand us!!! 

Posted 12/28/2008 11:53 PM (GMT 0)
Oh, Navy. I'm so sorry. (((hug)))

I wish that there was a simple, quick, fix for this situation, but I don't think there is. I do suspect, though, that you will only do yourself further harm in trying to convince him how sick you really are. When people have condemned and labeled you as a faker, any further discussion of your illness will automatically be defined as whining.

There is only one thing that I have found to be helpful, and that is to have a someone that the critical person respects, casually discuss the horrors of severe Crohn's disease with the person who is being critical. For some reason, they will *listen* to a third party discussing our illness, even if they won't listen to you yourself. I've found that, 99% of the time, this creates a more understanding attitude in the formerly critical person.

I hope that makes sense. I'm groggy and incoherent this morning.

Again, Navy, I really am sorry. I'm sure that this just makes some of the other things that are happening in your family even harder to cope with.

Ivy.
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