What we wish they knew!

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Dereksmagic

Dereksmagic

Joined
Dec 23, 2012
Messages
100
*EDIT* - Please keep the discussions or back and forth to a minimum, this thread is meant to show to people other than crohns sufferers. As a way to aid in trying to explain what we do and do not like to hear, or what we need at times, etc. Therefore, Please do not post any discussion other than adding in a new original idea of "I wish they knew______...."

If you are reading this, please share, I want to try and make this a really long thread.

I am starting this thread not for a discussion, I want to make this a running thread or list of all the points and topics that you wish someone would know about dealing with someone with crohns, all the things you need, all the things you can't do, wish you could do, have to do, all the things that you need them to do, to know, to understand and any other point that you would want a person to know that is thinking about being with you, and your disease. Please be somewhat specific, No need to write a whole story though.

I want each post to be easy for a friend of a crohns sufferer to read without having to also read too much back N forth discussion that does not add to the point of this post.

Please try and type it as if you were informing someone what to expect.

Happy Bowels :)


- I will create and add a running list below this text once there are a good handful of topics posted, and update it with all the points as they come in.

I WISH HE/SHE KNEW THAT:

* When I do try to eat healthy, it doesn't mean it's automatically going to make me feel healthy / better!

* My energy is limited, I have to plan EVERYTHING! (And cancel plans a LOT)

* Sometimes I just need to hear "That sucks, I'm here for you"

* Just because I lay down or sleep a lot, doesn't mean I am lazy. It's fatigue and I have no control over it.

* I wish they knew how weak we can become and how our symptoms can change our plans at any given moment.

* Some days I am happy to just be able to get out of bed.
 
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Can you elaborate Derek?
Do you plan on using this information outside the forum?
 
afidz said:
Can you elaborate Derek?
Do you plan on using this information outside the forum?
Click to expand...

I plan on compiling a list and yes, other people can use it for a resource to show other people what we have to go though and deal with, and want people to know... There have been many occasions where I wish I could of had a list of all the topics complied by people so I can show someone it to read.

Plus it would just be nice to hear what everyone else thinks and what they wish other people knew. And many the list will be useful for people on this site to sort of reference back to on symptoms and issues other people think.

Add a couple from yourself :)
 
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I wish they realize that just because I am lying down doesn't mean I am lazy. I have extreme fatigue! (Don't you remember when I would go nonstop, sleeping maybe four hours a night just to make sure your world was completely secure?)
 
I wish people knew that just because I'm young and don't look sick, I have days where It's a huge accomplishment just to get up. Some days due to body pain, others due to fatigue. We are not lazy; we're sick.
 
These are great! Keep um coming!

I feel you guys on the fatigue. I have been in bed for the last few days and I feel like I cant do anything, have no drive to want to do anything. Even something as simple as taking a shower seems like a daunting task.
 
lisadc1 said:
I wish they realize that just because I am lying down doesn't mean I am lazy. I have extreme fatigue! (Don't you remember when I would go nonstop, sleeping maybe four hours a night just to make sure your world was completely secure?)
Click to expand...

I'd like to add to this point.

Often times I hear, "I get really tired too from work etc yet I still manage to get some things done. Just do your best. Maybe just try to do a few dishes then go and relax again."

My best is trying to stay conscious. Trust me, I'm not relaxing.

The same goes for pain too. "I also have arthritis yet I still manage to get some things done. Just do your best. Maybe just try to do a few dishes then go and relax again."

I'm not YOU. Some people are actually worse off than others. If you have so much energy, come over and do my dishes. Help me rather than tell me what to do.

Edit:
I just got back from vacation. On the day we were leaving I felt extremely nauseous. I knew I was going to throw up it was just a matter of when. I also know that I have a stricture and everyone was informed yet apparently no one retains this information. Someone had the nerve to ask, "do you think it was something you ate?" It's everything I ate/drank. I have a stricture! I forced myself to vomit before we left on the long car ride to the airport.

I was also asked repeatedly what I could eat and then they suggested we go out for fried chicken or an all meat buffet. "Can you eat that?" If I want to throw up, yes.
 
Jennifer said:
I'd like to add to this point.

Often times I hear, "I get really tired too from work etc yet I still manage to get some things done. Just do your best. Maybe just try to do a few dishes then go and relax again."

My best is trying to stay conscious. Trust me, I'm not relaxing.

The same goes for pain too. "I also have arthritis yet I still manage to get some things done. Just do your best. Maybe just try to do a few dishes then go and relax again."

I'm not YOU. Some people are actually worse off than others. If you have so much energy, come over and do my dishes. Help me rather than tell me what to do.
Click to expand...

Oh god tell me about it! "Just try and push yourself, you'll feel better" NO! I'm pushing myself to keep my eyes open and not curl up into a ball.

I actually hate when people say "That sucks, Im here for you" and then fallow it up with, "how are you feeling?" - You know the answer, I feel like ****, don't come over and just sit there looking at me like im magically going to feel better because you asked, if you want to help, give me a back massage or let me lay my head on your lap and scratch my head, anything to take my mind off of it.

lol
 
No, we can't get coffee, no we can't get pizza, no I'm not just being an ass for the sake of it.

Basically, I have these dietary restrictions for a reason.
 
One more thing.

"Are you ok?" I am now. I get asked this often after I use the bathroom/have a bowel movement. Took time to eat it so it took some time to get it all out. My body often rejects my entire meal. What do they think I was doing in there?
 
It's a polite way to try and frame the conversation in such a way that you can decide how much you'd like to reveal. Given, people do use it too often.
 
My husband just reminded me of another one after suggesting that we cook up some steaks... "But the chicken will take longer to make." Why do we even buy food I can eat if we're not going to eat it?
 
Ahhh don't get me started on the "can you eat this?" topic. I am so annoyed every time I go out and people start making recommendations and coming up with their little theories on what should and shouldn't be ok for me to eat.

E.V.E.R.Y.T.H.I.N.G. H.U.R.T.S. If I eat something. and I know its going to hurt me, its because I don't care. If I am not eating something, don't try and convince me that "it should be OK because..." Its not ok, no, just stop it. Just because you come up with all these ideas trying to reason with my stomach doesn't mean its true. Stop playing dietitian.
 
Yeah, it's even worse when you live in a slow town with not a lot to do because every social event ends up being "let's get food from this awesome thai/ramen/pizza place and chat". So glad I'm back in remission so I can raid my favorite pizza place again. :p
 
I hate it when people say" oh yeah, Crohn's. Isn't that just a thing where you have like IBS and poop a lot? It doesn't sound like that big of a deal." Are you kidding me?!? I actually had a relative say this to me today!!
 
Oh yeah, I actually had a relative propose that the reason I ended up with this is because im a magician. Maybe because I am into that "magic stuff" it did this to me...
 
When people say 'I hope you feel better soon.' I have to bite my tongue from responding, that I will never be 100% better or the old me. I just smile and say thanks.

Also, the following comments are very annoying - 'You can eat that??!?', 'Can you eat that?', 'Should you be eating that?'
 
Can I just second your points!...

I actually went through this today canceling a long weekend visit with a gf because was I was not feeling well enough to leave my house. She gets back to me with "if you rather stay home alone and lay on the couch, that should make you feel better" Ugh...so frustrating!

BTW... I'm new, my very first post and I've had Crohn's for 39yrs. Crazy!
 
Love this! Another reminder that i'm not alone going through this. Yes, the fatigue is a huge one... i am not lazy!! Just because i look well, you can't see it, but i don't feel well. The worst one i've been told was " well, on the bright side, you'll probably always stay thin" I wanted to slap her! As though i'd rather be thin, malnourished, in pain, taking meds, constantly paying attention to what's in my food, dealing with med's side effects, etc!! than put on some weight!!
 
stop stressing out, stay away from stressful situations maybe you wont be sick. ok then who else is going to take care of my children, deal with why I cant eat without possibly sending me to the er?
One that I really dislike is dang are you ok? you look tired?? actually I feel really good and thought I looked good today which is why I'm out. but thanks maybe ill go hide out in my house again.
another is: you have to go to the bathroom again?!
another: while in the bathroom someone sits next to the door and every 2 minutes asks if Im ok. trust me if I wasn't id scream and let someone know also can you give me some privacy so I can fart in peace.. thank you!
just a few I could go on:)
 
Jennifer said:
This one reminded me of, "can't you wait?" Really? :yrolleyes:
Click to expand...

haha yes! my mother always says this and I say well you try not having a working colon and rectum then she will say well let me play the violins for you..:ybatty:
 
On hearing that my son was diagnosed with Crohn's:

"So you just have to put him on a gluten-free diet, right?" or

"Oh, well, at least it's not something bad":ybatty:
 
I was reading through threads and thought this would be interesting to see what responses would be given. At first I thought I would not have much to offer for two reasons: 1. the responses highlighted the most significant issues and 2. I tend to shy away from people when I am in the throws of a flare or bout of pain from my stricture so really didn't think I would have to much to add.

I recall one bout of pain with my first stricture that lasted non-stop for 6 hours (circa 1992). The pain was 8-10 out of 10 during the entire time. I lived alone and did not reach out to anyone. I just laid there and squirmed for 6 hours wishing for relief. The pain subsided just in time for me to clean up and head to work (I was medic in the AF working the E.R.). I was at work about 30 minutes when the pain came roaring back. They admitted me and knocked me out for the rest of the night. I learned a lot from that episode, my pain is my own to endure and like you all, I did not want anyone saying "stupid ****" to me cause it was not going to do one damn thing except piss me off.

Over the years, of course people had to know but they only got to see the really bad ****. Like when I first obstructed and had to crawl to the bathroom to vomit feces (it was a large bowel stricture and by 2002 it was causing me lots of problems). I had to call my best friend to come get me and take me to the ER.

I never really talked to my partners about it except to let them know I had it when I was ill. I really have had a good run with my Crohn's over the years and been able to manage better than a lot of other sufferers. I had my first resection DEC2002 and got rid of my large bowel stricture. I would do well for several years and in 2006 entered a long-term relationship with my current partner. I had a flare within 6 months of starting the relationship and that is where I really had to deal with, "What "I" wish he knew!"

1. No, I'd rather be alone so you can stay at your place tonight.
2. No, I am not mad at you but when we are together you are talking a lot about yourself and when I feel like this, I would rather not talk about YOU. I don't need to talk at all.
3. I need a few days alone to let this episode pass. No, I am not breaking up. (refer back to #2).

So I guess after writing my thoughts, I understand that I really don't need others except my partner to really "get it". I understand that we all have to manage our relationships at our own comfort level based on several factors: personality (I am a loner for the most part), work (I am fortunate to work remotely), symptoms (I have only had ulcers and strictures and while no fun, I see many others on here that have it so much tougher).

I currently have my lower ileum significantly strictured (6 obstructions in the last 6 years) with significant worsening the last few months. My GI said he can no longer manage me medically so its off to surgery for me. Having my surgery 15JUL and I just might have a few more things to add after I recover and have to deal with my new dietary restrictions and BM surprises after losing my terminal ileum and ileocecal valve. I having been soiling myself in my sleep so at least my partner won't be surprised.

This went a bit longer than I anticipated but it was very carthartic for me. I am aprehensive with the upcoming surgery and this was probably not the most appropriate place thread to discuss, but I am sure my fellow IBD suffers will be the first to get where I am coming from.

Darin
 
UGh!!! I hate when people make it sound like my pain meds are what is causing my issues. Its crazy how many people say (during a flare) "If you just get off the pain meds youll feel a lot better"

Umm? No. The pain meds are the only thing that keeps me from not crying 24/7 from my stomach feeling like I swallowed a gallon of gas and then ate a lit match.

People dont understand that its not just "this" or "that" sure, I might be feeling bad RIGHT NOW, from withdrawing a little from my pain meds, Or a little right now from what I ate, But REGARDLESS, I FEEL LIKE CRAP BECAUSE OF MY CROHNS. And, thats not going away no mater what your advice is on what will make me feel better.

I hate that one. Its the only one that legitimately makes me mad at people.
 
'Are you allowed to eat that?'

'You just need to stop eating junk.'

- MY DAD

Annoys me SO much. I eat depending on how I feel. So just because today I'm not eating ____ doesn't mean tomorrow I won't eat ____.

And yesterday a family friend got talking to us and we got onto the topic of me potentially having crohn's, how much weight I've lost, how sick I look etc. and then she goes on to say...

'My daughter had that, hers was IBS though. She dropped in weight and had to be admitted to the hospital! She was in SO much pain!'

Ummm, I'd go get that diagnosis double checked if I were you.

OH. Yeah I have another whilst I'm here.

Me: 'I can't wait to just feel better and myself again.'
Friend: 'Me too, so we can go get wasted like we used to!'

NO.
 
Does anyone else get annoyed at how other people downplay what you are going though? Or make you seem like you are laying it on too thick.

I always had my dad down here asyign that its time to get better, get a job and try and do something...

I have been in a flare for almost 2 years, no meds are working, and nothing is making me feel better. My good days consist of me having my new girlfriend over to watch movies.. I still cant even go out and make it though a meal without feeling like crap, end up not eating what I ordered, and having to leave the table to drive back home.

Yet I always get "Well, you just need to push yourself" and you'll start to feel better, a lot of it is mental. You're just in a rut. A lot of sick people fall into a rut.

Um. My 2 years of flaring, 3 GI doctors that have given up, my pain management doctor, and the blood in my toilet all strongly disagree with you...
 
"Are you feeling any better today?" although I appreciate the concern, I've been sick for years, although I'd wish today was better its a chronic condition.
 
Hi calling in from the UK. I wish they knew I wanted to know stuff. All the options. The extra things that might help me, like Vitamin D, Folic Acid, Pro-biotics, that I need B12 injections regularly! I know all this now 20 years on, but when you are first diagnosed it's a minefield and I found out most of what I need to know to keep me well via the web and not the doctor/hospital. I have just had two plus years of my best health (albeit recent flare) by following the Lofflex diet. BUT I had to research it and find it myself. Now when I have had my flare I was offered Elemental 028, but only because I had already proved to the medics that for me diet was a big deal. Otherwise I would now be in year two of Infliximab. The Crohn's forum gives loads of information, can be a bit bewildering at first, everyone talking about different treatments, medication, diets, etc, but at least the information is there and posted warts and all, so anyone needing to decide on which treatment can get a clear sense of what the reality is. I often talk these days to recently diagnosed people who come to me via friends, etc and make sure they know what questions to ask and what their options are. So I guess I am saying more information please, clear, precise and all the options, not just the ones you approve of. xx
 
Dereksmagic - One thing in your post I loved, and thats the girlfriend part, :lol:
The thing is that 90% of the ppl are not able to grasp even 10% of what you are going through.
It happend that I experienced such insensitivity from ppl that supposed to be very close to me; it was so not in place that I didnt know even how to respond or what to do.
I would not hesitate to say that those expereinces in general change my poiny of view on relationships with familiy, friends, coworks etc;


I wish you to find your way to better health; you deserve it. I will pray that you will be from those cases that take a 180 turn and get into such a deep remission that you wont feel your Crohns for many many year.

In the meanwhile, watch lots of movies wi your girlfriend !
I have recently saw ״Le Promeneur D'oiseau״ ; I really enjoyed it and actaully it is about relationships. It is a great movie, I think.


Sending some positive vibes at you :getwell:
 
I heard about that news, but didnt see it. really disturbing. If they acctually knew what for instance I ate before getting ill, they would stfu!! I ate homemade organic rye bread, hummus, vegetables and fresh garlic for breakfast with juice. For dinner, 90% of the time it was homemade, made from scratch. Nope, it wasnt pizza and burgers, but lamb, steak, fish with vegetables and so on, extremelly healthy stuff - so, ye, must be the fast food :S
Just needed to get it out of my system :)

Anyways, other side effects I have from Crohns, joint pain. I havent seen anybody mention it, maybe its not typical, I dont know, but for me the joint pain is bad and I have severe constipation, which is not fun. Its very painfull and annoying, affecting my general body, making me weak. I have severe fatigue and yes, like you, taking a shower seems like a huge task. Waking up from pain in the night, therefor irradic sleep in periods and nasuea from Imuran and stomach burn is a symptom which is annoying. Food is a challenge and yes, ppl tell me aswell, this is good for you, this is not, somethimes when I acctually dont know better I eat whatever is served and last time I pooped pure slime for several days. That was scary and I will never listen to another well, better knowing opinion about food or my health again.
 
Krika, I have joint pain too! I don't know if it's just one of the symptoms that isn't talked about very much or if, like you said it isn't typical, but I haven't heard of it very often either. They haven't called if spondylitis yet, but it was my first symptom- rather than weight loss, or abdominal pain/bleeding as is common. I think that's why it took me four years to be diagnosed.
 
Hi this is Derek's dad and I just read through the post.

Thank you all for sharing your feeling, It has given me a better perspective on the day to day issues. and how guilty I'm from making some of these comments too.


Although I really get it, I'm probably gong to get frustrated at not being able to do anything to "fix it" , that I will inadvertently blurt out one of the stupid comments / questions. I'm probably not the only family member of a crohn's sufferer that will make this mistake. And I bet most (family / Friends) are just confused / scared on how to tread.

The more I think about it, although "you" have the disease and the pain, it's the family that shares the confusion.
 
#1. "You have to go AGAIN???"
#2. "You just WENT."
#3. "Can you wait until we get to the next rest area/gas station?"
#4. "What... NOW???"
#5. "Can you hold it?"
#6. "I heard it's caused by stress." (my favorite! lol! I've never been a "stress person"... EVER. Quite to the contrary... to a fault.)

Then, of course, the all time winner:
"Sorry but our restroom is for employees only". :ymad:
 
I am new here but it's nice to see I'm not the only one who's received these comments over the years. Even when I "only" had the IBS label. Right before I had my gallbladder removed someone said to me, "maybe you wouldn't get sick so much if you gained weight!" Now I can say, "Maybe I could gain some weight if I wasn't so sick!!!!" (I have always struggled with being too thin but this GI stuff makes it even harder....)
 

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