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Human side of CD



I use to be a regular at the healingwell crohn's forums for a while and even became a mod there for a short time till I got pretty sick and unable to log in to help with the forums.
There was a nice girl on the forums who posted a few times, I forget her name but she posted the following and I cut and pasted and kept this and read it now and then because I can really relate to what she says, and I'm sure you can as well. And its always nice to know you aren't alone. So I really hope she wouldn't mind me sharing this on this forum:shifty-t:
Not sure if there are any rules etc on reposting things from public forums like this so I will delete this if thats the case.

I sat down today and decided to write out how I am feeling, as I was asked, yet again, what this cd is like, and how it affects me. Here is what I wrote, let me know if you all feel the same, different, or if I forgot something:

I have been asked many times what this disease is like, how it affects me, etc. Well there is the med ical explination which says something like: mild to severe: diarrhes, nausea/vomiting, abdominal pain, dizziness, weakness, malnutrition, fistulas, arthritis, liver and kidney problems, higher risk of cancer, fevers, chills, etc, etc, etc.

Then there is what I call the human side of this cd:

The FEAR it causes: -of pain, surgery, getting worse, not getting better, dying os starvation (I know that is rare, but I came too close to that once, right before my first resection, dropped to 80 some pounds, GI kept saying nothing was wrong for months, then he found the stricture), more symptoms, never getting pain relief, of embarrassing ourselfs with accidents/ public farts, that our partners may leave us because they can't deal with the cd anymore, or never finding that special someone because of this cd, of judgement by others, Dr's, & Gi's, of not being HEARD by your dr, gi, of being alone, etc.

The craving: someone to support you, to be close to, to feel "normal", to be pain free for at least 1 day, 1hour or even 1 minute, not to mention the foods you can't touch.

The Desperation: to get out of the hospital, to get better, to never have to go for another test, surgery, dr's apointment, or hospital stay.

The Guilt: of being jealous of those who can eat anything, and do anything they want and of those who are not ill, of not getting anything done today/yesterday/tomorrow, of having to have others take care and support us- family, friends, loved ones, gov't

The Sadness: that we will never be the same, of what we have lost physically, emotionally, financially, loss of stability, even loss of a good night's sleep

The Frustration and Anger: of the inability to afford good (or any) medical care, dr's appointments, medical tests, and perscriptions, that others don't understand what we go through, that dr's and GI's don't/won't always listen, that others with well known/different diseases get better care, and pain control, but we have to "make do" or ""deal with " the pain, or are told by the all-knowing Gi's/dr's that we SHOULD NOT be in pain, as so therefore we are not in pain. Anger at those who distance themselves, or leave and/or make excuses because they dn't want to deal with cd, that the medical coverege covers meds like viagra, but not someof the meds we need.

Anxiety: of being alone in the ER, during med tests, waiting for results, waiting for the pain to go away, waiting to get worse, waiting to get better, waiting to see if your partner will leave or stay, waiting to see if someone, anyone will listen when you talk (TG for you all at HW!!!!!! )

The Needy part of us: needing so much support, need to have others "do" for us (cook, clean, listen, give support), need to be HEARD by our dr's, to be loved as we are, as we love others, need for action (to actually have some sr give us meds that work, or to have him/her actually listen and want to help us feel better, not just et better)

Tired: of being ignored by GI/DR's, of being thought of as whiney or drug seeking when in pain and needing relief, of being weak, sick, tired, of wanting to do so much, but only bale to do so little, of crying when f gets to be too much, being sad, of the D and all the other symptoms.

There, now that describes it for me. Does it describe at least some of it for you?
Wow that was amazing. Were you the one that posted this sight at HW because I used to go there and now I dont because I love this forum so much because of the extra stuff there is.

Thanks for the post



I used to go to Healing well allllll of the time...and occasionally still do. I find that there is alot more "medical" stuff posted there, where as here, its more every day living kind of things. I like being here more for that reason. I have read all I can about this disease, and yet I still felt alone. Here, I don't.

As for the post itself. Incredible. She certainly summed it up. You know, I have found one of the hardest things to deal with this disease is feeling positively AWFUL on the inside, and look as healthy as can be on the outside. So many times I have had to "cop" out of doing things because I just couldn't do them. And those times, all I heard behind my back was that I was making it up, I couldn't possibly be sick weighing as much as I do or that I was plain lazy. If anyone knew me before I was diagnosed, they would know the opposite. This disease is so much in the dark, because there is no one "book" to follow like most other diseases, no one "typical crohn's patient". There isn't enough info out there...so we are just labeled as lazy and looking for meds. I wish. If I were lazy, I might not feel as I do, and I would feel more relaxed and rested!!

Thanks for posting that. Sorry I started to rant, but it does suck when no one else understands, and worse when they don't want to understand.

Love you all here!!



no I didnt post this site on healingwell, and i was just a mod for a short little while, dont think i am anymore cause i havent logged in there since i got better and out of the hosp.
But yeah i loved what she said in this post it really pin points different things we feel about cd and how we deal with it


well it touched a spot here

thnks you sparrow for posting that for us
That was great. Will be going in my notebook for sure! I have a hard time explaining how this disease limits you and causes problems...this describes it very well

Right now the pred is making me so shaky i am having trouble typing! fun stuff


wow, that was really great..its amazing to read something and be like 'wow, thats exactly how i feel', because you can try to explain it to friends, but they just cant know...
thanks so much for posting that


Thankyou for posting that.Very well writen and explains it very very well.


thanks for sharing that Sparrow! it does relate. nice to be reminded were not alone with this.


Great share Sparrow! It really explains a lot of things that are hard to put into words really well. It is really neat to see something written by someone else that so many others can relate to, no matter what they have been through with their own condition.
wow, sums our feelings in everyway. i have discovered a new saying to keep me going. "life is worth every challenge we may meet." always hold the postive times in close reach for those tough times.


wow sparrow thanx for posting that. that does hit very close to home.
Thank you so much for posting that Sparrow ~ I have not logged onto this site for a couple of weeks (soooo busy!!!) and I had an awful weekend with dealing with the symptoms of a flare on its way. I needed this today. I am feeling very sorry for myself and this helped my mood tremendously. Thanks again!!