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Crohn's Disease Forum » General IBD Discussion » What is the worst thing about having Crohn's Disease?


03-13-2015, 03:18 PM   #1
BreakingCrohns
 
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What is the worst thing about having Crohn's Disease?

Symptoms very from person to person with varying levels of severity. Take a moment and think about the single biggest pain caused by your Crohn's. Feel free to vent!
03-13-2015, 03:40 PM   #2
alice75
 
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The worst physical pain was a perianal abscess I had and having it drained at the bedside the doctor did give the option of having it done in the OR. Before that it was spasms caused by my anal fissure.
Psychologically it is chronic nature of the disease and that even with proper treatment one will still have symptoms and reoccurances. After 10+ years I think my family is finally beginning to understand that it's not just a matter or having surgery or finding the right doctor and just fixing it.
03-13-2015, 03:57 PM   #3
buttER
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Does the lack of understanding from family and friends count?
03-13-2015, 05:50 PM   #4
shamrock15
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I would say the unpredictability of it all. The pain that comes with it can be treated, the lack of knowing what each day will bring, especially as you try to figure it all out is probably it.
03-13-2015, 07:47 PM   #5
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I agree 100% with shamrock15. The unpredictability is the worst. You can feel great motivated and focused one day and the next day feel foggy, crappy (literally) and in pain. Especially while you work through diet triggers.
03-13-2015, 07:57 PM   #6
24601
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Too many worsts...sorry I can't pick just one
03-13-2015, 08:49 PM   #7
nogutsnoglory
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The anxiety it causes because it's unpredictable and it's impact on my social life.
03-14-2015, 12:15 AM   #8
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Gonna have to agree with the unpredictability. I've developed such a reputation for being a flake amongst my friends. My good friends get it, but others are like "You felt fine three hours ago when we made these plans!" Yeah, three hours ago is like three years in Crohn's time, okay? :P
03-14-2015, 09:34 AM   #9
2thFairy
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Being homebound and stuck in the bathroom, isolation, never knowing when the flare will end or the next will begin.
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03-14-2015, 09:41 AM   #10
BreakingCrohns
 
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The worst physical pain was a perianal abscess I had and having it drained at the bedside the doctor did give the option of having it done in the OR. Before that it was spasms caused by my anal fissure.
Psychologically it is chronic nature of the disease and that even with proper treatment one will still have symptoms and reoccurances. After 10+ years I think my family is finally beginning to understand that it's not just a matter or having surgery or finding the right doctor and just fixing it.
I completely feel your pain! I had a perianal abscess, fistula, and several fissures years before my diagnosis.
03-14-2015, 09:52 AM   #11
BreakingCrohns
 
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Does the lack of understanding from family and friends count?
Absolutely! Lack of understanding along with mixes of sympathy and confusion of friends and family can cause stress which is the very thing we should be avoiding.
03-15-2015, 05:46 AM   #12
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Absolutely! Lack of understanding along with mixes of sympathy and confusion of friends and family can cause stress which is the very thing we should be avoiding.
I love when the doctors are like "you need to avoid stress."
....like, you guys know I have a chronic illness, right? :P
03-15-2015, 10:36 AM   #13
Crohns08
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The chronic pain and extra intestinal manifestations. I have fibromyalgia and arthritis really badly during flares. Also the side effects from these meds they prescribe us are almost as bad as the initial problem.
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03-16-2015, 03:24 PM   #14
buttER
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Gonna have to agree with the unpredictability. I've developed such a reputation for being a flake amongst my friends. My good friends get it, but others are like "You felt fine three hours ago when we made these plans!" Yeah, three hours ago is like three years in Crohn's time, okay? :P
Absolutely. I get nervous booking a holiday, how can I know how I will feel on that day, at that time, in 2 months time when I don't know how I will be feeling in 3 hours!

I guess I am not the only one?
03-16-2015, 03:53 PM   #15
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I am wondering if the worst thing is that it doesn
03-16-2015, 07:07 PM   #16
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Absolutely. I get nervous booking a holiday, how can I know how I will feel on that day, at that time, in 2 months time when I don't know how I will be feeling in 3 hours!

I guess I am not the only one?
Nope, not alone on that. On one hand it seems so pointless planning a nice, NORMAL vacation... on the other hand what if it works out? And I think it's safe to say ppl dealing with Crohns NEED to take that time to relax.

It's just a really shitty circle of what if's?
03-17-2015, 04:36 AM   #17
lookame
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The pain right before having to use the bathroom, having to pass gas over the toilet so I can pass blood and mucous, side effects of meds (Remicade gave me drug induced lupus, prednisone has me having intense hunger, thirst, cravings and insomnia, oh and the process of becoming allergic to Remicade was also fun)..

Missing out on activities with my son, having embarrassing accidents while out...
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03-17-2015, 06:06 AM   #18
buttER
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Nope, not alone on that. On one hand it seems so pointless planning a nice, NORMAL vacation... on the other hand what if it works out? And I think it's safe to say ppl dealing with Crohns NEED to take that time to relax.

It's just a really shitty circle of what if's?

I normally need a holiday AFTER the holiday. Sometimes its more relaxing and less tiring to stay at home.
03-18-2015, 01:57 PM   #19
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Does anyone know what happens if I stop taking humira all of the sudden? like for a few days(5-11)? I was soooooo sure i had one more refill but apparently i didn't. I need to reapply for it and it will take 2 weeks or maybe 3. My next shot is in 8 days. I am so nervous
03-18-2015, 08:15 PM   #20
The Real MC
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My case is pretty mild compared to most people but the worst thing is not knowing what foods can trigger 12-18 hours of painful abdominal cramps.
03-22-2015, 09:59 PM   #21
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Does anyone know what happens if I stop taking humira all of the sudden? like for a few days(5-11)? I was soooooo sure i had one more refill but apparently i didn't. I need to reapply for it and it will take 2 weeks or maybe 3. My next shot is in 8 days. I am so nervous
This happened to me -- they advised me to try to get a dose from my doctor, cause sometimes GI doctors have samples and they can give that to you if you explain the situation. I was able to do that without any problems, so it was okay. If that didn't work, though, they told me that what I should do is just take it the day the shots I was ordering arrived.
Good luck!!
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