- Location
- Lincoln, NE
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!
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What is the worst thing about having Crohn's Disease?
- Thread starter BreakingCrohns
- Start date
- Location
- United States
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.
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 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.
- Location
- London, UK
Too many worsts...sorry I can't pick just one :runaway:
nogutsnoglory
Moderator
The anxiety it causes because it's unpredictable and it's impact on my social life.
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? 
- Location
- Lincoln, NE
I completely feel your pain! I had a perianal abscess, fistula, and several fissures years before my diagnosis.
- Location
- Lincoln, NE
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?
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!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?
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? :thumbdown:
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...
Missing out on activities with my son, having embarrassing accidents while out...
I normally need a holiday AFTER the holiday. Sometimes its more relaxing and less tiring to stay at home.
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.
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!!