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Crohn's Disease
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Posted 7/2/2011 2:12 PM (GMT 0)
So, after another sleepless night due to severe joint, muscle, and skin burning pain, I would love to know how you all would rate your quality of life. With 10 being great and 0 being terrible. I would say I am feeling like a 2.5 right now. I guess I am just hoping to see some high numbers. Would give me some hope for the future.
Posted 7/2/2011 2:16 PM (GMT 0)
Two and a half years ago I was about to go for surgery - Humira was a last option to prevent it. Since the Humira started to work my QOL has been about a 10. So hang in there!
Posted 7/2/2011 2:36 PM (GMT 0)
I am in a mild flare right now and on Entocort. But I would still say I am about a 6-7. But my usual is about 8-9. I can't say a 10 as I also have other health issues that make life a little harder. Hugs!
Posted 7/2/2011 2:36 PM (GMT 0)
hi riderfan, im being sent to see a surgeon now to discuss surgery as the medical GI team think thats the only option left for me, just wondering, did you ever take remicade before? Ive had remicade but it didnt work, havent tried humira though.
Posted 7/2/2011 8:02 PM (GMT 0)
Yes I took remicade about 10 years ago and it worked great. Problem is back then they only gave you 1 infusion because they didn't know much about it. Some people do better on humira than rem or vice versa.
Posted 7/2/2011 9:31 PM (GMT 0)
Usually I would say I am about an 8 or 9, but I have been having something going on since February and things are bit dicey. Somedays I am at a 2 or 3, but I still have my 8 or 9 days, even the rare 10. I have a positive outlook on life. There is always something to smile about, even if it is just a nice view from a hospital bed. We have a chronic illness, but I refuse to let that be the ruling factor to my life. I have a wonderful husband, 2 great daughters, a beautiful home and friends and family I love, what more could I want.
Posted 7/2/2011 9:36 PM (GMT 0)
I'm usually 9 but I certainly have days where I am low. I take Humira which works most of the time. I hope you find something that works for you soon.
Posted 7/2/2011 9:43 PM (GMT 0)
8 or 9 sounds nice.
Zanne- I hope you feel better soon. Did you have your kids after being diagnosed?
Posted 7/2/2011 10:23 PM (GMT 0)
I had symptoms when I was a teenager, but wasn't diagnosed until my first daughter was 1. I had my second daughter 2 years later. I can't say that the first 10 years were easy, because I was dealing with the damage that had been done from being undiagnosed and untreated for so long, but once I got things under control, things got easier and better. But even in the midst of flares, there are still things to be, dare I say, happy about. We just have to "adjust" our definition of happy sometimes. When the disease is really under control and we are on vacation in Disney, running all over the place and going all day, that is a 10. When the disease is active, but my kitties snuggle up with me for a nap and purr like crazy, that might make the day a 7 or 8.

Trust that you will find the right medication and things will get better. I have lived with this disease personally for 23 years. And my mom was diagnosed when I was 1 so I have been around it for 45 years. I know there are ebbs and flows to it. The good days out number the bad, I promise, it is just so hard to see it when you are living through the bad ones.
Posted 7/3/2011 1:45 AM (GMT 0)
I agree with Zanne, ebbs and flows. Presently I'm in a hard part, which I would rate a 2, but I'm
seeing a surgeon in 2 weeks. So I'm hoping another surgery will have me creeping up in my score!!
Posted 7/3/2011 1:59 AM (GMT 0)
I hope you feel better soon. Do you find that you use this forum less when you are feeling well?
Posted 7/3/2011 2:47 PM (GMT 0)
Hopeful04 up untl about a month ago I was in remission, and I have been on this forum for 6 yrs. I have learned alot here and met many friends here and thats why I stay around. Alot do get feeling better and leave the forums. Its up to you. I learn something new hear all the time, so I like to stick around.
Posted 7/4/2011 3:33 AM (GMT 0)
I stick around too, through good and bad. I just love everyone on here, I couldn't leave!!
Posted 7/4/2011 4:31 AM (GMT 0)
I would say I was below 5 the last year or so but am 8-9ish now... I don't think a 10 is possible but you can feel good.
Posted 7/4/2011 6:44 PM (GMT 0)
Before I had surgery last nov. I would say my qol was about a 3 or 4, now it is mostly an 8. It would be higher but I have other health issues (auto immune, arthritic) that may or may not be related to the colitis.
Posted 7/4/2011 11:37 PM (GMT 0)
If you're talking Crohn's only, I would say my QOL is about a 4 or 5 currently. Somebody else in my shoes might rate it higher, 'cos to be honest it could be a lot worse, but I have always been an expert at seeing the cloud instead of the silver lining <_<. Also, I care deeply for food but I can't eat freely the way I used to, because Crohn's has wrecked my digestion. What tends to wear me down the most is the fact that it's chronic. I never get a break from it because I never have remissions. But on the other hand I have side-stepped practically all the major complications that come with Crohn's: fistulas, strictures, joint pains, etc. So, meh. In some ways I'm lucky; in some ways not.

Taking into account everything, my QOL is probably around the 6 mark. Doesn't sound marvellous maybe, but believe me when I say it wasn't too long ago that I would've rated it a 0 or 1. Things have got better; it's just a matter of avoiding sliding back into sheer crapsville >_>
Posted 7/5/2011 6:32 PM (GMT 0)
Sheer crapsville, was that pun intended? I sure hope so! LOL! Yeah, I've been in sheer crapsville for a while now, trying to catch a bus outta the place. I think I'm about a 6 or 7 for now and I have hope that the Welchol is going end my incontinence problem from having my gallbladder removed. I'm currently struggling with horrible joint pain hoping we find an anwer to end it soon. It may mean having another Colonoscopy or doing the pill cam, I don't know, I'm just so sick of being sick right now, so I feel your pain. I guess I try to remember that these struggles and trials I'm having with this disease are possibly mercies really, cuz it could always be a lot worse.
Posted 7/12/2011 9:29 PM (GMT 0)
My quality of life was about a 2 or 3 earlier this year, but since recovering from surgery I'd say it's at a 9! I feel amazing! My kids are amazed at the difference. They knew that I was too tired and in too much pain to go anywhere, play, cook dinner, etc. Now I think I have almost as much energy as they do.
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