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10-27-2011, 11:01 AM   #1
JamieLee80
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New to everything

Hello, so this is my first forum, first time telling my story and pretty much first time admitting I am sick, so Im not really knowing what to expect but here goes. I am 31 years old and found out I have Crohns a year ago. I am told that I have had it since I was 14 but was misdiagnosed. I was also told that surgery is not an option for me as I have it at a cellular level (does that make sense to anyone?) My old dr told me that since my crohns moves around too much surgery is pointless and will not fix the problem. I say "old" dr because I am currently without a dr as I have changed jobs and insurance. Ive read a lot about crohns and it seems like I am supposed to have horrible stomache aches, diahrea etc but my biggest problems are bloating, achiness throughout my whole body, rashes, vision problems, mouth and throat issues and yes stomache pain, i dont have the bowel issues that seem to dominate all the reading materials regarding crohns that I have seen. I am also overweight and cannot seem to lose it. If I eat healthy I feel like crap, if I eat bad I feel like crap, basically i constantly feel like crap! lol and am very very tired all of the time, the smallest tasks take a tremendous amount of energy, i have a 7 year old son and a full time job and my life has more stress than i can describe. So...thats me thats my story...i need help
10-27-2011, 11:52 AM   #2
xJillx
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Hi Jamie Lee and welcome! Every Crohn's case is different, and we all experience different symptoms. Granted, most deal with bowel issues whether it be D or constipation. So, it probably took you so long to get a diagnosis due to the lack of bowel issues.

Are you currently not taking any treatment being that you recently switched jobs & insurance? As soon as your new insurance kicks in, I hope you plan on meeting with a GI to does medication options. I think starting a new treatment is you best bet at feeling better.

And try your hardest to destress! Pick up a new hobby or try yoga. Stress will make your symptoms worse. Hang in there!
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10-27-2011, 12:00 PM   #3
Astra
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Hiya Jamie
and welcome

I agree with Jill, be a good idea to get checked over, blood work done and a meds regime.
A lot of peeps on here have had surgery, either a resection or more.
I've never had any, yet! But I think the doc probably means that surgery can cause scar tissue = strictures etc
Any surgery will cause scar tissue, either inside or out.
Hope you get the insurance fixed, something we're grateful for over here, good ol NHS!
And get your vitamin B12 checked too, this could be contributing to your fatigue.
Lotsa luv
Joan xxx
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10-27-2011, 12:06 PM   #4
JamieLee80
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My insurance is back up and running and I have called my old GI but he currently has no appointments until February, other than him I have calls into 2 different crohns and colitis centers here in the city and a few other GIs, its a waiting game for now. I was on Pentasa and Endicort, pentasa made me shake like crazy and I am happy to be off of steroids! I would love to start yoga again and swimming for sure, just so utterly exhuasted im finding it hard to stay motivated even at work. Thank you for your advise I dont feel so much alone anymore
10-27-2011, 02:49 PM   #5
Del
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Hello and welcome to you Jamie Lee..
There are some symptoms we have in common with some but as said it can be different to each individual. We are a hard bunch to stereotype...
Low energy could be CD related or it could be diet related as well..
To much simple sugars in your diet can lead to fatigue...need to strike a balance between complex sugars and simple sugars..
Glad you do not feel alone any more...
10-27-2011, 04:15 PM   #6
LindaS
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Welcome Jaime Lee.

If you can find a doc that specializes in IBD, I'd recommend it.

I also suffer from extreme fatigue. As Del stated, it could be the Crohn's or it could be diet or a combination of the two.
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10-27-2011, 04:28 PM   #7
Nerple
 
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My insurance is back up and running and I have called my old GI but he currently has no appointments until February, other than him I have calls into 2 different crohns and colitis centers here in the city and a few other GIs, its a waiting game for now. I was on Pentasa and Endicort, pentasa made me shake like crazy and I am happy to be off of steroids! I would love to start yoga again and swimming for sure, just so utterly exhuasted im finding it hard to stay motivated even at work. Thank you for your advise I dont feel so much alone anymore
Welcome to the boards. Which GI doc had you been using? I go to Dr. Nezhad at Lahey Peabody and have been happy with him.
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