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Crohn's Disease Forum » Your Story » New to the group - my story


08-16-2016, 01:41 PM   #1
kylepeabody1
 
Join Date: Aug 2016
Location: Grand Rapids, Michigan
New to the group - my story

Hello, My name is Kyle and I am 25 years old. I was diagnosed with Crohns disease in 2011 but experienced first symptoms in 2008/2009. Initial GI thought it was celiac until biopsy and blood work determined Crohns. Currently on humira (2x/month), methotrexate (1x/week), folic acid daily and citricel (fiber supplement up to 3x/day). GI has also recommended a lower fiber diet and NO fruits and veggies. Currently still have symptoms 3-4x per week during flare ups that include bloating, constipation, cramping and EXCRUCIATING lower back pain. Contemplating resection surgery to remove damaged bowels.
08-16-2016, 01:49 PM   #2
ronroush7
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Welcome , Kyle. Is this something your doctor has recommended? Has the Humira helped with your symptoms?
08-16-2016, 02:16 PM   #3
kylepeabody1
 
Join Date: Aug 2016
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Yes, my GI prescribed the Humira. When I first started it, it seemed to be my "miracle drug" but with the # of times I still experience flare ups and the severity of the flare ups, I am not so sure any more.
08-16-2016, 02:20 PM   #4
ronroush7
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I don't know but it may be time to switch to another biologic or surgery. I would definitely consult with your doctor.

08-16-2016, 02:24 PM   #5
kylepeabody1
 
Join Date: Aug 2016
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I have an appointment with him on 9/21. That's the soonest available. I wish I could get in sooner to discuss the surgery but I guess it is what it is.

I also noticed a big difference when I started the low fiber/no fruits and veggies diet + citricel. However, I feel irreversible damage has been done to my bowels from misdiagnosis from the beginning that complicate digesting so I feel like surgery would give me a clean slate now that I'm receiving treatment.
08-16-2016, 02:28 PM   #6
ronroush7
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I avoid most fruits and vegetables myself. Could you call your doctor's office and ask if there are any cancellations if they can see you sooner?

08-16-2016, 02:43 PM   #7
kylepeabody1
 
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Yep, I have tried. Nothing available sooner.
08-16-2016, 02:45 PM   #8
ronroush7
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I am sorry.

08-16-2016, 02:45 PM   #9
kylepeabody1
 
Join Date: Aug 2016
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It is what it is...just gotta keep dealing with it I guess.
08-17-2016, 10:45 AM   #10
dejavucandace
 
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I also deal with a lot of lower back pain. That and the nausea/fever is almost worse than the cramps. But I haven't been put on any medication yet except some suppositories for the inflammation. I too worry that the damage has already been done in the years I was not diagnosed. M preference would be no surgery but if it would give me a better quality of life you really do think twice. Since diagnosis I have removed fruit and veggies also. Not sure there is much improvement though.
08-17-2016, 10:48 AM   #11
ronroush7
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I also deal with a lot of lower back pain. That and the nausea/fever is almost worse than the cramps. But I haven't been put on any medication yet except some suppositories for the inflammation. I too worry that the damage has already been done in the years I was not diagnosed. M preference would be no surgery but if it would give me a better quality of life you really do think twice. Since diagnosis I have removed fruit and veggies also. Not sure there is much improvement though.
I had a resection six years ago. The surgeon said my condition had been like that for a while.

08-18-2016, 10:17 AM   #12
kylepeabody1
 
Join Date: Aug 2016
Location: Grand Rapids, Michigan
I also deal with a lot of lower back pain. That and the nausea/fever is almost worse than the cramps. But I haven't been put on any medication yet except some suppositories for the inflammation. I too worry that the damage has already been done in the years I was not diagnosed. M preference would be no surgery but if it would give me a better quality of life you really do think twice. Since diagnosis I have removed fruit and veggies also. Not sure there is much improvement though.
What is your lower back pain like? For me, it literally puts my on my knees. Its so bad to the point that I thought I could have something wrong with my pancreas, which I plan to ask my doctor about and see if I can get some blood work done to determine if it could be my pancreas.
08-18-2016, 10:18 AM   #13
kylepeabody1
 
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I had a resection six years ago. The surgeon said my condition had been like that for a while.
Do you think your resection has made you feel significantly better?
08-18-2016, 10:25 AM   #14
ronroush7
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When I first had the surgery I was still having issues with the Crohns Disease. My gi has said my case was complicated. I have never grasped why he said that. Everyone is different.
08-18-2016, 01:41 PM   #15
dejavucandace
 
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Kyle...it isn't that bad for sure but it can be quite debilitating at times. In fact at one point 15 years ago during a hospital stay they x-rayed my lower back. Of course I hadn't been diagnosed back then and all my symptoms were basically a mystery. So in fact I have been dealing with this back pain (and disease) for 15 years on and off. But I feel like it gets worse the more issues I'm having in my belly. Clearly, to me anyway, its correlated to the inflammation. I hope you can get help with your pain soon.
08-23-2016, 10:41 AM   #16
kylepeabody1
 
Join Date: Aug 2016
Location: Grand Rapids, Michigan
Quick update: My doctor has put my on milk of magnesia to help with digestion and constipation. So far, it has done wonders for me and I have somewhat normal bowel movements. I take 4 tablespoons before bed. Been on it for 4 days and feel great thus far.
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