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Crohn's Disease Forum » Your Story » New here and still awaiting further tests :-/


08-21-2016, 07:25 AM   #1
Dave1988
 
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New here and still awaiting further tests :-/

Hey guys my first post so go easy on me. Just thought it would be nice to join and speak with people going through simular things to me as most of you would have probably experienced, many friends and family ect just dont seem to understand the stress and emotions of going through daily pain..ups n downs and know what we are going through.

A bit about myself...im 28 from wales, uk..
The last 6months or so i was experiencing severe stomach cramping/toilet issues and back problems. I had scans on my back and had a slightly prolapsed disk so had physio for a while and blamed my stomach problems on my back...this was previously being told i could of had caudia equinome syndrome but was ruled out. Then about 3-4 months ago the stomach pains were getting worse..started losing weight..struggling to eat 2 small meals a day when im used to eating 5meals a day (ex bodybuilder)..had severe swelling in my knees and ankles making it hard to walk and work..extreme fatigue and difficulty sleeping..constantly sweating and red patchy skin and eyes.

Luckily ive got private healthcare..so seen a specialist and had a flexisigioscopy which just examines the first half of the large intestine..they found nothing..
Then a few weeks later had a mri scan and found somekind of blockage on the ileum..the part where the small and large intestine connect.. this was just last week. The so called specialist doest know what it is or could be..so now ive been referred to another specialist and goto wait for a proper colonoscopy..which i think i should have had done in the first place to save all this time and messing around!!
As you all probably experienced its put a great deal of stress on my relationship ect but my partner has been incredable!! I just feel so guilty ive put her through all this!!
As im guessing most of you have done me and my partner have joined many sites and done many hours of research and it seems i have many symptoms of ileocolitis crohns?? Anybody else got any experience of this?? Sorry its been such a long post!
08-21-2016, 07:37 AM   #2
scottsma
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Hi Dave and welcome.As you've experienced ,diagnosing this damned disease take time.
Hopefully,after your colonoscopy you'll get positive results and get meds that will put you on the road to remission.Sometimes it's trial and error finding one that will work for you.
We all understand the stress and upset IBD causes and it's good that your partner is so supportive.I can't help with the ileocolitis crohns,but I'm sure someone will be along soon who can.
08-21-2016, 08:10 AM   #3
MissLeopard83
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Have you been tested for autoimmune disorders? The swelling, redness, and fatigue sound like symptoms of Rheumatoid Arthritis. Here, in the states, the doctors test Rheumatoid Factor, Antinuclear Antibodies (ANA), and sedimentation rate. My GP tested these on me before I started seeing a GI doctor since RA runs in my family. She was also testing for lupus. RA can affect your appetite, as well.

http://www.arthritis.org/about-arthr...s/symptoms.php

Hope you get some answers soon.
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Severe IBS-M with gut dysmotility and lactose intolerance; Celiac disease
08-21-2016, 09:04 AM   #4
Dave1988
 
Join Date: Aug 2016
Location: Cardiff, United Kingdom

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Hi Dave and welcome.As you've experienced ,diagnosing this damned disease take time.
Hopefully,after your colonoscopy you'll get positive results and get meds that will put you on the road to remission.Sometimes it's trial and error finding one that will work for you.
We all understand the stress and upset IBD causes and it's good that your partner is so supportive.I can't help with the ileocolitis crohns,but I'm sure someone will be along soon who can.
Thanks very much..will update in the next few weeks hopefully!!
08-21-2016, 09:08 AM   #5
ronroush7
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Welcome. I hope the best for you
08-21-2016, 09:14 AM   #6
Dave1988
 
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@missleopard

Hi thanks for your response.. in the uk we have the nhs which would have taken many months..so i went private and they havent mentioned anything about autoimmune disorders ect...but i did keep my original nhs appointment just incase which was about 2weeks ago and she did mention about seeing a rheumatologist. So i think i will definately follow up with that.
The pain can get quite instense sometimes as i work 12hour shifts driving heavy machinery too which can be hard on the spine and legs. Currently just got buscopan and 30/500 cocodamols for the pain ect but doesnt seem to be doing too much. As an ex bodybuilder id like to think im a bit clued up on vitamins ect and do plenty of research on everything...so last few weeks been using 2.5g of tumeric a day, 7000ius of vitamin d3 and a good multivitamin
08-21-2016, 10:37 AM   #7
scottsma
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Dave,try to use Turmeric with bioprine (pepperine) as it maximises the strength about 200 fold.
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