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Crohn's Disease Forum » Support Forum » Undiagnosed Club » New here and still awaiting further tests :-/


08-21-2016, 06:10 PM   #1
Dave1988
 
Join Date: Aug 2016
Location: Cardiff, United Kingdom

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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, 07:39 PM   #2
Clash
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I'm so sorry they started with a sigmoidoscopy. I truly think those are useless. It sounds like they are on top of things and hopefully the colonoscopy will bring you some answers.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-24-2016, 10:42 AM   #3
valleysangel92
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Hello and welcome to the forum, I'm from wales too! Not that far from you actually.

I think you are right that a proper colonoscopy would probably have been a better place to start, in my experience they usually do a scan to find the location and then a scope to see the severity but I assume its different with private care. Hopefully you won't have too much of a wait to get the scope, when you do have it, insist they take biopsies as these can be vital in determining the cause and depth of the inflammation.

I had Illeoceaceol crohns, which would be similar to what you are talking about, mine was at a stage which needed surgery so I had the worst removed, unfortunately it returned quite quickly and I am now classed as having neo-terminal ileum Crohns.

Please don't apologize for your post being long, the more information we have the better we can help you and honestly there's nothing we haven't heard before. We are all in the same boat. There is no such thing as a silly question and we will always do what we can to support you.

I understand the feelings of guilt, I often feel bad that I cant do more with my partner, but it isn't your fault, you didn't ask to get sick and you have no control over it. It does have an impact on our relationships and it will show who you can really rely on, but it is really not your fault.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-24-2016, 11:08 AM   #4
Dave1988
 
Join Date: Aug 2016
Location: Cardiff, United Kingdom

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Hi valleysangel small world lol..thanks for a nice post! Id have guessed with a usename like yours you might have been from wales lol.

Rang my insurance company today and they are looking to maybe get me to a different hospital now for a colonoscopy because the last one seemed so poor. So hopefully find out more tonight or tomorrow!

The more ive read forums and sites i suppose i should count myself lucky..even though the last couple of months have felt like a lifetime i see alot of people taking sometimes years to get diagnosed :-(
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