Crohn's Disease Forum » Tests for IBD » Struggling to get a diagnosis need advice

01-28-2016, 09:54 AM   #1
Join Date: Jan 2016
Struggling to get a diagnosis need advice

Im 22 and have struggled with what I thought were IBS symptoms which were worsening for a few years until September last year when I was really finding it difficult to manage the constant pain and embarrassment of using the toilet 15 times a day and around this time the vomitting started. I went to see my GP who straight away refered me for a colonoscopy which I had the following week (due to my father having bowel cancer before age 30) My results came back normal apart from what looked like a wall of burst blood vessels on one side of my colon, I was sent back to my GP to have further tests full blood count & calprotectin (bloods came back clear and calprotectin came back slightly high but not alarming) and during cross over of paperwork the woman who preformed my colonoscopy forgot to add my recent slight weightloss and extreme nausea and vomitting to her write up of results and diagnosed me as having IBS and I was sent away with anti sickness meds and a bunch of immodium (was told to take over 8 a day)

The following 2 weeks of so were a nightmare especially managing work and symptoms I had started to become incontinent and the pain would knock me off my feet not to mention me finding blood quite a lot of it when going to the bathroom. I ended up being admitted to hospital the following week where I had full bloods taken again and was given cortisoids in A&E a hospital doctor came back within the hour with my blood results and informed me that muliple tests of my blood showed extremely high levels of imflammation and infection and that because of my symptoms he told me to prepare myself for either being diagnosed with Crohns or UC and that I was to see the GI as soon as one came in (It was a saturday evening) after spending the night in hospital on pain meds, steroids and antisickness meds I was sent on my way only a few hours later because a nurse had looked at my records and because my colonoscopy was clear there was to be no further action but that they would put me on the waiting list to see a GI because my symptoms were extreme for an IBS case.

I was never refered so went back to my general doctor (gp) and told him about the mistake who then said he would write a referal himself and I was to come back that afternoon to pick up the letter. I went back only to be told by his receptionist that after looking through results he actually would not be refering me afterall. To say I was devestated was an understatement. My symptoms are worsening and are really difficult to manage over the last 3/4 weeks I have had crippling pain, exhaustion, irritated eyes and skin, muscle weakness and joint pain, my vomitting has worsened, complete loss of apetite, dirreah so severe I can't leave the house, mucus also. I haven't lost much weight because im drinking milkshake supplements which I manage to keep down and although I have seen blood when going to the toilet it isn't reoccuring and hasn't been present for some weeks now.

I have worked out that there is a pattern with my symptoms (though I near enough always have very lose stools and muscle pains) that I tend to have 5 good days followed by 3 or 4 bad days and one terrible 24 hours to finish it off and that when I can eat it affects me terribly and makes my symptoms much worse afterwards.

I also have HS (Hidradenitis suppurativa) which seems to flare up and down with my symptoms which I have read can also be linked in with IBD?

Am I crazy? I know I don't have IBS or if I do there is something else making me feel so terrible and attackiing my body also. I keep questioning myself which I think is sending me into a depression, my loved ones at home have all seen the severity of my symptoms at its very worst and agree I am not going mad! And I find it so hard to explain my symptoms properly because there is so much going on.

Has anyone else had problems with diagnosis? Does it sound like IBD to you? Any advice when dealing with medical professionals?

Sorry for the long winded explanation any advice or help would be appreciated. Thank you
01-28-2016, 11:06 AM   #2
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JaimeM's Avatar
Join Date: Sep 2015
Location: United States, North Dakota

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Sorry you're going through all of this.. I had a terrible time getting a diagnosis as well and I work in the medical field. It's kind of heartbreaking to be in lingo. I didn't want Crohns either but just having an answer was medicine to my psyche. I basically just kept pushing my Family Dr saying I knew something wasn't right. I had a CT done that showed I had Crohns but my colonoscopy just said i had a tortuous bowel. I then had blood work showing my markers for an autoimmune disease were positive. Then had a capsule endoscopy and that showed Crohns. So that's how I got my diagnosis. I hope they can give you answers. Keep your head up and remember there are others like you. There are people in the undiagnosed group that I'm sure can relate to exactly what you're saying. Good luck!

This all took a few years.. After the CT and colonoscopy they told me I had IBS and didn't send me for further testing.. Told me to manage it by diet. I waited another year and a half before I did the lab work.

Last edited by JaimeM; 01-28-2016 at 12:58 PM.
01-28-2016, 12:34 PM   #3
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ronroush7's Avatar
I am sorry for what you are going through. Keep pushing until you get some answers. Best to you.
01-28-2016, 02:21 PM   #4
fuzzy butterfly
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fuzzy butterfly's Avatar
Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi so sorry you are having such a bad time. You really do have to whinge at the docs to get somewhere sometimes. Please push them to give you help. Be firm but polite. Say I am not prepared to put up with this pain etc any more!!! Please do something now. Or on those lines. I did n i got myself the treatment i needed. Best of luck. Hope you can feel better soon 💕
02-01-2016, 09:23 AM   #5
Lesleytlc's Avatar
Join Date: Jan 2016
Location: Newcastle upon tyne, United Kingdom

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My calprotien test came back ok too yet I'm have all the symptoms. I've had 2 sections of bowel removed in previous surgery after my bowel perforated and last year was in hospital with a bowel infection and inflammatory change in the right iliac fossa centred on right over also multiple adherent bowel loops. I know exactly how you feel it's awful being in pain and not being able to find out properly x
02-01-2016, 09:30 AM   #6
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ronroush7's Avatar
Last year, I was told besides Crohn's I have IBS. Since then , I had another enterography and now they are saying the Crohn's is active. It is hard knowing whether I should take Levsin for the pain or whether to credit it to Crohn's.


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