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Crohn's Disease Forum » Your Story » Waiting for a diagnosis...going nuts!


04-20-2014, 11:38 AM   #1
Eve
 
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Waiting for a diagnosis...going nuts!

Hi everyone.

Iíve been in a bit of a mess this year so far. Since January Iíve been experiencing chronic pulsating, shooting pains under my right rib cage, burning sensations in the middle of my stomach and general awfulness. In terms of my BMs, I tend to feel constipated for a few days then Ďit all comes outí. In January I was in and out of hospital - 3 times A&E with severe d/v, chronic pains in my right side as well as being admitted for 4 days for a (suspected) kidney infection. Thankfully I am feeling better than I was, but I still have the spasming pain on my right side, exhaustion and general feeling rubbish.

Iíve had scans of my gallbladder and liver, which have come back normal (except minor fatty liver). I have also been given Ferinject iron infusion to treat the bad anaemia, which has helped my legs feel stronger. I had endoscopy and colonoscopy about a month ago, where they found an ulcer in my duodenum as well as inflammation/ulceration dotted around my lower bowel. The consultant isnít entirely sure what this means, as I am exhibiting most of the symptoms of Crohn's bar the excessive bloody diarrhoea, so I am being referred to another specialist.

Where Iím pleased they are being thorough and tentative about diagnosing me, it just feels like another set back. Feel like I am stuck in limbo. Meanwhile I am still getting the nasty spasming pain which is relentless and I am absolutely exhausted. I can now do very small bouts of exercises, but it leaves me wrecked and completely drained for the rest of the day. Am just about managing the pain with cocodamol and/or dihydracoedine.

All in all, feeling pretty miserable and lonely. Could do with some advice/support!

Thanks in advance for reading.

Eve
x
04-20-2014, 11:43 AM   #2
Ness1993
 
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Hi Eve,

We have a very similar story. I never had excessive blood either but i finally got diagnosed with colitis about 3weeks ago.

Hopefully you will get some closure soon
04-20-2014, 12:18 PM   #3
Eve
 
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Hi Ness,

Thank you so much for the reply. It's nice to know I'm not alone. Hope the diagnosis has at least meant you can get started on some meds. How are you feeling now? x
04-20-2014, 01:40 PM   #4
Ness1993
 
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I was feeling very alone and over whelmed too but hopefully this forum will give you and me some reassurance .

Been on medication since i was diagnosed. Only problem is I am not feeling any better but they say it can take a few different tablets until you get the right ones.
Sometimes its nice just to know you are not the only one going through it.

Hope your feeling a bit better soon
04-21-2014, 09:32 AM   #5
Eve
 
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Yeah definitely. I've been browsing through and sounds like there are some similarities with symptoms and hospital experiences other people have had. Just miserable isn't it?

I guess it's trial and error with the meds, is it also a case of them making you feel worse before better? What meds are you on now, do you mind me asking?
04-21-2014, 11:22 AM   #6
Ness1993
 
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It can get very miserable. The best thing i find it just to try to have a laugh about it as much as possible. Sounds silly, but me and my fiance always jokes about the toilet.

I am on pentasa and omeprazole. Was on prednisone and amitriptyline but no longer.
04-22-2014, 09:29 AM   #7
Eve
 
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Not silly at all, having a good sense of humour will get you through a lot in life! we call my 'belly' Brenda, so plenty of jokes to be had there.

I'm on a hefty dose of lanzoprazole to try and get rid of this duodenum (spelling?!) ulcer. How is the pentasa treating you?
04-22-2014, 12:22 PM   #8
Ness1993
 
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Well iv been back to my GP as this flare up is not wanting to go away. Was put on steroids but still no luck. Phoned my IBD nurse today and he has decided to add enemas? A bit worried about it to be honest but i will do anything to get rid it. He said because iv suffered with it for years before a diagnosis it may take a while to calm down. Fingers crossed.
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