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08-26-2017, 01:25 PM   #1
Adyt
 
Join Date: Aug 2017
Location: United Kingdom
Newby needing advice please

Hi my name's ady. , I've had several years of having colonoscopy and having polyps removed also endoscopy finding hiatus hernia but no reason for my bloated stomach with severe cramps and horrible toilet experiences , I've got a genetic disorder called alpha 1antitrypsin deficiency and currently awaiting double lung transplant ,I'm also about to have gall bladder removed any day , question is I've had afeacal caprotectin level of 334 , I've been told for yes it's ibs but within a week I had CT scan with IV contrast an almost 3 weeks on haven't heard a thing ,I googled and sounds like ibd than ibs because of score plus my sister has Crohn's and just had ileum resection , is no news good news or is it a long haul thing ? Thanks ady
08-26-2017, 03:02 PM   #2
ronroush7
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Hi ,Ady. I would call and ask for the results.

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08-27-2017, 05:10 AM   #3
Adyt
 
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Thanks for your reply and sounds like you going through the mill ,I'm just wondering if faecal caprotectin level of 334 means a ibd route or an ibs , I'm an alpha 1 antitrypsin deficiency zz waiting for double lung transplant and currently waiting to have gall bladder removed ,now with all this stomach problems I'm wondering what's next!!!
08-27-2017, 05:36 AM   #4
ronroush7
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I would lean more towards ibd but I could be wrong.

08-27-2017, 06:00 AM   #5
scottsma
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Hi Ady and welcome.You've certainly got a lot on your plate just now eh? Your Calpro level does point to IBD and inflammation. 50/60 is classed as "normal".but yours is certainly not as high as it could be.Mine was 300+ and I was dx'd with crohns colitis after and earlier dx of proctitis.I had my GB removed 2yrs ago and have not had a problem.Waiting for result in the UK is a nightmare,sometimes up to 4-5 wks,but I tend to think "no news is "good" news.If it was "serious" I'm sure they are good at getting things moving.Keep us updated wont you.I hope your transplant takes place soon.
08-29-2017, 10:39 AM   #6
valleysangel92
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Hello, welcome to the forum, my you have a lot on your shoulders, I'm so glad you've found us.

Looking at what you've said, it is possible that you have an IBD like Crohns or UC, as generally a calprotectin score of that level is indicative of active inflammation, and therefore would mean IBS is less likely. With regards to the CT scan, its unfortunately not uncommon for results to take a while to come through, when I initially had my MRI I had a wait of over a month before I had any contact regarding the results, and that was with me chasing them up for a couple of weeks too. I would give it another week and then try and contact the department that did your scan as they should be able to tell you if the results have been processed and whether they've been seen by a consultant, and they should also be able to tell you who to contact in order to get the results.

In terms of whether this is good or bad news, I personally would call it a bit of both. The bad thing about IBD is that there is no cure, so this is a long haul thing, and there are certainly bad days. It can take some people a couple of years or so to find the right combination of treatments and to find what works for them in terms of lifestyle etc. The good thing is that there are treatments available which generally work well once the correct one has been found. Many people with IBD go on to lead a long and fulfilling life and manage to work, travel and have strong relationships.

I hope you get some results through soon and your transplant goes ahead in the near future. Please keep us informed and good luck.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

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Non CD meds - Gabapentin, paracetamol, ventolin
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