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03-19-2016, 07:38 AM   #1
Rosie2015
 
Join Date: Mar 2016
Location: United Kingdom
Flare up symptoms

Hey I am wondering what people's thoughts are. I have been in remission for 5 years after a bowl perforation I was treated with infilximab which worked. However I became allergic to it and it was stopped. However I remained symptom free and medication free.
Now 5 years later, since the last month I have been noticing symptoms. Wondering could the Chiron's be back?
When you have flare do you have diarrhoea every day, I seem to have a few bad days then can be OK for a few days? On the bad days it seems Crohn's like to me.
I have also been getting dull pains where I had the perforation, anyone else experience this kind of pain, know what it is, it comes and goes.
It's been a while since I've had to think about this and feel anxious. My IBD nurse isn't back until Tuesday.
Thanks for reading.
03-19-2016, 08:14 AM   #2
stylinmama
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Join Date: Jun 2010
Location: Saskatchewan

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Have you have another scope since your last one? The infalmmation can be there for years without you having any symptoms, then it just gets bad enough that symptoms start. Sorry you're having issues. 😞
03-19-2016, 08:23 AM   #3
Rosie2015
 
Join Date: Mar 2016
Location: United Kingdom
No, all I've had is 5 minute catch ups with my IBD Nurse I've been really well. Just trying to figure out if my symptoms are Crohn's related, seems random after so long. Thank you
03-19-2016, 11:20 AM   #4
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Hi, I had a similar situation to you - my bowel perforated but I had to have an operation to sort it out. Afterwards, my pathology report said there was no evidence of crohn's and it was my appendix, which had burst. I therefore was told to keep an open mind, and watch and wait and see.

For four years I had no treatment and felt well. Then around last year I started noticing a very minor twinge type pain where the perforation was. I kind of ignored it because it was so minor. After about a year it became a little less minor so I was referred back to my GI. I had a colonoscopy performed which showed ulcers at my terminal ileum. I have now officially been diagnosed with Crohn's and have started treatment. I would definitely recommend you having a colonoscopy to see what is going on.

As you have Crohn's your symptoms sound like they could be related. Clearly the fact that when I had a colonoscopy and I had ulcers, my inflammation must have been simmering for maybe a year or so, without really giving me any symptoms. Thank goodness I went when I did or who knows whether I would end up needing another surgery to correct another perforation. I wish I had just gone when I first got those niggling symptoms. I did a fecal calproctin test and this only read at 65, which really wasn't too bad but the colonoscopy showed a different story.
__________________


2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
03-19-2016, 11:27 AM   #5
ronroush7
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Location: vienna, Virginia

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Have you have another scope since your last one? The infalmmation can be there for years without you having any symptoms, then it just gets bad enough that symptoms start. Sorry you're having issues. 😞
I agree.
03-19-2016, 11:38 AM   #6
scottsma
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Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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It's important to get this seen to.Even if it turns out to be nothing,you are obviously worried enough to post on the forum.
Many people do have years of remission,but crohns is a sneaky disease,and can rear it's ugly head at anytime.The sooner you get it sorted,the easier it will be to get it under control.Please keep us updated.Your story will help people in a similar situation.Best wishes.
03-19-2016, 12:47 PM   #7
Rosie2015
 
Join Date: Mar 2016
Location: United Kingdom
Thanks everyone that is really good advice. I never knew it can brew with no symptoms, I'll definately get seen to. I did have a stool test, I've just remembered, few months back raised levels but not high, is that what would be a calproctin test?
It was only when my bowl perforated they did the crohns test on the removed sections that I was officially diagnosed.
03-19-2016, 01:25 PM   #8
ronroush7
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I know that the calprotectin test is with your stool. I am not sure if that is what they did here.
03-19-2016, 02:54 PM   #9
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Thanks everyone that is really good advice. I never knew it can brew with no symptoms, I'll definately get seen to. I did have a stool test, I've just remembered, few months back raised levels but not high, is that what would be a calproctin test?
It was only when my bowl perforated they did the crohns test on the removed sections that I was officially diagnosed.
Hi Rosie, yes this would be a fecal calproctin test. The normal level is under 50, and mine was 65, so quite marginal. To put this in perspective I have seen people on this forum state they have had results over 1500. The colonoscopy was what really revealed what was going on for me.
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