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02-16-2016, 09:12 AM   #1
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Worried

Hello, I have recently been diagnosed with Crohn's disease although I had a bowel resection in Dec 2011. This was misdiagnosed as a burst appendix. The reality was though that I needed the surgery due to a perforation and abscess.

Since my diagnosis I have been experiencing a lot of worries and fears for the future. I have been told my Crohn's is in my small bowel/ terminal ileum. I have also been told that the surgeons did not take much during my resection and that I am left with 4 metres of bowel. They also said I am still able to absorb b12 according to blood tests. I am therefore, confused because I have read that the average bowel is around 6 metres, so I am concerned that actually they must have taken a lot. I am worried if I need more surgery in the future and they take much again then I am going to have short-bowel syndrome. I really can't lose any more bowel.

A recent colonoscopy showed ulcers in my terminal ileum. I did not have any symptoms though until about 4 weeks ago I started getting pain on my right side. The pain is mild and I do not need to take any pain relief medication, but the fact that it is there makes me worried that the inflammation is severe and that I may need surgery again. I have been on Budesonide for 19 days so why is this pain still here? I am worried this steroid is not working and perhaps the inflammation is too severe and if they are not working than the inflammation may be steadily worsening by the day. I really can't bare to go back to have surgery.
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History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet

Last edited by eleanor_rigby; 02-16-2016 at 10:37 AM.
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