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

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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.

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)

75mg azathioprine
Gluten-free diet

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

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