Question: 

I am a patient suffering from severe bowel issues. I’ve undergone extensive testing and don’t have a diagnosis for the severe alternating diarrhea and constipation I experience. I’ve exhausted standard treatments including OTC and prescription medications, lifestyle changes, diet, and alternative therapies including acupuncture and hypnosis. As a result I am unable to maintain a healthy weight and have suffered resulting fertility problems. My IBS-C limits my life and impacts my happiness so severely that I’d like to explore ileostomy with a stoma to manage. I was wondering if you could help connect me with a doctor who could provide insight and a next step? Or any other advice? Thank you so much for any help you can provide!

Response:

Diagnosing is complex for the bowel conditions. The research shows diagnosing is complex and not always determinant of a diagnosis. Below are stats on diagnosing bowel conditions taken from https://gut.bmj.com/content/gutjnl/68/Suppl_3/s1.full.pdf

3.1.2 UC versus Crohn’s disease
In 5–15% of IBD patients, endoscopic and histological assessments cannot distinguish between Crohn’s colitis and UC, and these patients are labelled as IBD-unclassified (IBD-U), or if features are still indeterminate after colectomy histology is assessed, described as indeterminate colitis.15–17 IBD-U is more common in children than adults.18 In a small proportion of UC patients their diagnosis is later changed to IBD-U or Crohn’s disease.19–2

As it takes a great deal of time to get a consult from another surgeon, my colleagues suggest going back to the surgeon you are working with. Adovocate firmly that your quality of life is greatly compromised and ask what are the next steps/options are. If you feel strongly at getting a second opinion – for sure – advocate for yourself – you do have the right for other surgical consults – all the downtown hospitals do have specialist in this field.

There is a network of specialized nurses in wounds, ostomies and continence care. The following website has NSWOC nusrses who have clinics. It might be a great resource for you to get in touch with one of them to see what they may be able to suggest. https://memberscaet.ca/find.phtml

I wish you great success in finding a better quality of life in the near future!


Lauren Wolfe RN, BSN, MClSc (WH), NSWOC, CWOCN

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