Becoming more independent

Becoming more independent

Living with inflammatory bowel disease (IBD) can make the thought of leaving the house — whether for work, education, or even just to go to the shops — a little daunting. There are a number of things you can do to help reduce stress and anxiety, enabling you to be more confident when out in public for long periods of time, or even to take a holiday! IBD shouldn’t stop you from doing the things you like.

airport

Leaving the house

Pack some supplies: IBD can be unpredictable at times, which means uncomfortable symptoms can occur unexpectedly. Make a ’just in case’ kit for those emergency moments. Items you might want to consider packing include:

  • Toilet paper or wet wipes
  • Antibacterial hand gel
  • Clean underwear
leaving-the-house

Work and education

  • Employers and educational establishments have a responsibility to try to accommodate any reasonable health-related requests. If you are a student, you might find it useful to let your teachers or student services know about your requirements. Similarly, if you are in employment, you could inform your line managers or human resources. In each case, they may be able to make provisions for flexible working arrangements, deadline extensions etc.
  • If you are in an office, see if you can be seated in an area with easy access to the bathroom, or sit near the door of your lecture theatre/classroom

work-and-education

Travelling

  • When travelling abroad, use only bottled water for drinking, brushing your teeth and washing food
  • Avoid ice cubes in drinks, as these are often made with local water supplies
  • Avoid all street food
  • Do not eat any raw or undercooked foods


travelling

References

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McCausland KL, White MK, Guthrie SD, et al. Light chain (AL) amyloidosis: the journey to diagnosis. The Patient-Patient-Centered Outcomes Research. 2018;11(2):207-16.
Cancer.Net. Amyloidosis: Symptoms and Signs. Accessed May 26, 2022.
Mayo Clinic. Amyloidosis overview: symptoms and causes. Accessed May 26, 2022.
National Organization for Rare Disorders. Amyloidosis. Accessed May 26, 2022.
D'Errico S, Mazzanti A, Baldari B, Maiese A, Frati P, Fineschi V. Sudden death in lambda light chain AL cardiac amyloidosis: a review of literature and update for clinicians and pathologists. Int J Clin Exp Pathol. 2020 Jul 1;13(7):1474-1482. PMID: 32782665; PMCID: PMC7414507.
Mayo Clinic. Amyloidosis diagnosis and treatment. Accessed August 20, 2020.
Lousada I, Comenzo RL, Landau H, et al. Light chain amyloidosis: patient experience survey from the Amyloidosis Research Consortium. Advances in Therapy. 2015;32(10):920-928.
Merlini G, Dispenzieri A, Sanchorawala V, et al. Systematic immunglobulin light chain amyloidosis. Nature Review Disease Primers. 2018;4(1):38.
Hasib Sidiqi M, Gertz MA. Immunoglobulin light chain amyloidosis diagnosis and treatment algorithm 2021. Blood cancer journal. 2021;11(5):1-9.