Tips for Managing Life with an Ileostomy

  1. Select a toilet and if you can keep it for your own exclusive use      .
  2. Avoid a carpeted floor in the bathroom, if possible due to potential mishaps that could happen.
  3. Keep your toilet spotlessly clean as you will need to get up close and intimate with your toilet several times each day.
  4. Keep plenty of toilet paper and un-scented wet wipes readily available near the toilet.
  5. When emptying the bag, always finish off with a wet wipe to ensure that there are no spills and to avoid odours.
  6. Wear loose baggy shirts and jumpers to avoid putting pressure on the abdominal scars, the stoma and the stoma bag.
  7. In order to avoid feeling any pain and pressure from a belt buckle pressing on a lower abdominal wound, wear a loose, stretchy, soft belt. Also, move the belt around so that it fastens at the side rather than the front of the trousers, over the incision.
  8. Early on in the recovery, you may find it difficult to bend over to reach your shoe-laces. So instead of laced shoes, wear simple slip-on shoes that don’t require you to tie your laces. I used an old pair of “Vans” or bulky training shoes with the laces tied loosely.
  9. At the beginning of recovery, you may find a shoe-horn useful for slipping your shoes on and off.
  10. Remember to change the ileostomy bag every 2 days or 48 hours. If you leave it on longer, you can risk leakages, soreness, discomfort and excoriated skin. Avoid the bag bursting at all costs!
  11. Do not let the ileostomy bag overfill and balloon up as this might loosen its seal on the skin. Also, if an overfull bag wakes you in the night, get up to empty it and do not go back to sleep until you have done so.
  12. Take care of what you eat. Avoid the things that can make the effluent watery, gassy or just run through rapidly. For me, the foods to avoid include milk, yoghurt, ice-cream, chocolate, curries and spicy foods. The food that makes the effluent thicker and the transit time slower include white bread and wheat products such as biscuits.
  13. Also, remember do not eat late in the evening. That later you eat, the more you’ll find yourself waking up in the night to empty the bag. I found that eating at around 6:30 pm worked fine for me.
  14. Empty your bag right before going to bed as this reduces the chances of you having to get up in the middle of the night to change or empty the bag.
  15. Eat your larger meal at lunchtime and not in the evening. This reduces the chances of needing to get up at night to empty your bag.
  16. Keep a towel close at hand during the night, just in case of disasters where the bag may leak.
  17. When travelling, never be without your ileostomy bag changing kit and a spare bag ready to use.
  18. When travelling and going out for any length of time, empty your bag before you go.
  19. When out, keep a check on the state of your bag. Plan your movements so that you know where the nearest toilet is.
  20. Consider sleeping in a loose tee shirt and boxer shorts or pyjamas to be more comfortable.
  21. When changing your bag, make sure that you rinse off and thoroughly dry the area around the stoma where the new bag has to stick.
  22. Ensure that you rinse off the alcoholic spray used to release the adhesive patch and any residue from the wet wipe before attaching the new bag.
  23. You may need to shave the hairs from the skin around the stoma site perhaps once a month. Do this carefully. When using the shaver hold a cardboard toilet roll tube over the stoma will help to pull it away from the hairs and protect it from the razor.
  24. When shaving the hairs from around the stoma ensure that you thoroughly wash off any shaving foam as this may interfere with the stoma bag sticking back to the skin.
  25. The size of the stoma may change over the first few months. Regularly check whether the size of the hole in the bag should be reduced. The hole should be perhaps 1mm larger in diameter than the stoma. If it is too large the surrounding skin may become inflamed and excoriated. If too small then the pad might not stick securely and a leak may occur.
  26. If the stoma becomes sore and uncomfortable, try changing the bag more frequently.
  27. If the area of skin around the stoma becomes sore and red, check that the hole in the ileostomy bag is not too large. Also, try using a narrow smear of Sudocrem nappy rash cream at the junction between the skin and the stoma. Be careful as if smeared too widely this will interfere with the adhesion of the bag to the skin.
  28. A bonus tip – If you are fortunate enough to have a temporary ileostomy, don’t do as I do and keep badgering your surgeon as to when he aims to reverse and close the stoma!

Disclaimer: The views expressed in this article are not necessarily those of myIleostomy.com or the author. The information is provided for general background reading only and should not be relied upon for treatment. Advice should always be taken from your own registered medical practitioner for individual circumstances and for treatment of any patient in any circumstances.  No liability is accepted by myIleostomy.com or the author in respect to the information provided for any reason or as a result of treatment in individual circumstances.