10 Things I Wish I Had Known Prior To My Ileostomy Surgery

  1. Opening the bag – All the nurses at the hospital fumbled around with opening the bag and it was just a pain. These pictures show how I open the bag without fumbling with it or getting dirty.
  1. Invest in hand lotion – You will be washing your hands a lot and they’ll get super dry so get some good hand lotion before your hands turn into leather.
  1. Sleep comes at a premium– My bag is productive and keeps me up at night. I wake up at 12, 3 and am every night to empty it because If I don’t then it pushes off my skin and causes a mess. If I eat dinner earlier (5-6 pm) and then have a starchy snack (like bread/crackers) around 10 pm it slows down a bit at night. Also I sleep on top of a towel which makes me feel more comfortable about letting myself fall asleep. Your bed should have a plastic cover on it. Maybe I’m scared from a few bad experiences but I have trouble sleeping. I just try to make the time I’m awake productive and I do a lot of reading/writing late at night.
  1. Immodium – *talk to your doctor here but this help me string together more than a few hours of sleep at a time. Its also just over the counter so no need for prescription.
  1. Drink up! – Okay I was told this in the hospital but it really is true. You will be losing more fluids than normally so you need to replace them more than normally! Don’t only drink water, you need electrolytes so that you don’t ‘over-hydrate’. Mix in Gatorade, juices and sodas (knocked out the carbonation with a fork-you don’t need excess gas in your stomach).
  1. You may have a normal BM – I have no idea why no one told me this while I was in the hospital. For patients who have a temporary loop ileostomy such as myself, the colon continues to produce mucus and you may have to take a BM “the old fashioned way.” The first time it happened to me (7 weeks post op) I freaked out and called my doctor only to hear its normal. I had no idea what was happening and I’m a medical person so you all should know this. Again, why wasn’t I told about this possibility in the hospital?
  1. Simplifying bag changes – If you don’t have time or are unable to change the bag during a time when your stoma is quiet, try taking Immodium an hour or two before the bag change *talk to your doctor*. It really slows things down and allows me to do bag changes whenever I want. And I have a super active stoma that I have to empty like 15 times a day.
  1. Forums — They have a lot of bad information on them, but some have good advice from patients on how to deal with unexpected things that pop up. Check out the Crohn’s and Colitis Foundation of America forums they are pretty good.
  1. Options, options options – If you aren’t happy with your bag call your ostomy nurse right away! The are so many options out there and these folks are super knowledgeable, they will make it work for you.
  1. You will heal physically before you heal psychologically – If you’ve just had surgery you probably don’t believe me here as you feel like you’ve just been hit by a bus. In time you will start feeling stronger and before you know it you’ll be up walking again. I am actually amazed just how resilient the human body is and what we can go through. This being said this surgery is difficult psychologically, or it has been for me. I feel exhausted (compounded by sleep deprivation), thirsty, different from everyone else, self-conscious, frustrated and at times upset. Having an understanding support system of friends and family is so important to helping the adjustment. This being said if you feel like you need to go talk with someone about your new situation, do it! There’s nothing wrong with acknowledging that this adjustment is difficult, in fact its healthy. It has helped me to find a good hobby to do while you’re recovering to keep your mind busy and you feeling like you are being productive.

Bonus #11. If you do not have insurance look at amazon for supplies. Supplies can be had for relatively cheaply there compared to insurance prices.

These are my 10 things I wish I have known 9 weeks post op. They are subject to change as I continue to learn! I hope it helps some of you! Do you have anything to add? DO you agree with any of this?

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