Having a really hard time with ileostomy

[HappyNao]

I'm about 2 weeks out from a LAR with ileostomy, and I'm struggling a lot emotionally with the ileo. Next step for treatment is 6 months of just xeloda, so I'm looking at a reversal probably sometime in February, which I totally get isn't really that long, but like I said, emotionally I'm a mess.

Yesterday I changed the bag by myself for the first time and it was incredibly upsetting and stressful - I've done it twice already with a nurse present but this time didn't go as well - I got the hole wrong so I had to recut while I had the old bag off, then I'd get everything ready to go and it would ooze a little and I'd have to basically start from scratch with the cleaning and the powder and the skin protecting wipe, and that happened about 4 times and I ended up standing there in the bathroom for about half an hour, and then of course I was shaky and exhausted because of the recent surgery.

Then I woke up this morning and it had leaked so I had to do it again. And the experience was similar.

It hurts, there's a raw spot on my skin right where the poop comes out, the nurses gave me some powder to put on it but I only started using it yesterday so no progress yet. And all of the skin under the adhesive is sore and unhappy (not red yet, but it's not happy.)

And there's the emotional upset, which really surprised me - my grandma had a colostomy for 10 years, and we lived with them, so I was expecting this to be no big deal, since I've seen stomas and bags and people taking care of them a lot. But I don't like looking at it, and every time I empty it I hate it, and changing the bag leaves me upset for a couple of hours after...

Help? Advice? Encouragement?

Thank you. You have all been great so far with this truly crappy experience.

[ozziej]

Hi, so sorry you're having a rough time. The first few weeks are challenging dealing with a temporary loop ileostomy. It's important to remember that an ileo is much harder to manage than a colostomy so please don't beat yourself up.
Here are some ideas i found useful: give your stoma a name, then boss it around.
Try to time your bag change to when you have a shower. Makes it a lot easier to deal with pesky output as you're changing the bag.
Some people swear by having some marshmallows a half hour or so before a bag change, as this slows output.
Ask your stoma nurse about Eakin seals, which can be moulded to your shape to help deal with leaks.
If your stoma area gets itchy you may have thrush, usually easily dealt with by a one off fluconazole med.
Try to keep your diet as low residue as possible, and be sure to drink lots of water.
Google ostomate support groups. They generally have heaps of good tips for dealing with issues.
Hang in there, and best wishes for your mop up chemo.

[peanut_8]

HappyNao,

Sorry to hear about your troubles. If you don't get the info you need here at Colon Talk, you could try the United Ostomy Association at http://uoaa.com

Karen/Miss Molly has always recommended them and they seem very knowledgable about issues concerning ostomys and ileostomys.

Best Wishes,
peanut

[Mrs E]

It takes time to get use to on top of dealing with surgery and cancer. My nurse recommended changing it every 4 days so on those days i would soak in the tub at night to help get the adhesive off. I would then lay in bed with a few old towels around it to let my skin air out for a few hours. I am super squeamish so it was tough to look at at first but as time went on you get used to it and throughout the day i would forget it was there. Ostomy secrets is a great site for helpful hints and a store with bathing suits, bands etc to keep the bag in place so you can start enjoying activities again. I loved a good float in the pool and with the suit and plastic wrap, and waterproof tape no issues
Good luck and get lots of rest

[Punky44]

I’m sorry you are dealing with this. My mom ranks this part of the journey (the ileostomy part) as the worst. Like you, she had a lot of struggles with leaks and irritation in the early weeks. It DOES get better and way more manageable and predictable though as time goes on. And as annoying as it is, it does sort of fade into the background eventually and not become the bane of your existence. But that being said, she still hates it and can not wait for her reversal next week. It seemed like we would never get here but here we are and you will be too in a matter of months. This too shall pass.

[HappyNao]

Thanks everyone. It was better today, I changed it again because I thought I hadn't gotten a good seal, but then it turned out I had, and there was no output while the bag was off this time, so it was a MUCH better experience. It still hurts though. Going to call the stoma nurse tomorrow to see if it's normal everything is still healing pain or if they need to look at it.

[Rikimaroo]

Just give it sometime once you get use to it, your going to become a pro you will see. I miss my bag actually reversal kind of sucks, but it is getting better so I can do without bag.

[juliej]

Visit your ostomy nurse as often as necessary until you get the right fit for your stoma and no pain or skin issues. It takes time to learn what's best for your particular case. And remember that stomas reduce in size for the first few weeks after surgery, so you'll need to cut the hole smaller as times goes by. Also, I second the recommendation for Eakin seals. They made it possible for me to resume all my normal activities without worrying about leakage.

I think the psychological part is the hardest. I felt unnerved changing my bag in a women's restroom in an upscale department store. And I hated when the bag filled up with gas and I had to "burp" it so it didn't show under my clothing. It gurgled at inappropriate times and was hyperactive at the least convenient times (like in a movie theater), so there was that to deal with too.

I named mine "Belly Butt." Having a sense of humor helped me get through it. Here's a link to the message I posted when I finally got my reversal:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=32681&p=216732#p216732

Hope this helps!
Juliej