HealingWell
Search Close Search
☰

feeling stuck

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/19/2015 4:38 AM (GMT 0)
So basically my problem is I was diagnosed with crohns disease last October after dealing with it for 2 years with no medication because my doctors never ran tests on me... anyway when I was finally diagnosed it was too late and the disease had done it's damage and i just had surgery in January for a bowel obstruction and other issues that led to a surprise loop ileostomy. .. thing is I'm only18.. I've missed my whole senior year of high school. ..I feel so ugly and disgusting because of this thing and I really don't know how to deal with it... no one around me understands.. they just say things like "who cares what others think" which is easier said then done... lately my bags are leaking like every day and I'm doing everything my ostomy nurse showed me... I'm still super sore from the surgery which was only 3 weeks ago and I just feel awful. ..I kinda just wanted to vent a little and wondered if anyone had advice on going out in public and feeling confidence about it and how to lessen the leaks and feel more comfortable with it.
Posted 2/19/2015 6:11 AM (GMT 0)
Sorry you're going through all of this. I can't imagine having gone through everything involved with these diseases while still in high school. I commend you just for getting up everyday.

As I'm sure you'll hear and read a lot, the loop ileos can be really troublesome. The confidence will come over time but will increase significantly if you can get the leaks figured out. Have you tried using a convex wafer? What about barrier rings or ostomy belts to help keep a strong seal?

Make sure when you change the wafer the skin is completely dry when applying the new one. It can be tough with the liquidy output. My loop was completely unpredictable so I would always race through my changes when I had it.

none of my friends seemed phased about my Ileostomy either. They all just kept saying it was cool that it could be done, that it was a way of helping me and so many times I just wanted to scream that it was easy for them to say, and they didn't understand just how devastating the entire process (including being sick) was. In retrospect though, they did have a point.

As far as confidence with going out just take it slow. It will come. Your body is still healing and your mind won't even begin to start until much later. Just do something new and little each day and when you start to see and figure out how easy things can be and understanding how to manage with the ileostomy you can gradually build up to bigger trips and longer days as you grow more comfortable.

Hang in there and vent whenever you need to.
Posted 2/20/2015 12:05 AM (GMT 0)
just wanted to give you a thumbs up, too! It does suck, the whole "ileo out of nowhere" thing... heck, sometimes the planned ileo sucks also. I imagine yours is temp, right? So, hopefully you will only have to deal with it for a short time. Leaks are tough- I've never had a loop, but hear they are much harder to deal with. I second ArPar's suggestion about the skin being as dry as possible. That can only help with adhesion. You're not ugly & disgusting.... I get that sometimes too. Then think, I was ugly & disgusting when I was sick, more so than I am now! It's a hard thing to deal with, no matter how it comes about. But you will, deal with it. Take care!
Posted 2/20/2015 12:42 AM (GMT 0)
Thanks so much for the advice. .
Eva Lou - yes it is temporary. .I really wanted to get rid of it as soon as possible so I could at least enjoy prom and graduating high school somewhat normal. .. went to the doctor's today to get the bridge under the stoma removed abs found out it won't be until may till i get it removed
ArPAr - I have not tried the convex wafers but Hollister sent me some rings to sample and they seemed to help but I ran out now so i only have the paste and the simple wafer and bag.. I'm using the 2 piece system
Posted 2/22/2015 1:10 AM (GMT 0)
Trial and error, along with a bit of patience. Took me about five weeks to get to grips with my loop when I had one. Try Hollister Adapt barrier rings, with a convex wafer, worn with a belt drawn pretty tight. Try and time the change when ileo isn't active (I know, easier said than done), get the skin really clean and dry. Break the ring in half and stretch each half if needed. Take the first half, bring up under the stoma, and mould around, right up close, leaving no gap of skin between stoma and barrier. Same process with second half of barrier. Apply bag, then place the palm of a hand over the bag for approx 30 seconds to heat the barrier. Put the tip of a forefinger in the convexity of bag (from outside of course!) and apply pressure while going around in a circular motion. Do this for 2-3 minutes, then put the belt on.
This is the method that stopped leaks for me and generally allowed me to change every other day.
Posted 2/22/2015 1:12 AM (GMT 0)
Forgot to say, overlap the ends of the barrier when applying the second piece, LEAVE NO GAPS OF SKIN SHOWING BETWEEN STOMA AND BARRIER!
✚ New Topic ✚ Reply