hey folks, first things first, just came across this forum through google and hoping to share ideas, get help as well as help others.
now, this post might be a tad long, for that, i do apologize. bear with me.
I was diagnosed with crohns about
14-15 years ago, went through various treatments, had my ups and downs like everyone else and come to terms with it and dealing with it in the best way that i can.
I had a "temporary" loop ileostomy back in october 2016 and never felt better. so for that im grateful and happy. i do remember a few years ago, my doctor suggested but my response was literally "if it came to that, put me under and pull the plug". but after a few years, things became pretty bad for me and that was the only option. no regrets! i dealt with it better than i thought i would.
now, once discharged from hospital, i was given a two piece system from Hollister. At first, i thought it was the only system available. i have a bunch of issues as i learnt how to deal with it and did some research and trying to educate myself as there isnt much support in dubai when it comes to that.
with the hollister system, i found applying the flange (or as some of you call it "a wafer", unless thats a different thing) was pretty straight forward and the drainable bag easy to attach. my main concern at the time was leakage. plus the fear of the bag coming off while i slept. so i bought a belt that attaches to the bag. that brought some peace of mind. there were a time or two when i woke up in the middle of the night and the bag was so full of poop and gas, it was close to popping off. which it did as i hobbled to the bathroom to drain it. again, i dealt with that embarrassment on my own.
the doctor said that i should change the bag once every 3 days and the flange every 4-5 days or so as it would damage and irritate the skin if i changed it daily.
over the next couple of weeks, and still to this day, the flange would start leaking from the bottom. so i bought the Adapt paste. seems to help extend the leakage by a day or so. perhaps i was applying it incorrectly. i also use a barrier spray as instructed so it doesnt damage the skin. I also thought, could it be that im flushing out the bag with water on a regular basis? i would fill it half with water, slush it around and drain it. could it be that the water is leaking under the flange from around the stoma and weakening the adhesive?
I have now moved to Beirut, Lebanon. there are no shops where i can buy hollister. the only ones available are coloplast and convatec. im extremely nervous with the switch. but ive seen posts here where people swear by those two brands.
i have a bunch of questions, hoping that some people would answer and provide me with some info and help me out.
1. is applying the coloplast flange (base) the same as the hollister?
2. the area around the stoma, is "bulging. the doctor said its normal to have that area raised. is this true?
3. is there a coloplase flange thats designed specifically for this case? (raised "bump"). my stoma is just above the belt line. so my trousers belt sits just below the bump and flange.
4. that bump, really bothers me as it shows from underneath the clothes. is there a belt that would help push it back to conceal the bag and bump? if so, is it healthy?
5. two part question: my two biggest fears are leakage in public and the bag coming off in my sleep.
5a. what measures should i take to avoid leakage in public?
5b. does the coloplast system come off as easy as the hollister? dont want to come off in my sleep.
6. can the stoma be "redone" in order not to be raised? ie removing the bump so i can conceal it more?
7. an embarrassing question. how does people deal with the bag during sex? i havent been active since the surgery due to this issue. my self-esteem and self confidence is down to a zero when it comes to that.
8. is it safe to shower with an exposed stoma? soap, shampoo etc?
anyway, i hope to hear from you all in hopes of making my transition to coloplast easier and bring up my self esteem slightly higher.
Im sure i'll have more questions as people comment. so please bear with me.