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Hey team,

     Today is Sunday May 24th and I'm roughly 3 days out from my proctocolectomy.  Let me start by saying I'm so happy my UC is gone! I feel better even with surgical pain than I have since diagnosis.  Recovery is going good, I was able to start liquids less than 24 hers after and moved up to creamier/heavier things today with zero issues. However, I was informed that my small intestine is not long enough to reconnect and a pouch isn't an option. The doctor tried every trick in the book and was unable to stretch.  He mentioned he would be willing to try again in 6-8 months when I am 100%, but I'm honestly okay with this outcome.  I'm 25 years old (as of May 22nd) and my soma starts about 1 inch or so to the right of my belly button. I guess I'm worried it will be difficult to hide the bag. Asking for advice, tips, tricks and support regarding living with this big (but positive) change.

Last edited by lMlutt
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You sound sound confident and ready to continue with the illeo.  I admire that.  I wish I would have the confidence like you and go to the illeo.  But I will continue with the Pouch for a few more years.  That's what I went for from the beginning and I am gonna bear down and try and make it work.  If it doesn't I hope I have the confidence like you have right now.
Richard.

My stoma is 2" right of belly button.  It is noticeable to myself, but I don't really care much.  I don't try to hide that I have it, but nobody notices or says anything usually.  You can wear shirts that don't tuck in and pull the left side up and out a bit to balance out the look.  Prints rather than solid colors help.  I wear a belt, so the contents tend to collect above the belt line if you don't loosen it up and push it down.  Emptying the bag more often helps.

I had an end ileostomy for a year and the first month or so was a pain but I tell by the end of the first 6 months I was totally familiar with the whole process of bang changes, emptying, etc and I know I could live perfectly happy with a Ileo, I think it takes a bit but once you find the right appliance that works for you in a few months time you wont even realize you have a bag on!

 

On the subject of hiding the only real advice I can give is make sure you empty it before you go out and you should be good and other then that just don't wear anything too tight, I usually wore somewhat bigger shirts that were a bit baggy on me. I worked an entire year and no one in the work place even knew I had an Ileostomy. If you're really worried about it you can purchase a stoma belt of some sort that usually makes the bag more hidden, just google "stoma belt, or stealth+stoma  belt."

Last edited by Virdent

HI, IM ..  I've had a bunch of procedures and three different loop ileos!  I can tell you that with the ileos it was much, much better for me healthwise than living with colitis for 35 years!   There is nothing I can't do with my stoma, including swimming.

 

I understand that end ileos are much better to deal with than loops -- I assume becuase the loops are not as round?  Anyway, its my opinion that placement of a stoma is NOT NEARLY as analyzed as it should be by the people who mark them!  My first stoma the nurse came in with marker, marked an X and left. It was right at my belt line and my closest friends called me Erkle because I need to hike my pants up very high.  My second I asked the surgeon to put it below my normal belt line, if possible and it made it way better, and my third we used the same port (left side)  Now, I know you already have your stoma, so this is irrelevant.  One further point, if it can be low, but above the belly/abdomen crease, that seems like a good spot!  (I know you already have your stoma, but this is for others.)

 

Now, onto stoma maintenance, try lots of stuff, but -- go for the smallest sized wafer that you can without encroaching on the stoma!  This makes is so that movement is way more comfortable. At the hospital they were more than happy to give me a HUGE wafer and it was always noticeable when moving and even painful -- and worse yet, when you moved it could "lever" the wafer off your skin.  I use a moldeable convatec, 45 mm.  My loop is bigger than an end, so I still cut a little bigger hole, then role it back to form fit.  I literally can go 7 to 10 days with no problems, with the wafer.  Additionally, insurance covers "a bag a night" for me and I find that a filtered bag, when changed nightly, is much better because once a bag filter gets wet it balloons up.  This may or may not be covered by your insurance.

 

Additionally, get "kirkland" or some other brand of immodium from Amazon and take it to ensure your stools are not too watery.  I forget to take it as much as I should but you can get 200 pills very inexpensively!   I also find that any alcohol causes watery stools (even one) but others say they do not have this same problem.

 

Lastly, you'll need some running pants or loose-fitting pants (and shorts) for comfort around the house .. get some jeans or dress pants with plenty of room -- and for business I wear dark pants with pleats in the front to hide a bit more.

 

For the bed I put an extra pad below the sheet just in case of accident, of which I've only had one in four years, but that was when I was new to the whole deal.

 

I also buy black sealable bags (bigger than sandwich bags) from Amazon to dispose of bags and wafers to help be discrete (smell and site) -- which is also good for travelling. (A hotel maid might be freaked out if they saw the stuff in a garbage can.)

 

I would also try to stay away from stoma paste and build-up materials and all the stuff and try as best you can to just get the right wafer/pouch combo.  I find the paste and the rest of the stuff not worth it if you have at least a good/flat wafer landing spot.  Focus more on the RIGHT wafer system first!

 

Last night my stoma/wafer awakened me telling me it was time for a change.  I felt a bit of a twinge, and that usually means a slight leak onto the skin for me.  So I got up at 12:30, took a shower, changed my wafer and was back in bed comfortably at 12:45.  You will become an expert with your stoma and it becomes as easy as brushing your teeth to change.

 

Best wishes, and congratulations on renewed good health!

 

I have an ileostomy which i dont know if it will end up being permanent yet or not. Dealing with a leak in my jpouch right now for the past 16 months. in winter not a big deal, but now in the summer this is what i do. I'm a thin guy but I use a convex bag so it makes it harder to conceil. I wrap one of those really wide Ace bandages around my waist/bag area but i leave maybe a couple inches stick out the bottom. I tuck that into my shorts and i wear fairly tight tshirts and you cant see the bag at all. But you do need to empty it out more cuz the bottom ballons up quicker and you dont want a blow out.

I had my first surgery in December 2013 and didn't have reversal until feb 2015 so I had an ileostomy for quite some time.

I got very used to it. Could eat everything and do all sports. You don't have to worry about butt burn or pouchitis etc.

I would usually wear my t shirts loose as I didn't like tucking the bag into my trousers but the image thing was never really an issue. I embraced it and would show it to all my friends to freak them out. It's good to have a sense of humour about it. I think most females would not have an issue with it whatsoever.

The only negative for me was i didn't feel comfortable going topless in a public place like by the pool/beach but that's not a big deal
So I finally am out of the hospital after 8 days. unfortunately I got can abscess and have a drain going through my butt cheek for a week. Now that I'm wearing normal clothesi see that it's totally covered and I'm happy.  I was mainly worried for work.  I do alcohol planning for weddings. So wine tasting, food pairings and working in close proximity to people.  Didn't want to put them off.

Hopefully the abscess will be gone once and for all soon!

 

I've had several ileos off and on and am getting ready to go to a permanent one. No one has ever guessed that I have one, even in a bathing suit! The right clothes and attitude make the difference.

 

Has anyone told you about the mouthwash trick? If you are ever concerned about lingering smell (there generally isn't one unless there is a problem!), you can use a small squirt bottle with water and a small amount of mouthwash -- just plain old stuff, not Listerine or anything -- to swish out the bag after you empty it. Freshens stuff up just a bit.

 

Best,

Gin

Hi, when I had an illeo I found it was a much nicer feeling to fit the bag across the belly, hip to hip rather than dangling down, maybe cos I'm a shortie, but it felt less conspicuous, held across the body with tight underpants, also when it was to hot in Oz and sweaty I fitted a loose cotton cover over it, made my own but now you can prob buy them cos it was over 20 years ago.

Agree with avoid the paste its a pain

Good luck with everything!

Just remembered somebody told me a few drops of hydrogen peroxide into the bag stops odour.

 

 

Heather

Last edited by hever

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