I'm new

Hi everyone.  I'm new to all this, and I'm sure a lot of the questions I might have have already been answered along the way.  There are a LOT of posts here, so please be patient.

A little background:  I have a new temporary ileosotmey.  I feel very fortunate it is only temporary and have not had the misfortune many of you have endured.  Around April of 2008 I started having pain in my groin - to the point where it just hurt to walk.  It was in my perineum so I went to my ob-gyn to try to figure out what the problem was.  I was misdiagnosed for a long time, referred to a urogynocologists, and finally a had some spots wail up on my perinum.  The dr took a culture and there was e-coli in those lumps.  I won't go into all the detail about the uncomortable treatments and disartement that was going on during this time.  I was referred to my colo-rectal surgeon and in January 2009 I had my first surgery because I had a horrible anal abcess that led to a rectal vaginal fistula.  I was very lucky the infection went out of my body and not into an organ.  It was very serious and I could have died.  My first surgery entailed the going in to open the fistula tract and drain out the inection.  I had a second surgery in August of 2009 to go and try to repair all the damage.  Since that time I had been trying to heal.  Also, during this time, I had not been intamate with my husband (we had celebrated our 5 year wedding anniverary in Sept of 2009, so that kind of put a damper on things).  Finally around February or so of 2010 I decided to try to break the dry spell.  That ended up causing me another infection and a re-ocurrence of a fistula.  Now, here I am.  Because of all the scar tissue from the previous surgery, the solution has been to take muscle from my leg and graft it into that area and I have a temporary ileosomty until it heals.  I only have to have it for 3 or so months, but it feels very daunting right now.

With this surgery, I was in the hospital for eight days.  I got really sick one day because I think I tried eating too much solid food then my stoma could handle.  It was horrible.  I was released on Thursday.  I'm so glad to be home.  The home health aid is supposed to come out tomorrow to assist me.  I'm just trying to figure out everything and haven't changed the appliance on my own.  I have a draining pouch and I find it very frustating every time I empty it, there is more right after I close it.  No matter how hard I try, I can't get it clean.  Also, my stoma makes loud fart noises.  Does anyone have any idea how to prevent that?  It's very embarrasing.  I'm homebound right now, but eventually I'm going to have to interact with other people.  My job also is very public orientated.  I know these are very small issues compaired to what many of you are dealing with, but I am new and don't know anyone else in this situation.  I know it's nothing to be embarrased about, but I think it's gross and ugly.  I'm coping the best I can, but I've always had self-esteem issues and this isn't helping.

I know I can get some positive feed-back here, otherwise this forum wouldn't exist.  I know all sorts of things about fistulas if anyone needs to know about that.

Thank you.

Welcome, cghopper. I'm so sorry to hear about all of your health troubles. I had a rectovaginal fistula, anal abscess, and ileostomy surgery, too, so I can relate to what you're going through.

My ileostomy was very noisy right after surgery, too. It's just because you were completely emptied out and now you're eating again, so there's air that needs to come out. Once you start eating regularly again, it will only make a little bit of noise after you've eaten on an empty stomach.

I work in a office with three other people, and my stoma is not noisy. Sometimes after lunch, if I feel it starting to gurgle, I'll just lay my right forearm over it or put my hand on it to muffle the sound. It works like a charm!

If you're getting a lot of watery output, you'll want to stay on a low residue diet (you can Google it) or the B.R.A.T. diet, which is Bananas, Rice (potatoes or pasta), Applesauce, and Toast. Avoid caffeinated beverages, and drink Smart Water for electrolytes.

If you have any questions about changing your appliance, please feel free to ask. We're all here to help!

Hang in there, it will get better!

Cecilia

ditto what everyone said about the noises slowing down and going away after some time has passed. In the mean time you can try taking gasX once you start leaving home, it really helped me. i still take one everytime i'm going to eat something i know will make me gassy like cabbage, or if i'm going to be at a party or something.
You'll never get the bag fully clean. you can rinse it with water to make it pretty darn clean, but its always going to have some bits left in it. Sucks, but once you get some opaque bags you won't be bothered by it so much. To clean my bag end, i use the wal-mart brand wet wipes, they are stronger than toilet paper and i only need one to clean the whole bottom end really well. I wrap it around my first two fingers and rub out the bag in a circular motion, fold it in half and do it one more time. I also carry a baggy of these with me every time i leave the house. I found that when i used just toliet paper it would soak through or would get everything and i'd have to use so much that it would clog the toilet!
Go to some manufacture's websites and order samples to find something that you like best. I think the coloplast bags easiest to clean, but they do fold up a bit thicker because of the velcro. I tried 8 different systems before i found my fit, but now that i have it figured out i'm soooooo much more comfortable.
the best thing i can offer to maybe help with the gross ickyness of it all besides the opaque bags is bag covers. they come in all different colors patters and styles. http://www.cspouchcovers.com/ has some decently priced ones. Also if you're concerned with it showing crinkly lines through clothing, try a pregnancy belly band from target, or a tighter cami. works great!
first time i changed my bag it leaked and i freaked out and cried. I had some troubles with leaks as i gained back some weight as well, but now i've got it down pat.
Just remember, it all gets easier with time, and if you ever get down just say hey, its only temporary! good luck!

ok very important thing about changing the appliance, prepare everything in advance!!! at this point, you will still need to measure your stoma each time, but you should everything else laid out and ready to go.

When i change my bag, i put the tail of the old bag in the trash bag, then pull it partway off, cleaning the top part of my stomach thats exposed, then i take my thumb (this is gross) and push as hard as i can on the area right above my stoma, and that forces out anything that might be coming out in the next few minutes. Not eating at all won't keep your from having output, it will juts be really icky output if you don't eat.
you'll get the hang of it!

Cecily,
Everything is going to be okay. I promise! (((big hug))) Like summerstorm, I also recommend preparing the wafer in advance. You can cut the hole in the wafer, peel the backing off, put the Stomahesive paste or an Eakin Seal around the hole, and have the new pouch ready.

Once that is done, you can remove the wafer with an adhesive remover wipe, throw it away in a ziplock bag, take a shower, dry off, cover it with a paper towel or a washcloth, and then put the new wafer and pouch on. Before I finish showering, I will press on my stomach near my belly button to try to get everything out. It seems to help prevent stuff from coming out when I'm putting the new wafer on.

Your stoma will become less active and the output will be less watery as time goes by. In the meantime, you can take Imodium and Metamucil to help slow it down and thicken it up, and Gas-X for the gas. There are also gel tabs that you can put into the pouch to help thicken up the contents.

You just had surgery, so allow yourself time to rest and heal. If you have depression or anxiety, you can always ask your doctor for a low dose anti-depressant or anti-anxiety medicine. My dad passed away two weeks after my surgery, so I took some for a few months, and it really helped me cope better with everything going on.

That's wonderful that you have a loving and supportive husband! I do, too, and he has helped me get through all of this, which has made me love him even more!

Take care,
Cecilia

my transit time can be as little as 45 minutes, but is usually about an hour and half to two hours. and i have to empty first thing in the morning too, usually twice.