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cghopper
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 11/21/2010 12:33 AM (GMT -6)   
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2010 11:38 AM (GMT -6)   
so you just got the ostomy?
if that's the case, there is a lot of output and gas at first, that will calm down once your body gets used to it more.  And yeah it is kind of gross and ugly, thats true.  Esp the ugly part, lol.  If you are still wearing the clear bags, that makes it worse, try getting the bags with the cloth covers, that makes it a lot better!  then you can't see the stoma or the poop in the bag. 
there are things you can do to lessen output, like taking immodium or eating certain foods, but if you are right out of surgery you should wait a little to take the meds, and you are on a low residue diet anyway, and once you add the bulking foods it will help also.
as for changing it by yourself, yeah thats scary at first!  for the first couple of months my husband helped me then one day i just decided to do it myself and discovered it took half the time to do it alone!  you will get used to it!
good luck!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/21/2010 11:43 AM (GMT -6)   
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. sad

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
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

still a lot to learn
Regular Member


Date Joined Nov 2010
Total Posts : 33
   Posted 11/21/2010 7:16 PM (GMT -6)   
Hello cghopper,

Sorry to hear all you've been through. yes, those recto vag fistulas really put a hold on the intimacies with my husband and me too.

As far as the bag having stool in it as soon as you empty, that is ok. It's normal at first and a lot better to have output than to have your intestines shut down with an ileus. My bag is never *completely* clean, (even when I do rarely pour a little water into it and rinse it about).

To get the outlet area of my bag clean after emptying, I wad up some toilet paper insert it a couple of inches and twist it about inside to get the sides cleaned. I don't know what others do, but that works for me.

Hang in there, it gets easier, there are frustrations, just have a sense of humor and don't be afraid to ask questions. I bet there isn't anything you experience that many of us haven't had happen. The people on these forums sure seem willing to share their tips on what has worked for them.

Take care
crohn's since 1983, many surgeries later finally got a perm ileostomy & proctocoletomy in August 2009 (a life saver). meds: 6 mp, lomotil and immodium, vitamins. LIFE IS GOOD!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/21/2010 7:49 PM (GMT -6)   
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!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

cghopper
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 11/21/2010 9:09 PM (GMT -6)   
Thanks for the words of encouragement, guys. My aid came over today and we changed the bag at home for the first time doay. I tried to be involved by taking the bagt off myself and wiping off the area. After everything was clean and we were preparing the materials, eventhough I had a papertowel covering my stoma, it pooped and some of it dopped on the floor and some got on my pants. It continued to be that way the whole time. I hadn't eaten anything at that point today. My nurse was very empathetic and my husband was here and he is wonerful and supportive, but of course it was a blow. After I got all cleaned up I had to cry. She's coming back on Wednesday, so hopefully, things will be better then.

I ordered some underwear from Ostomysecrets last night, so hopefully those will make me fill a little better about things.

Thank you for your support. I'm even starting to get emotional right now, and it's nice to have a place where people understand what I'm going through.

Cecily

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2010 10:41 PM (GMT -6)   
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!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/22/2010 4:37 AM (GMT -6)   
Hi cjhopper and welcome, sorry your having a hard time but it does take some time to get your head around it all, well it did for me and now its been about 18 months since having my ileostomy and proctocolectomy and now I am in a happy place with it all. It has given me quality of life and I rarely have any problems with appliances etc. I found this forum to be a life saver for me as well, there is always help available here and some great tips and advice. It does get better with time, allow yourself to grieve as well, my doc said thats what we need to do and once your feeling well again which believe me you will, there will be nothing that you wont be able to do. I live by the beach and went for my first swim in the surf in years because even before my ileostomy the crohns/colitis was so severe I couldn't leave the house, but the swim went wonderfully and the surf didn't rip my bag off as I also have found lots of handy hints on here and some great products. Take care and stay in touch,
Doreen

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/22/2010 6:13 AM (GMT -6)   
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
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/22/2010 10:44 PM (GMT -6)   
sounds just like my first changing time! your emotions are going to be running high for a while. I cried everyday for the first month. (especially once i started leaking because my stoma retracted as it shrank) its ok, it gets better i promise! You'll eventually workout a time when you're stoma is not as likely to be active and that will be your changing time. Mine is between 10am and 1pm providing i don't eat during that time. You'll find out how long it takes for food to transition through (right now its going to vary as your still close out from surgery) mine is about 7-8 hours as i have a colostomy. Therefore I know i will have little to no output during the day as i haven't eaten all night. Ileosotmies tend to be shorter transit time, i think 6 hours, maybe less. My ostomy nurse originally told me that first thing in the morning is a good time to change but not for me. I still gotta poop first thing! lol! so i wait and then change. It's tricky but you'll get it, and yes preparing as much ahead of time helps. I take over the whole bathroom with my preparations. I can do the whole thing in 10 minutes now and haven't had a single accident or leak in a little over a month. you'll get there too!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/22/2010 11:22 PM (GMT -6)   
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.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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