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06-04-2011, 11:08 PM   #1
nannajcraw
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ugh

i dont want to be a downer or a winer but ever since i have had my ileostomy 7mths its been hell it cintrols my life today i have emptied almost 4 times an hour all liquid again thrw up 3 times just have been feeling crappy i have been feeling my intenstines hurt again when i am going to release is my crohns able to get to me since i even have the bag thats just what it feels like im so desperate i cant sleep cause i fill up right away then last nite my clip came off in my friends car so embarrassed it just seems to be all i can think about am i leaking can u tell i am half thinking about getting it reversed i have an appt with the surgeon on tues to reposition it cause of receeding my crohns was so out of control this will be my 10th op in going on 2yrs and still un able to cope just so lost i read some of your posts and wish damn they r living life i just want to do the same thing but i dont know i can i just cant exept joe i think i am sorry just have been feeling so down is it the shortness in the birth of joe or if i havnt excepted yet i wont by now any advice i valvue it just the short time ive been on here HELP i hate joe right now is he ever gonna behave if i dont get him reversed then i might get sick again from my crohns if i do im wondering my feelings are i cant control joes actions or is this all normal ty for listening to every one out ther
06-04-2011, 11:57 PM   #2
Nyx
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You can't control your stoma or what it does unfortunately. The best we can do is get an appliance that works, and if there's anything unusual going on get to the doctor and have it checked out. I don't have an ileostomy, so I'm not sure what normal output frequency should be (I know it's more than a colostomy which is what I have), but I'm thinking that 4 times an hour is excessive and not normal. Also, the throwing up concerns me. Have you been eating normally? Is this output normal for you, or is just today? I'd definitely make a trip to the doctor, especially if you're throwing up, and having pain.

Sorry this hasn't been more helpful....good luck to you and keep us posted!
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-05-2011, 01:24 PM   #3
Terriernut
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NannaJ girl (that's my name for you...sorry, you're stuck with it now!)

Can you please detail what surgery EXACTLY that you have had. If you've had numerous ones, can you list those:
Illeostomy Oct 2010
Resection May 2010 like that? Also, exactly what meds you are on as well, for all the bag people here so maybe we can help more?

Also, what appliances are you using currently? Brand, type? Are you using any rings, any powders, all the bits. Folks on here are sooo smart about these things and no doubt can help alot more with more information.

Meanwhile: 4 times an hour is NOT right, even for an ileostomy. Unless you are using a tiny drainable bag. What is your diet like? Also, your throwing up signals that you are having another flare. Crohns can affect all areas from your mouth thru to your anus, so it sounds to me like you are far from under control, even with a bag. Many of us here must take maintenance meds, even though some have had their entire colons removed. Since it affects much more than just the colon.

You've come to the right place here in this stoma forum though!
Misty
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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06-05-2011, 06:12 PM   #4
ameslouise
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Hi Nanna J - Ditto above. Your output should be more like thick oatmeal than thin runny watery output. But like Misty says, it would be helpful to know more about your history.

In the meantime, you should call the stoma nurse and tell him/her what you are going thru and they can advise you on what kind of bag might be better for you. Your ostomy supply provider can probably send you free samples so you can try different kinds. You should not be having blow outs and clip failures - there are zillions of bag and flange styles out there - you should be able to find one that works for you.

Good luck - Amy
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