1 Month new, Ileostomy Questions > ?.

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sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 9/28/2003 3:11 PM (GMT -7)   
Hey everyone, My name is Andrew. I am 23 and have had an ileostomy put in place on the 25TH of Aug. I was wondering if anyone experiences higher more watery outputs in the evening ? I know I do, They seem to thicken as the day goes on until late evening or before going to bed they seem to losen more and I awake in the night having to empty the more watery poo. I have a two peice and a couple times it has came off a bit from where it clips and leaked on me :( but the question is just if anyone has the night time watery problem and thicker as the day goes on ? and what might be the cause. It occurs it seems even if I eat thickening foods at night. sleep brings water output. My surgeon just said not to worry, no answer, just dont worry he said. I should have asked but didnt, for some reason they did mine a bit shorter or something, meaning one would expect more watery out put, though it does get thick at times I must say. He also said they would hook me back up in 2-3 months, it all seemed to good to be true, but I hope he is right. I should have asked so many more questions. He showed me what they cut where everything was, and such and said 2-3 months, so in the relief of what he said I didnt ask barley any questions. Like why they did a shorter ileostomy when the diseased part of intestine was nearing the end of my ilieum. Also why my poor stoma is a freak in shape, I look on the net they all look nice and round, mine I cant cut a circle for it, I cut like a circle then must cut out some extra making it sorta of oval cause there is part that is lower and just kinda there at the top left side, Anyone else have an odd shaped stoma ? This is somewhat of a ramble I thought I had some good questions but they all seemed to have left, thanks for any responses.

Cheers


sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 9/28/2003 3:13 PM (GMT -7)   
Could my abscess location (main reason I belive for ileostomy) I have something to do with the shorter ileostomy ?
Cheers


sparkn
Regular Member


Date Joined Apr 2003
Total Posts : 273
   Posted 9/28/2003 5:38 PM (GMT -7)   
hey andrew,
I am not sure about the watery output at night. I would think that it has something to do with what you eat and when, but it seems you already tried eating thickening foods at night. Are you drinking more liquids at night? Basically the only question I can answer for you is that your stoma doesn't have to be a circle, my stoma is almost never a real circle. I have had it for over 10 years, since I was 23 (that must be the lucky age or something) and the shape changes slightly all the time. But usually it is a bit of an oval. It just makes it more of a challenge to cut the opening....I have developed a talent for doing it by sight now.....not quite what I am looking for in new talents but I'll take what I can get!
Nancy
Happiness is a journey not a destination - Souza


Kez
Regular Member


Date Joined Jun 2003
Total Posts : 484
   Posted 9/29/2003 4:38 AM (GMT -7)   
I have watery output all day and all night! I got put on Questran and Imodium-
both have helped a great deal.

Kez
25, from Hampshire, UK. Crohn's-colitis (diagnosed 2001) and ileostomy (2002).
My Crohn's, Colitis & Ostomy Pages: http://www.crohnszone.co.uk
 


Johnny
Regular Member


Date Joined May 2003
Total Posts : 82
   Posted 9/29/2003 7:18 PM (GMT -7)   
Andrew,

What you may want to have is a little book where you can jot down any questions that you want to ask at your next Doctor's appointment. Ant questions you want to ask, write it down. Nothing worst that walking away from the appointment and then remembering that question that has been haunting you for the last couple of days.

You main priority right now is to keep yourself fit & ready for the next stage of the oppo. Eat right & get yourself walking. Build up your strenght. However listen to your body and rest as well,you don't want to over due it.Remember you have just gone through a major op.

The liquidy out put,well I suffer from that as well as a few other people in our fourm. As suggested already get some imodium as extra protection. I down these like theres no tomorrow. I also use a pill called Gel-X,by Oakmed Ltd. This pill is insurted in to the bag and then it congeles the liquid into a gel like substance.
I would also suggest a support belt is helps to take some of the load off the bag.

Everyone as had leakage. I myself an only coming to terms myself after a couple of months. I've tried different bags, both one and 2 piece ones. I now cut the side of the bag a little smaller that the size of the Ileo. I find this goes over the sticking out piece real snug. This is what I have found to help me,i'm not suggesting you do this. It seems to work for me.

If you have any question, just send them in here. There are may people that have gone through what your going through now. Odds are someone can answer your questions.

Good luck,

Johnny

Tylers Mom
Regular Member


Date Joined Aug 2003
Total Posts : 204
   Posted Today 9:09 PM (GMT -7)   
Johnny, my son Tyler who is 17 just had his ileostomy done 4 weeks ago. I know the Dr. put Tylers ileostomy above the bad section of his intestine. This was to give the crohns time to settle down  and the infection time to clear up too. Once the crohns has settled down then they plan to do the resection, hopefully in the next few months.  Tyler was told to drink plenty of fluids exspecially gatorad for the electrolites because having an ileostomy you do tend to have more watery out-put. Tyler fainted 3 times but once they told us about making sure of hydration he hasnt had that problem. Tyler does take 2mg of imodium too for the watery out-put.
 
Tylers skin around his ostomy tends to be very red and irritated....nurse said we need to change the wafer and clean the area more frequently....we're still learning. We have only had 1 accident that was the first night. we were up till 1:00am changing sheets and trying to change the wafer and everything with no leaks....that stoma can have a mind of its own.....lol


niki
Regular Member


Date Joined Apr 2003
Total Posts : 58
   Posted 12/31/2003 12:27 PM (GMT -7)   
hey andrew :) i'm 19 and i just got my ileostomy in may.....i have a really weird shaped stoma too....i get watery outputs sometimes too ...your small intestine should adapt over time a bit and your output will get thicker....it could be that you are eating something that is giving you diarrea
...... and try to make sure that you eat the foods that thicken stool at the right times...maybe youre eating them too late and it doesnt help til morning...cuz it takes hours for food to go through -i am just guessing! :)
i try not to eat anything after dinner so i dont have to get up to empty it as often, and i can sleep peacefully!
i dont ever worry about leaking since i started using special glues in june...they hold the bag on really well! i use 3 kinds at once-i brush a thin layer of cement around the stoma, and then i put a thick bead of glue around the hole on the back of the wafer, and spray glue over that. it all sets for 5 minutes and then i slap it on ....i change it once a week...my dad does the same thing and hes gone 14 days (not that i recommend that!) and it didnt leak. we both wear two-pieces. i have to fill in a dimple beside my stoma too....its a little dip thats supposed to make it leak easily that i fill with paste before i brush the glue on. it takes me about 30 minutes to change my bag (and of course its always active when i want to change it!) my doctors would not reconnect me after 2-3 months- my surgeon says that its more likely to work and have no complications if i wait longer...i havent had any problems, until now-my stoma just got a little longer (but probably because ive been doing some lifting at work..oops) i am going to go and book my second surgery this month :) i waited so long but i think im in better shape this time around (been working 12 hour days on my feet and going out with friends....everything is great) i just get really annoyed with the hassel of the bag and the way i look ...and i hate explaining it to people. wow do i ever ramble lol

lionheart
Regular Member


Date Joined Dec 2003
Total Posts : 43
   Posted 12/31/2003 2:04 PM (GMT -7)   
The only thing I can add is that when I drink coffee or tea or lots of liquids-my output is watery. I also find that I have alot of output at night more than during the day...I think that is just when my insides decide to do their thing! As for the leaks ...I highly recommend the belt. It has been a life saver for me. I was leaking all the time and my stoma too is weird shaped and turned inside a bit-so that everytime it empties it hits my skin along the way! With the belt I have had very few leaks.


sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 1/1/2004 8:01 PM (GMT -7)   
Hope everyone is doing well with there ostomies... I actual had mine reversed on the 18th dec... so far so good.... intermediate diareah though.. and the usual wierd things.. but no pain.. I plan on taking a probiotic called VSL#3 to maintain remission. Niki - How why did you get the ileostomy ? I hope your doing well, I know it was really hard on my head at first. I hated the bag alot and the few people I let let know I would talk there poor heads off about it hehe.. my bag this my bag that.. anyway.... Lion - I was the same way always the most out put @ night !! it was annoying. Hope everyone has a good new year
Cheers


niki
Regular Member


Date Joined Apr 2003
Total Posts : 58
   Posted 1/3/2004 11:52 PM (GMT -7)   
hey sooper,
i got my ileostomy because i was dependant on prednisone to be in remission, and that was wrecking my body ... i tried many other drugs while i was on prednisone but i couldnt find anything that worked. i was on prednisone for about 9 months...the only side effect i have got left is stretch marks-5 on each side :( when i first got diagnosed, my blood count was at 46 and they gave me 3 bags of blood. when i would taper off the steroids, my whole colon would have moderate to severe colitis... and my blood count kept getting really low. it was getting really pathetic because i had to either put up with the side effects of the pills (i was a bit of a manic, overweight, emotional, insomniac) or go off the pills and constantly run to the bathroom and almost have accidents- and horrible cramps so that i couldnt sleep all night. its funny that i was horribly embarresed and in denial when i first had uc, but now im not embarressed to tell most people about my bag. most of them are grossed out too...and the others ask a million personal questions.

Trish k
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/23/2014 1:31 PM (GMT -7)   
Hi everybody
This is my first time on this site as I am very new to my stoma. Could you please help me cause it's driving me crazy, I leak nearly every day due to my stoma changing size through out the day. The stoma nurses think I should have my hole cut to the largest size which doesn't help when it comes to not fitting correctly for the rest of the day. I am fed up with worrying all day long x
Had iliostomy 3 months ago due to standing in a sting ray on holiday which then had to take very strong antibiotics for weeks due to infections. Had c diff in body which then destroyed my large intestines.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/23/2014 5:07 PM (GMT -7)   
Welcome Trish. Sorry you're having so much trouble with leaking.

Stomas typically change size throughout the day -- does the nurse think there's anything unusual about how yours is changing size? Are you sure the nurse is stoma nurse?

It would be helpful if you could post your entire changing routine -- what products you use and how you use them, how you wash, cut the pouch, etc. We might be able to help. I'd suggest you start a new thread for that, as this post is ten years old, and a lot of people won't look at it because of that.

Hang in.
50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...
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