thinking of having an ileostomy

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2b ColonFree
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   Posted 3/28/2010 11:30 AM (GMT -7)   
hello all
 
i have a question to all of you with an ileostomy, does it make noises when the poo is pooring into the bag?
i don't have a bag, but it could be that it's in my future, so just curious for now.
 
also, if there's gass, does it burst out with lots of noise?
 
thanks a bunch to all of you!


Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


Wade457
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Date Joined Dec 2008
Total Posts : 91
   Posted 3/28/2010 12:16 PM (GMT -7)   
naaw mine is relatively quiet.

Feels weird sometimes though when I'm active and the bag is doing what it's supposed to do.

Stay away from eggs and you should be fine with gas..

2b ColonFree
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   Posted 3/28/2010 1:03 PM (GMT -7)   
thanks Wade for your response. it's comfoting to know yours is quietly doing it's job, that's how i hope it would be for me if i choose to have one.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/28/2010 1:42 PM (GMT -7)   
so.... anyone else..? pleeeaaaase?

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/28/2010 2:05 PM (GMT -7)   
Geez, patience much?! It's only been 2 hours since you originally posted! Give people some time!

Anyway, no, you generally can't hear much except maybe a little gurgling with certain foods--sounds like your stomach is growling.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 20mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 3/28/2010 2:06 PM (GMT -7)   
Hi Hodaya :-)

Mine is quiet 99% of the time. The only time it makes a little noise is when I have my first cup of coffee in the morning on an empty stomach, and it's just a soft sputter, which doesn't bother me. If there happens to be people around, I simply lay my right arm across my stomach and it completely muffles the sound. In the 4 years that I've had an ileostomy, noise has never been a problem.

Hope that helps!

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.


ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 3/28/2010 2:10 PM (GMT -7)   
Mine is quiet as well....... every so often I may here something like a burp but its never been too loud. I swear I think Im the only one that heard it. I eat eggs and dont have any trouble. I think everyone is different. I dont have too many problem with gas and if I do I just empty a little bit more. Hope this helps.
 
                                                                                                            Jen

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 3/28/2010 4:24 PM (GMT -7)   
Hodaya~I am sorry to hear things have gotten to this point for you:( You'll have noise in the beginning while healing and before you get back to a regular diet. Like flchurchlady said, it's 99% quiet, except when your stomach is empty like early in the morning.

I have found, for me, as long as I don't eat processed foods, I don't have much gas at all:) We are all different so you'd have to try all foods and figure out your body.

Any other questions?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/28/2010 11:54 PM (GMT -7)   

sorry i was so impatient blush 

thank you all so much for your replies. yes it helps a lot!! Cecilia, it's great talking to you again and thanks for helping!! it's good to know the stoma is usually calm and quiet smile 

Ohio, my drs seem to think this is my only solution, since i have a functional prob with the pelvic muscles, they are too tight and won't let the anal canal open as should, so the stools can hardly move through, so i can't have a normal bm, therefore i keep getting bad obstructions, sometimes i'm hospitalized, sometimes i just put myself on clear liquids to clear it. there's no solution for this problem.

i can't eat solids, i need to keep the stools liquidy-watery and even then, it can't come out much and it's SO uncomfortable and painful to carry an abd full of diarreah sloshing inside all day. but it'll take time before/if i do it, cause i have to have some tests first and that takes time. laxatives can also be an option for me, but they don't work forever..

i asked my surgeon about a j pouch, but he said it won't help cause my whole pelvic muscles are messed up, so it will hold the pouch tight also and it won't be able to empty either.

thanks.. when/if it really happens, i'll probably have tons of questions lol.. maybe even sooner.. smile


Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


Trigirl
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Date Joined Jan 2006
Total Posts : 768
   Posted 3/29/2010 12:07 AM (GMT -7)   
Bubbles (stoma"s name) gurgles once in a while but is fairly quiet while busy. Feeling it is more annoying to me. Then that happens when I eat fiber it can't handle well yet. (been at this 8 months so far) Even rather hurts sometimes.

Sorry to hear you are not getting better. Have read many of your posts before. This was my answer and I'm learning to live with it.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/29/2010 2:02 AM (GMT -7)   
hey Trigirl, i sure remember your support when i went to surgery, it means to me more than you know, it made me feel so good inside reading your support while in the hosp :)))
thanks so much for your reply! i was hoping for better than this, but i always took into consideration that it may not work and i may need a stoma.

can i ask you, why does it hurt you sometimes when the stools move through the stoma? is it like a burning feeling? can a stoma get constipated? i hope things work well for you and you feel as best as possible!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 3/29/2010 5:06 AM (GMT -7)   
Hodaya,

Have you tried miralax yet? Honestly, I thought I was on my way to an ileostomy too, but miralax has helped so much. I don't know if it will last forever, but it's certainly worth a try before having more surgery. My surgeon told me all he could offer was a "stoma" and I asked about miralax back in October. Please give it a try!

Hugs,
Janie

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/29/2010 5:34 AM (GMT -7)   
hey my dear Janie, missed you so much! i won't do the ileostomy before trying miralax, that's for sure. mean time i'm managing with my soft liquid diet, lots of fruits and vegies juices (fresh squized). this helps me not to get an obstruction, but lives me with diarreah sloshing inside my abd ALL day. so i already bought a bottle of miralax and thinking of starting it soon. maybe it can give me a more significant relief. will see. thanks so much hun, love you for always caring ♥

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 3/29/2010 8:51 AM (GMT -7)   

Hodaya,

When you start miralax and if you get alot of diarrhea, mix a small teaspoon of metamucil, citracil or benefiber with it and it will give you a little consistency and not just liquid.  It has totally changed my life.  It's not perfect for sure, but so much better than before surgery and so much better than a few months ago when I got all that rectal pressure.  I can live like this and hopefully will be able to forever...........

Miss you too.  Where have you been hiding?:)


honestwoman50
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Date Joined May 2009
Total Posts : 833
   Posted 3/29/2010 5:35 PM (GMT -7)   
2b ColonFree
   Is there no chance they can re-connect you to your rectum...???  I am so happy they did me...praying for you...
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/30/2010 11:18 AM (GMT -7)   
Oscar is quiet most days, except yesterday in line at the Post office....he started talking and I looked down and said "quiet Oscar!!!" The other people in line just thought my tummy was rumbly. Someone offered me a snack bar...LOL.


-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2010 11:19 AM (GMT -7)   
Janie, thanks for the advice hun, i will try all that stuff. i'm around, reading some, thinking of all of you girls all the time, just dunno, havn't been feeling much like posting lately.

Leslie, thanks so much for your prayers! i currently have my small intestine connected to my rectum, but it's not working well and i'm still dealing with constipation issues and repeated obstructions b/c my rectum/pelvic floor is not functioning well, so my drs suggested a loop ileostomy, cause it can be seen in the x rays that the rectum is what's causing the obstructions.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/30/2010 11:36 AM (GMT -7)   
Hi Hodaya,

Good to hear from you. TRY THAT MIRALAX!!!! :-) :-) :-)

Miralax (in the right doses and as Janie suggests, mixed maybe with some Metamucil) would have saved me from going down that bad road I did.

However, regarding the ileostomy stoma, it is quiet. Remember, as long as it is doing its job and all is well, a few gurgles from time to time is no big deal. BUT do try that Miralax for a good 6 months prior to getting a stoma. Once you get a stoma, life as you know it is changed forever.

(My choice was stoma or die from my internal injuries from that original surgery in 2006, but I would not have just gone out and gotten a stoma by choice.)

Good luck. I know how exhausting this whole issue is for everyone who has obstructed defecation, but trying meds is really the best first line to try.

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/30/2010 11:38 AM (GMT -7)   
Hi Hodaya,

Yeah, gas is an issue for me. And with a stoma it doesn't expel as easily as it did with my rectum (my old rectum prior to the 2006 original surgery damage.). Sooooo, if you get a stoma, you need to really be careful what you eat. Also I have to avoid nuts, seeds, peels. Even mashed potato has made a stomal food clog in me. My downfall is sugar, so am trying to cool it on the sugar. We are all different so you don't know how it will be for you. If possible, if you do get the ileostomy, have it done laporoscopically to reduce the chance of adhesions. Rosemary

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2010 11:51 AM (GMT -7)   
thanks Allison and Rosemary for your replies!

Rosemary, yes, i will try everything before deciding on a stoma. i'm asking b/c i need to know how it's like to be with one, in case it really happens. i'm curious to how it would be like, that's all.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 12:11 PM (GMT -7)   
2b ColonFree
    OMG, really?  When did this start happening ?  The obstruction and constipation?   Was it right from the get go after surgery?  All the doc's around here have told me constipation will never be a problem for me.  Some have said that its not true, I think you were one of them who told me that.   I never had the constipation it was all gas holding things up though...Interested to hear your reply.
 
I am so sorry that you are going through this, it kind of makes me worry but I have to push that thought out of my head cuz I feel so good.  and dont want to go backwards..
 
Leslie
Leslie King
 
 1984 Tubligation
1992 Diagnosed with Thyroid tumor, has to come out, but not till I am darn good and ready,  its not bothering me so .....18 years later I still have it.....
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2010 1:01 PM (GMT -7)   
Leslie, please calm down honey.. first, the fact that it happened to me doesn't mean it'll happen to you too! my pelvic is just too messed up i guess, i don't know. anyways it started about 2 mons post op and gradually got worse (i'm 7 mons post op). i don't think i'm the one who told you what your drs said is untrue, i don't recall saying that.

second, everyone is different and there ARE lots of success stories with surgeries for CI! and hopefully you'll be one of them! no one can tell/know which of us will be a success story, so you'll just have to try and be possitive and believe everything will be alright.

third i think i just had the surgery too late, i truly believe that if i had this surgery on time, just few yrs earlier, i would have had much better results, cause at some point i felt a dramatic deterioration of my pelvic floor and this could have been prevented if i had the surgery on time.

i hope you keep feeling good always and never have to worry about constipation ever. pls try not to worry too much, k?

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 1:36 PM (GMT -7)   
2b ColonFree
Thank you for getting back to me.  I am so sorry that you have to go all through this.  I knew their was someting terribly wrong with me and I had to find a answer because I felt as if I would die if I didn't...kept losing weight, could not eat, and all the pain and suffering.  I am so happy that I stuck to my guns and found my doc that listened.
 
I was not totally freaking out, just like to stay informed...OK A LITTLE WORRIED  but you have easied my mind.  Gosh after all you have been through I hate to see you suffer like this you have been through enough.  But if having the surgery will make you better I wish you the very best of luck.  I will be praying for you constantly and for all the others who are suffering..
 
Bless you
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  1998 Carpol Tunnel Right Hand
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2010 8:31 PM (GMT -7)   
thanks dear Leslie! i appreciate your support and prayers! anyway nothing is defenite yet and it'll take a while before/if it happens. good for you you got help on time! not like me, having it going on for 16 yrs before finally having the surgery, that makes the whole difference b/w me and you. glad i eased you mind a bit :)

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/30/2010 9:23 PM (GMT -7)   
2b ColonFree
  Your an amazing person to be so positive when things have gone so wrong...I got your back...night..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  1998 Carpol Tunnel Right Hand
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  

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