A few specific questions please - thank you! as a follow up from my earlier post

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 1/7/2009 6:06 PM (GMT -6)   
and please excuse spellings for now! 
what is the  difference between an ileostomy and colonostomy?
What is an internal irrigating colonoscopy?  Read about that but my doc never mentioned anything like that.
Did you prep in the hospital or at home, were you admitted that morning of the surgery, as has been done with almost all of mine to date (non abdominal).  The reason I am asking is that my walking is very dififcult as I have to wear braces and I move quite slowly.  If I am in a hospital room I will be using bedpans again and no doubt will have to hire my own aide to help me, or as they did in one case in the ICU got a rectal catheter.
If you were lactose intolerant before surgery, would you also be afterward?
Who are some goof Ostomy supply houses so we can get the necessary and more desired bags/wafers/products?
Do any of you recommend any other products, I have heard of deoderizing tablets, and gel abosrbing for bag contents/consistency, any other products I should be researching?

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Date Joined Feb 2006
Total Posts : 5698
   Posted 1/7/2009 8:06 PM (GMT -6)   


An ileostomy is for UCers when the entire colon is removed.  The ileosotmy is created with a portion of the small intestine.  A colostomy is done on Crohn's patients, for diverticulitis, and other reasons, and is done when there is a partial colectomy (not taking all of the colon) or when a resection is done on the colon and the surgeon deems it necessary to divert waste for healing purposes.  So, you will be having a permaenent ostomy.

As for pre-surgery prep and admittance, every surgeon is different.  My pre-prep started at the hospital as I was checked in as a patient at noon the day prior to my surgery.  I started taking the laxative and also had pre-surgery blood work.  Some surgeons have patients come in the early morning of the surgery and have their prep done at home.  There is no way to know which way your surgery will work.  I would mention your prep concerns to your surgeon, chances are he/she will work with you if they can.  You have a complicated health history so there is no guessing on which way this will go.

Do you mean a self-irrigating ostomy?  If so that would be a Kock pouch or a BCIR.  Both of those are internal pouches created out of the small intestine and one uses a catheter to empty.  It's a far more invasive surgery than the permanent ostomy and even more difficult, I believe, than the jpouch.  Neither of those surgeries are offered at many hospitals meaning that travel for surgery and for possible complications must be considered.  I know the Cleveland Clinic does the kock pouch and I know that there is a hospital and Florida that doe the BCIR.

Someone else will come around and help you with ostomy questions.  I had mine for only 8 weeks and never mastered it!  I'm glad to see that you are having surgery as I believe this will give you more of a life and one less thing to worry about.  You will be shocked at how much better you will feel immediately after surgery once that nasty colon is gone!



dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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Date Joined Aug 2006
Total Posts : 6571
   Posted 1/7/2009 9:44 PM (GMT -6)   
an ileo is where they take all your colon and use your small instestine for the stoma. that's what people with UC get. The other they leave part of your colon and use it.
Dont know what that irrigating thing is.
prep at home, then if it's not clear when you get there they will give you an enema, ACK!
lacotse intolerant-no idea, sorry
You order your supplies through the mail, i use edgepark, but i am sure there are others. They will give you a few things at the hospital. Go ahead now and go the the different site, like hollister and ask for samples.
things you will need-
wafers, bags, paste or eakin seals (that's whichever you choose), the rounded scissors, ziploc bags, either small squares of towels or paper towels (obviously you get those from walmart or something, lol). that's what you HAVE to have.
Some things you may want
Powder, adhesive remover, medical tape, gel tabs, m-9 drops and spray, or you can use mouthwash or peroxide. Alcohol pads, a pad to put under you when you sleep (snake the one from the hopstial)
I'm trying to think of other stuff, but of course my brain is blank!

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Date Joined Aug 2007
Total Posts : 1998
   Posted 1/8/2009 5:43 AM (GMT -6)   
I have Crohn's and have an ileostomy. But the disease was in the my rectum, colon and small intestine. So that left my ostomy made from my small intestine.

Some folks have a colostomy - that's using the colon to make the ostomy. And, there is a way of managing a colostomy (not Ileostomy) by irrigating it. That won't happen immediately after surgery, but it is similar to giving yourself an enema at a given time of day to empty the colon.... like making your system go on a regular basis. Some folks who master this don't even have to wear an appliance, they can wear nothing more than a bandaid. It takes patience and trial/error, but some have very good luck with it. Maybe an irrigation sleeve is one to handle the higher output after irrigating (enema like procedure you do yourself). I'm not certain as I have never had to do this.

Sue and Summer pretty much covered the stuff you may need. Certainly make those calls and get some samples lined up as soon as you have a better idea of what you will be needing. Some of the companies have pretty good customer service and some don't --- but don't be alarmed with that. We can help answer some product questions here too.

Best of luck to you... keep asking those good questions.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

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Date Joined Jul 2007
Total Posts : 1956
   Posted 1/8/2009 6:55 AM (GMT -6)   
I do not have a colostomy but here's a forum for people who have ostomies they irrigate:
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 1/8/2009 7:35 AM (GMT -6)   

Bob--I think you've gotten some really good answers...the one I can help you on is the Lactose Intolerance!!  I, too, am Lactose Intolerant...but it doesn't really matter with my ileostomy turn    Just know that if you eat ice cream, cheese or drink a yummy latte...you'll just have increased output.  For me I eat/drink something and about an hour later I empty my full pouch and it's done!!  Now I know I can take a couple Imodium or put a gel tab in my pouch and that would keep me from having to go to the bathroom so quickly but I guess I am lazy...it really is personal preference.  You'll get the hang of managing your stoma as time goes by...try everything...stick with what you like!!

Some medical supply companies are:  Sterling and Edgepark and even Ebay!!  You'll want to check with your insurance to make sure they okay with the company you choose (some have one they want you to use).

As far as other products, I LOVE the Eakin Seal...it works like paste but is easier to apply and for me keeps things secure...I also love Hollister's pouches with filters.  Not all filters are created equal (or even work) but the Hollister ones don't need a sticker over them to take a shower and will work even after laying down (it won't work well while sleeping but as soon as you get up and empty the pouch the filter works again).  I am a believer that less is more so I don't use remover or skin prep it depends on your skin...

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