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Colostomy vs Ileostomy

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

Surgery last summer left me with a colostomy. With Lynch, I’m strongly looking at the possibility of an ileostomy later this year. Can someone help me understand the practical realities between the two, from supplies needed to lifestyle changes, etc? I already understand the surgical and anatomical differences, but I’m coming up short on the differences between living with a colostomy vs an ileostomy. 

Kzzararat
Posts: 6
Joined: Jun 2018

Hey, I had an ileostomy temporaraly after my Surgery.  My Aunt has a colostomy.  So we compare with each other.  The main difference I see is with an ileostomy what is produced in the bag is very liquidy, almost no matter, it can easily be emptied.  The bag can be changed every 3 or 4 days.  My Aunt (who is a little nutty) changes her bag frequently. 

Changing the bag to me was very difficult so the prospect of changing it more frequently would bother me.

Hope this helps and I hope all goes well for you!

 

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

Mine was an ileostomy and the one difference I'm aware of between the two is what you can eat.  Although with both you need to chew your food really well but with an ileostomy you can't have mushrooms, things with seeds like cucs, popcorn, corn on the cob, peanuts, skins on tomatoes, potatoes, etc.  It was a harder diet than a colostomy.  Although mine was only temporary some of those things were my favorite foods to eat.  Hope this helps.

Kim

TerryGibbons's picture
TerryGibbons
Posts: 12
Joined: Mar 2018

I had a Ilio for 10 months. Took a while to get used to.I ate most foods but i took Lopiramide tablets, they were capsules that slows things down and you need to cut the end off and tip contents onnto a spoon and swallow. Easy as. 

Reversal done last September and Colonoscopy last week shows all clear , i had bowel tumuor.       I am walking on cloud nine so happy and every day is a blessing. 

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

That is awesome news.  You should post this in a seperate "subject" line to let everyone know how you are doing.  Wonderful.

Kim

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

Is the ileostomy being recommended by your docs?

Another difference between the two ostomies is that with the ileo you have to watch for dehydration as it is the intestine which absorbs liquids.  That is why with the ileo there is more liquid. 

Also given the shortened length of intestine with the ileo, there is less time between ingestion of foods and liquids to output.

Some folks also have difficulty with keeping the barrier fitting tightly with the ileo which causes skin irritation due to acids expelled.  You may have to try many different supplies to help with the seal issue.  Also due to length you may need to change how you take any pill form medications since some are not totally absorbed in the stomach.  This is also true of nutrition absorption.

Marie who loves litties

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

Removing the remainder of my colon is something we talked about briefly last fall with my surgeon as a result of my Lynch diagnosis with an intent to discuss it further at our next appointment, about 8 weeks after chemo. I have new scans/blood work with oncology in two weeks. If they’re clear, I’ll make an appointment with my surgeon to discuss next steps. Having already dealt with Stage 4 colon cancer, I’m not wild about my chances of getting it all over again. 

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

I am unfamiliar with Lynch sydrome, but for the majority of us a recurrence in the colon is much less likely than other places like the liver or lungs.  

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

Lynch leaves me at high risk of developing more cancers, including a 50/50 risk of getting a second, unrelated bout of colon cancer within the next ten years. In Lynch, polyps turn to cancer in a year or two. I also had a rough experience with prep both for my colonoscopy and surgery last summer. There’s only so much I can do about most of my Lynch related cancer risks, but removing my colon is one thing I can do (as is a hysterectomy, which is another thing I’ll be talking to my surgeon about).

SandiaBuddy's picture
SandiaBuddy
Posts: 858
Joined: Apr 2017

Ugh.  The challenges are never ending.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for sharing that. I had no idea what it meant, either, but I knew it meant something worse. I hope you'll be able to get sorted out with all of this stuff. I had a hysterectomy about 8 years ago and it was easy and the best thing I ever did. 

Jan

Nazareth
Posts: 84
Joined: Nov 2017

i can tell you that my iliostomy is very difficult to handle- pouches do not stick to my skin more than a day because the content is so fluid and corrosive- it just destroys the pouch seal adhesion to skin- Life for me was better when i had colostomy- could go a coupel of days with a pouch- I am lucky however inthat in the morning ,when i change the pouch, the bowel activity is very minimal- usually- almost always- and i can quickly change hte pouch without much problem or mess- but every so often, the diarhea is so bad that it's a nightmare to change- just have plenty of toilet paper handy to grab quickly if needed-  the fact that the seal doesn't last long means the skin aroudn stoma gets irritated and soemtimes so weepy that the pouch can't stick in that area- but i use stomahesive paste to give a very thin coating on raw red area to heal it it protects skin just a little whiell onger than with pouch seal alone I find-

 

You also have to take into account that with an iliostomy- you will be losing more nutrients, and likey lose weight, and struggle with gettign enough nutrients- dependign on how much of small intestine they take out- over time, your body will suffer the effects of improper nutrition- but it wil ltake awhile-

 

You have a tough decision with the Lynch disease- I think personally I woudl wait and keep gettign checked for polyps- if the devlope- then get the rest of large intestine removed- but I'd have to know the risk odds more- I think-

 

I know some folks can wear pouches with ilio for days- i can not- and it's exhausting havign to deal with goign to bathroom 10-15 times a day- that's another thing to consider with an ilio- frequent bathroom visits- and you have to plan your trips around bathrooms- as pouch can fill up rapidly with such loose bowels- I carry a soda bottle with water in it to flush pouch out with- and always carry tiolet paper- a few wads in back pocket just incase- If I have a long trip- i can dart into woods if i can't make it to restroom- but that is last resort-

 

I had much easier time with colostomy to be honest- and felt i was gettign better nutrition and health was better- iliostomies can be tough to deal with- but soem folks are lucky and don't get real watery output- and do good with wearign pocuhes for a few days- but i haven't found a pouch seal yet that can withstand the output for more than a day-

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I’m glad someone finally gave me the other side of the story, so thank you! Part of the reason I’m looking at going the ileostomy route is that my colonoscopy prep experience was such an absolute nightmare, one I have no desire to repeat on a yearly basis. I‘ve already been diagnosed with Stage 4 colon cancer, I’m really not interested in doing this again. The colon is one of he few areas where I can nearly eliminate my cancer risk going forward.

I’ve asked this question in a variety of cancer groups and a lot of people do just fine with an ileostomy. When I first got my colostomy, it took us quite some time to find the right appliance. It was not planned, so the ostomy isn’t in the greatest spot. But I’ve earned to live with a lot. I’m starting to realize I can much better live with a bag than the increase cancer risk. I don’t think I can deal with the 50/59 risk and a yearly colonoscopy isn’t sufficient for my peace of mind. Even with a yearly colonoscopy, they can still find cancer. 

I’ll be having the conversation with my oncologist next week and with my surgeon a few weeks later. 

Nazareth
Posts: 84
Joined: Nov 2017

well like i mentioned, some folks do fine with ilios- some like me do not- the output is so liquid that pouch seals simply do not stick for very long at all- the output beign so liquid works it's way under the seal- and when i change the next day, the output has crept it's way to the edge of the pouch seal- I can't wear these with any confidence- I just put a new one on and hope they don't leak out in public- not a very pleasant way to go through life- and like i mentioned- the lack of nutrients has weakened me- it'sd liek starting a day with only a 1/4 charge, and running down so bad by 2 in afternoon that i have to nap every day just to recharge enouigh to make it through rest of evening- -

I'm not tryign to talk you out of it- just want to give you soem facts abotu what can happen with iliostomies- and to state i was healthier with colostomy, and had better wear time and feeling of security with pouches- I never had leaks with colostomy evne going 3 days with a pouch- and I worked hard- sweating all day- in summer- hard physical labor on farm- logging etc- I wouldn't even attempt thsoe now with iliostomy, even if i did have the strength now- as i know the exertion and sweating would result in leaking- just somethign to take into consideration- the output is goign to be very loose and watery- but hopefully the pouches will stick strong to your skin unlike mine- Good luck with your decision- it's an awful one to have to make- but might just be worth it because of the disease you have-

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

My husband had had an ileostomy since 1978.  He changed his allowance every other day.  Eats  what he wants when he wants. He uses a 3 piece system, with a skin barrier, an adhesive wafer and the pouch.  Just make sure you get all soap and lotions of your skin and that the skin is completely dry.

airborne72's picture
airborne72
Posts: 275
Joined: Sep 2012

I had an ileostomy for only six months.  This was my experience:

1) It filled constantly and sometimes rapidly.  I was forced to go to a bathroom 3 to 5 times during the night and even more during the day.  Consequently, my sleep cycle was interrupted and over time my level of fatigue increased.

2) I was cautioned about my diet and I adhered to the recommendations because I did not want to suffer a blockage.  Some items like nuts, popcorn, corn, types of meat, etc. can be swallowed without being reduced sufficiently by chewing and subsequently clog the ileostomy.  The list of what I shouldn't eat seemed longer than the list of what I could eat.  My nutritional intake was affected.  I lost weight and energy.

3) It is easy to dehydrate when you have an ileostomy because that fluid never makes it to the large intestine, where most of it is absorbed.  One of the initial symptoms of dehydration is constipation.  Since that is a non-issue with an ileostomy, the symptoms of dehydration are more subtle, and must be monitored.  This is especially important if you are comorbid or take prescribe medications.

4) When an ileostomy bag leaks it does just that - it leaks.  I had it run all the way down my leg before I realized what happened.  Fortunately, I was at home.  I had other minor leaks in public but I was able to contain the social and physical damage.  When that affluent contacts your skin it immediately irritates it because of its acidity.  The health of the skin surrounding your stoma then becomes yet another issue with CRC.  The worse it becomes the more likely that the pouch will leak.  It can turn into a downward spiral.  I once returned to the hospital and sought the assistance of one of the WOC nurses.  Her help was immediately beneficial and so appreciated.

5) Changing an ileostomy pouch is totally dependent upon your affluent.  You will be hard pressed to change it while it is active because the affluent will be running down your stomach.  Consequently, you will not be able to clean and dry and prep the skin in order to apply the wafer.  If you apply the wafer to wet skin then the wafer will immediately leak and you get back into that downward spiral.  I discovered that my stoma was somewhat inactive early in the morning and early in the evening.  That's when I had to rearrange my life to adapt to what my small intestine determined.  One of the homemade remedies I came across that is suppose to stop an ileostomy temporarily is marshmellows.  Yes, eat a couple and wait a few minutes and your stoma is suppose to slow down and stop.  I never tried it because eating marshmellows early in the morning was not something I could swallow.  I averaged 4 days with a pouch/wafer before I had to change it.

Other than all of that, I adjusted to my temporary new normal.  I kept telling myself that there are so many others who have it so much worse; I just needed to put on my "big boy" pants and live with it.  However, my ileostomy was so close to my belt line that I could not pull my pants up all the way.  Instead, I wore them high on my left hip and low on my right.

Good luck in your decision-making process.  CRC curries no favors with anyone.

 

Jim

 

Nazareth
Posts: 84
Joined: Nov 2017

good and true points airborne- and points worth considering- for some, many actually, life with an iliostomy is hard- like you say- the skin around stoma gets so iritated, and it spirals out of control soemtimes- I havel earned to combat it with stomahesive paste and the skin that starts gettign red- just a thin layer- almost so thin you can see the ski nthrough it- and it seems to help heal the skin slightly- enough that i can wear just the poiuch seal without it the next time- but i went htrough months one time where the skin was so bad pouches refused to stick - it was a very frustrating period-

Yes, mornings are best for changes for me too- it's almost totally inactive for abotu 45 minutes immediately after i get up- but then it lets loose- and I'd better have the new pouch on by then or else-

one thign i foudn to bulk up the output was metamucil (I get generic brand at 1/2 the price)- output is morel ike a firmish gel then- and much eaiser to handle if stioma starts to go whiel changing pouch- 2 heaping table spoons 3 times a day does the trick  for me- it bulks it up and it's easier to catch whiel changing- andm uch less messy-

Fatigue is another thing i didn't mention- it' a deep down exhausting debilitating fatigue- along with it comes brain fog over time- very annoying- Docs are tryign to tell me it's fibromyalgia, but i have zero trigger or tender points- so i don't think it's that- I am pretty sure it's caused by beign dehydrated alot- and becoming so exhausted and run down from lack of proper nutrition over many years-

It's really no fun havign an iliostomy- but like mentioned above- the fear of gettign cancer might be just enough motivation to get it done- hard choice- but these are soem issues that need to be taken into account before deciding for sure-

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