Will Perone

Ileostomy

1 month before the Ileostomy surgery
Me at 90lbs a month before the ileostomy surgery (2004)
Hopefully you won't get to this point but here's what I ate during my 3 months with an ileostomy.

Good Food

cranberry juice
grape juice (cleans out intestinal blockages)
high sodium food (normally absorbed in the large intestine)
high potassium food - bananas, orange juice, apricot juice, grapefruit juice, squash, potatoes, tomato sauce, smooth peanut butter (normally absorbed in the large intestine)

Bad Food

Veggie chips
pizza crust (causes blockage)
calzone (causes blockage)
scrambled eggs/omelets (will make the bag fill with gas)
mushrooms
corn
nuts
high fiber/gassy foods

Notes

  • You are more likely to get intestinal blockages which are incredibly painful during the ileostomy and months right after the J-pouch reconnective surgery. Drinking grape juice and taking a warm bath can remove an intestinal blockage. If it doesn't go away within an hour you need to get to an ER.
  • You will probably have to empty the bag at least once during the night
  • Don't roll over and lay on the bag during sleep, it may burst!
  • Try not to eat a couple hours before sleep
  • Make sure to drink plenty of water and take plenty of potassium/sodium. These are normally absorbed in the large intestine.
  • Get a doctor's note before flying and attempting to bring the ileostomy scissors/kit on a plane.
  • The stoma may change in size over time; make sure to check the size of it when you change the bag. If the hole in the bag for it is too large your skin may get irritated/burned.


Colitis Information

Main Page
What is Ulcerative Colitis
Ulcerative Colitis
Ileostomy
J-Pouch

Support

I live in the San Francisco Bay area. If you are interested in meeting in person or talking about UC, please email me at colitis@willperone.net or contact me via AIM as megamanse81, YahooIM as willperone or gmail chat as will.perone.

20 Comments
Sharry 3 2
Some of the tips I've learned with my illiostomy....

*When empting the pouch, place a few squares of toilet paper flat in the toilet so it floats ontop of the watr. This will prevent "splash back" from the droppings.
**Carry a small Glade air freshener spray in your coat pocket.

These seem to make my life a little easier.
Your Name 3 0
do u have a j pounch
Jeff Neigum 1 3
I had J pouch takedown surgery one week ago. I am trying different foods that are recommended on the jpouch.org website. I am still going to the toilet at least 30 to 40 times a day and my butt is soo sore. Can anyone tell me what to expect for the first few weeks after the takedown surgery and any recommendations to lessen my trips to the toilet as well as what works best to releive the pain of wiping my butt. Please help me. My email address is desertsage@plmw.com. Jeff
Janice Taylor 2 0
Hi ya it can take up to several weeks to get your whole body adjusted to the change I followed a low residue diet for sometime before introducing new or foods I use to eat with no probably i.e. corn too much fibre nuts lots of vegies etc. The bum area gets a hammering for a while and even after having mine for 6years the butt still goes just no where near as bad. Time is a healer so they say and this definitely applies to this huge type of surgery. I suggest being patient and takes things slowly I wouldn't change anything now as have come so use to having it and coeliacs disease too keep positive and it will all come right. Take care.
Christine 0 0
i hated the bag so much. i know alot of ppl say that during their time with the bag they came to feel it wasnt so bad and they could live life that way if they had to. but for me its now my worst fear that i would ever lose my pouch and have to have that dreaded thing again. taught me more about life than anything. unfortunately tho it also scarred me more than anything. i was 19 when i had the surgeries. i had a ton of problems with the skin surrounding the ostomy - so my best advice is if you are having ANY problems with itching and whatnot, get your ostomy nurse and pin her down until she helps you - i didnt utilize mine enough because i guess i was stubborn and depressed and thought there was no help - but there is always more help you just have to be relentless
rebecca 4 0
i could just imagine my father lives with this its a horrible thought but he pulls it off
ellen 5 1
had my ileostomy two years ago, as an emergency, hate it, hate it, I had to laugh though at a comment on the internet, who put my arse on my stomach, I think that sums it all up
Linda 4 0
Just had my colon removed and thanks to complications now have temporary ileostomy. My stoma is small and recessed. The skin around it is red (and it does itch some). I use the powder and spray before applying my moldable appliance. I have been told to minimize changing to allow skin to heal. Any ideas as to how to treat this? Also, how are you supposed to shower? I just get in bag and all and try to dry area after with my hair dryer on low setting. How do others handle showers?
Will 1 0
This was a few years back for me but from what I remember I used to either just take the bag off so it would clean in the shower or I think I was also able to just shower with the bag too but I'm not entirely sure if I'm remembering that right.
Egypt 2011/07/08 Contact Me0 3
I had no idea how to approach this before—now I’m locked and lodead.
2011/11/1610 1
How do i stop my stoma acting so much at night I am up 3/4 times ?
Kenzi 2011/11/29 Contact Me1 8
My son was born with Total colonic Hirschsprung disease and had to have his colon removed. He had an ileostomy for 6 months. Today he had his ileostomy takedown surgery, but no pouch. He has his ileum connected to his rectum. I am having trouble getting in contact with anyone who has had this done. Lots of people with the pouch but none with ileum connected to rectum. I am trying to get some feedback from people who have has this procedure done, do u know of any support groups?
Will 2011/12/010 1
I have talked with some people with their ileum connected to the rectum but I've never heard of Hirschsprung disease, not sure if there is a support group specifically for that.
lenamom 2012/01/20 Contact Me1 1
My son is 16 years old and and just had a Ileosotomy Jan 11,12 after he had a j-pouch 4 years ago. His j-pouch kept getting infected so he had a reversal to calm the pouch down. It was helpful to know that grape juice helps with blockage because he would get them when he had his ileostomy be for the reversal in 2007. He is move ready for the bag now because he had pouchitis so much he said that this would be a relief from all the antibotic he was taking this time he would have the bag for 1 year.thanks again your webpage was helpful
Lenamom3
Roberta 2012/03/18 Contact Me1 2
I had my colon partially removed & a colostomy bag, March 2011. In dec. they tried a reversal but could not get in the rectum which was Stenosis. On Mach, 2012 I had my rectum rebuilt & a j-pouch built which is now healing. I have an oleostormy bag. Which has to heal. I'm having the barium test this week to see if there is any leakage. Then they will do the reversal. The comments about having to go to the bathroom 30 times,doesn't give you much of a life. Thanks for all the information I received from your blog. I hope I can adjust.
biorelief 2012/04/06 Contact Me0 0
The post is absolutely fantastic! A lot of information and inspiration, both of which we all need!
2012/11/09 Contact Me1 2
I had my bag Ileostoma bag removed couple of month ago too and from reading all of this about the burning and itching feeling, I was wondering would it ever go away its been 2 month without it now... can you inbox me on facebook about information and details
Josh 2013/02/26 Contact Me1 1
30 times a day seems excessive, what are you eating? how much stool control do you have? I am surprised i had my ileostomy with jpouch reconnection done on 1/11/13 and was put back on a normal pre surgery diet 3 days later. I hear about blockages, and have been troubled felt bloated by beans and peanuts, but time does the trick and everything goes through after awhile. I lost a total of 20 lb and stabilized at 155. Fear and stress can lead to blockages just as easily as diet, which i have known several other people who have the same condition and none of us say the same things work, it is odd but true. I do find i have tons more heartburn, which i never had before, but i have full control over my bowls since i am passing mucous these days. Take down happens in 2 weeks, i would say the surgeon makes a huge difference in this matter, make sure you get a god one! Had all on my colon removed.
Sandy 2013/04/30 Contact Me2 5
I had my colon removed in August of 2010. Did not get the take down until January 2013. The wait was not for "health" reasons - I had a sick family member at the time. After the take down, I was going about 24 times a day for the first week or two. Three months later, I still feel that I go a lot, but the frequency has definitely lessened. Sometimes I feel that the toilet is ruling my life. I find that I have the urgency to go and push and push but nothing happens. Then I get up, go about my business and within minutes the urgency comes back and I have to run to the bathroom again. However, I much prefer the j-pouch to the ileostomy bag. My reason for removal of my colon was different than most - I had familial polyposis - which means I had thousands of polyps throughout my colon - non cancerous, but always a threat to become cancerous. I had a normal life up until the time I got my colon removed. Now my life has changed, but I don't regret having this done because the threat of cancer was just too scary. I feel fine and am actually gaining too much weight. All I want to do is eat - and of course that ties me to the toilet. So most of my frequency is my own fault.
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