Iliostomy ahead

iron9nadin

Aloha,

I'm coming to the end of my treatment plan with Robotic LAR (lower anterior resection) in 2 weeks. They told me they'll be setting up an iliostomy bag. I'm sure they'll tell me all about it after surgery. I understand what it is. I'd like more info on: care tips, can I leave it off for any time, what are good food choices/preparation, are there things/ways I can prepare my home and food for ease when I return from surgery.

If anyone has the time and notes for me, I'd greatly appreciate it.

Axel7

I just left a long comment and it seems to not have shown up, leaving this one to test.

Axel7

https://csn.cancer.org/discussion/329208/iliostomy-ahead

I went through the same thing. food. keep it bland, pasta, vegetables avoid deep fried. but the most important thing is hydration. even when you are not thirsty drink water. 15 glasses a day. I was mobile so really I never had a problem getting around. I was driving after a week but I could have been driving on day one.
I had a Stoma nurse which helped with the bag, mine ordered supplies and came weekly for a month to train me and change the bag. you will have different bag models available, I went with the 2 piece, it gives you more flexibility. bags do fail and the 2 piece lets you swap them out quickly. have a small table next to your seat with 2 of everything within arms reach because once you start changing the bag, you cannot really move. your stoma nurse can do it in about a minute. you will need 3-5, more in the beginning.

leave it off? I suppose you could however there would be quite a mess, your system never stops so you need to change the bag quickly.

for me, I had people come to me while I was still in the hospital to train me, show me the different bags, I suspect they were sales reps because when I chose the bag they were not pushing they looked at me like I was the devil. they gave me 2 weeks of supplies and told me I had to contact my insurance company to order. Fortunately I had a stoma nurse who came to my home several times over the first month. She really trained me and help me choose the bag I wanted.

the bag I had used a velcro like seal, after several opening and closings, it gets worn out. it can open and spill out if you are not careful. I used a clip for additional security to keep it closed.

avoid dogs, the kind that jump up on you the last thing you want is a dog jumping up and tearing at your bag.
go shopping when things are less crowded.
keep hydrated like you have never kept hydrated before.
some of the supplies you can find on amazon if you get in a pinch.
have a tv tray with the supplies laid out next to your chair with paper towels drop cloths etc within arms reach with 2-3 of everything.
I suggest doing a practice run of the changing, it sounds silly but there are steps and you will make mistakes, and you need to do it relativly quickly because you system does not stop, I did it early in the morning as that was the time it seemed to be least active.
and finally on food, I pretty much ate anything I avoided certain things and I had a general rule, if it was something i could recognize and identify when it came out, I avoided it. Especially NUTS. you have been warned.

good luck.

Axel7

Hello, I am on the back end of what you are going through. I had the surgery last June, I had the bag for 3 months then the reversal. Let me also say you are the first person I have ever tried to help so please do not take my advice too seriously, I may be wrong in some cases, I will just say everyone is different and you have to find what works for you.
I will try to answer your questions first then give my thoughts.

No, you cant leave it off, your digestive system doesn't really stop so need to change it quickly. otherwise you will have a mess on your hands, and floor etc. I was fortunate to have an illeostemy nurse visit me several times a week for the first month. they took care of ordering the bag supplies. they can change that thing in under a minute, I never managed to get it done in under 3-5 minutes.

Food. Bland boring food. I had pasta soup nothing spicy, avoid soda pop, eat less at a time. of course I would recommend no alcohol. the biggest recommendation is Hydrate. drink water. more water than you think you need even if you are not thirsty. I had Hydration (infusion), treatment pose surgery for 2-3 weeks. it went fine. but after that I didn't have any follow up until just before my surgery, i didnt feel great but i didnt fell bad enough considering I had a bag. well when I went for my pre-op visit, my kidney numbers (creatinen) was 3X higher than my baseline. My kidneys were starting to shut down. turns out I was extremley dehydrated. I spent 5 days in the hospital having fluid pumped into me and blood test 4-6 times a day. My point is force yourself to drink more fluids than you ever though you need. I think 10-15 glasses of water daily because you are getting rid of it faster than you can take it in. Other than that, I ate pretty much a normal diet just avoiding deep fried, spicy, sugary things. You will have to experiment a little and keep the portions down.

As far as preparation, honestly I was mobile when they sent me home. I had a catheter but that was removed after the 2nd day, once that was out, I was driving myself to the grocery store. I tried to go at times when they were not crowded, oh and by the way stay away from dogs, the ones that like to jump up on you, the last thing you want is a dog trying to rip your bag away. but yes for the first week or so have something you can prep ahead of time or stuff that is easy, soup for example.

So the bag as I call it. I never thought I would be able to go though with the surgery much less having the bag. but if I can do it so can you.

In the hospital they had people come to me to show me the bags. they were pushy, as if they were selling me something. there were 2 or 3 different models of bag. I think I chose the one they did not sell as the look on their faces turned sour. I hope your experience is not the same. there are two parts to the bag, the bag it self and the gasket that sticks to you so you can attach the bag. once the gasket is "stuck" to you the bag is stuck to the gasket with this ring that snaps in. this lets you change the bag without removing the gasket.
ok, I was lucky as I said I had an ileostemy nurse coming to my home weekly for the first month. They will have some supplies and help picking the type of bag. I was sent home from the hospital with about 2 weeks of supplies, however, I talked with the nurse and asked which model she preferred and why and I ended up going with that model. I figured if she does this every day etc…..

so there are a couple of different manufacturers and models. I cant remember the names as as soon as things were reversed I threw all my leftover supplies away. but I will describe them the one I went home from the hospital had a flexible fabric gasket, kind of like modern bandaids, and the bag opened at the bottom so you can empty it without removing it. this opening was sealed with a velcro like seal. this velcro thing after a few openings and closings gets worn so I ended up putting a little clip on it to ensure it did not open. I had a couple of accidents. the trick to the gasket working is the prep work. I recommend a tv tray with all your supplies lined up within reach and a reclining chair so you can have everything lined up, and have 2 of everything just in case you make a mistake or drop something. they will train you how to do all this.

There are also disposable bags, and one piece bags where the gasket and bag are already attached together, I liked the two piece as it seemed easier to install, and you can change the bag without removing the gasket.
As far as ordering the supplies, I was lucky, my nurse took care of that otherwise I would have needed to figure it out myself through the insurance company. they set me up with enough supplies to last until my surgery.

ok, that is all I can think of, you will get through this. Best of luck.

axel

Axel7

I went through the same thing. food. keep it bland, pasta, vegetables avoid deep fried. but the most important thing is hydration. even when you are not thirsty drink water. 15 glasses a day. I was mobile so really I never had a problem getting around. I was driving after a week but I could have been driving on day one. I had a Stoma nurse which helped with the bag, mine ordered supplies and came weekly for a month to train me and change the bag. you will have different bag models available, I went with the 2 piece, it gives you more flexibility. bags do fail and the 2 piece lets you swap them out quickly. have a small table next to your seat with 2 of everything within arms reach because once you start changing the bag, you cannot really move. your stoma nurse can do it in about a minute. you will need 3-5, more in the beginning.

leave it off? I suppose you could however there would be quite a mess, your system never stops so you need to change the bag quickly.

for me, I had people come to me while I was still in the hospital to train me, show me the different bags, I suspect they were sales reps because when I chose the bag they were not pushing they looked at me like I was the devil. they gave me 2 weeks of supplies and told me I had to contact my insurance company to order. Fortunately I had a stoma nurse who came to my home several times over the first month. She really trained me and help me choose the bag I wanted.

the bag I had used a velcro like seal, after several opening and closings, it gets worn out. it can open and spill out if you are not careful. I used a clip for additional security to keep it closed.

avoid dogs, the kind that jump up on you the last thing you want is a dog jumping up and tearing at your bag. go shopping when things are less crowded. keep hydrated like you have never kept hydrated before. some of the supplies you can find on amazon if you get in a pinch. have a tv tray with the supplies laid out next to your chair with paper towels drop cloths etc within arms reach with 2-3 of everything. I suggest doing a practice run of the changing, it sounds silly but there are steps and you will make mistakes, and you need to do it relativly quickly because you system does not stop, I did it early in the morning as that was the time it seemed to be least active. and finally on food, I pretty much ate anything I avoided certain things and I had a general rule, if it was something i could recognize and identify when it came out, I avoided it. Especially NUTS. you have been warned.

good luck.

https://csn.cancer.org/discussion/329208/iliostomy-ahead

I think I have p

Axel7

I went through the same thing. food. keep it bland, pasta, vegetables avoid deep fried. but the most important thing is hydration. even when you are not thirsty drink water. 15 glasses a day. I was mobile so really I never had a problem getting around. I was driving after a week but I could have been driving on day one. I had a Stoma nurse which helped with the bag, mine ordered supplies and came weekly for a month to train me and change the bag. you will have different bag models available, I went with the 2 piece, it gives you more flexibility. bags do fail and the 2 piece lets you swap them out quickly. have a small table next to your seat with 2 of everything within arms reach because once you start changing the bag, you cannot really move. your stoma nurse can do it in about a minute. you will need 3-5, more in the beginning.

leave it off? I suppose you could however there would be quite a mess, your system never stops so you need to change the bag quickly.

for me, I had people come to me while I was still in the hospital to train me, show me the different bags, I suspect they were sales reps because when I chose the bag they were not pushing they looked at me like I was the devil. they gave me 2 weeks of supplies and told me I had to contact my insurance company to order. Fortunately I had a stoma nurse who came to my home several times over the first month. She really trained me and help me choose the bag I wanted.

the bag I had used a velcro like seal, after several opening and closings, it gets worn out. it can open and spill out if you are not careful. I used a clip for additional security to keep it closed.

avoid dogs, the kind that jump up on you the last thing you want is a dog jumping up and tearing at your bag. go shopping when things are less crowded. keep hydrated like you have never kept hydrated before. some of the supplies you can find on amazon if you get in a pinch. have a tv tray with the supplies laid out next to your chair with paper towels drop cloths etc within arms reach with 2-3 of everything. I suggest doing a practice run of the changing, it sounds silly but there are steps and you will make mistakes, and you need to do it relativly quickly because you system does not stop, I did it early in the morning as that was the time it seemed to be least active. and finally on food, I pretty much ate anything I avoided certain things and I had a general rule, if it was something i could recognize and identify when it came out, I avoided it. Especially NUTS. you have been warned.

good luck.

Axel7

I can echo brneyedgirs comments, for the most part. I did chemo first 16 weeks 8 treatments. then 5 weeks radiation with a chemo pill, 10 weeks off then surgery to install the bag. neuropathy was mostly gone at this point but came back post surgery.

"How did the PILL or PUMP version effect your day to day function and immune system?"

during chemo I had the pump for the first 2 treatments, it went into alarm so much that they switched me to the "bulb" which was trouble free. after each treatment, they would give me some sort of immune booster shot. during radiation I also took a chemo pill on the days of the treatment, daily for 5 weeks. no booster shot during this. stayed home on the day of and the 2 days following chemo. other days I was in the office working as normal. during flue season. I was around people regularly. I never got sick. now I have not had the flue or a cold of any sort since maybe 2019. In short under chemo my life was pretty much normal just a few precautions needed.

During chemo developed neuropathy, I wore gloves most of the time outside. the bulb is like managing an old Walkman with wired headphones. and it was only a couple days every 2 weeks.

During radiation, it has a cumulative effect by week 3 I went out of work on short term disability, you are too tired and you start to lose bowel control. I recommend trying to schedule first thing in the morning. unfortunately, for me they could not do that my appointments were all in the afternoon, and remember they want to have a full bladder when you do it. so I would avoid eating all morning and then an hour or so before my appointment, drink lots of water (they will tell you how much) and goto my appoint ment. the problem I found was that they were often behind schedule by the afternoon so I would have to wait and "hold" it in longer. also, get some clothes that have absolutely no metal anywhere on them and they may let you just keep them on without changing. during all of this I drove myself to the treatments and was independent, worked, heck during chemo I was attending conference calls keeping up with things. it is the 2 days after chemo that were bad.

https://csn.cancer.org/discussion/329208/iliostomy-ahead

iron9nadin

Thanks so much for the feedback!!