Introduction - New Ileostomy haver

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DWoboyle
Posts: 6
Joined: 2023-03-06 01:56:43

Introduction - New Ileostomy haver

Post by DWoboyle »

Hello folks,

I'm Dave, aka DW. I'm 37 and live in Seattle. Due to a combination rectal cancer, 17 years with Ulcerative Colitis, and some additional complications, I had to have my large intestine removed entirely. My surgery was back on January 13th (lucky Friday the 13th!) and I'm finally getting back to a sort of normal in my recovery. Thankfully both my surgery and recovery have gone very well and I'm almost back up to my original weight.

I've been meaning to find an online support group for a few weeks now (ideally something that meets regularly and is roughly around my age group) and figured I may find that here. I figure there is like a ostomy discord server out there somewhere for me to join.

Other than that I've been getting used to having an ostomy bag and am pretty comfortable changing bags already. It's certainly a different experience and I can't say I prefer it mechanically to having a large intestine, but in the context of what I was going through, I'm so glad to have that dang thing out of me. The ostomy bag is a small price to pay for the 17 years of misery my large intestine was causing me to be honest. Especially towards the end there. I will spare you all the details.

I do have some questions and instead of making a thread for each I figured it might be better to have them all here:
1) My partner has complained that the bathroom smells a lot worse after I empty my bag. Is there anything I can do to prevent or reduce that. I, personally, do not notice. I do know there are accessories (ConvaTec "Diamonds") I can insert into my pouch to help thicken the output and supposedly those reduce order and gas, but I don't know if my insurance will cover them yet and I'm curious as to what my options may be.

2) For those with ileostomies, how frequently should I be expected to empty the pouch? I've been doing it at my convenience, usually before I'm about to do something (like watch a movie, go to the store, etc), but sometimes it's 10+ times a day and that feels like a lot.

3) I've noticed the consistency of the output varies wildly, even from hour to hour. Sometimes it's basically watery and other times it's fairly solid. Is this normal for an ileostomy? My ostomy nurse said it's not something I should worry about, but I can't help but wonder. I do notice it's way more liquidy after eating lots of vegetables without something like bread or meat.

4) My ostomy nurse mentioned that I should be extra careful about heavy lifting due to a massively increase chance of a hernia. This has me spooked! Admittedly I started reducing my recovery PT because of it and try my best to avoid lifting anything more than like 20lbs at a time. How careful do I actually need to be regarding exercise? I would like to do stuff like hiking and other hobbies that may involve heavy backpacks and the like.

I think those are my major questions at the moment.

Thank you for creating a place where this sort of support can be provided. It is extremely appreciated!
Mysticobra
Posts: 640
Joined: 2016-01-20 23:25:36

Re: Introduction - New Ileostomy haver

Post by Mysticobra »

Welcome to world of change. It's not what we want of course but as you mentioned.
All the pain and discomfort is gone!

1. I use a product called Just a Drop. Amazon has it and it works.
I don't add anything inside my bag.

2. This all depends on what you eat and how comfortable you are carrying stuff in your bag. Me. I dump 10- 15 a day. I don't like anything in there. So I empty often. It was less when I worked. When I go somewhere I limit my eating before I go out. But sometimes I do have to empty. I carry an empty bottle of water and use it to empty. Fill it in the bathroom. And use it to rinse out. It works for me. Too messy without water and rinsing.

3. It is nothing to worry about. That too depends on what you eat.

4. At the beginning of course you you have to be mindful of what and how much you lict.
As time goes and you heal more you'll know what and how much you can lift.
I've had mine over 7 years. Lifted some stuff I probably should not have. We basically have a surgically created hernia to start . Lol. Just be mindful and I think it's easier to get another from lifting.
Your in a good road. Seems. Already.
Like I said. It's not something we want to end up with. But it's alot better than what we have gone through to get here. This is much easier.
Richard.
jstl
Posts: 170
Joined: 2009-12-01 21:07:28

Re: Introduction - New Ileostomy haver

Post by jstl »

Hi and welcome DW,
I had my ileostomy when I was 15 years old in 1974 (!) after 10-11 years of ulcerative colitis and related stuff. As a vintage ileostomy owner, I've tried lots of things.
Though I don't know what would work for you specifically, here are some thngs that did work for me, fwiw: For odor: chlorophyll tablets - you can now find them as brands like Chlorofresh or Puritan's Pride on Amazon - I think I got mine from GNC and I'll bet Whole Foods carries some version). Chlorofresh worked well for me in almost eliminating odor, though I don't currently use it. Eating parsley helps me really well (but chop it or chew it well) and that's what I use now. At one time I used Devrom tablets - they were ok but I didn't like the 'feel' of the tablets. In a pinch Pepto bismol chewables can take the edge off odor also but likely shouldn't be used on a regular basis. You can also put things in your pouch. You mentioned Diamond gels (I've never used them) and there's Brava lubricating deodorant (Coloplast) and M9 drops (Hollister). I've tried M9 and they worked for me. In a pinch, I've put mints (like TicTacs and Altoids) or cough drops in my pouch and these kind of mask the odor but they're not overly effective. I once used a Listerine breath strip for that also - same thing -just masked it , but better than nothing. Outside your body and pouch , there's always Poo Pourri spray you can aim in the toilet before you go - it does work.
As for whether insurance will cover, it of course depends on your insurance plan. Medicare and insurance usually will cover the supplies deemed medically necessary. So puches are covered as prosthetic devices (yup) but odor control might be considered a choice. I've always paid for mine out of pocket.
Good luck to you. It sounds like you are well on your way ...
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ron in mich.
Posts: 1520
Joined: 2005-10-18 11:56:17

Re: Introduction - New Ileostomy haver

Post by ron in mich. »

Hi DW as you know everyone is differant and eating habits also applies, but in general what you eat and how much is what usually determines how much emptieing will have to be done, also how much fluids drink will have an effect on emptieing your early on with your ilieo. and over time it should change some, as for lifting if your core was in good shape from working out your not as likely to get a hernia but i wouldnt jump right back into lifting weights and such, and as for odor everyones poop stinks not just us ostomates but at home i just light a small candle and let it burn for 5min.
Mysticobra
Posts: 640
Joined: 2016-01-20 23:25:36

Re: Introduction - New Ileostomy haver

Post by Mysticobra »

I wish I knew how to add a picture of what I use to eliminate odor.
I mentioned it above. Just A Drop.
It works so well. No eating or adding stuff to your bag everytime.
It's so simple. It's not that expensive. 4 bottles for 16 bucks. And they last a long time.

Wow. 1974! That the year I graduated from high school. I was 17.
I cannot imagine going through this as a young person. We go through so much as a teenager. In hindsight I had uc back then. I didn't know what it was. Never had a flare.
But when I turned 40 I had one. By now I've had a j pouch and now the ileo. Which works fine. But I can't imagine how it would have been doing all this as a teenager.
You have alot of good suggestions. It dissing those.
I just find the drop the easiest way for me. And I use them for my wife. She says to get them because I stink. Lol.
R.
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DWoboyle
Posts: 6
Joined: 2023-03-06 01:56:43

Re: Introduction - New Ileostomy haver

Post by DWoboyle »

Thank you all for your suggestions! I really appreciate it!
NEskier
Posts: 928
Joined: 2009-02-15 01:44:40

Re: Introduction - New Ileostomy haver

Post by NEskier »

I've had my ileo since 1984 so we are old friends. WAAY before online forums so my journey was learn by doing and incredible good luck. I only saw an ostomy nurse once while in the hospital. She suggested support groups but they didn't meet in my area during the summer when I got out and I had things under control by the fall.

What you can eat is an experiment and what you might find will change as you heal more. I was advised to allow a year before I was going to be 100% back to 'normal' (new normal!). Initially I was very careful about anything with fiber. Over time I figured out what I could handle and what just wasn't worth it. I still tend to cook veggies softer but I eat salads all the time. I'm super careful with nuts, mushrooms, celery (which should only be used to stir Bloody Mary's anyway!) and that sort of dense stuff. Output with veggies is much thicker.

When I first had the surgery I emptied all the time. Now it's less often depending on what I'm doing. Leaving the house, absolutely. Hanging around I might let it go longer. It's more the 'feel' of it. Too full is uncomfortable.

On the exercise side of things. Yes, installing an ostomy is pretty much a hernia, since it's a hole in the abdominal wall. And having it fully healed before lifting anything much is key. When I first got out of the hospital it was nothing more than a half gallon of milk type weight. Over time my stoma shrunk to between 7/8 and one inch in diameter. It's small. The first exercise I was encouraged to do was walk. I did that a LOT. Three months later the first attempt at jogging was so uncomfortable! The feel of the abs bouncing (I came out of the hospital more than 50 pounds lighter, after being in for a month) icked me out! But I kept at it. A few years later, with no one to say I still shouldn't lift a lot of weight, I did. I think not starting for that long saved me. I was a gym rat and won't even tell you how much I did .... lifting was my sanity in grad school. Over the years I've been a certified personal trainer and now, retired from my desk in corporate America, I teach and practice Pilates. So heal first, listen to your body, and don't push your luck! If I had my surgery after the internet, I probably never would have done the weights the way I did. These days I also jog, ski, sail and what ever else amuses me. No more weights but that's a cardiac issue. :roll: I would say for exercise, the stoma size is more of a concern I might have for a hernia worry, and that's a totally unscientific observation! :lol:
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Introduction - New Ileostomy haver

Post by To Dream a Dream »

Lots of good input from our members above. 'Hi' & 'Thanks' to all for the response. Will just add a few points of my own. Another consideration regarding output is how much small bowel was removed surgically. Usually, the less you have left, the quicker they move. And the more frequent & liquid the consistency. I've found it advisable to become familiar with the process because any sudden or drastic changes may signal an impending problem. Also, foul odors not attributable to something eaten may be another sign.
Hopefully, yours will continue to be a smooth transition. Thank you for raising issues faced by many new readers of our Discussion Board who will benefit from this post.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
JimPops1
Posts: 4
Joined: 2023-03-20 18:01:47

Re: Introduction - New Ileostomy haver

Post by JimPops1 »

This message board is great, extremely helpful. I just had a total collectomy and illeostomy on March 2 (cancer), also after 17 years with UC.
Still sorting thru what I am going to ask folks here.
Can tell this will be a great resource for me. Thanks.
Jim, 64 — just got sutures out today
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Introduction - New Ileostomy haver

Post by To Dream a Dream »

Welcome to our Discussion Board & thank you for your post. Yes, this is the place to be for questions & answers from the folks who can empathize with what you are experiencing. Please feel free to visit us 24/7.
Other good resources are the main UOAA Website that is chock full of all sorts of information. And the UOAA magazine, The Phoenix. Here's a link: https://www.ostomy.org/
Thanks again for joining us.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
ostomy211
Posts: 6
Joined: 2017-01-16 09:35:29

Re: Introduction - New Ileostomy haver

Post by ostomy211 »

The UOAA discussion board is extremely helpful. I agree. If you'd like to add another support group, feel free to go here too:
https://www.facebook.com/groups/ostomyfamily
Debi Fox, Director Ostomy 2-1-1
501 (c)(3), EIN 47-2744902
405-243-8001
JimPops1
Posts: 4
Joined: 2023-03-20 18:01:47

Re: Introduction - New Ileostomy haver

Post by JimPops1 »

Thanks for the info.
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