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Hello, new ileostomy, lots of questions  

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Bubbles
(@bubbles)
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Joined: 3 years ago
Posts: 244
August 31, 2018 8:37 pm  

You are fresh out with your Ileo. Things will slow down but it takes time . I just hit the one year mark and am finally seeing a difference. I still take 6 mg of generic Imodium ( walmart brand) every morning with just a couple sips of water then I wait 30-45 min before I start eating or drinking . This is the only way Imodium works for me . Otherwise it's like I never took anything. Try  that .

I use to get fluids every 3-4 weeks then every 6-8 weeks now I might go every three months if I don't keep up with my liquids i live in tropical climate .Things get better . Hang on . 

 Be well,. Bubbles 


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Empoweringpts9
(@alilimo9)
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Joined: 4 years ago
Posts: 6
September 1, 2018 1:25 am  
Posted by: z1821
Posted by: Empoweringpts9

Hi Zach! Welcome to the ostomy family. You’ve started off in a pretty good place here and at home with a good support system. I’m so sorry to hear of the turmoil you’ve been through between the blockage and the vocal chords. Are you saying you’re traveling for the next vocal chord surgery? I may have missed a detail, which wouldn’t be surprising for me. 😉

I’ve had my ileostomy for 15 1/2 years. I’m always learning something new.  

 

On the high output. Has your careteam Rx’d lomotil or something similar to try to slow it? I know it’s extremely draining literally and with the body. I have a high output (right now it’s more “stable” since I’m dealing with daily partial obstructions), so I’ve been around that block a time or two. There’s all sorts of thickening and bulking agents, like what Eric referred to and to sprinkle into something you’re eating anyway etc. I wish you well with each day. Know that we’re here for you. 

Im taking 2.5mg of lomotil x4 a day and 16mg of loperamide. I was also on tinctue of opiates, and so far nothing has thickened my output up.

You’re definitely getting the same treatment that’s familiar to many. The tincture I tell people I don’t know who tasted the black licorice to tell people it tastes like that, but it sure as heck doesn’t taste like that to me!! You’re still super fresh and your intestines are still getting acclimated to the new lifestyle and all of the commotion. Increased output isn’t a surprise as well as crazy amount of gas (that was my other huge complaint for so long). I recall the suggestions of trying to take the anti-diarrhea meds about 20-30 mins prior to first bite of food, if it’s possible. This gives the med time to do its intention on that actual meal and slow things down. I know I don’t always know when I’m going to have even a bite, so I then got onto a schedule of taking it throughout the day and on my way to the kitchen. I know bulking up your output isn’t always the most comfy (at least for me), so doing it when I have an idea of what I want to accomplish is helpful. I know I’d dip pretzels in peanut butter to help, eat homemade Rice Krispies treats, suck on applesauce a few times a day, and other thick foods. Rice is a common one, but ironically rice doesn’t always bulk me and it tends to come out just like it went in, so it can have the opposite effect on me. I know there’s potato powders to add to smoothies to help thicken and there’s something called guar gum that I’ve heard added to foods for thickening too. I’d say to be careful and obviously slowly try as you don’t want to go the opposite route.

Re IV fluids: IV fluids go straight to my ostomy at first too! Drs always think I’m making it up since that just doesn’t make sense, but I’ve come across others recently that have said similar response for them. I found it doesn’t go through me as fast if I don’t run full open, but more on a standard good speed like 200. Then I feel like I’m getting it to stick around in my tissue and kidneys like it’s supposed to. There’s times I take anti-diarrhea med for IV ringers. 

Soemthing that just came to mind, do you take the liquid forms of the anti-diarrhea meds or do you chew the tablets? You may not be absorbing them with high output. I learned that personally too. 

Alison 👋🏼
Crohn’s disease + permanent ileostomy


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LK
 LK
(@dlkfiretruck)
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Joined: 3 years ago
Posts: 857
September 1, 2018 2:09 am  

Empoweringpts9...Hi Alison, I was trying to PM you tonight but there is no message for that in your members site. Eric?  You mention that you are dealing with partial blockages. Have you ever been told you get pseudo-blockages? Maybe we should start a new stream on this? I will give it a try. Please look for it.  Thank you. Linda

Linda


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