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Short Bowel Syndrome


AlexanderUK
(@alexanderuk)
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Hey everyone,

I’m struggling with short bowel syndrome (basically my ileostomy floods regularly and the liquid eats my bag so I have to change it sometimes twice daily). I’ve tried different bag brands but they don’t seem to be able to cope with the volume of fluid. I’ve tried paste, powder & barrier wipes too.

My diet is mostly carbs to bulk it (pasta, noodles, rice, etc). Apple sauce and marshmallows don’t seem to help. My stoma team are out of ideas as they tried meds which failed to help.

I thought I’d open the floor to ideas as it’s exhausting work having rapid fluid loss and sore skin. Plus all the carb loading to slow the output is making me gain weight. If there’s something I should add or change from my routine or diet, all feedback is much appreciated!


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irshandy
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i know this sounds silly but would you have high sugar intake? when my kids were babies we were instructed to give them sugar water to relieve constipation as it attracts water into the output. might something similar be happening you?


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AlexanderUK
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Not especially high, though I could try cutting all sugars (non-natural) out of my diet to see if it helps).


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sjlovestosing
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@alexanderuk 

 

Hi Alex, 

 

I'm sorry to hear of your troubles. I am not a dietician, but any carbs break down into sugar. Maybe you could try a diet that contains less carbs? If you want to bulk up, foods that contain good fats, such as nuts, can be added to your diet. Are you vegan? If not, then try eating more chicken. Eating anti-inflammatory foods, may be helpful. You can find a list of these on the internet. Hoping all goes well for you soon!

Stella


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AlexanderUK
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@sjlovestosing Thanks for the feedback! Essentially I'm trying to bulk up (thicken) the watery output so that it won't be as leaky and dissolve my bags as quickly and my dietician team (for what they were worth) said that carbs like pasta and rice do that in the gut (but it isn't really working).

One thing which will setback dietary changes is that I have quite a few anaphylaxis allergies including dairy, nuts & fish which constrain my already affected stoma based diet!


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Stella
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Alex, I found out that a little fiber on my food will make my output not that watery. My family doctor suggested me to do that as well.

I hesitated to use the fibre powder because I worry blockage. But I prefer to use the natural fibre like vegetables.  It seemed work. 

I added broccoli to be cooked together with my white rice, add some salt and olive oil for taste (may not taste good for others). This seemed thicken my output.

Even I ate an apple without skin and chew it well, my output also seemed was thicken.

If you want to try, please try little by little to avoid blockage. And chew it well until food turns almost into liquid.


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Stella
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One more thing I noticed. If I drink water or any liquid like juice, with an empty stomach, watery output came very quick almost is immediately after I drink. Therefore I prefer to drink after my meals or with my meals.


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sjlovestosing
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@alexanderuk 

Yowsers, Alex! It sounds like you have a lot going against you! Stella, above, may have something there. BRAT - an acronym for bananas, rice, applesauce and tea. Those are know to bulk up watery stool. I learned that years ago as a young mother when the nurse at the pediatrician's told me that when children have diarrhea, they tend to be "brats". (I guess that's one way to look at it!)

God bless and hope you find a solution soon!

Stella


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VeganOstomy
(@veganostomy)
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Posted by: @alexanderuk

I’m struggling with short bowel syndrome

SBS is often difficult to manage, simply due to the fact that most diet-related interventions don't seem to help much. 

My stoma team are out of ideas as they tried meds which failed to help.

That's disappointing, since meds are the typical "solution" to slow things down in SBS. You may also want to ask about something to help you absorb nutrients that are usually "flushed out" with the high transit time and lack of small intestine. 

Gattex is one drug specifically designed for patients who have SBS and I know a few people who have been on it. I'm not sure if that's an option for you.

You might also want to get in touch with an SBS organization/charity like the short bowel syndrome foundation, who may be able to point you to additional resources and/or support. 

Good luck! Please keep us updated on any progress. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


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