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Short bowel

Hi cathy, how are u dealing with it then?
Not so good , I’m in tpn 14 hours every day , prior to surgery I never imagine I was going to end up with just three Ft if small intestine I’m still in shock I’ll have stayed with my inflamed fiztulixed guts if I knew I was going to be like this
 
I was diagnosed 25 years ago in 1993, I got an acute pain while I was 3 months pregnant, at first they thought it was apendicitis ...was doing ok with just asacol with just light diahrrea for 17 yrs till I got a second perforation in 2011 when I got a temporary ileostomy ...I was on asacol , entocort , xifaxan, Cipro, but I was always scared of the biológics so was a mistake not to take them it cost me loosing 2 feet of inflamed small bowel ...
 
Understood.. it's shocking your docs and surgeon didn't alert you on risk of sbs before the surgery.
Is there no way at all your bowel can tolerate normal food now?
 
Understood.. it's shocking your docs and surgeon didn't alert you on risk of sbs before the surgery.
Is there no way at all your bowel can tolerate normal food now?
I know I ask and he said there was no way to know beforehand in the Mri I did 5 months prior didn’t say how long it was ..., I’ve been eating that’s not the problem is that all comes out mostly undigested because is so short so I’m like consistently hungry,
 
They want to start stelara and Gattex, they think my three feet of gut can absorbs more if I use the Gattex , but I read about all the side effects and I’m scared to use it .. this is becoming unbearable all the massive output of my stoma, the tpn , I wake up all times to pee, and drenched in sweat ... it’s hard let me tell you ..
 

my little penguin

Moderator
Staff member
Have they looked at amino acid (elemental based formula )?
It’s designed for short gut /allergy /EoE etc... and only needs a few inches of healthy intestine
Ds has not had any surgery
He was dx at age 7 now 15
But does drink neocate jr chocolate (orally no tube ) which is amino acid based (at one point all he could tolerate ) now drinks it plus food
Also has been on Stelara since August 2017
Hope Stelara calms things down (takes 6-8 months to work though )
 

my little penguin

Moderator
Staff member
Vionex is for adults
Neocate jr tastes very foul
But Ds can tolerate the chocolate orally
Needs to be very cold (not frozen )
Pinch you nose at first till you get used to the taste
And use a straw to bypass the taste buds
After a few days Ds could drink 16 oz quickly with a straw warm if needed
But at first an oz was difficult
He is 15 -so technically only good till age 13
 
Vionex is for adults
Neocate jr tastes very foul
But Ds can tolerate the chocolate orally
Needs to be very cold (not frozen )
Pinch you nose at first till you get used to the taste
And use a straw to bypass the taste buds
After a few days Ds could drink 16 oz quickly with a straw warm if needed
But at first an oz was difficult
He is 15 -so technically only good till age 13


Oh thanks I’ll look into it, do you know if these can be covered by insurance?
 

my little penguin

Moderator
Staff member
Ds has his covered by insurance
Under medical side as durable medical equipment
Not through prescription plan
But coverage for formula can be hit or miss
Oley foundation can help some in the US
 
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