02-02-2019, 11:23 AM   #1
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
Short bowel

I ended up with short bowel after my third resection
02-07-2019, 06:13 PM   #2
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
Hi cathy, how are u dealing with it then?
02-07-2019, 08:36 PM   #3
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
Hi cathy, how are u dealing with it then?
Not so good , Iím 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 Iím still in shock Iíll have stayed with my inflamed fiztulixed guts if I knew I was going to be like this
02-08-2019, 05:07 PM   #4
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
I'm sorry to hear this... what's your story, when have you been diagnosed and what was your treatment?
02-09-2019, 01:47 AM   #5
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
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 biolůgics so was a mistake not to take them it cost me loosing 2 feet of inflamed small bowel ...
02-09-2019, 03:45 AM   #6
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
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?
02-09-2019, 12:39 PM   #7
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
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 didnít say how long it was ..., Iíve been eating thatís not the problem is that all comes out mostly undigested because is so short so Iím like consistently hungry,
02-16-2019, 04:10 PM   #8
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
I'm sorry to read that

What did the doctors said?
02-18-2019, 12:35 PM   #9
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
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 Iím 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 ... itís hard let me tell you ..
02-18-2019, 09:54 PM   #10
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Have they looked at amino acid (elemental based formula )?
Itís 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 )
__________________
DS - -Crohn's -Stelara -mtx
02-19-2019, 05:20 PM   #11
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
I just bought a can of neonate to try it out, it say for pediatric use but I guess as a supplement I can try it ...
02-19-2019, 07:09 PM   #12
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
02-20-2019, 12:16 PM   #13
Cathyware
 
Join Date: Feb 2019
Location: Nyc, New York
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 Iíll look into it, do you know if these can be covered by insurance?
03-30-2019, 10:52 PM   #14
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
Reply

Thread Tools


All times are GMT -5. The time now is 05:29 PM.
Copyright 2006-2017 Crohnsforum.com