Short bowel
- Thread starter Cathyware
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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 ...
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 ..
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- Apr 15, 2012
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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 )
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 )
- Joined
- Apr 15, 2012
- Messages
- 14,792
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
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?
- Joined
- Apr 15, 2012
- Messages
- 14,792
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
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
I have a similar problem Short Bowel syndrome with 4th resection and 48 yrs ago no good meds, just remove more collasping small intestines so now 6 ft left and full time tied to bathroom with liquid diarrea I am left with.
I found out and on internet short bowel diet, low fat diet for short bowel and it helped me with digestion, no more D eating high fat food that short bowel wont digest well so problems, but diet changes easy to digest foods helped. I have same problem with goes right thru me undigested so form and oder not good but that and other issues learned out to live with and try to stay away with foods that dont agree with short bowel or high fat short bowel cant digest so made lots of changes, no roughage so no vegetables no fruit and have less issues less problems but never with out of course.
But it can get adn be worse if I eat to m uch suger, high fat, roughage, no dairy no fun...but no fun to be sick adn more problem to so I made many changes and it helped by 50%.
Sure you have been in interest asking short bowel and crohns questions like I have and learned lots with trial and error but eating foods easy to digest did help by 50% I feel.............
I use to weight 150 and 40 yrs later with eating restictions and other, my normal weight as everything goes right thru me, I weigh 125 now but when sick or flare up, get down to 115 or 118 and takes 2 yrs to get back into the 120s and often dont want to eat, but get sicker so some eat to not get sick. Changes adn learning easy digest foods and no high fat anything, I have to admit I feel good and active mroe then i dont so feel diet changes and learning easy to digest foods did help.
Nutritionist was big help as I was eating high fat, short bowel cant digest, so more problems big help to learn easy digest foods settle better.
Seems you have had Crohns so sure you made changes and on interenet asking questions as I did to help and feel less sick, less issues , so maybe you found out about diet and high fat, fast foods full of fillers, can have mroe problems I am guessing you have found out and made changes thru the years but it didnt help me less problems with food choices.
Good luck, think I do good considering but its there and always issues and problems but keep trying to do what helps and what I can for myself.
Stelara I feel lil better, was on Remicade , then Humira for 3 yrs, active crohns returned so now Stelara and so far internal bleeding stopped, active Crohns remissions now again, added 10 of the 15 lbs lost over 2 yrs with active crohns returning on Humira so doing better now on Stelara I will share and scared about the horrible side effects, but Steriods and imuran been on for past 20 yrs, its all poisen in body with horrible side effects but active Crohns cant be good and eating away at intestines with out the medicine and sick full time, so I realized now, hope for the best , take what they tell me will slow down crohns and keep in remission and me less sick, so take it, and trust I wont get the scary side effects they tell me keeping on lower doses hope I wont, and other meds I have been on first 20 yrs of my total 48 living with this, cant be good putting in body, so stopped fighting it, and what ever can made me feel ok and human and less sick in hospital, now I just take it and what ever it takes to feel ok and trust what they give me and hope it will work out?
Good luck to you, most I talk to or forums havent run across to many with the removal so left with short Bowel syndrome, mroe issues along with the Crohns to double the problems and issues. No fun but what ever it takes to feel normal or ok, I do my best, no fun but feeling sick with more problems isnt fun either so I try to follow diet adn other things said on internet to feel my best adn feel over all, more good and ok then the other most the time.
Good luck as anything not normal isnt fun or easy but have to keep trying to deal as its there and we are stuck with it so learn and try to feel best we can adn less problems with better habits they say help problems with Crohns and flare ups that come with short bowel and Crohns both.
Thanks for y our share ...................C J
I found out and on internet short bowel diet, low fat diet for short bowel and it helped me with digestion, no more D eating high fat food that short bowel wont digest well so problems, but diet changes easy to digest foods helped. I have same problem with goes right thru me undigested so form and oder not good but that and other issues learned out to live with and try to stay away with foods that dont agree with short bowel or high fat short bowel cant digest so made lots of changes, no roughage so no vegetables no fruit and have less issues less problems but never with out of course.
But it can get adn be worse if I eat to m uch suger, high fat, roughage, no dairy no fun...but no fun to be sick adn more problem to so I made many changes and it helped by 50%.
Sure you have been in interest asking short bowel and crohns questions like I have and learned lots with trial and error but eating foods easy to digest did help by 50% I feel.............
I use to weight 150 and 40 yrs later with eating restictions and other, my normal weight as everything goes right thru me, I weigh 125 now but when sick or flare up, get down to 115 or 118 and takes 2 yrs to get back into the 120s and often dont want to eat, but get sicker so some eat to not get sick. Changes adn learning easy digest foods and no high fat anything, I have to admit I feel good and active mroe then i dont so feel diet changes and learning easy to digest foods did help.
Nutritionist was big help as I was eating high fat, short bowel cant digest, so more problems big help to learn easy digest foods settle better.
Seems you have had Crohns so sure you made changes and on interenet asking questions as I did to help and feel less sick, less issues , so maybe you found out about diet and high fat, fast foods full of fillers, can have mroe problems I am guessing you have found out and made changes thru the years but it didnt help me less problems with food choices.
Good luck, think I do good considering but its there and always issues and problems but keep trying to do what helps and what I can for myself.
Stelara I feel lil better, was on Remicade , then Humira for 3 yrs, active crohns returned so now Stelara and so far internal bleeding stopped, active Crohns remissions now again, added 10 of the 15 lbs lost over 2 yrs with active crohns returning on Humira so doing better now on Stelara I will share and scared about the horrible side effects, but Steriods and imuran been on for past 20 yrs, its all poisen in body with horrible side effects but active Crohns cant be good and eating away at intestines with out the medicine and sick full time, so I realized now, hope for the best , take what they tell me will slow down crohns and keep in remission and me less sick, so take it, and trust I wont get the scary side effects they tell me keeping on lower doses hope I wont, and other meds I have been on first 20 yrs of my total 48 living with this, cant be good putting in body, so stopped fighting it, and what ever can made me feel ok and human and less sick in hospital, now I just take it and what ever it takes to feel ok and trust what they give me and hope it will work out?
Good luck to you, most I talk to or forums havent run across to many with the removal so left with short Bowel syndrome, mroe issues along with the Crohns to double the problems and issues. No fun but what ever it takes to feel normal or ok, I do my best, no fun but feeling sick with more problems isnt fun either so I try to follow diet adn other things said on internet to feel my best adn feel over all, more good and ok then the other most the time.
Good luck as anything not normal isnt fun or easy but have to keep trying to deal as its there and we are stuck with it so learn and try to feel best we can adn less problems with better habits they say help problems with Crohns and flare ups that come with short bowel and Crohns both.
Thanks for y our share ...................C J
