How much bowel does he have?

[TestifyToLove]

M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo.

But, we've had a specific question for a year now, how much bowel is there, and does he officially have Shortened Bowel Syndrome.

His previous CF clinic swore up and down that he did not have SBS, among other things they swore. They also nearly let him die by ignoring classic signs of a bowel obstruction for 9 months and never put a mask on him for clinic visits either. So, obviously, I have very little respect for their medical opinions when it comes to M.

We recieved his original medical records from his first 78 days of life, when he had 3 of his bowel surgeries. Turns out, the original NICU in fact DID diagnosis him with SBS. But, for some reason, in all of those surgeries, there is no mention of how much bowel they removed for obstructions.

So, we took M to a Ped GI this last week (our GI associated with our CF center is retiring and they haven't found a replacement yet). She specifically wanted to know how much bowel has been removed. We still don't know.

But, DH went through all the surgical notes to get copies of just those to the new GI. While we can't find a notation on how much was removed, Dh found a notation. When they took out M's meconium illieus....they noted there was 24" of viable small intestines present before the meconium illeus.

I'm thinking if they took all but 24" of his small bowel....its a miracle he can gain weight!

 

[TestifyToLove]

M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo.

But, we've had a specific question for a year now, how much bowel is there, and does he officially have Shortened Bowel Syndrome.

His previous CF clinic swore up and down that he did not have SBS, among other things they swore. They also nearly let him die by ignoring classic signs of a bowel obstruction for 9 months and never put a mask on him for clinic visits either. So, obviously, I have very little respect for their medical opinions when it comes to M.

We recieved his original medical records from his first 78 days of life, when he had 3 of his bowel surgeries. Turns out, the original NICU in fact DID diagnosis him with SBS. But, for some reason, in all of those surgeries, there is no mention of how much bowel they removed for obstructions.

So, we took M to a Ped GI this last week (our GI associated with our CF center is retiring and they haven't found a replacement yet). She specifically wanted to know how much bowel has been removed. We still don't know.

But, DH went through all the surgical notes to get copies of just those to the new GI. While we can't find a notation on how much was removed, Dh found a notation. When they took out M's meconium illieus....they noted there was 24" of viable small intestines present before the meconium illeus.

I'm thinking if they took all but 24" of his small bowel....its a miracle he can gain weight!

 

[TestifyToLove]

M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo.

But, we've had a specific question for a year now, how much bowel is there, and does he officially have Shortened Bowel Syndrome.

His previous CF clinic swore up and down that he did not have SBS, among other things they swore. They also nearly let him die by ignoring classic signs of a bowel obstruction for 9 months and never put a mask on him for clinic visits either. So, obviously, I have very little respect for their medical opinions when it comes to M.

We recieved his original medical records from his first 78 days of life, when he had 3 of his bowel surgeries. Turns out, the original NICU in fact DID diagnosis him with SBS. But, for some reason, in all of those surgeries, there is no mention of how much bowel they removed for obstructions.

So, we took M to a Ped GI this last week (our GI associated with our CF center is retiring and they haven't found a replacement yet). She specifically wanted to know how much bowel has been removed. We still don't know.

But, DH went through all the surgical notes to get copies of just those to the new GI. While we can't find a notation on how much was removed, Dh found a notation. When they took out M's meconium illieus....they noted there was 24" of viable small intestines present before the meconium illeus.

I'm thinking if they took all but 24" of his small bowel....its a miracle he can gain weight!

 

[TestifyToLove]

M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo.

But, we've had a specific question for a year now, how much bowel is there, and does he officially have Shortened Bowel Syndrome.

His previous CF clinic swore up and down that he did not have SBS, among other things they swore. They also nearly let him die by ignoring classic signs of a bowel obstruction for 9 months and never put a mask on him for clinic visits either. So, obviously, I have very little respect for their medical opinions when it comes to M.

We recieved his original medical records from his first 78 days of life, when he had 3 of his bowel surgeries. Turns out, the original NICU in fact DID diagnosis him with SBS. But, for some reason, in all of those surgeries, there is no mention of how much bowel they removed for obstructions.

So, we took M to a Ped GI this last week (our GI associated with our CF center is retiring and they haven't found a replacement yet). She specifically wanted to know how much bowel has been removed. We still don't know.

But, DH went through all the surgical notes to get copies of just those to the new GI. While we can't find a notation on how much was removed, Dh found a notation. When they took out M's meconium illieus....they noted there was 24" of viable small intestines present before the meconium illeus.

I'm thinking if they took all but 24" of his small bowel....its a miracle he can gain weight!

 

[TestifyToLove]

M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo.
<br />
<br />But, we've had a specific question for a year now, how much bowel is there, and does he officially have Shortened Bowel Syndrome.
<br />
<br />His previous CF clinic swore up and down that he did not have SBS, among other things they swore. They also nearly let him die by ignoring classic signs of a bowel obstruction for 9 months and never put a mask on him for clinic visits either. So, obviously, I have very little respect for their medical opinions when it comes to M.
<br />
<br />We recieved his original medical records from his first 78 days of life, when he had 3 of his bowel surgeries. Turns out, the original NICU in fact DID diagnosis him with SBS. But, for some reason, in all of those surgeries, there is no mention of how much bowel they removed for obstructions.
<br />
<br />So, we took M to a Ped GI this last week (our GI associated with our CF center is retiring and they haven't found a replacement yet). She specifically wanted to know how much bowel has been removed. We still don't know.
<br />
<br />But, DH went through all the surgical notes to get copies of just those to the new GI. While we can't find a notation on how much was removed, Dh found a notation. When they took out M's meconium illieus....they noted there was 24" of viable small intestines present before the meconium illeus.
<br />
<br />I'm thinking if they took all but 24" of his small bowel....its a miracle he can gain weight!

 

[Buckeye]

Wow, 24" isn't a lot to work with. Wonder if the GI doc can do a CT Scan so she knows the remaining length for sure since his medical records are kind of sketchy?

 

[Buckeye]

Wow, 24" isn't a lot to work with. Wonder if the GI doc can do a CT Scan so she knows the remaining length for sure since his medical records are kind of sketchy?

 

[Buckeye]

Wow, 24" isn't a lot to work with. Wonder if the GI doc can do a CT Scan so she knows the remaining length for sure since his medical records are kind of sketchy?

 

[Buckeye]

Wow, 24" isn't a lot to work with. Wonder if the GI doc can do a CT Scan so she knows the remaining length for sure since his medical records are kind of sketchy?

 

[Buckeye]

Wow, 24" isn't a lot to work with. Wonder if the GI doc can do a CT Scan so she knows the remaining length for sure since his medical records are kind of sketchy?

 

[jacksmom]

The only test I know of that can measure the length of the small bowel is a Upper GI Small Bowel Series. Basically you (or your child) has to drink Barium and then a special x-ray machine is used to watch the barium go through the digestive system. Before my son had one done we were asked how much bowel he had left. He also was born with MI and had a third removed during the first surgery. He had three more bowel surgeries and we were unsure how much he had left after that. We were told that this test would tell them how much he had left.

Can you contact the surgeon that did the surgery? Maybe they have more detailed records and would have that information.

Good luck
Carey

 

[jacksmom]

The only test I know of that can measure the length of the small bowel is a Upper GI Small Bowel Series. Basically you (or your child) has to drink Barium and then a special x-ray machine is used to watch the barium go through the digestive system. Before my son had one done we were asked how much bowel he had left. He also was born with MI and had a third removed during the first surgery. He had three more bowel surgeries and we were unsure how much he had left after that. We were told that this test would tell them how much he had left.

Can you contact the surgeon that did the surgery? Maybe they have more detailed records and would have that information.

Good luck
Carey

 

[jacksmom]

The only test I know of that can measure the length of the small bowel is a Upper GI Small Bowel Series. Basically you (or your child) has to drink Barium and then a special x-ray machine is used to watch the barium go through the digestive system. Before my son had one done we were asked how much bowel he had left. He also was born with MI and had a third removed during the first surgery. He had three more bowel surgeries and we were unsure how much he had left after that. We were told that this test would tell them how much he had left.

Can you contact the surgeon that did the surgery? Maybe they have more detailed records and would have that information.

Good luck
Carey

 

[jacksmom]

The only test I know of that can measure the length of the small bowel is a Upper GI Small Bowel Series. Basically you (or your child) has to drink Barium and then a special x-ray machine is used to watch the barium go through the digestive system. Before my son had one done we were asked how much bowel he had left. He also was born with MI and had a third removed during the first surgery. He had three more bowel surgeries and we were unsure how much he had left after that. We were told that this test would tell them how much he had left.

Can you contact the surgeon that did the surgery? Maybe they have more detailed records and would have that information.

Good luck
Carey

 

[jacksmom]

The only test I know of that can measure the length of the small bowel is a Upper GI Small Bowel Series. Basically you (or your child) has to drink Barium and then a special x-ray machine is used to watch the barium go through the digestive system. Before my son had one done we were asked how much bowel he had left. He also was born with MI and had a third removed during the first surgery. He had three more bowel surgeries and we were unsure how much he had left after that. We were told that this test would tell them how much he had left.
<br />
<br />Can you contact the surgeon that did the surgery? Maybe they have more detailed records and would have that information.
<br />
<br />Good luck
<br />Carey

 

[Transplantmommy]

I kind of had a similar test done that Carey mentioned. After I had my colon removed, I had to have a test done to make sure there were no leaks after they attached my small intestine to my colon (which there is now only 8" of) before they would reverse my ileostomy and let me get rid of the colostomy bag. I had to go into a room and lie under an x-ray machine. They took some stuff in a bottle and put it into my rectum (like an enema) and took pictures to make sure that there were no leaks at the attachment site. I am thinking that they should be able to do something similar to this to see how much of a bowel is left.

*Sorry if some of this was TMI but I had to explain it somehow! LOL

 

[Transplantmommy]

I kind of had a similar test done that Carey mentioned. After I had my colon removed, I had to have a test done to make sure there were no leaks after they attached my small intestine to my colon (which there is now only 8" of) before they would reverse my ileostomy and let me get rid of the colostomy bag. I had to go into a room and lie under an x-ray machine. They took some stuff in a bottle and put it into my rectum (like an enema) and took pictures to make sure that there were no leaks at the attachment site. I am thinking that they should be able to do something similar to this to see how much of a bowel is left.

*Sorry if some of this was TMI but I had to explain it somehow! LOL

 

[Transplantmommy]

I kind of had a similar test done that Carey mentioned. After I had my colon removed, I had to have a test done to make sure there were no leaks after they attached my small intestine to my colon (which there is now only 8" of) before they would reverse my ileostomy and let me get rid of the colostomy bag. I had to go into a room and lie under an x-ray machine. They took some stuff in a bottle and put it into my rectum (like an enema) and took pictures to make sure that there were no leaks at the attachment site. I am thinking that they should be able to do something similar to this to see how much of a bowel is left.

*Sorry if some of this was TMI but I had to explain it somehow! LOL

 

[Transplantmommy]

I kind of had a similar test done that Carey mentioned. After I had my colon removed, I had to have a test done to make sure there were no leaks after they attached my small intestine to my colon (which there is now only 8" of) before they would reverse my ileostomy and let me get rid of the colostomy bag. I had to go into a room and lie under an x-ray machine. They took some stuff in a bottle and put it into my rectum (like an enema) and took pictures to make sure that there were no leaks at the attachment site. I am thinking that they should be able to do something similar to this to see how much of a bowel is left.

*Sorry if some of this was TMI but I had to explain it somehow! LOL

 

[Transplantmommy]

I kind of had a similar test done that Carey mentioned. After I had my colon removed, I had to have a test done to make sure there were no leaks after they attached my small intestine to my colon (which there is now only 8" of) before they would reverse my ileostomy and let me get rid of the colostomy bag. I had to go into a room and lie under an x-ray machine. They took some stuff in a bottle and put it into my rectum (like an enema) and took pictures to make sure that there were no leaks at the attachment site. I am thinking that they should be able to do something similar to this to see how much of a bowel is left.
<br />
<br />*Sorry if some of this was TMI but I had to explain it somehow! LOL