Been reading and worried about cc length
- Thread starter nedsmehlp
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DSRIGGS
Yes, that is chocolate covered bacon
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Piggy back on Diana's comment, without knowing your total small bowel length there is not sufficient information to determine if a 100 CM CC is optimal for you. It could be too short, could be too long or could be just right.
I had a 100 cm CC and 150 CM AL (not the total AL limb which is AL + CC) because my Virgin DS surgeon didn't use the Hess Method. Instead he did standard limb length without measuring the total SBL. I didn't know anything about the different DS methods at that time and I paid a severe price. At about 13 months out I started feeling extremely light headed, nauseous, weak and like I was going to pass out. I ended up going to the ER where they found my resting HR to be between 35-40, BP was as low as 65/35, my total protein were only about 60% of the minimum and most of my other labs were a mess as well. I was admitted because Dr's thought I had a cardiac issue and was going to need a pace maker. The Cardiology team checked me out and the Head Cardio Doc told me that my problem wasn't my hear, but was because I was very malnourished. I had to go on a Pancreatic Enzyme (CREON) that I took when every I ate as it helps the digestive tract to better absorb nutrients. BTW, I had been 250 grams of protein or more daily. I was taking around 400,000 IU daily (in layman's terms, a metric shit ton). At that point I started researching and began talking with Dr Keshishian about a revision to lengthen my AL because it was too short. He advised me to wait until 24 months because at that point what absorbtion I would have gained back should have been to a relative maximum. THe CREON got my labs to near bottom of range or in range but at low end, but the CREON gave me what I called burning gut and butt syndrome. I am 6'2 and that time had got my weight up to about 180 lbs. At about 23 months I all of the sudden lost 20 pounds in a week. Dr K told me that I either needed to get to him immediately for a revision or have Dr Marshall start me on TPN. I live in the Peoria, IL area and 10 days later my wife and I were in Glendale, CA with Dr K where we he explained what he was going to do (I also asked while doing the revision that he look at a fissure that I had developed and couldn't get healed) and the next day he revised my AL doing what is called a side by side anastomosis. He also repaired my fissure and a mesenteric defect (internal hernia) that I had repaired a year earlier and had opened back up. It was causing a partial blockage. You can see my stats in my by line below this post. The bottom line is that my original surgeon screwed me up because he made my AL to short for my total small bowel length. Dr K did his best to approximate how much absorbing path to add back because the calculation for a revision where he would be putting Bilo-Pancreatic Limb back into the absorbing path and because the BPL hadn't been absorbing for a year it was naturally atrophied so it was hard to predict how much it would absorb compared to "virgin small intestine". For a virgin DS the Hess method says to generally make the CC as 10% of the total SBL and the total AL at 40% of the SBL. For the CC he uses 75, 100 or 125 CM depending on length...if 10% was 60cm he would go the 75 cm cc, if 85 he would go to 100 cm and so one. For the AL he rounds up to the next 25 cm increment, I believe. I had a 750 CM SBL so in reality my 100 CM CC from my initial DS was longer than what Hess would have said it should be. My AL (small AL, not total) was 150 cm and it should have been 200 cm.
Anyway, I was immediately able to come off CREON and my labs stayed at bottom of range or in for most things. That was a big relief. I am at 3.5 years from my original DS and I am still not a picture of health. It is my belief that the initial short total AL put me in a hole that has been very hard for my body to dig out of. I still battle extreme fatigue, chronic non-iron deficient anemia, weakness and I have a hard time gaining weight no matter what I eat. I am convinced that had I known about the Hess Method and Dr K that my health would be much better now.
The bottom line after that long winded story is that I believe the Hess Method should be the only way the DS is executed because it optimizes weight loss and health for the individual. I was on the too short side of the bell curve for total AL so that meant I had nutrition issues, others who are on the the too long of total AL side didn't lose as much weight as they really wanted to lose (still lost significant weight but maybe not the last 15 lbs they wanted to lose). Naturally I would have preferred to be a little heavier but healthy...but it didn't work out that way....kind of the story of my life. This being said, you need to find out if your surgeon did in fact measure your total SBL to figure if your CC + AL are the proper length for optimal loss and health.
BTW, this is a picture of my mesenteric defect that Dr K fixed. His blog post also discusses things to watch for because with rapid weight loss DS patients are at an increased risk of hernia because of the space created allows the intestine to twist around and cause a blockage. That happened to me and then it opened back up again.
Best wishes to you on your journey. Oh hell, I just looked at your signature and saw that Dr K did your DS. No worries. You will be fine as he will have given you a Hess DS. I am guessing you have a 500 CM total SBL. I over simplified the Hess Method because patient history is taken into account and that can influence limb lengths.
https://www.dssurgery.com/internal-hernia-and-bowel-obstruction/
I had a 100 cm CC and 150 CM AL (not the total AL limb which is AL + CC) because my Virgin DS surgeon didn't use the Hess Method. Instead he did standard limb length without measuring the total SBL. I didn't know anything about the different DS methods at that time and I paid a severe price. At about 13 months out I started feeling extremely light headed, nauseous, weak and like I was going to pass out. I ended up going to the ER where they found my resting HR to be between 35-40, BP was as low as 65/35, my total protein were only about 60% of the minimum and most of my other labs were a mess as well. I was admitted because Dr's thought I had a cardiac issue and was going to need a pace maker. The Cardiology team checked me out and the Head Cardio Doc told me that my problem wasn't my hear, but was because I was very malnourished. I had to go on a Pancreatic Enzyme (CREON) that I took when every I ate as it helps the digestive tract to better absorb nutrients. BTW, I had been 250 grams of protein or more daily. I was taking around 400,000 IU daily (in layman's terms, a metric shit ton). At that point I started researching and began talking with Dr Keshishian about a revision to lengthen my AL because it was too short. He advised me to wait until 24 months because at that point what absorbtion I would have gained back should have been to a relative maximum. THe CREON got my labs to near bottom of range or in range but at low end, but the CREON gave me what I called burning gut and butt syndrome. I am 6'2 and that time had got my weight up to about 180 lbs. At about 23 months I all of the sudden lost 20 pounds in a week. Dr K told me that I either needed to get to him immediately for a revision or have Dr Marshall start me on TPN. I live in the Peoria, IL area and 10 days later my wife and I were in Glendale, CA with Dr K where we he explained what he was going to do (I also asked while doing the revision that he look at a fissure that I had developed and couldn't get healed) and the next day he revised my AL doing what is called a side by side anastomosis. He also repaired my fissure and a mesenteric defect (internal hernia) that I had repaired a year earlier and had opened back up. It was causing a partial blockage. You can see my stats in my by line below this post. The bottom line is that my original surgeon screwed me up because he made my AL to short for my total small bowel length. Dr K did his best to approximate how much absorbing path to add back because the calculation for a revision where he would be putting Bilo-Pancreatic Limb back into the absorbing path and because the BPL hadn't been absorbing for a year it was naturally atrophied so it was hard to predict how much it would absorb compared to "virgin small intestine". For a virgin DS the Hess method says to generally make the CC as 10% of the total SBL and the total AL at 40% of the SBL. For the CC he uses 75, 100 or 125 CM depending on length...if 10% was 60cm he would go the 75 cm cc, if 85 he would go to 100 cm and so one. For the AL he rounds up to the next 25 cm increment, I believe. I had a 750 CM SBL so in reality my 100 CM CC from my initial DS was longer than what Hess would have said it should be. My AL (small AL, not total) was 150 cm and it should have been 200 cm.
Anyway, I was immediately able to come off CREON and my labs stayed at bottom of range or in for most things. That was a big relief. I am at 3.5 years from my original DS and I am still not a picture of health. It is my belief that the initial short total AL put me in a hole that has been very hard for my body to dig out of. I still battle extreme fatigue, chronic non-iron deficient anemia, weakness and I have a hard time gaining weight no matter what I eat. I am convinced that had I known about the Hess Method and Dr K that my health would be much better now.
The bottom line after that long winded story is that I believe the Hess Method should be the only way the DS is executed because it optimizes weight loss and health for the individual. I was on the too short side of the bell curve for total AL so that meant I had nutrition issues, others who are on the the too long of total AL side didn't lose as much weight as they really wanted to lose (still lost significant weight but maybe not the last 15 lbs they wanted to lose). Naturally I would have preferred to be a little heavier but healthy...but it didn't work out that way....kind of the story of my life. This being said, you need to find out if your surgeon did in fact measure your total SBL to figure if your CC + AL are the proper length for optimal loss and health.
BTW, this is a picture of my mesenteric defect that Dr K fixed. His blog post also discusses things to watch for because with rapid weight loss DS patients are at an increased risk of hernia because of the space created allows the intestine to twist around and cause a blockage. That happened to me and then it opened back up again.
Best wishes to you on your journey. Oh hell, I just looked at your signature and saw that Dr K did your DS. No worries. You will be fine as he will have given you a Hess DS. I am guessing you have a 500 CM total SBL. I over simplified the Hess Method because patient history is taken into account and that can influence limb lengths.
https://www.dssurgery.com/internal-hernia-and-bowel-obstruction/
galaxygrrl
Well-Known Member
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- Jun 4, 2016
- Messages
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You know, I got all freaked out about this issue before my surgery. I had the Hess method, but what i realized after reading lots of post is some people don't do well with the Hess method and some people do not. Some people do well without the Hess method. Now, I don't have data, I just read a lot of posts and the studies are better to follow, then just me saying I read a lot of posts for sure, but I think this is really a YMMV issue too.
See what you get since your surgery is done and go from there. Just breath and adjust to your new body and only worry when if you need to later on.
I think people have very, very different experinces with the DS, but the one common thread for sure is its a journey. You are on the journey, see where you end up first.
Cheers!
See what you get since your surgery is done and go from there. Just breath and adjust to your new body and only worry when if you need to later on.
I think people have very, very different experinces with the DS, but the one common thread for sure is its a journey. You are on the journey, see where you end up first.
Cheers!
DSRIGGS
Yes, that is chocolate covered bacon
- Joined
- Nov 19, 2014
- Messages
- 4,635
Lots of people do very well with a standard limb length DS. We don't really have a way of knowing but it is my suspicion that it works for many because their standard limb lengths happen to line up well with what their total SBL is.
The only study I have seen is one Dr K and partners at the time did on their patients who had the DS. I think it was 375 people and of those, 8 people I believe, needed short term pancreatic enzyme but all of that group and the rest of the 300+ people ended up with albumin and total protein well in range after 2 years. Nobody needed revised. I think the mean BMI was around 28.
I would like to see a larger study of all DS type patients, standard limb and Hess.......but I know the standard limb didn't work for me but I have three friends who went to Marshall as well and they are doing very well. The two guys happen to be around 5'6 so I think their SBL which is correlated to height (in general shorter people tend to have shorter sbl than taller folks) lines up well with the Marshall standard limb length (100 and 150 for total AL of 250).
So although I am a big Hess proponent because I think it minimizes risk, I know that the standard limb works well for many.
Munchkin
Full of Fairy Dust
The shortest I know of is a woman in Australia. 40cm and as you would guess she is thin. Mine is supposedly on the short side at 75. But I never made it to a normal BMI and as time goes on I find myself dieting more and more. Yet there are several people I know who did well with a 250CC. So the real answer is...it's a crap shoot.
All you can do is the best you can with what you have. That's why I tell everyone lose as much as you can as fast as you can. Just lose the weight! Don't even think about stopping your weight loss until your BMI comes close to underweight or you are at least 10% under goal. You will have the rest of your life to screw around with carbs and find out what you can tolerate. Just don't run out of easy weight loss before you run out of fat.
All you can do is the best you can with what you have. That's why I tell everyone lose as much as you can as fast as you can. Just lose the weight! Don't even think about stopping your weight loss until your BMI comes close to underweight or you are at least 10% under goal. You will have the rest of your life to screw around with carbs and find out what you can tolerate. Just don't run out of easy weight loss before you run out of fat.
Mine is 175. As to total, no idea as my surgeon didn't measure. Yet for me, a longer one has worked well. Minimal vitamin supplements (I have labs done every 6 months and add as my labs dictate). And I am nicely within normal BMI. I'm 5'4" and weighed 141 this morning which is the 24.something BMI.
My husband's is 125 and while he is technically overweight, he looks good. Normal BMI on him was way too scrawny!
My husband's is 125 and while he is technically overweight, he looks good. Normal BMI on him was way too scrawny!
well mines is 50cm. According to all the preconceived notions about what should be what it's where it is supposed to be. I have been too thin now I'm too heavy. Honestly after the first 18 months i think it's about what you do with DS that makes the difference.
How are you doing now 10 months later?
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I lost 78 pounds in seven months, but then my sweet tooth came roaring back! I gained back 7 pounds in 3 months! I am devastated! Leave it to me to blow this! I am really struggling to get control of myself. I need to lose 24 more lbs to get to my Dr.'s goal for me. I think I get frantic just thinking of never having ice cream again, so I binge on it! I'm very happy with my cc & al lengths, but very unhappy with myself!
Start with taking ice cream out of your house until you have lost all your excess plus about 10-15 lbs.
You also need to work on your thought processes to avoid binge behavior.
