My 2016 DS Journal

Since April, all I have done is eat out, and since June, all I have done is lay around (literally), which has caused me to gain a bunch of weight. (My formerly comfy jeans are super tight.) I just got most of my pre-op bloodwork results back, and everything is actually BETTER than it was when I had labs done in June. WTF??

So, did everyone else have this litany of tests to get through before surgery? I completed quite a few today, but I go tomorrow for an abdominal u/s, and I still need to schedule an echocardiogram.

Also, I used the online/phone call option to complete my psych eval, and that was done on 9/25. They still haven't sent the report to Dr. Srikanth's office, which is the only thing his office is waiting for in order to submit for insurance approval and get my surgery scheduled. I am pretty irate about the therapy outfit's slow pace. Does it typically take this long?
 
trace said:
Since April, all I have done is eat out, and since June, all I have done is lay around (literally), which has caused me to gain a bunch of weight. (My formerly comfy jeans are super tight.) I just got most of my pre-op bloodwork results back, and everything is actually BETTER than it was when I had labs done in June. WTF??

So, did everyone else have this litany of tests to get through before surgery? I completed quite a few today, but I go tomorrow for an abdominal u/s, and I still need to schedule an echocardiogram.

Also, I used the online/phone call option to complete my psych eval, and that was done on 9/25. They still haven't sent the report to Dr. Srikanth's office, which is the only thing his office is waiting for in order to submit for insurance approval and get my surgery scheduled. I am pretty irate about the therapy outfit's slow pace. Does it typically take this long?
Click to expand...
Labs are probably better because you have had some time of adequate nutrition. Years of starvation are honestly no good for anyone! I would be calling about the psych eval twice a week and leave it at that. Hard I know!!!!
 
My pestering paid off. Srikanth's office got the psych eval today so they can now submit to my insurance. I am going to be on pins and needles.

Meanwhile, I got my abdominal u/s and UGI checked off today. The tech who did the UGI told me that I'd have to do another one after surgery, and during that one, I have to drink a really disgusting liquid (as if the barium wasn't disgusting enough!). Fun stuff.

Still working on spirometry (no idea why that has been so difficult to get scheduled), my echo is Monday, and I will be starting my 24-hour urine collection tomorrow morning. More fun stuff!
 
DSRIGGS said:
Respectfully I think his logic for not doing Hess is flawed and here is why I say that.

Dr k did a study of I believe 373 of his patients ...he has done nearly 2,500 DS surgeries...He only does Hess, and there was not one case of malnutrition long term.

Additionally it isn't just the common channel that is important. My cc was actually 125 cm and I was severely malnourished because my Alimentary Limb was too short. Itbis a pet peeve of mine when patients & Dr's focus on the CC only, because it is no more or no less important than the alimentary limb and bilo pancreatic limb lengths. If he doesn't measure your total small bowel length and just gives you a 150 cc common chanel it guarantees nothing because it is just a guess. If he does Hess or measures then adjusts slightly so not exactly 10% and 40 % cc and al, you will not lose too much or too little. It optimizes the DS for you the individual.

I can't get it to copy from my phone so please go to dssurgery.com and under About Us and publications you will find the study I am referencing. It will have low protein in the title. Please print or copy and show to your Dr. Please don't let him do surgery without measuring your small bowel length and then making an educated decision about you CC and AL lengths.

BTW if your total sbl is 500 cm and he gives you a 150 cm CC that will be 25% of total sbl and say he gives you a 150 cm AL...fairly common with standard limb length guys..you will have 300 cm of 500 cm total sbl as absorbing channels. That is 60% which is too much and you will very likey not come close to losing to your goal weight.

Best wishes


I am passionate about this because a,standard limb length DS surgeon really did great damage to me causing severe malnutrition where I was hospitalized for a week because they thought my heart was damaged. It wasnt. I was manourished from too short of an AL because the surgeon didn't measure my total small bowel length and follow the Hess parameters. Others haven't lost as much as they want and I highly suspect that the standard limb length they received left them with too much absorption. I don't ever want to see anyone go through the health struggles I have unnecessarily had to endure, nor do I want to somebody frustrated because their DS didn't allow them to lose enough. One surgery is all you want, not a second to correct an incorrect first surgery that gives bad results. There are no guarantees in life but Dr K's data that I asked you to review, shows that with the Hess your malnutrition risk is almost zero.

Again best wishes
Click to expand...

Scott aka @DSRIGGS what time length is considered long term malnutrition?
 
Honestly Clarisa I don't know. I just know that at just over a year after my DS I ended up in the hospital because I was passing out and HR resting was 35-40, bp was 70/40 and my albumin and total protein were just above half of the minimum value. I went on a dose of 400,000 iu of creon daily for a year. That amount is the max dose and in simple terms, a metric freaking shit ton. I would have been dead or on TPN continously without the creon. It got my albumin and total protein back to bottom of range. Dr k with whom I started consulting after that issue started, advised that I wait until the 24 month post ds to see if any absorption came back. At about 23 months out of the blue I dropped 17 pounds in ten days. He told me I had two choices. Go on TPN immediately until I could get out to him and be revised or get out to him immediately. I chose the latter and immediately stopped all CREON and my labs held steady.
 
I know this conversation is a few weeks older but I just wanted to chime in that I had DS surgery in December 2015 I was 231 day of surgery. I was about 250 when starting the doctors visits and requirements and all that.
I was given a 250 cm CC, when I woke up and he told me this I was actually very annoyed. Mainly cause I thought this would hinder me greatly or increase my efforts to have to loose weight.
It is now October and I am 147 lbs. I have lost over 80 lbs and I have not had to watch anything or limit anything. In fact I have to MAKE myself eat and often because I do not want to loose too much more. I would like to get to 125 only because they say to shoot for 10% under what your goal is cause of bounce back. But I want to start exercising and lifting weights to tone up and get healthier and I am nervous I will loose too much weight.

I am 5'6" and I know that was considered a light weight. I have not had any problems with deficiencies and I take vitamins every few days not every day, because some were measuring too high in the blood work. I know my experience is not what would be for anyone else and that I am still recently out from surgery but just thought I would share. Also they said due to my PCOS I was about to be pre diabetic and they had me on metformin, I havent had any issues and was able to stop taking metformin since surgery.
 
Thanks for sharing that, @Kittykatkris. I'm using this thread as my entire DS journal, where I am logging any random thoughts or concerns I have along the way, so feel free to jump in at any time! I hope I have as great of an outcome as you!
 
My surgeon..Dr Simper...does not use Hess. I have 100 cc common channel. I am 5'3" and was 248 lbs at surgery and I was 58 yrs old. I have had no issues, my diabetes was gone in days, and I lost 120 lbs in 13 mos and have maintained with a 4 lb bounce back for 9 months now. If that helps. ;)
 
Kittykatkris said:
I know this conversation is a few weeks older but I just wanted to chime in that I had DS surgery in December 2015 I was 231 day of surgery. I was about 250 when starting the doctors visits and requirements and all that.
I was given a 250 cm CC, when I woke up and he told me this I was actually very annoyed. Mainly cause I thought this would hinder me greatly or increase my efforts to have to loose weight.
It is now October and I am 147 lbs. I have lost over 80 lbs and I have not had to watch anything or limit anything. In fact I have to MAKE myself eat and often because I do not want to loose too much more. I would like to get to 125 only because they say to shoot for 10% under what your goal is cause of bounce back. But I want to start exercising and lifting weights to tone up and get healthier and I am nervous I will loose too much weight.

I am 5'6" and I know that was considered a light weight. I have not had any problems with deficiencies and I take vitamins every few days not every day, because some were measuring too high in the blood work. I know my experience is not what would be for anyone else and that I am still recently out from surgery but just thought I would share. Also they said due to my PCOS I was about to be pre diabetic and they had me on metformin, I havent had any issues and was able to stop taking metformin since surgery.
Click to expand...

Honestly, don't even think about this till you are 10% under where you want to be. Just remember why you had the surgery. To lose weight! Way too many of us end up still fat. If you can avoid that, great. Work on the things you need to do, like get in more protein! With that long a CC, the easy weight loss won't last. And you must be absorbing enough if you can get by with vites every few days!

Losing too much is very rare! Not losing enough is very common!
 
Turned in my gallon o' urine this morning (aka 24-hour urine collection). They clearly do not size those containers for someone following a keto diet. Ahem.

Meanwhile, I am losing at a good rate. I'm about to start a modified "clear liquid diet" for this week. Modified because I'm still having coffee with heavy cream at breakfast. The rest of the day will be jello, broth, protein drinks, etc. Honestly, after how much I have starved recently for my 4:30 pm endoscopy and 1:00 pm UGI, just having liquids all day doesn't seem that drastic anymore!
 
Trace,

Have you watched the youtube videos by people who had the DS? I found them awesome and people tend to do them for themselves and they get lots of support. You will clearly get tons of support here, but I found them after I got surgery and wish I had done one and joined this community.

Here are three I like a lot

https://www.youtube.com/channel/UCKmYCxFMFgYOdozHezq2DCw/videos - I looooved this one. I binged watched it all. She pops in on this board. She is so real

https://www.youtube.com/channel/UCbizZSc7-3ib0lsK4NyBvqg - I really like this one. She also is on this board. She is so sunny. I also think she is in Seattle.

https://www.youtube.com/channel/UCViqFy_olp9Sw0646XZ00bw - This woman had a SIPS and not the DS, but I found I like her a lot.

I hope you find these as awesome, real and empowering as I did.
 

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