Hello, I'm new, having some DS issues and I'm scared :(

[chevtow]

I'm on my way to Dr. K now!! He's a couple of hours away but I couldn't believe it when he himself got on the phone with me, not even being a current patient and said to get in there right away.
I can't thank you all enough for the referral to him and I will update you when I can. Thank you so much!! And I will talk to him about Creon definitely!

Very impressive that he got on the phone with you AND got you in so quickly. Very few doctors, especially surgeons, would do either. I am glad to hear it

 

[barrelracinbroke]

I was hearing alarms and seeing flashing lights when I read your initial post, so I am somewhat relieved to see not only the answers you already received, but that you are open to what you are hearing and able to apply it to your situation immediately and also that you were already able to see Dr. K.

Of the issues you initially mentioned, the only one I'm super familiar with is the kidney stones, but want to mention a few things. Diana mentioned Urocit-K, which is by prescription only but I'd ask Dr K if he can get you going on that for the kidney stones. If he can't, then talk to a nephrologist. If your 24 hour urine tests have shown low citrate, I'm sure it won't be a problem. In the meantime, getting real citrate however you can won't hurt (likely not enough on it's own, but may help) like lemonade using real lemon juice.

Also, my stones are made of calcium and oxalate, as most are, and I'm up to 6Kmg of calcium a day. The main reason it has been raised so many times, is like Diana said, it will bind that pesky oxalate in the gut so you don't get to absorb it (calcium can be bound with other stuff in the gut as well), so I take two calcium tablets (600mg) EVERY time I eat. If your taking your calcium at some other time, it can't help with the oxalate in your food.

When you said that you still have oxalate crystals despite supposedly not having kidney stones, that means you are still very likely making them, or will, so keep upping the calcium till the crystals are dealt with, and the plan is to also get enough calcium that some even makes it to your bones. You will also have to adjust your magnesium up with the calcium. Many say to take 50% of whatever you take of calcium, so if you take 2000mg of calcium a day, you will need 1000mg of magnesium. My nephrologist is pushing me to a 1/1 ratio of them, and may even go to a 2/1 ratio, with twice as much magnesium as calcium, but you want to discuss this with whichever physician follows your labs with you.

Thank you for the continued insight!!
About my urine oxalate, I haven't had a 24hr urine test since my revision, just urine tests with lab orders. Dr. K told me to stop drinking coke (which I already had a few days prior), focus on low oxalate foods, increase my water intake, drink a couple glasses of lemonade a day and to take my calcium with meals to bind with the oxalate as some of you have mentioned.

I've heard a lot of talk about magnesium being important as well in dealing with osteoporosis, is there a particular type you take?

 

[barrelracinbroke]

Very impressive that he got on the phone with you AND got you in so quickly. Very few doctors, especially surgeons, would do either. I am glad to hear it

Thank you! Yes, he was amazing. I was shocked as well.

 

[DianaCox]

I was told magnesium citrate, which makes sense.

 

[bearmom]

Thank you for the continued insight!!
About my urine oxalate, I haven't had a 24hr urine test since my revision, just urine tests with lab orders. Dr. K told me to stop drinking coke (which I already had a few days prior), focus on low oxalate foods, increase my water intake, drink a couple glasses of lemonade a day and to take my calcium with meals to bind with the oxalate as some of you have mentioned.

I've heard a lot of talk about magnesium being important as well in dealing with osteoporosis, is there a particular type you take?

I take magnesium citrate, but would go with whatever Dr K suggests.

 

[barrelracinbroke]

I would assume so too.

 

[barrelracinbroke]

Dr. K didn't discuss my vitamins much. I asked what I should take or should I just continue my current multivitamin and calcium and he said yes. I assume that's mainly because I don't have a lot of bypassed bowel?

 

[Elizabeth N.]

This is music to my ears!!!! SO glad this is working.

When I take flagyl, I don't bother with any more probiotic than usual until after I finish the stuff. Then I increase my probiotic to repopulate my gut with better critters. If I try to take both flagyl and probiotics, I get worse runs.

 

[barrelracinbroke]

Thank you Elizabeth
I hesitated taking my probiotic tonight since I've been so much better today. Not perfect yet, but already better with just 2 doses of the flagyl. If I get the runs tonight again, I'm gonna stop taking the probiotics until I finish my round of flagyl. But hopefully I won't!

 

[brooklyngirl]

Wow, I don't know how I missed this thread, but welcome! I'm so happy you were able to get answers to your questions and then get medical attention so quickly!

 

[Elizabeth N.]

I have this theory that sometimes, when you are flinging "nuclear bombs" at the universe of critters in your gut, a slightly slower tactical approach can reduce the collateral damage . In my gut, at least, the symptoms seem to calm down easier if I use the antibiotic first and then the probiotics. It seems like having two different bombs going off at once makes me a lot sicker before I get better.

 

[barrelracinbroke]

Thanks for the wealth of information you've all shared. I'm having surgery with Dr. K this coming Monday to repair my issue. He says I'll be in the hospital for 2 days and off work a week. I'm obviously nervous (because it's surgery) but I'm comfortable with Dr. K and know things will go well.

Again, can't thank you all enough.

 

[newanatomy]

Best of luck on Monday and for a quick recovery!

 

[barrelracinbroke]

Hi everyone, just checking in. Turns out, I had to have a little more surgery than expected. Once Dr. K got in there, he first saw that I had a hernia under my mesh. Then, to his shock, he saw that my revision in 2002 had been done incorrectly. The two intestines are to be reattached in the same direction. Mine were not. One was flipped and reconnected upside down to the other. He said he had never seen that before and was surprised I hadn't had problems sooner. He was so shocked he was going to post the photos and story on his blog. All of this has been very scary for me since health issues scare me anyway. I've always worried about bowel obstructions and I hope I haven't set myself up to always have problems because this is surgery #3 on my bowels. But, I'm finally starting to feel better. I'm eating and keeping food down well. I go back to work this Thursday and looking forward to putting all of this behind me.

Most important, I wanted to thank you all again for directing me to Dr. K. I will be continuing my follow up with him and will keep up with his recommendations moving forward. Now, it's time for me to gain some weight back and begin to heal. My body is tired and I'm weak. But, hopefully, I'll be back to myself in a few months.

I appreciate the ongoing support. Thank you all very much.

 

[DianaCox]

"A little history, I had DS surgery on 2/18/2000 with Dr. Gary Anthone at USC. Then, in 2002, I had a revision to lengthen my common channel since I couldn't stop losing weight."
"Then, to his shock, he saw that my revision in 2002 had been done incorrectly. The two intestines are to be reattached in the same direction. Mine were not. One was flipped and reconnected upside down to the other. He said he had never seen that before and was surprised I hadn't had problems sooner. He was so shocked he was going to post the photos and story on his blog."

I just looked at Dr.K's blog (which is very interesting, by the way - everyone should look at it from time to time), but he has not posted your story yet. I am very curious - who did your revision? IIRC, although Dr. Husted was not yet in CA at the time, he may have been touting his "intestinal transposition" theory. I found this blurb on OH by Husted, which I frankly cannot understand, and I understand quite a bit of medical/surgical bloviation: http://www.obesityhelp.com/magazine/restaurantcard.html/mode,pcontent/cmsID,11943/

The easiest revision procedure that increases both alimentary and common limb length involves a single connection to the small intestine; this is also known as entero-enterostomy and by some, the "kissing-X." The "neuro-endocrine brake" effect, generally enables patients to maintain some level of weight loss. The neuro-endocrine brake effect is also responsible for weight loss after Ileal Trasposition surgery.

Instances where calcium and iron malabsorption occur following Duodenal Switch, Ileal Transposition may be used as a means of intestinal elongation to treat these conditions. When Ileal Transposition is used in these cases, unlike a conventional Ileal Transposition, the Ileal Transposition can be done at the level of the duodenum, without having to re-connect the duodenum; after Duodenal Switch this is not an easy task. High Duodenal Ileal Transposition may only utilize a segment of the alimentary limb to perform the transposition. The rest of the alimentary limb is used for a "Parallel Ileal Transposition" at the level of the biliopancreatic limb. The Parallel Ileal Transposition joins the flow of food that resulted from the High Duodenal Ileal Transposition performed above. This restores calcium and iron absorption without entirely reversing the Duodenal Switch procedure.​

I wonder if someone can make heads or tails of this, and whether this is what was done to you?

I also found this description of Husted's VERGITO, which was posted by one of his "nurses" on OH:

The First Component: Vertical Gastrectomy

The restrictive effect of vertical gastrectomy and how it affects appetite and the overall decrease in food intake is well known. The natural inlet and the natural outlet of the stomach is preserved, but the excess capacity of the left side of the stomach is removed, leaving a 2-3 oz. tubular stomach. Reduction in appetite is accomplished in three ways: reduction in stomach volume, reduction in ghrelin secretion, and accentuation of antral stomach stretching. That the stomach volume is significantly reduced is self evident; the 1 ½ quart size stomach is reduced to a 2-3 oz. tube, restricting how much food can be consumed at a given time. Ghrelin, a hormone which affects appetite, is produced by certain cells in the portion of stomach which is removed, independently reducing hunger and food intake. Stretching of the stomach is another mechanism by which our bodies tell us when to stop eating, and the portion of the stomach that is most sensitive to this stretching - the downstream portion of the stomach known as the antrum - is left intact. In fact, because most of the stomach upstream to the antrum is removed, the antrum stretches sooner and faster than it normally would, resulting in a very strong signal telling your brain that your stomach is full.

The Second Component: Ileal Transposition

In this part of the procedure, a section of the downstream intestine - known as the ileum - is brought up and spliced back into the intestine much further upstream. In doing so, ingested food passes through the downstream intestine - the ileum - much earlier than it otherwise would be. When this occurs, the body reacts to carbohydrate meals much differently. The production of naturally occurring hormones in the intestine - such as GLP-1 or enteroglucagon - is increased, which have the effect of improving insulin resistance, which results in fewer calories being converted into body fat. This occurs despite the fact that the overall length of intestine is not decreased, and ingested food passes through the entire length of intestine. Unlike gastric bypass and duodenal switch, calcium and iron malabsorption do not occur, as these ingested nutrients are allowed to pass through the first part of the small intestine known as the duodenum. This reconfiguration of the intestine also results in decreased absorption of cholesterol, which occurs as a side effect of improved recirculation of bile salts to the liver.

The Third Component: Omentectomy

Omentectomy - removal of the omentum - has the effect of augmenting weight loss through a combination of improving insulin resistance and reducing inflammation. The omentum is the fatty sheet inside the abdomen which drapes over the intestine, and is a major component of organ or "visceral" fat, the type of "belly fat" which is associated with the highest health risk. Removing the omentum not only results in an immediate reduction in belly fat, but in the removal of certain substances produced in the omentum as well, namely, resisten - which contributes to insulin resistance and type II diabetes - and various inflammatory agents known as interleukins. Obesity is, in one sense, an inflammatory condition, and removing the omentum as a source of interleukins reduces the inflammatory response of obesity, especially to the liver during active weight loss. Omentectomy has been added to other weight loss procedures in the past and has been shown to result in better weight loss, when compared to the same procedures performed without omentectomy.

VERGITO: Putting it all Together

The overall effect of VERGITO is that of a restrictive operation accentuated by a metabolic effect. It occupies the gap between the purely restrictive procedures - such as LapBand and Vertical Gastrectomy - and the nutrient-malabsorptive procedures, namely, Gastric Bypass and Duodenal Switch. Because it utilizes a pylorus-preserving stomach pouch and an anti-diabetic effect by re-routing food through the ileum early on in digestion, VERGITO can be likened to a partial duodenal switch, minus the effect of duodenal exclusion and starch/fat malabsorption.​

Speaking of which, I stumbled upon this link (Husted's posts on OH) in looking up this information - very interesting: http://ec2-54-237-8-124.compute-1.a...047/a,messageboard/action,memberPosts/page,1/

Does anyone know what the "Husted HIT" ("High Ileal Transposition") operation is/was?

 

[Larra]

@barrelracinbroke I'm so glad to hear from you again! It sounds like you had a problem that was never going to get better without surgery, and that you had the right surgeon to identify and fix the problem. I hope at some point Dr. K will post photos on his blog of what he found in there (yes, I'm the curious type).
As to exactly what he found, I can't tell from the description. It doesn't sound like what Dr. Husted was talking about, though Dr. Husted's description is somewhat confusing in and of itself (I think maybe I get it, but I'm not sure). In any event, he may not have even been the one who did the revision, and I don't think we should jump to any conclusions.
The most important thing is that you are healing and recovering and doing ok.

 

[southernlady]

@barrelracinbroke glad to see you check in. And so glad Dr. K got you fixed up.