Five Years!!

Aug 10, 2011

I spent my five-year surgiversary traveling across the country by train, returning from my son's wedding in Montona, and it allowed me some time to contemplate this great gift of the DS I've received.     While there, I hiked the Rockies, ran around helping with the wedding, walked up and down more hills than I ever imagined, and wore an itty bitty purple dress that I picked up from TJ Maxx for $20.     I would have NEVER been able to do all of that at 282 lbs.    The last time I went out west, that's about what I weighed, and I sadly sat in the car or at the bottom of a trail head, too heavy to keep up with my family.   This time, they had to keep up with me.    At my son's wedding, a member of the bride's family, whom I'd never met before, did not believe I was my son's mom, and said I looked like a "diva."  I wanted to get down on my knees and kiss her feet with gratitude.    

After eating my way across the country (I was really careful with wheat and sugar because farting and rail travel do not mix) but still indulged in many yummy treats, including pheasant sausage, elk, buffalo and good ol' Montana beef, and vast amounts of wonderful local potato chips, and hopped on the scale this morning.   123.2 pounds.   I'll take it.    Five years out, with minimal weight regain.   I keep the gas under control if I stay away from my enemy, wheat.    Sometimes, though, I choose to eat as I please and pay the consequences.   I would love plastics, but they are probably not in my future.     I was rather disappointed with how my arms looked in the wedding pictures, but on the other hand, they are what they are, and I'm not ashamed to admit I've lost weight.

My five-year check-up is not for two more weeks.    I'll report the results of that when the time comes.   Most know that I've struggled with D issues, so I'm curious to see how that's going. Other than that, it's life as usual.    I remain, as in past years, humbly grateful that I can walk through life light and healthy.


3.5 Year Update

Feb 11, 2010

Well, another half-year has passed and I'm still around, my weight is blessedly stable, and I'm still posting actively on this board and in love with my DS.    After 2.5 months of twice-weekly Vitamin D infusions, my D is rising (30 at my last blood draw), my calcium is (8.7 as of yesterday) NOW in the normal range and my PTH is heading downward.    I am a bit of a guinea pig in the Vitamin D infusion world; there is only one other individual that I know of having them, and she too is seeing good results.    We are both hoping that this experience can help the other less than 1% or so of DS'ers who are stubbornly malabsorbing D in any quantity.    I suspect that I might have had a severe D deficiency pre-op.    My values are not rising as quickly as I'd like them to be, but my doc and I have learned that D is absorbed optimally through the gut, since mine is not being absorbed there, we have to turn to the next best thing.    My hope is that I will eventually be able to have IM D injections.   Once we get my D up to a high level, perhaps in the 50's, then we'll play around with injections to see what they do.     Going to my local cancer center twice a week for infusions is a bit time-confusing, even though I'm only there for an hour maximum, it's still just one more time commitment that I'd like to not have.    The staff at the infusion center often ask me whether, knowing I'd have to go through twice a week infusions, perhaps for the rest of my life, would I still have this surgery again, and my answer is always, without hesitation, HELL YES.    I was far, far, far more miserable physically impaired, uncomfortable and emotionally insecure as an MO individual than as a thin person having to be poked with a needle twice a week.   The inconvenience is all relative.
I can eat a LOT these days - I thank God for my malabsorption.  The usual suspects still cause me gas - white flour, too much sugar and mallitol.  Other than that - I eat a tremendously varied diet, still placing the most emphasis on protein.    When I see the scale begin to creep upward a bit, I cut back on carbs and it goes back down.   I'm wearing the same pants for the third year in a row.   I'm getting rather bored with my wardrobe these days!   Yes, yes, yes, as so many say - I'd have the DS once a year just to feel the way I do.    Good luck to those just beginning on this remarkable journey.  Please PM me if you have any questions.

Vitamin D, Calcium, and why fat might NOT be my friend....

Oct 06, 2009

I have received many PM's inquiring about how my visit with an endocrinologist from Northwestern University went on Friday.  This is very long, but I am posting this to all so that perhaps others might find my experience helpful.
Let me first preface this post by stating that there has been some comment and speculation that, because I have persistent deficiencies, and because my body weight is low (which it is not for my height) I have in some way been noncompliant, have "body dysmorphia issues" or that I have an eating disorder.  THIS IS IN NO WAY TRUE.   I have been compliant, proactive and involved in my DS experience from the get-go.    I am one of the two percent or so that experience persistent deficiencies despite careful and extensive supplementation.  I eat a healthy, wonderful, varied, full diet.   My BMI is well within the appropriate range for my height, even taking loose skin and other factors into consideration.  I am short in stature and small-boned.  I wear a size 2 because of that, not because I had a certain size in mind and felt that I needed, at all costs,  to reach it.   These issues have been raised to me both in PM's and within other posts, and I find these assertions insulting and offensive.   After I hit an ideal BMI, I called it quits.  My body decided otherwise and settled in at 120-125.  At my exam, fully clothed, I weight 125.9.   I just wanted to get that out there.   The DS is not always a perfect experience for everybody, and although we all want to "pay it forward" and put this surgery in the best light possible (and I have NO REGRETS at all about having my DS!) sometimes problems can arise.    Like I said, I'm a rare bird here, but it can happen.  
Three years ago, pre-ops were not routinely screened for D, so I have no way of knowing whether or not I was deficient going into this.   At one my one-year check-up, my D was low, and I was prescribed a higher dose of D than what I was taking.   I complied and went up to, I think at that time, 10,000 iu a day.   This, of course, was not sufficient, and my D continued to plummet.   By my 18-month check-up, my calcium was at the very low end of normal, and my surgeon realized that perhaps I needed a PTH done.  Duh.  This was high.    I decided on my own to go on 50,000 iu a day and to get a DEXA scan, which came back that I had osteopenia in my spine and osteoporosis in my hips.   Again, independently, I decided to go to an endocrinologist.   At this time, I was also seeing a hematologist for my iron deficiency issues.   Calcium and iron compete with each other, and often, if one is taking calcium, the iron suffers, or vice versa.   I was taking 2400 mg of calcium a day.   The endo ran a 24-hour urine oxalate and calcium test, and it showed that I was not absorbing calcium.   At that time, my serum calcium was low.  Warning here:   when serum calcium levels are low, the damage has already been done.  Do NOT let anyone let you believe otherwise.    That's why it's SO important to look for that D/PTH ratio.    He put me on increasing doses of D and calcium.   At my last set of labs, three weeks ago, despite taking 200,000 a day of dry D and 7,000 mg of calcium a day, my 24-hour urine STILL showed calcium absorption TOO LOW TO QUANTITATE.  My D had dropped from 33 to 29, and my PTH had gone down one whole point from 104 to 103.  
My surgeon at this point offered a revision.  He is a great surgeon, but not an experienced revision surgeon and I really wanted to see about finding the best revision surgeon possible.   I wanted to also make sure I'd left no stone unturned in regard to seeing what I could do with supplementation before having to resort to that.  I am full of adhesions and because I am still within the desired body fat range, I really am not interested in gaining weight and that's the risk with of a revision.      NOTE:  that DOES NOT mean I have body dysmorphia issues.   I would hazard a guess that there are very few three-years-out DS'ers that would feel any differently about the prospect of gaining weight.   If my health crucially depends on it, then I am prepared to have some weight gain.   If I can treat this in other ways, I certainly will.  

After a great deal of research online, I found an endo doc at Northwestern University in Chicago that had coauthorred several papers on malabsorption of micronutrients in post bariatric surgery patients.   My hematologist knew him well and offered to connect us.    He was a very careful thoughtful man, was fascinated by my history and spent 90 minutes with me.   I brought copies of studies and all of my stats and he looked them over minutely.   He admitted that I was pushing the outer ranges of his expertise in regard to calcium absorption,  and he wants to confer with the head of Northwestern's Bone and Mineral Center to further help.  These were the suggestions he made for now:
1)  There does not appear to be a need for an immediate revision at this point, unless he sees some really awful DEXA results, but the fact that I am asymptomatic at this time is good (no bone or muscle pain, good energy, etc.)  or if my D plummets further. 
2)  He was shocked that no one had offered me D injections.   He felt that because this bypasses my gut, this would immediately raise my D, lower my PTH and hopefully then trigger calcium absorption.   If I can get my D and PTH stabilized, I can then go on one of the biophosphates to help with bone loss. 
3)  He also felt that because my weight was stable, that pancreatic enzymes were not indicated until I try the injectable D.    He also suggested that I take all my calcium with dairy.   He stated that there are studies out there that indicate that this facilitates absorption.  
4)  Here's the sad one folks.   He feels that my super low cholesterol (88) indicates that I am absorbing very very little fat, if any, and that my high fat diet is just pushing nutrients right through my body and pulling all of my fat solubles, along with the calcium, right along with it.   My understanding is that calcium binds with fat for absorption.  I might have this wrong, but I think that no fat hanging around means no calcium absorption.   I love my fat - I love my bacon and popcorn with butter.   He suggested I find a healthy balance - still enjoy my nuts, still enjoy full-fat, but that perhaps I should stick with lower fat protein sources to increase my absorption, and to not use fat so liberally. 
5)  My protein is low (5.2) and my albumin is at the lowest range of normal, but he did not feel that I was in a severe protein malnutrition situation that required an immediate revision.   My protein was in the high 5's even pre-op.   He said he'd like to see me continue to push the higher end range of protein, and to try to get it in lower fat sources so that I'd absorb it better and hopefully get that number up again.   I've been shooting for five eggs a day and he agreed that that was a great source of protein, as well as the whey shakes.   He wants me to push for over 150 grams of protein a day.  

I am hoping that his consultation with other doctors will provide us with some more insight into other forms of calcium and their co-factors.  He also mentioned a physician at the University of Chicago who is known worldwide for his calcium metabolism knowledge and that we might want to consider turning to him.  He said I still might end up needing a revision, but that let's try these first.  He said I had a case of "extremely recalcitrant Vitamin D malabsorption."

So, all in all, I came away from this meeting fairly satisfied, but still with lots of questions unanswered.  I felt, however, that my objectives were met in that if he didn't have all of the answers, then that he knew people who did, and to this end, I am hopeful that I'll get the best information possible before deciding what to do in regard to my bone health

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Happy Three-Year Surgiversary to Me!

Aug 09, 2009

Happy Surgiversary to me!  I finally feel like a full-fledged "veteran" now, and still reflect every day of my life on how grateful I am to have had this surgery. I went to the doctor last week, and when I was weighed, the nurse noted, "You weigh exactly what you weighed a year ago (124)" I think I have NEVER weighed the same from year to year! I was always either losing, or gaining. Mostly gaining. My doc, (ob-gyn) who did not know me pre-op, commented on my healthy weight and how much easier it is to examine a thin person. My official three-year check-up is in two days, and I am anxious to see how my labs are doing. My 30th high school reunion was this weekend, and it was truly a mind-blowing event! I felt like Cinderella at the ball. Some people had not seen me since high school, some had seen me at the 25th, where I was almost 100 pounds heavier. Fortunately, none had seen me at my highest! People actually stopped talking and stared when I walked in. I was so nervous I actually felt sick to my stomach. Classmates kept telling me how great I looked, and guys were coming up to me and saying "My God, you are so hot. Did you look this good in high school?" Men were buying me drinks all evening and following me around like puppydogs. Never mind that I'd mention I'd just gotten married six months before, they still did. I hate attention on myself - always have, and I was so uncomfortable, I couldn't look people in the eye, LOL. I finally calmed down after two drinks. Interestingly, there was this group of former high school beauty-queen types there. You know - the popular clique that the boys only had eyes for and who thought they were all that? Some of them still looked pretty good, but it was fun to see how they were artfully trying to cover up their back fat and poochy tummies with their strategically placed clothing. A few looked well-Botox'ed. They stood and looked at me and whispered amongst themselves, but no one approached me to talk to me. Finally, towards the end of the evening, one broke from the group and walked over. She had seen me at the 25th. She said, "All right, Julie, come out with it - you are thinner than anybody here and you look amazing. How'd you do it?" I had told myself that if no one asked, I wasn't going to volunteer the information, but if anybody came right out and inquired, that I'd tell the truth, so I told her that I'd had a form of weight loss surgery called the duodenal switch. She insisted I come over to the "group" and tell them what I'd done and they all were quite fascinated. She of course had to get a dig in, by saying, "I saw you at the 25th and you really needed to have that surgery." Duh. Like I said, surreal. I can't believe it, but I forgot my camera!! There is a picture of the outfit I wore on my profile.  It was a great way to celebrate my three years as a thin, healthy, mobile, energetic person! I LOVE my DS! 

Endocrinologist update

Feb 14, 2009

I met with my endo doc yesterday, and he refers to me as a "most interesting case."   I have osteoporosis and a condition called hyperoxaluria (high urine oxalates caused by formerly non-existant calcium absorption.    So, here's the scoop for those interested:

1)   After three months of being on 150 k of D a day, my D is up to a 42!!!   I am thrilled, and so was doc.   He would like to see me at least up to 80.  

2)   My PTH has come down to a 74 (10-65 ref range).   It was up in the 100's.   Good progress here, but still more to be made.

3)  My serum calcium is now at the very low end of normal.    That's after taking a whopping 5,000 mg of calcium a day.     Doc is still not thrilled with this result, as one's calcium needs to be severely depleted in order to be there.   He has now upped me to 7,000 mg of calcium a day, taken ALL with meals.     This helps bind the oxulates to the calcium.   I am not happy with upping the dose because the calcium makes me constipated and bloated.

4)   Now, these are the important tests, and anybody who has low D, low calcium and high PTH REALLY needs to get a 24-hour urine clearance test for creatine, calcium and oxalates.   This is the only true way to see how much calcium you are absorbing.   My 24 hour urine clearance test shows that I am now absorbing SOME calcium.  He said that previously I was absorbing NO calcium.    He said it was the worst case he'd ever seen.     I'm now at a 78 (42-353 mg) and he'd really like to see that get a lot higher.    My oxalates are still too high, putting me at risk for kidney stones and kidney failure.    I'm at 111.4 (reference range is 3.6-38.0) and this really needs to come down.   That's why he upped me to 7,000 mg of calcium.   I told him about constipation problems and he prescribed Miralax for me.     He told me to take more magnesium.

5)  My hemoglobin and hematocrit are heading south again, and I need to get my ferritin checked.   I'm thinking I'm probably due for another infusion soon.

6)  Now here's the truly sucky part:    My doc put me on a low oxalate diet, and the foods highest in oxalates amongst others) are nuts,soy,  tea, potatoes, dark chocolate.   These are all staples in my diet, especially the nuts, soy and tea!  No peanut butter, no soy crisps, etc.      I have this 20-some page list of foods I can eat and can not, and there is no rhyme nor reason as to what is high in oxalates and what is not.      Fortunately, dairy products and meats are not high in oxalates, but I rely a lot on potatoes as a starch because I do not tolerate white flour.    I drink a ton of tea a day.   I've been pouting about this issue all weekend!   

Anyway, for those of you struggling with calcium/D/PTH issues, I hope that this information helps you.

Osteopenia/Endocrinologist Visit

Oct 10, 2008

I went to see an endocrinologist today, at the suggestion of my PCP.   Because my PTH levels were elevated, he had ordered a DEXA (bone density) scan, which came back quite icky for a pre-menopausal woman, and I was told I was osteopenic.     He felt that because of my malabsorption issues, I should see someone with a bit more knowledge about this than him.  I live in a rural area, and had to travel the 100 miles to Grand Rapids to see one, but it was well worth the trip.   First, he complimented me profuslely on my knowledge of my nutritional needs and my adherence to my vitamin regime.   He told me "You are not the average WLS patient."  I had  managed to bring my D up to 24 (from an 8) by taking 50 k IU a day of D3, and I just recently upped it to 100 k a day.   He agreed that this was optimal and confirmed what most of us DS'ers already know, that I will suffer no toxicity problems because of it.  He wants to see my D go above 40, and preferably closer to 80.    He is having me collect a 24-hour urine sample for a clearance test, and told me that it was a far more reliable indicator of calcium storage than a blood sample, as usually when the calcium in blood goes down, it's almost too late.    He felt that my osteopenia could be reversed and or stabilized by careful management of my vitamin supplements.   Of course, he told me that strength training and weight bearing exercises would help prevent further bone loss.   I was relieved when he told me I really didn't have to give up my one Diet Coke a day habit, LOL.     He told me he'd rather be seeing me at a normal BMI with some perfectly correctable nutritional issues than at my old BMI for diabetes.   I think a cool wow happened when consulting with him.  He was looking down at my medical records taking notes, when he said "How old are you again."   I said "47."   He stopped writing, looked me up and down, nodded his head, smiled and said "Hmmm...." as if surprised.   So, bottom line, he feels that this can all be managed from a nutritional standpoint, and I do not have to go on any preventative meds.    He is going to review my DEXA scan and labs further, and will tell me if he feels I currently need any other treatment, but he thinks this can be very well managed.   Yay!


Aug 09, 2008

Two years ago today, I headed into surgery knowing in my heart that I'd just made one of the best decisions of my life.   I sometimes worried at how much faith I'd placed in this surgery, and my doctor, but I just knew I was going to make it work, and I did.    Two years ago today, I could barely walk up a flight of stairs.   Now I can run them.  Two years ago today, everything hurt, now nothing does.   Two years ago today, I weighed 268 lbs and wore a size 22.  Now I am 120 and wear a size 2.   Two years ago today, I was in a destructive, toxic, alcoholic relationship.   Now, I am strong-minded and free, and dating a man who treats me like a princess.     I am healthy, energetic and happy.   I am so terribly grateful for this surgery that my eyes well up as I type this.

I went to an art fair this morning and celebrated my two year success by eating an elephant ear.    I told the man that sold it to me that it was my "once a year elephant ear" and he commented on how I was so skinny, I could probably eat them once a day.     Maybe I could, but I'm not going to push it.  I eat mostly what I want, and I can really put some food down!   I do stay away for the most part from white flour and simple carbs, but usually have a small bit of something every day.   My gas issues have been GREATLY reduced by using probiotics and only eating modest amounts of simple carbs.    

I have had a bump or two on the road, but minor ones.  I had an internal hernia repaired in June.  This can happen to ANYONE who has lost weight, or even had a baby, because of the extra free space in the abdomen.   I had problems with anemia, and have had iron infusion.   I had an allergic reaction to the first two, but the third one did the trick, and my hemoglobin and ferritin are both normal now.   Best of all, after starting on 50 k IUD of D every day (100 k for the first month) my D levels are NORMAL!   My A is normal too.   I couldn't ask for more, could I?

To anyone contemplating or about to have this surgery - just do it.    It's the best thing I ever did.  Keep a positive attitude that you WILL make this work for you.  You will need to undergo some changes, in lifestyle, and mindset, and please understand that from the get-go.  Don't worry, they are only minor ones, and you WILL be able to eat normally again!   Life is grand, for sure.  Blessed be.

Twenty Two Months and back in the OR

Jun 07, 2008

About a week and a half ago, I experienced the worst abdominal pain I'd ever had in my life.    It started out very diffuse and centrally located throughout the abdomen.   The pain radiated right through to my back.   I was unable to sit, stand, or bend.    I was terrified.  I went to the ER, and my blood pressure was 169/105.   I normally have very low blood pressure.    I could not even hold still long enough for them to put an IV in me - they kind of had to follow me along as I paced up and down the floor.   After an IV push of Dilaudid (thank you JESUS!) the pain subsided enough so that I was able to settle down.    The pain began to localize to the general area of the mid-lower right quadrant.    A CT scan was performed and the doctor told me they saw "lots and lots of stool," some pockets of fluid in my abdomen and some lower pelvic thickening.    They suggested all this pain might be from constipation, and sent me home.   Right.

I contacted my WLS surgeon and he wanted to see me.   He didn't examine me for more than thirty seconds when he stated that he felt this was right in the spot where internal hernias occur and wanted to go in and look around with the laparoscope.  He said that these are very commonly misread on CT's, and that your average radiologist doesn't know what he's looking for.    In true Dr. K fashion, he had me scheduled for surgery within three days.   I did some research on internal hernias.   They occur fairly frequently in individuals who have had lap surgery, especially those who have lost a lot of weight.   The new free space vacated by fat becomes a spot for the bowel to loop or twist.   They are easily corrected, but can be devastatingly dangerous if they are not.     Dr. K. fixed the hernia, took down some previous adhesions and took some photos of my lower pelvis to bring to my ob-gyn.  I am sore, moving a bit slow, and tired.   I am having another iron infusion on Monday, and I hope that'll help me bounce back a bit faster.    I am so very grateful that I did not accept the ER doc's word on this CT scan, and that Dr. K knew exactly what I was talking about.

A word of warning:  If you feel that the pain you are experiencing is out of the realm of what a doctor is suggesting, it probably is!   Continue, as a DS'er, to be proactive about your post-op care.   Be aware of what can arise, and don't be afraid to insist that someone else take a second look!

21 months

May 10, 2008

I had an iron infusion today.   Despite the fact that I had been taking Repliva for six months,  my ferritin remained very low, and I was referred to an oncologist/hematologist.   She felt that an iron infusion was the best route for me, and got me scheduled for one immediately at my local hospital.  It was a six-plus hour affair, because this doctor is very careful about preventing allergic reactions.  I was given a bag of cimetidine (Pepcid) first, to prevent any GI disturbance, then was given benedryl and decadron IV (decadron is a steroid).  After completing those, I was given a test run of the iron by IV push, with the nurse monitoring my vitals every five minutes.   I sailed through with flying colors, so I was given the full bag of iron.   I slept a great deal of the time, both the Pepcid and the Benedryl made me sleepy.    I did develop some hives immediately afterwards, but I took some more Benedryl and they resolved.   I have to have two more infusions over the next four weeks.   The doctor feels it is likely that I will have to have them once a year for the rest of my life.   I still consider it a very small price to pay for being thin.!

After a meeting with my surgeon's office, I am also take 100,000 IU's of Vitamin D for a month.   After being retested, and if my D looks better, I will go on 50,000 IU's.

I have had some weight rebound, which is a good thing, according to my surgeon.  I am in about the 125 range.   I don't want to be any higher than this though.

All in all, I can't be complaining!

Eighteen Months and Just Struttin' Through Life

Feb 10, 2008

At eighteen months out, my weight remains stable, despite eating an embarrassing amount of food.   I worry about how much my stomach has stretched back out.   I range between 117 (too thin) and 125.    I was 120 this morning.   The wide weight range scares me, but I've found that it is definitely cyclical and I'm just trying to roll with it.   I do not notice a huge difference in how my clothes fit - sometimes when I'm in the upper range, my tummy feels rather bloated and my pants might fit a bit tighter in the waist.   I always seem to wander right back down to the 120-122 mark though.    I've quit obsessing about it.  

Gas is still my only negative issue - but I've learned that 1) Probiotics really DO help and 2) activated charcoal helps.    I'm still holding off on resorting to Flagyl, but I'm going to be standing up in a wedding in Texas in April, and will probably go on it in preparation for that, as I'll be staying at my best friend's house with lots of other family members.

I am being retested for my vitamin levels next week, and I suspect the news will not be good on my D and my iron, but I'm just going to go ahead and start taking the 100,000 iu's a day of the D, per Vitalady's recommendation.   I don't care what my surgeon's office says.   I'm also going to start tanning this week.

With all that boring stuff taken care of, I just wanted to add that I am still filled with incredible joy and gratitude EVERY SINGLE DAY of my life for the opportunity to have had this surgery.    I will never take for granted the changes that have occurred.   I still am in awe of my increased energy, mobility and confidence.   I feel like nothing is insurmountable now, and I surely do wish that I could aid every single individual out there who is suffering from this terrible disease of obesity.    It's Black History month, and my students are studying about the Underground Railroad and African American spiritual music.    I'm teaching them the spiritual "Free at Last."  The words go.....Free At Last.....Free At Last.....Thank God Almighty....I am last!      Yup - that's like it is.    Sing it with me now!

About Me
Ludington, MI
Jun 17, 2006
Member Since

Friends 288

Latest Blog 28
Osteopenia/Endocrinologist Visit
Twenty Two Months and back in the OR
21 months
Eighteen Months and Just Struttin' Through Life