DS'r new to this site in big trouble with vitamin neglect

[EricW]

Thanks again all. Just so I don't seem unresponsive or flakey, the nature of my business sometimes has me being called out of town at any time. I had to jump on the road for Portland just after my last post and had no time to respond. Been about 15 hours of driving so far.

I will add the bone density to the scan. Funny about the height thing, two weeks ago I was only 6', not 6'1" no matter how hard I tried. My PCP mentioned two ruptured discs I deal with but I bet she didn't know about the bone density thing. Bummer. I will post up my results as soon as I get some. Again, I appreciate the welcome and kindness. EW

 

[robs477]

Wow Eric, sounds like the core group of our Vets all chimed in with good advice. They are SO flippin smart when it comes to this stuff and you should be in good hands now. Just with my rather limited experience and knowledge, I think there may be a pretty good chance you may have caught this in time. I'm saying that mostly because of your lack of serious symptoms, but then again, as said, I don't know Didley, not even Bo...lol I'm glad your here though, you seem like a nice fellow.

 

[Brandy]

Welcome Eric.

From my own limited experience I suggest stocking up on anti-constipation products as well. I've learned to be very proactive about this or it leads to pain and hemorrhoids (or worse) and those just suck.

Try some combination of Miralax (or generic), Stool softeners, magnesium oxide, aloe and a laxative need to be kept in balance. You might also want to go with the type of iron called heme, because it is non-constipating and can be taken at the same time as your calcium which simplifies things in the beginning. Or your doctor might want you to get an infusion right away, (ask him about this) which means you won't have to worry about the iron pills.

I had issues with lots of different brands of vitamins, especially with calcium. I had some swallowing problems after my surgery and then I have constipation when ever I up my calcium. It was hard to get everything organized and moving forward, but now that I have the ratios down, it is much easier. Just keep telling yourself it gets easier and if a brand isn't working for you, try a substitute. The one thing everybody agrees upon is that everybody's body deals with the surgery very differently. But seems like everybody finds a way to successfully cope, eventually.

 

[Whit]

Welcome in the group Eric.

 

[EricW]

Thanks again all for the sincere welcome. Got my labs drawn on Thursday morning but I'm sure my local clinic had to send them off. hope to get numbers soon. I am pursuing the infusion thing but again, my local doc's know nothing of it. Hope that will be an option for me to get jump started.

Brandy, are you the Brandy I met for breakfast at the Maltby Cafe years ago the morning after the Renton support group meeting? If so I remember you and the cinamon rolls really well. Haven't seen either of you since. lol. EW

 

[Brandy]

Not that Brandy.

Do you know if the Renton Support Group still meets? There is a DS group that used to meet at the Tukwila Sizzler, but they lost their room and in are trying to figure out their way forward right now. I would love to find another local group.

 

[EricW]

I used to get notices from "Meet Up" that Lara sent around about the group. It has been since last fall though. I have her contact some where, if I can find it I will try to get an update. I would be interested as well. We should not meet at the Maltby Cafe though until will power is more plentiful. EW

 

[Will2014]

Hello All:

My name is Eric W and I am a DS patient that was switched by Dr. John Rabkin in late August 2008. I am a 52 year old husband and father or two grown sons. I live in NE Washington State on Lake Roosevelt. I am coming to this site with the hopes of gaining knowledge, information, and support to help me save my life and get on track with a vitamin and nutrition regimin that I can learn and follow.

The bottom line is this. Since my procedure in 2008 I have not had a daily vitamin or protein intake or regimine. I went from 450 lbs pre-op to a low of 240 a year or so later (I'm 6' 1"). I have put 40 of that back on in the last two years but have held around 280 for over a year. I am fully aware of the commitment and obligation that came with my procedure and it was explained to me fully. I got a normal batch of vit's early on but had a lot of stomch discomfort trying to take them. With time I eventually quite trying and I never really got an understanding or really got my arms around the who vitamin thing and how it relates to the DS. I live in a town of 1500 or so with Spokane Washington being my closest major city. I have found no providers there that really even understand what the DS procedure is. I do see an endocinologist lately but I'm sure he doesnt fully understand as he writes me oil based D to take once weekly.

So, I am on a mission to get on top of my health and try to figure out this web of vitamin stuff and how it relates to my digestive system. My hope is that those of you with better knowledge and understanding will help me try to get to that place where I can be actively managing my own health. I am a quick learner and have a solid understanding in many other areas of life and business but I swear this vitamin management thing is like cryptonite to me.

I will have full labs done this week and will be scheduling to see Dr. Rabkin this month as well. I look forward to meeting and learning from any of you so inclined. I too have spent a lifetime of service to others though in this case I am probably a better example of what not to do at this point. I am glad to offer any help though I dont have much to offer on this topic at this time.

Thank you for taking time to read this, it is hard to openly admit such a catastrphic failure of such a wonderful gift (DS surgery)but I fear if I dont that I will not properly get my new direction started. Time for me to shine light on this and start driving the bus instead of just riding for free. Take care. Eric W

Great post Eric! It's not always easy to admit when we blow it, especially to strangers on some website. But you've made a wise decision to seek help here, because the Vets here are frequently far more knowledgeable than the doctors performing the DS procedure regarding supplementations , etc. It's because they've lived through it all and have researched the hell out of it for personal reasons. My doctor-great guy and a good gastroenterologist. He offered me vitamin d gel tabs. I had to gently inform him that due to my fat malorbtion those weren't going to work for me. He sheepishly admitted to not knowing a lot about the DS and greatfully accepted the written packet that I think Diana made up to educate docs about us DS'ers needs. To his credit he wasn't offended and I referred him to this site. Names Dr. Nudell , I'm not sure he's registered but says he came to this site to research about my case. Fantastic doctor though. I gave him the lab printouts from this site, and he orders them exactly as written. He's even asked me some very good questions regarding the DS. Great man. Anyhoo, let's not worry about the past but focus on getting you straight now. Diana's point is well taken and not designed to torture you I assure you. But when we insult our bodies severely, there are many times consequences we'll need to deal with going forward. If you have become osteoporotic or have some renal damage, we'll just need to mitigate any damages done and hopefully reverse what needs reversing. But the road to recovery ALWAYS begins with an embrace of the truth. It's why I have "Carpe Veritatem" or seize the truth on my signature here. Anyone can smile as they blow smoke up your keister, but only someone who really cares about you will take the time to actually talk to you straight. You'll learn to appreciate that the longer you are here with us. Listen to these veterans here my friend...trust me! Best of luck to you going forward Eric.

 

[EricW]

Thanks a lot Will. Good points well taken. I will start a new post that will have my latest lab results and move forward from there. Thanks again for taking the time to respond. Take care. EW

 

[Will2014]

Thanks a lot Will. Good points well taken. I will start a new post that will have my latest lab results and move forward from there. Thanks again for taking the time to respond. Take care. EW

Anytime mate. I do believe that God has made us with an amazing ability to overcome hardships placed on our bodies. Think of the prisoners of various wars held for years in terrible conditions. Somehow most bounce back and can over come the damages to their bodies. The fact that you are working and able to live your life suggests good general physical health, though admittedly calcium leaching from your bones is pernicious by nature and may well be asymptomatic. I put in a word with the BIG GUY tonight for you, and I really like your chances! You're going to be fine and feeling better than ever really soon. Now, as a Patriots fan, I think it's necessary for us to talk a bit about the superbowl.... Haha! Just kidding man. I have a great friend who lives in Renton who's heart broken over that loss, and I completely understand. Forget I mentioned it.