Information that needs to get out

Hello Fellow Februairians (is that a real word?), It has been a long time since I posted here, but something has happened in the last 3 weeks that I feel is SO terribly important to gastric bypass patients that I had to post here. I had my surgery 2/24/2004. I had lap Roux-en-Y and have lost 180 lbs. That is the good part. About 5 weeks ago I noticed that my gait had changed. I was walking flatfooted. I thought I was just tired.Then I started falling. My doctor put me in the hospital 02/14/05 and a central line was inserted in very next day after extensive tests. I came home on the 28th after 2 weeks with a Groshong catheter. I am doing hyperalementation (sp). I basically can not walk unassisted. I have leg braces a walker and the wheelchair gets here today. You may ask yourself why after all this time am I posting this. Well, per my neurologist, I am one of the people who's body doesn't absorb nutrients after gastric bypass. I was told time and time again that it was "NOT" my fault, wasn't something I ate or didn't eat or take. I just don't absorb. My doctor gave my mom a study from the Mayo Clinic that said that 16% of gastric bypass patients this will happen to. That's a lot of people. Please, please...if you start feeling a numbness in your legs or a dragging of the feet...please get to a doctor. Believe it or not, I was lucky...My doctor said that I was on my way to paralysis. Please pray for me and my family, this has been incredibly hard, but we will survive. The Lord says he will not give us anything we can not handle. I'm having to hold on to that. Sincerely, Noelle G

I am so sorry for your struggle. You are in my thoughts and prayers and keep us updated on your progress so we can support you through your terrible ordeal. sarah

Noelle, I am sending you lots of hope and prayers! I am glad you caught it in time. Keep positive and your chin up. Best Wishes, Jill

Noelle, Thanks for letting us know that this is a possibility and what to look for. I will keep you and your family in my thoughts and prayers. Is this the first time you were made aware that your body was not absorbing nutrients? I ask, because the last time I had blood work done, everything came back fine. Just wondering if this was something that just showed up after 16 months. By the way, Noelle is such a beautiful name! Wanda

Oh my Noelle, I have never heard of this. Thank you so much for taking the time to post and educate us. I am so sorry about the leg braces and wheel chair. I know this much present such a huge life style change in your life...something you never ever considered might happen. But, I am thankful that you have caught it before you became paralized. You are so fortunate that you receive such excellent medical care. You can count on me to help with the spiritual care. I will pray for physical, emotional and spiritual strength for you and your family. I always think thank God for God...how else would we survive this life. You take good care and please update when you feel well enough. Warmly, Paula P.S. I have an appointment with an endocrinologist this week because my muscles have been so weak and fatigue is ever present. I've been falling a lot too. I asked my pcp to run a metabolism test a while back, along with all the others. My carnitine level shows a deficiency and my pcp admits this is beyond her expertise. Carnitine is needed to metabolize lipids to energy in the mitochondria of the muscle cells. I will ask about this as well. Could you possibly email the citation so I can find the Mayo Clinic study? Thanks again.

I am sorry you are going through this right now, however, I appreciate the fact you thought enough of us to share your experience. I am praying you will soon get better. Again, thanks for sharing. I am sending your way. Shirley

Noelle - My thoughts & prayers are with you and your family - As one other person asked, I was curious if your surgeon had had regular bloodwork done to check the levels of the different nutrients done, or not? I'm not trying to point fingers, at all... I'm just trying to find ways people can check, short of coming to the same point that you are unfortunately at, to see if they are having severe absorption issues... If I can ask, what are the next steps for you? (besides prayer that things start working 'properly' again..) Again, our prayers are with you - ...Nick

Hello, Yes, my doctor was doing the bloodwork. He did it at 1 month, 3 months, 6 months and 1 year. I was told my liver enzymes were high, but that was it. Everything else was fine supposedly. Paula, if you can, go to a neurologist as well as the endicrinologist. The Creatine levels are your protein. The TPN stuff that I have to do by IV every day for 12 hours has 90.1 grams. PLUS, I have to eat. The muscle weakness and fatiuge are signs. Here's a test (at least one they kept making me do in the hospital) 1. Can you pick up your leg and straigten it out at the knee? 2. If you are laying on a bed and someone props your foot up at a 90 degree angle will it stay there? P.S. I failed both of those tests. As for the Mayo Clinic study, I will try and find it. My mom has a hard copy. It was in the Neurologist magazine in October (I also can't remember anything) Thanks heaps for everyone's understanding. No, there is not anything I can do except keep hooking up this IV for who knows how long, stay on the walker, use the chair for trips and just keep praying. I need to say that I wasn't trying to bring anyone down from a good holiday, but the fact is it IS happening and to a lot of people in various stages. Sincerely, Noelle

Noelle, You are in my thoughts, prayers and will be passed along on our prayer chain. May God give you the strength and well-being that you need to regain your health. Blessings, Gail Lap RNY - 5/24/05 - Dr. Graber, Utica, NY 275/247/134

Noelle - I guess what I was trying to get to, and wasn't clear, was to find out WHAT levels/tests your surgeon had run, and perhaps you can find out from the neurologist/endocrinologist if there are any specific blood work tests or levels on the tests that would indicate that this problem exists.. Again, not terribly helpful right now for you, but when you get the levels back to normal, it may help, and we may be able to get the rest of us to check our surgeons bloodwork list and poke them until they add the appropriate tests to make sure this problem doesn't exist. There is a lot of "denial" in the provider community, in my experience, either for "oh, none of my patients are having problems", to "well, if someone is having an issue, it must be something THEY are doing" (again, not from all providers, and not all patients either). The difference between a surgeon and God is that God doesn't think he's a surgeon.. (grin). Again, not all are like that, but most won't admit they may have made a mistake... (and that's from > 13 yrs experience is healthcare/hospital computer support). ....N