Im an old timer here! Back with issues

Well, I'm Allie from the Dallas area in Texas. I haven't been on OH in quite some time! I actually lost my previous login so i had to make a new account.

SO much has happened since last i was here. To back track, i had problems with my Roux en Y I had in April 2007 starting at 6 weeks out. It was a never ending nightmare of not being able to eat or drink without horrible pain and dealing with malnutrition and PICC lines and TPN and constant hospitalizations. That went on for 6 1/2 years.

Then i had a year that was actually good. I could eat and was keeping on weight. I had gone from 450 to 170 in around that first year,but then I started actually gaining some. Then came October of 2014. I started vomiting. It started at about 50% of what I ate to almost 2 years later it was virtually almost everything I ate. In August of 2016, I finally got some nutritional support via a J tube. But the tubing community was going through somewhat of a crisis with a mandatory change in connectors to a tube that hadnt even come out yet...so we were all left with adapters that didnt always connect with our devices...at least not mine for sure. I then went through 4 J tube changes in as many months...which then led me to not even be able to tolerate my feeds at all anymore. That led me to having to be put on a PICC line and TPN in January 2017.

I finally got referred to a world renowned surgeon for doing revisions, Dr David Provost. He proposed a radical reconstruction of my Roux en Y. He performed an endoscopy and found my initial pouch was made too big. It was skewing for some reason and basically closing itself off which was why i was throwing up so often. He performed the surgery for reconstruction on March 20, 2017. He removed my useless J tube at that time. He turned my 120cc pouch into a 5cc pouch. It was discovered at the time of surgery that my pouch had grown into my remnant stomach, which he had to detach...but that was something we never saw in any imaging or upper GI series or anything. After surgery, I then could finally hold down food. I kept the PICC line in for an additional 5 weeks and it then came out when i was allowed to start eating solids. I was excited by the prospect that I could finally eat like a normal human being again! While to this day I can still eat, I have to eat every 2-3 hours literally...like as much as I can...because Ive been malabsorbing so badly, im losing weight at quite a pace.

Ive dropped 50 pounds since November and have quite a few severe nutrient deficiencies, despite taking 4 times the daily amount of required vitamins for an adult. I also am fat malabsorbing which has been observed in the hospital in my stool. No one has a clue as to why this is happening other than maybe my newest pouch was made to small. Im again left in a position of having no idea whats wrong with my body, no way to fix it even with my best efforts, and not getting any answers from the people i should or getting the nutritional support that i obviously require again.

This is such a frustrating situation. I deal with the effects of being chronically malnourished for literally almost the whole 11 years since ive have my WLS. I have left sided heart failure that gets gradually worse as the malnutrition persists. I wonder if things were done wrong in one or all my surgeries and i have no clue where to turn for help now. I dont want to die from the aftermath of WLS and WLS reconstruction....but i dont know that my body has any reserves left to it....and its super scary.

I guess i just wanted to tell this community that id been a part of for years in the past my story, and seek support that i havent received since last i was here.. from people that have been through it or similar...that may understand the struggle I still deal with. And not knowing whats ahead of me is scary...and i know i cant do it alone anymore with no support.

Thank you for reading my story and offering any support you can ?

WOW, bless your heart you have been through the ringer and it's still happening. We are glad you are back but not under these cir****tances. If you PM me your email address associated with the old account I can get you access if you like?

Be sure and post this on your surgery type forum, RNY to reach out to those that had the same surgery as you. Someone may have experience the same issues as you and be able to help

Regards,

Kathy

Member Services

Allie,

your story is heartbreaking to read. I am so sorry for all you have been through. I wish I had an answer to offer help. Keep coming here for support we all care about you.

I will add you to my prayers that the doctors find a remedy for your problems and. that you start absorbing better now that you can eat better.

Megan

Oh wow! You have really been through it. Hoping you get some answers soon.

I'm so sorry Allie. The fact that you've struggled so much and they haven't been able to correct it is just terrible. I hope you get the help you need and are able to heal.

Allie, I'm so sorry! But I'm glad you reached out here.

Although I'm "only" a sleeved WLS person (was sleeved in 2014****rtainly send you my strong wishes and any good vibes you can receive in dealing with all this stuff.

I think it would certainly help you feel connected just to participate here in general. I also hope others here with RnY experience and more years under their belts can offer you some insights that prove useful to you.

Welcome back!

I am sorry that this has been such a difficult journey. Have you tried working with a clinical nutritionist or a functional MD who might take a different approach than the conventional medicine doctors take? Since there are many diseases that lead to wasting, I would think that you are in a similar situation and could benefit from whatever therapies they do to enhance their nutrition and absorption.

I would suggest focusing on super foods and other very nutrient dense foods... you can add flavored Xtend BCAAs and flavorless Zint collagen and Now Foods gelatin to your beverages to up the protein. Also talk to your HCP about green juices and bone broth.

It might also be a good strategy to do a healthy keto diet so that you are burning fat for fuel (not that you probably have much of that) instead of your body digesting the protein in your organs and muscle for fuel. That is a problem that I've always had when I am losing weight.

I am praying for your health.

I am so sorry to hear about your problems. I have no answers, just my support and prayers. It sounds like you have done everything you can to find help.

Just don't give up trying to find the answers. They are out there, you just need to keep searching. Have faith that you will get better. I am hoping that someone here has some direction for you.

Good luck and good health to you. You have been through a lot and you deserve a break.

What an ordeal! I sure hope you can get the current issues addressed. You didn't say what kind of vitamin supplements you are taking (and I know that some deficiencies, like protein, cannot easily be fixed with supplements) but I am wondering if you have considered vitamin patches?

I had my original RNY in 2007, and about 4 years later, despite increasing my calcium to 2500 mg/day, my calcium levels were still low and my DEXA scans were showing some bone loss. I was sick of taking pills 6-7 times a day (since the calcium has to be in 500mg doses) so I decided to try the vitamin latches that were fairly new at the time. My calcium levels are now higher with a much lower dose of calcium than they were with pills. Several friends who have had RNY or DS have also found that they absorb the vitamins from the patches better than with their bypassed intestines. Just something I thought might help...

Lora