Old newbie

[Andrea C]

Hello All!
Im Andrea. I am 15 years post op but this is my first time on a WLS site. Looking for some ideas and motivation to get back on track with my health. I had a WONDERFUL decade after surgery but the last few years have brought some challenges healthwise. I will search the site and hopefully run into some of you in threads.

 

[DSRIGGS]

Hello @Andrea C.

Welcome. Can you share your surgical details, like are you a DS or RnY post op? Where you were weight or bmi pre sugery, how low did you get and where are you now? How is your health in general and you say you are looking for ideas to get back on track I asume you want to shed a few pounds you may have regained, etc?

This place is a wealth of knowledge and has been great help to me. I have learned a great deal from just about everyone here and especially from vets who blazed the trail for many of us and gave us great advice not offered by most surgeon offices.

I am just about 3 years post virgin DS but last August I had revision to extend my Alimentary Limb due to bad malnutrition. Dr Keshishian performed the revision.. He did a great job but I had two major hernia repairs in the last 60 days and it kind of has my body in a funk right now.

Anyway that is my story. We have a lot of people here ranging from somebody who just had her DS today to people 10 plus years post DS. There are people who had a band and were revised to a ds, there are many RnY to DS revisions, there are VSG folks, there are virgin DS, there are a few SADI people and there are some RnY patients. That being said most of us who actively post are now DS patients either virgin or some revision. All bariatric surgery patients are welcome but that is kind of the state of things here.

Glad you found us and i hope to learn from you and hopefully we can help you as well.

 

[duh_Mom]

Hi Andrea C and welcome to the site! I look forward to hearing your journey and learning from you. I am a lapband to DS revision of about a year. I alway suggest using the bookmark feature when you read something you think you might like to remember. Makes finding it again a lot easier! Glad you are here!

 

[southernlady]

Welcome @Andrea C Glad you found us.

Can you share your surgical details, like are you a DS or RnY post op?

Scott, if you hover on her name, she has her surgery type, date, and surgeon listed. She's a DSer.

 

[Andrea C]

Thanks for the welcome all! I have not regained weight. (Btw, i started at 250+ and went down to 135-140.) since I had my children i have lost more weight and been as low as 115. My daughter was born in November 2008 and i unexpectedly became pregnant with twins 3 months later while still breastfeeding. Only you all can truly understand the impact that has had on my body. My twins were premies and the nicu staff begged me to try to nurse for as long as I could. A month later my teeth started to rot and break. I stopped nursing but the damage was done. I had severe fatigue which was dismissed because I had 3 infants. I knew there was more to it. Finally was diagnosed with narcolepsy 2 years ago. I have also been diagnosed with BADAS ( autoimmune response to the blind pouch possibly leaking bacteria. ) For those of you who don't know (I never knew myself) Narcolepsy is now considered an autoimmune disease, specifically in cases like mine with an age of onset outside the norm. Sleep doc thinks whatever funk came from the pouch causing the BADAS may have been the trigger for the narcolepsy too. BADAS can be treated through medicine but will likely keep recurring unless i have a revision or maintain a seriously strict diet for gut health. Narcolepsy will not be cured. Once your hypocretin has been destroyed, there's no way to get it back. I will post pictures of my skin lesions from BADAS since they are quite different from what I saw posted on this site. (FYI, my diagnosis of BADAS was confirmed via biopsy showing neutriphilic dermatosis of the lesions. I also started seeing Dr. Jorizzo at weil Cornell in nyc. He is the doctor that coined the phrase BADAS, although the syndrome has been documented for many years under various names.)

Admin note...deleted the duplicate photos out of the post.

 

[southernlady]

A month later my teeth started to rot and break. I stopped nursing but the damage was done. I had severe fatigue which was dismissed because I had 3 infants. I

Have you had lab work in the last month? That is where I would start. If you have post your results in the Vitamins & Labs board and see if we can help. If you haven't gotten a recent set of labs, use the DS lab slip found in that forum and get them pulled ASAP. Several things can cause fatigue (not including 3 infants) that ARE vitamin related...low ferritin is top of my suspicion list.

 

[KathrynK]

Oh, Andrea, so sorry for what you are going through! The lesions look so painful. I am more than a decade out and i believe there is a need to develop a registry of conditions that occur over the lifetime of post-op years. We are pioneers who plunged into a new surgery without a full understanding of what could happen 10, 20, 30 years out. Can you tell us a little about how you have been monitored over time for vitamin deficiencies related to surgery? Glad you have such a good doc at Cornell! Does he have a theory about the risk factors for this condition, common channel length or surgical variation or something else? Despite the high price you have paid for having this surgery, congratulations on the three babes, they must be in elementary school by now. Being a parent with narcolepsy must be incredibly challenging!

 

[southernlady]

You might also want to get Dr. Pomp at Weill Cornell involved. He did my husband's DS almost 6 years ago and is a known veteran DS surgeon altho in recent years, he's gone to the VSG as his primary surgery.

 

[Larra]

Hi and welcome! I'm so sorry you are going through all these problems. I think the recommendations above regarding current and full labs and consulting Dr. Pomp are great ideas.
Also, keep in mind that you don't have a blind pouch with the DS. You do have a BP limb that isn't in use, except as a conduit for bile, but that's not the same as a blind pouch that folks with gastric bypass have, and also not a blind loop. I hope you are able to get some help for the skin condition and other problems.

 

[DSRIGGS]

Welcome @Andrea C Glad you found us.


Scott, if you hover on her name, she has her surgery type, date, and surgeon listed. She's a DSer.

I was on my phone in bed when posting that so I can't do that on my phone.

 

[bearmom]

Welcome!

Hopefully some of the smarties around here can steer you toward some help for your issues.

I haven't heard of "badas", but was wondering if it's something like SIBO or blind loop syndrome? I'm optimistic that if you post lab values and what supplements you take some of the peeps here will have some insight.