Hello, Can We Talk?! Long But Informative

First please allow me to introduce myself! My name is Carla I, like probably many of you, am a WLS Vet and a member that's been away from the board for far too long and I regret having weight loss surgery to this very day PERIOD.

I had Lap RNY July 21, 2008. I was "promised the world" by my medical team and it really looked like things were going to be better. I had surgery on the 21st, I was up walking by that afternoon, my surgeon told me he was impressed and dismissed me the next morning. But, somewhere in the first 2 post-op years life began a u-turn and things went WRONG. Let me clarify what I mean when I say that I was "promised the world", you'll live a longer, happier, healthier life. Of course that's what all of us wanted and some of us may have even been overachievers as I was and it looked like I was home free but just as I was coming around to third base life threw me a curve ball that blacked my eye and put a knot on my head; when that ball hit me it had such an impact that I also fell and skinned up both knees and even broke some fingers. I made it to third base alright.....I fell face first right on the base. I've gotten up may times but it's unfortunate that I can't seem to be able to leave third base. Stuck in the middle!!!

Now that most of the sarcasm is out of my system I'll move on with the story.

I had a dedicated exercise routine every morning, the only things that stopped me from walking were rain and snow. I even walked in the heat 3 or more miles every morning. The weekends were for 5 and 10 miles it depended on how I felt. My doctors felt that there was a problem with my continued rapid weight loss and asked me to not exercise so much...ha! They soon found out that IBS was the real culprit. I was diagnosed in the earlier months of 2009; at times I couldn't eat and there were days I was barely able to even drink water so the weight loss overdrive part was figured out. By now, it's mid 2009 and I awoke one morning with the rain hitting the roof and widespread pain hitting me all over; I believe the pain in my spine was the worst. I was x-rayed and found to have degenerative disc disease. From that I was prescribed pain pills that were a giant turn off because I refused to be a zombie so those stayed at the drug store. I was then sent to a rheumatologist who further diagnosed me as having Fibromyalgia. During this time I also began to notice that my fingers and toes would get cold but I never really paid attention to that problem until I came out of the grocery store one day. I looked at my fingers and thought I had somehow gotten blue ink on them. My self imposed question was,but from what?! I then realized that after I warmed them the "blue ink" went away. I asked my rheumy about it and he simply said Oh, that's Raynaud's Phenomenon and gave me some much appreciated literature. I thought that was the end of it all and I was determined to find a way to cope.

In 2010 I began to have episodes where my heart felt like it was doing jumping jacks, I would tremor, and sweat, and get light headed. I informed my PCP and other medical professionals and walah.....reactive hypoglycemia. Everybody wanted to tell me what to eat, how often to eat it, and when to eat it. That was a laugh within itself. This was a situation where one direction DID NOT fit all, especially me. I tolerated those detrimental instructions until I went out for a 3 miler on a nice, warm day in May 2012 and blacked out. I was barely comprehensive only because I was on the phone with my mother and it was her voice that kept me from totally going to sleep. I still can't remember most of the events that lead up to that episode but I do remember a friend whom I was waiting on assisting me to their car and getting me home. It took 2 days to recover from that fall. Oh it left me with a black, swollen eye, a skinned up chin, and a knee that still gives me trouble but it didn't stop me from walking; I continued to get in the occasional 3 or 4 mile walks when I could especially on the weekends; it didn't matter that it gradually felt like pins and needles were sticking me when I walked as my body temperature rose. I just didn't even care about my fingers swelling to the point of feeling as if they were going to burst I continued on my dedicated walks. I mean why not?! I had slowly weaned my body away from relying on carbs as it's source of fuel and I'm back to mostly protein, low carb vegetables and berries, only when tolerable and my weight has stabilized at around 187 pounds from initially 400+ pounds. I've learned a lot about myself and I've learned that grains, most dairy, fats, nuts, beans, legumes, breads, crackers, sweeteners, most all other fruits and yeast is NOT on my menu and I don't ever settle even if I am hungry and I'm out of the house. I'll sip on a bottle of water before I give in to convenience that I'll have to pay for afterwards.

Well, that just about does it for me and why I regret having weight loss surgery.

Wait!!! It's 2013 and all of those uncomfortable, gradual, changes were leading up to Erythromelalgia.

No doubt these illnesses may have been recessive and weight loss just gave them the spiked shoe to kick me in the rear. I often voice my opinion that I wish I'd never had the surgery. I wouldn't be alive but I wouldn't be in this position either. Nope....no dependents or significant other to have to worry about leaving behind, and my family, they just need to get over the idea that I'm still their crutch and do things and live life for themselves. I have no more hopes in medical science and I often pray that one night I'll lay down and go to sleep and continue sleeping. Morbid but true. I DO believe in God and have heard the questions.."do you believe in God, do you pray, are you a Christian?!" What is this?! Are Christian's not allowed to express their carnal emotions?! Besides, I always say that I PRAY, I wonder if the word "pray" is the give away word that I'm a non-believer?! (sarcasm)

Thank you for reading this post even if you have no input, thank you anyway!

My heart goes out to you.
Take care
StrawWalker

Thank you! I am currently looking for research studies and clinical trials to get involved in. It would be nice to leave a legacy that I helped others in more than one way. So that's where I am now. There's nothing left so it may be my destiny.

 

Thank you again for your reply, many have read but none have replied...until you. Congratulations on your weight loss by the way!

I hate to tell you but you may be dealing with one more thing - adrenal insufficiency. That may cause some of the symptoms you have. It require a good endo that is familiar with that and willing to help and test you. I don't have time now - but if you are interested I can share some of my issues. Since I was put on cortisone replacement protocol - I feel better and some of my issues are resolving.

Thank you for your reply! I have been to two Endocrinologists and have been tested inside and out, for possible problems with thyroid and pituitary and anything else that may be the cause of the things that I'm dealing with. Thank God I don't have any thyroid or pituitary issues or any other things that are the cause of the current problems. Trust me these were very good Endocrinologists, one worked primarily with bariatric patients and the other is well known for being able to find things that other doctors may have missed or overlooked. I was put through the ringer twice with all day testing and labs and am certainly not interested in doing those things any more. I'm not one to rule out that most if not all of my illnesses were perhaps genetically recessive and became dominant with significant weight loss. I have talked things over with my PCP and she knows I no longer wish to be poked and prodded on as if I were a piece of meat, even if something else inevitable should be found and diagnosed I'm not interested in sticking around in this cold, cruel, world any longer BUT I'm not going to hasten my expiration either, that's God's job not mine, I just plan to play life down naturally while learning new coping skills.Thank you again for sharing! 

ouch... I am so sorry to hear that.  I can relate. I had a few moments myself over last few months..  

I know it sucks.  And when they told me that my pain is due to constipation.. but dealing with so many things - I knew there was more stuff.  I just had surgery and so far I can eat. Not much and only some foods, but with the cortisone replacement and with the surgery I just had - I see some light... 

I still need to make sure that the dark spots in my pancreas is not a cancer but a cysts.. (6 month follow up MRI next week) But all the indications are that it nothing major. 

Best wishes and hugs... 

something we are dealt more that we wish. 

My saying is :  

"God does not give me anything he does not think I can handle, but I wish he did not believe as much in my ability to handle what he gives me...." 

I'm happy to know you are doing better and feeling better and I wish you a very happy life. They were also looking for the non benign tumor that causes bariatric patients to release too much insulin but found nothing. So, I suppose these are my cards and I'll just have to play the hand I've been dealt! 

You have been very helpful and thorough and I appreciate you taking the time to even allow me to know such information. Thank you again and if I should happen to have any other questions or anything I'll more than likely send you a message. Take care!

 

Carla 

I do have SAI - secondary (or central) adrenal insufficiency.   My pituitary do not make enough hormones to stimulate the rest of the glands.  

That explain some of my low BS - hypoglycemia, severe RH, and overall feeling tired.   The solution: hormones supplementation - so to all the vits and herbs - I need to add 1-2 -3-4 times a day (as needed) hydrocortisone. Too much makes me *****y, not enough make me very tired, with possible low BS and low BP.  Now it is clear why I had a such a hard time dealing with major stress at times, and every time I deal with a lot of stress (good or bad) I literally I felt like I could not face the world, and got ill. 

Most likely I had that issue before RNY and as I am getting older - it only gets worse. Most likely the very strict - starvation mode I was under early on after RNY contributed to worsening the condition of my pituitary glands.    

I already found a support groups for that kind of condition and I am trying to learn how to deal with that day to day. 

I do hope that with the supplements I will be finally able to get back to exercise, and be more active.  But one thing at time. 

My last surgery too a year from my life - and during the same time - I developed a severe menopause symptoms. (very typical for SAI) 

I started the hormones a month ago, and I can see a huge difference.  So far my weight is the same - but I may see some gain initially, due to minerals balance (SAI can cause sodium deficiency) and water gain - but that would stabilize my BP.  (so far no weight gain - and that indicates good - not to much supplementation) 

 

Note: 10 days weeks ago I had a abdominal lap surgery to try to fix my belly pain after eating. The recovery from surgery was a blast. So far so good. I can eat normal food (normal for me - before the pain started - like meats and veggies) and I am doing better than I expected to be doing. 

On one month on hormonal supplements - I feel like a newer person.  My depression is lifting... and I feel so much better.   My BP is normal, I no longer has postural hypotension, or low blood sugar if I don't eat.  In the past - I had to give up exercise because even yard work may caused my BS to drop too low. At the time of the testing - I only left low BS when it would drop below 40. Now I know when my sugar is getting low when it is in 60's...(I still get RH when I eat too much sugar - carbs - o well..)  . 

Some people with low cortisone - develop Fibromyalgia... allergies, low blood sugars, low blood pressure, etc.  

You may try to look into that,,,, 

It took me 9 moths to be able to see a endo who is great and deals with that.  That was worth waiting for. Not all docs see that as issue.  

check that site - someone who is dealing with a lot of issues collected some of the stu

http://www.mdjunction.com/adrenal-insufficiency

http://bob3bob3.mywebcommunity.org

 

 

 

 

I also have been dealing with multiple health problems since my surgery in 2009. I lost weight and felt like doodoo...even tho most of the health issues I had prior to surgery were gone, many more came to replace them. I am at the same place you seem to be, wishing I weren't in constant agony, often wishing for a "dirt nap".  It's as if after a while the medical community decided I was too difficult a case and wrote me off...nothing for pain, no response to my pleas for home health or some type of assistance at home (it is at a point where I am not able to dress myself etc). Where can we go from here? I pray often and it has made a difference, but the question remains why does this happen? Is there a corelation to the WLS? Who can we turn to when drs give up on us? 

Thank you for taking the time to reply. I DO know how you feel and I even have the same mindset. My current PCP HAS given up on me despite the fact that it was her idea to "save my life" but my choice to follow through. I have often said that if I ever have the chance to choose between life and death again I'm taking death. I'm sorry to hear about your situation. but it's as though we've become invisible and yet still seen as a medical mystery.

I had a recent visit with my PCP and I told her how I felt, especially before surgery when I would get so sick and testing showed nothing to be wrong and she became content. I told her that for all of these years I was forced to feel like all of my illnesses were in my head, psychosomatic, and she confessed then that I am actually sick. In my head I was yelling at her--WHY DIDN'T YOU SAY THIS TO BEGIN WITH INSTEAD OF MAKING ME FEEL LIKE ALL OF MY ILLNESSES WERE PRIMARILY OBESITY RELATED OR ALL IN MY HEAD. I still fight with the medical community and I know I'll probably never win but as long as I'm still living I'll continue to rant and rave and anything else to get my point across about how I was neglected as an obese patient and now as a post-op bariatric patient.

I have been looking for clinical trials and things of that nature with very little success. My recent labs show that now my kidneys are beginning to slow down. I'm not frightened or too concerned with it because I'm tired. I feel as though I'm practically useless now as a living being, weight loss surgery may have given me a longer life but it sneakily robbed me of my short lived livelihood, something I was promised and wasn't given permanently.

I spoke to a Social Security Administration judge and was told that I had basically traded one set of health problems for another. That's shrewd and heartbreaking; I had so many dreams...so many that will never be carried out as I had hoped. People like you and I have God and each other, that's about it. I will continue to pray for you and myself perhaps God will one day have more mercy on us. 

Take care!