Am I The Only One Percent?

[ChreeMiriah 11]

This surgey was not something I took lightly. I prayed about it and prepared for 8 months before I got the call for Dec 19, 2022. I made this decision purely for my health as I’m sure most of you did as well. I was starting to have heart problems and my knees would hurt as I walked down the stairs. I was told it would be life changing and when it came to the weight loss it has been, but the complications that have bombarded me has me questioning if it was worth it. I don’t want to scare anyone off, because ninety-nine percent get through their gastric sleeve and adapt after the initial healing, but I have always been the one percent. You see I was the one percent with my pain management as well because I took steroid shots to my back after giving birth to my daughter. This went on for 10 years and then I developed adrenal insufficiency because my body became dependent on the hormone. It could no longer produce its own cortisol so I was then on the precipice of dying if I didn’t start a steroid regimen immediately among my diagnosis. I literally was down to that one percent of cortisol in my body. For five years I suffered unimaginable low energy, adrenal crisis when my body was to stressed, countless hospital visits and of course massive weight gain from cushions disease. I thought nothing would ever be as bad as that time in my life when I finally recovered after those five years and stopped my steroids. But the damage was done and I was severely obese at my heaviest of 270 and on top of that my thyroid suffered in the process so I could never get the weight off. Thats what led me to the only solution my doctor had and the realization that their are things worse than Addisons disease, at least for me. Since my surgery I have not been able to keep any food down. I have had to be admitted to the hospital for days on end where I would go back to the liquid diets. A few weeks ago I had a little tuna and my body rejected it with a fury sending me to the hospital for five days where I had two emergency surgeries. The doctor couldn’t believe what he was seeing on my mri. Somehow so much scar tissue has devolved that it was causing my sleeve to be pulled by my gallbladder and they were attached so we thought that was the reason I couldn’t keep any food down. After I came out of that surgery I felt relief and I wanted to cry because another thing I forgot to mention is that I had been nauseous 24/7 since my sleeve surgery, but for those five hours after waking up from the anesthesia and pain meds I felt normal. The nausea was gone. But the next day it was back with a vengeance and more imaging found that my gallbladder was infected and had to come out immediately. So under I went for the 3rd time in 6 months reentering the same wounds that still hadn’t healed. And again for a while I wanted to cry out that it’s a miracle, it’s all better, but as soon as all the meds wore off I was right back were I started. I also had to have a drain put in because their had been blood pooling around my sleeve since the first surgery. All they could do was prescribe me 3 medications to control the vomiting. I lost 7 pounds during that hospital stay. When I got home after being on a liquid diet for a few more days I slowly eased into the soft foods, but to this day after every meal or healthy snack I make my way to that porcelain hell were I retch until the nausea calms. I then take my nausea medications and Valium to relax my stomach muscles. It usually takes about three hours and then I do it all again because I’m only eating twice a day to avoid being sick morning, noon, and night. The only thing that has changed is the constant nausea, it’s now only after I eat something. I’m literally living off of soft cheese and fruit, but more than a few bites and all hell breaks loose. I can tell how malnourished I am because my hair is falling out in clumps and my skin is dry. I’m drinking as much liquid as I can, but dehydration is always around the corner. My doctor says I’m loosing more weight than he anticipated so I always thought hearing those words would bring me joy, but I’m so depressed and have no energy for my family so I have to ask myself daily was it worth it? Will it get better with more time? Again, I don’t want to scare anyone because their are more good stories on here than bad. I simply want to share my story because there is no other like it and that scares me. My daughter is always asking if I could die, she did this when I was sick with addisons too? I tell her if things get better before I reach my healthy weight of 130 then I’ll be ok because right now even though i’m not getting the calories I need my body still has enough fat storage to feed off of, but at the rate I’m loosing- a pound every other day, I will be severely malnourished if it gets to that point. Most people say the surgery is a blessing, but for me it may still be, but a blessing in disguise. I have spoken with my doctor and he doesn’t have the answers. I have scoured medical journals and comment boards also with no answers. If there is anyone on here that is going through the same thing please reach out and if you prefer to talk in private my email is marsgirl22@gmail.com. I know this was truly a long post, but my journey has been just as long and I hope that my story can help someone else to get the answers that seem to allude me. Oh and just for clarification of how rapidly I am losing I started at 260 pounds two weeks before my surgery and now I am 175 pounds and counting down. Bless you all for taking the time to read my story and I sincerely hope you want hesitate to help me if you can.

Edited May 27, 2023 by ChreeMiriah

[hills&valleys 130]

I am so sorry. To feel so bad without answers is disheartening and scary. I can imagine the fusing of your stomach sleeve and gall bladder could cause severe constriction and complications.

It sounds like your gall bladder surgery was recent. Your body is still healing from the repeated surgical assaults over the past six months and your sleeve needs "rest and relaxation" from being stretched and contorted from the stress and contortion of being stretched by the gall bladder fusion.

Be gentle with yourself. I hope things start improving for you. Please keep us posted on your progress. **Hugs**

[ChreeMiriah 11]

@hills&valleys Thank you so much for your encouragement and kind words. Hugs back.

[summerseeker 2,138]

I wish I could hug you, You are having it hard. If you are in the top 1% then maybe I make the 10% club. I had nausea quite bad for the first 8 months. I felt the same as when I was pregnant. I don't think it is / was as bad as you are suffering. I could eat tiny slivers of cheese. I could eat deli meat in tiny bits and Jerky. I could eat Melba toast with soft cream cheese on it. I could also manage milk and Peanut Butter. So this is what I lived on. I never made my Protein or even the liquid requirement. I never was able to take my Calcium tablet. I survived but I was so lacking energy. My family were worried about me. There are still foods that revolt me like eggs, hummus and fish. I still eat a lot of dairy. I have no room for carbs.

Slowly I began to eat a little more and then the nausea became less and less. I have a huge restriction, I can only eat 50 grams of meat. I eat 4 small meals a day, down from 5. I can not eat late at night because of severe GERD, waking with acid in your lungs is nasty. I can drink big gulps now which is a blessing.

Just continue to eat what you can, when you can. Forget low calorie, try a big variety, some of it you might be able to keep down. Don't give up

[ChreeMiriah 11]

6 hours ago, summerseeker said:

I wish I could hug you, You are having it hard. If you are in the top 1% then maybe I make the 10% club. I had nausea quite bad for the first 8 months. I felt the same as when I was pregnant. I don't think it is / was as bad as you are suffering. I could eat tiny slivers of cheese. I could eat deli meat in tiny bits and Jerky. I could eat Melba toast with soft cream cheese on it. I could also manage milk and Peanut Butter. So this is what I lived on. I never made my Protein or even the liquid requirement. I never was able to take my Calcium tablet. I survived but I was so lacking energy. My family were worried about me. There are still foods that revolt me like eggs, hummus and fish. I still eat a lot of dairy. I have no room for carbs.

Slowly I began to eat a little more and then the nausea became less and less. I have a huge restriction, I can only eat 50 grams of meat. I eat 4 small meals a day, down from 5. I can not eat late at night because of severe GERD, waking with acid in your lungs is nasty. I can drink big gulps now which is a blessing.

Just continue to eat what you can, when you can. Forget low calorie, try a big variety, some of it you might be able to keep down. Don't give up

@summerseeker This does sound a lot like me, except nothing stays down. You have given me some ideas on things to try and I’m the same with eggs, I think they are forever gone which is a shame because my grandma use to make the best runny eggs. Thank you for the inspiring words of hope that it may get better. Hugs my friend and I do hope your life is much better now.

[ChreeMiriah 11]

9 hours ago, hills&valleys said:

I am so sorry. To feel so bad without answers is disheartening and scary. I can imagine the fusing of your stomach sleeve and gall bladder could cause severe constriction and complications.

It sounds like your gall bladder surgery was recent. Your body is still healing from the repeated surgical assaults over the past six months and your sleeve needs "rest and relaxation" from being stretched and contorted from the stress and contortion of being stretched by the gall bladder fusion.

Be gentle with yourself. I hope things start improving for you. Please keep us posted on your progress. **Hugs**

@hills&valleys Thank you so much for your encouragementand and kind words. Hugs back.

[Amanda’s new life 1]

I have no advice. I just wanted to thank you for sharing your story and to wish you the best of luck. Praying you feel better soon!

[SuperGuuurl 14]

Hey ChreeMiriah

Thank you so much for sharing your story…I’ve just posted my own experience with the mini gastric bypass I did back in February. It’s not at all what you are going through but it’s also a story of suffering with food intake and the fact that nothing stays inside. I don’t really vomit, i just gag for minutes and “throw up” saliva. However I do have diarrhoea every single morning until I feel my insides are dried out completely. To say this is an ordeal is an understatement. I’m completely at a loss and I wish I could help you out but I need the same help! Thank God for these forums… I’m here if you want to talk…

[Born in Missouri 1,264]

I, too, read your entire post. Never apologize for too many words or thoughts. We get it. Like some of the others, I wish I had something comforting to say that would be of benefit to you. All I can offer is my empathy for your struggle. I have a sparkly magic wand, but it no longer works. I got cheated by those stupid Dollar Store people!

[ChreeMiriah 11]

After being back in the ICU for 5 days we finally discovered what the issue was. The 3 surgeries had caused my cortisol to drop severely low and I had been in remission of adrenal insufficiency for 2 years. They pumped me full of steroids and now I’m on 100 mg a day feeling better. They discovered my stomach was twisted and they need to widen the sleeve mouth so I will be undergoing 4 dilations so I can keep down my food. I want to point out that I have read some medical journals that say adrenal insufficiency is a very rare side effect of Bariatric surgery so if you have had a history of your cortisol dropping please be cautious. On to some good news, My doc says I am 2 points away from a heathy bmi of 25 so maybe in the end it was all worth it. I want to thank all of you who read my story and offered your solutions and support when I felt like their was no hope. I will come back and post what happens after each dilation. If you are continuing to struggle don’t give up and be your own advocate by doing your own research. Hang in there everyone.

[ChreeMiriah 11]

@SuperGuuurl Thank you my friend for taking the time to read my story. I too hope you find answers and am here to listen.

[ChreeMiriah 11]

@Misssouri-Lee’s Summit Thank you kindly friend, this brought a smile to my face.

[Bariiime 15]

This is crazy!!! This is me except gallbladder removal- my scar tissue was attached to my live... and I haven't had rapid weight lost but everything else os me exactly what I've been going through since January. 😕

[SuperGuuurl 14]

On 6/15/2023 at 7:59 PM, ChreeMiriah said:

After being back in the ICU for 5 days we finally discovered what the issue was. The 3 surgeries had caused my cortisol to drop severely low and I had been in remission of adrenal insufficiency for 2 years. They pumped me full of steroids and now I’m on 100 mg a day feeling better. They discovered my stomach was twisted and they need to widen the sleeve mouth so I will be undergoing 4 dilations so I can keep down my food. I want to point out that I have read some medical journals that say adrenal insufficiency is a very rare side effect of Bariatric surgery so if you have had a history of your cortisol dropping please be cautious. On to some good news, My doc says I am 2 points away from a heathy bmi of 25 so maybe in the end it was all worth it. I want to thank all of you who read my story and offered your solutions and support when I felt like their was no hope. I will come back and post what happens after each dilation. If you are continuing to struggle don’t give up and be your own advocate by doing your own research. Hang in there everyone.

Thank you so much for sharing your story!