Hi!
- Thread starter moxie84
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hilary1617
First time at the rodeo.
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Thanks so much for the welcome! So in a nutshell:
I had a laparoscopic BD/DS with EGD July 2020.
Everything went great. Several weeks later I started throwing up multiple times a day. Was hospitalized and diagnosed with a small hiatal hernia but no treatment.
This continued and got worse. In Jan 2021 I had a different surgeon do an endoscopy and correct the hiatal hernia which had formed a weird sort of pouch- they also had to further narrow my esophagus.
I continued to suffer from chronic nausea, lots of vomiting and an inability to eat.
Essentially I went for about ten-eleven months eating at most an average of 100 calories a day.
In august 2021 I was hospitalized for severed malnutrition and put on a PICC line. I was in the hospital for 2 weeks then a care facility for an additional six. Things were incredibly bad- I was days/weeks away from dying. No one seems to be able to tell me what went wrong.
I’ve been back home since October 2021 and have gotten a lot better. I’m eating between 1500-2000 calories a day and am trying so hard to get my strength back.
I still face chronic diarrhea, frequent mild nausea. I’m also dealing with low blood pressure and I experience significant spikes in my pulse rate anytime I’m vertical (sitting or standing).
I’m going to physical therapy to regain strength and my vitamin levels are mostly in the normal range.
I’m happy to be alive, and happy to have lost a grand total of 234 lbs. but am still having a hard time with the lingering nausea/diarrhea, blood pressure issues and such- not to mention the mental and emotional toll of all of this.
apologies for the novel-length and thanks for listening.
If anyone has similar experiences or advice on these issues, vitamins, and increasing protein intake I’d surely appreciate it.
I had a laparoscopic BD/DS with EGD July 2020.
Everything went great. Several weeks later I started throwing up multiple times a day. Was hospitalized and diagnosed with a small hiatal hernia but no treatment.
This continued and got worse. In Jan 2021 I had a different surgeon do an endoscopy and correct the hiatal hernia which had formed a weird sort of pouch- they also had to further narrow my esophagus.
I continued to suffer from chronic nausea, lots of vomiting and an inability to eat.
Essentially I went for about ten-eleven months eating at most an average of 100 calories a day.
In august 2021 I was hospitalized for severed malnutrition and put on a PICC line. I was in the hospital for 2 weeks then a care facility for an additional six. Things were incredibly bad- I was days/weeks away from dying. No one seems to be able to tell me what went wrong.
I’ve been back home since October 2021 and have gotten a lot better. I’m eating between 1500-2000 calories a day and am trying so hard to get my strength back.
I still face chronic diarrhea, frequent mild nausea. I’m also dealing with low blood pressure and I experience significant spikes in my pulse rate anytime I’m vertical (sitting or standing).
I’m going to physical therapy to regain strength and my vitamin levels are mostly in the normal range.
I’m happy to be alive, and happy to have lost a grand total of 234 lbs. but am still having a hard time with the lingering nausea/diarrhea, blood pressure issues and such- not to mention the mental and emotional toll of all of this.
apologies for the novel-length and thanks for listening.
If anyone has similar experiences or advice on these issues, vitamins, and increasing protein intake I’d surely appreciate it.
Who in the hell was your surgeon that did such a poor job?
You need to be seen by a good qualified surgeon who can help fix all this.
You need to be seen by a good qualified surgeon who can help fix all this.
hilary1617
First time at the rodeo.
- Joined
- Jan 6, 2014
- Messages
- 3,761
I'm so sorry to hear of your surgical complications. This is heartbreaking to read. If you don't have them already, make sure you have a copy of your surgical reports and EGD results. I agree with SouthernLady that you need to be seen by a highly competent qualified surgeon.
Some questions to consider:
- Do you still have a gall bladder?
- Have you ruled out lactose intolerance? This is fairly common after DS and lactose can be found in many protein shakes.
- Was this a single anastomosis (SADI/Loop) or the full traditional DS? If the former, could this be bile reflux?
- Did the initial surgeon do anything experimental?
- Outside of the hiatal hernia, did the second surgeon note a very narrow or unusual shape of sleeve or adhesions?
I had soe similar challenges when part of my pancreas was removed due to cancer. These helped:
- CREON prescription to increase absorption (taken with Welchol/Colesevelam to minimize side effects)
- G2 to help with electrolytes
- Lactose free protein shakes (egg vs. whey or lactose-removed)
Thanks so much to you both!
The second surgeon said that he didn’t find anything wrong with the initial surgery- that it was just “a one in a million” thing. He noted that the shape/structure of the hiatal hernia was odd but that was it. I was seen months later by his partner when I was in the hospital and there was nothing they could find that should have been causing such issues.
I should have been more diligent about pursuing help and in hindsight wish I would have gone to the hospital much earlier but I was so scared and trying so hard to get better that I kept thinking I would somehow. It really spiraled out of control and I’m sure the lack of calories/malnutrition/vitamin deficiency didn’t help with my mental capacity to make choices for myself.
like I said- in terms of eating I’m doing well- I throw up very rarely and it’s usually a result of eating too much or too quickly. I’ll find out more details of my procedure in case that lends any clarity to how to best proceed.
I’ve wondered about the lactose intolerance- some dairy things don’t set well but others are fine- it all feels pretty hit or miss. Cheese is usually ok, and yogurt- but protein shakes make me feel awful. I’ll look into some lactose/whey free ones.
The second surgeon said that he didn’t find anything wrong with the initial surgery- that it was just “a one in a million” thing. He noted that the shape/structure of the hiatal hernia was odd but that was it. I was seen months later by his partner when I was in the hospital and there was nothing they could find that should have been causing such issues.
I should have been more diligent about pursuing help and in hindsight wish I would have gone to the hospital much earlier but I was so scared and trying so hard to get better that I kept thinking I would somehow. It really spiraled out of control and I’m sure the lack of calories/malnutrition/vitamin deficiency didn’t help with my mental capacity to make choices for myself.
like I said- in terms of eating I’m doing well- I throw up very rarely and it’s usually a result of eating too much or too quickly. I’ll find out more details of my procedure in case that lends any clarity to how to best proceed.
I’ve wondered about the lactose intolerance- some dairy things don’t set well but others are fine- it all feels pretty hit or miss. Cheese is usually ok, and yogurt- but protein shakes make me feel awful. I’ll look into some lactose/whey free ones.
Many of us with lactose intolerance aren’t intolerant of all dairy. I can’t drink milk or eat ice cream but I can eat all the cheese I want, I eat a yogurt daily. I never really liked shakes. I only drank them until I could manage to eat my protein. As far as protein, find one you can afford and tolerate. if not whey protein, try soy or egg white.
hilary1617
First time at the rodeo.
- Joined
- Jan 6, 2014
- Messages
- 3,761
Would you be able to try to eliminate most lactose from your diet for say, a week, and then add it back in to see if it is contributing to the GI distress?
The amount of lactose varies by product, with skim milk having tons and hard cheeses having much less. Beware skim milk powder, which is a hidden ingredient added to many processed foods.
ISS Oh Yeah! protein shakes are lactose free so might be worth a try.
The amount of lactose varies by product, with skim milk having tons and hard cheeses having much less. Beware skim milk powder, which is a hidden ingredient added to many processed foods.
ISS Oh Yeah! protein shakes are lactose free so might be worth a try.
Hello and Welcome
I'm sorry you've had such a bad start and so many complications! At least you are home, eating, and getting stronger.
keep posting, there are a lot of smart people here!
I'm sorry you've had such a bad start and so many complications! At least you are home, eating, and getting stronger.
keep posting, there are a lot of smart people here!
I’m so sorry you’ve gone through so much. I just discovered a plant based protein shake that I really like “Owyn Protein shakes with 35 grams of protein “. Hope this helps!
Spiky Bugger
Well-Known Member
- Joined
- Jan 5, 2014
- Messages
- 6,201
Hi. Welcome! So, shakes…
Many humans, DS or not…even my late BIL who was never overweight…have real GI issues with sugar alcohols. I am one of them. Essentially, any ingredient that ends in itol is going to cause me diarrhea.
And many ”healthy” shakes and protein powders are “sugar free,” meaning they use sugar alcohols to provide a sweet taste. So, for example, while everyone was raving about those healthy Jay Robb Protein Shakes/Powders, they were poison to me because they contain xylitol.
There is one sugar alcohol, erythritol, that is “different,” and “better,” and “not like the others.” Well, that’s the hype. But it, too, makes me sick.
Good luck seeking out the culprits that are making you suffer so.
Also, when you have time, I can tell you about a company that makes what, to me, is really below par meals, but cures “irritable bowel syndrome” in about three days. The Low FODMAP diet LOOKS way easier to decipher than it is. It takes quite a while to figure it all out. But it really, really works for many, many people.
But first look for those sugar alcohols!
Many humans, DS or not…even my late BIL who was never overweight…have real GI issues with sugar alcohols. I am one of them. Essentially, any ingredient that ends in itol is going to cause me diarrhea.
And many ”healthy” shakes and protein powders are “sugar free,” meaning they use sugar alcohols to provide a sweet taste. So, for example, while everyone was raving about those healthy Jay Robb Protein Shakes/Powders, they were poison to me because they contain xylitol.
There is one sugar alcohol, erythritol, that is “different,” and “better,” and “not like the others.” Well, that’s the hype. But it, too, makes me sick.
Good luck seeking out the culprits that are making you suffer so.
Also, when you have time, I can tell you about a company that makes what, to me, is really below par meals, but cures “irritable bowel syndrome” in about three days. The Low FODMAP diet LOOKS way easier to decipher than it is. It takes quite a while to figure it all out. But it really, really works for many, many people.
But first look for those sugar alcohols!
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