New here. 5 weeks out and I can't take it anymore

[Raqandro]

Hello everyone.
Since day 1 I have had severe nausea. By 2 weeks it was accompanied with chest pain, debilitating fatigue and complete inability to eat or drink. Last week I was admitted from the ER and in the hospital for 6 days, completely NPO with suspected pancreatitis due to high lipase and a sludge filled gall bladder. Scan, ultrasound, esophogram, blood work, etc. Esophagitits was suspected

Finally got sent home on a PICC line bc I just couldn't stay there anymore. I'm on a myriad of meds and fluids. Has an EGD yesterday revealing gastritis, an angry looking suture line and very slight narrowing that was dilated.
Today, I decided I must eat. I cannot stand for more than a minute . Sick sick sick all day.

I have a 3.5 year old and 2 year old. I am missing out on their lives. I just want to rewind 6 weeks and NOT have this surgery. I cannot handle this anymore and there's no end in sight.

I'm on the max protonix, zofran, reglan (which I try to limit bc it knocks me out), carafate, 2000 MLS fluids, was on fluconazole in case it was candida esophagitits.

When I say severe nausea, I mean a tablespoon of broth or half a popcicle makes me sick. I'm taking all my meds through my PICC line except carafate.

I'm trying to stay strong mentally, but I'm starting to deteriorate.

Thanks for reading.

 

[Cantstalkthis]

Wow! I'm 4 weeks out and thought that I was having a bad time.
My surgeon took out the gallbladder when he did the DS because they apparently cause problems with most DS patients. It's possible that your surgeon may need to take it out and that will resolve at least some of your problems.

I'm not sure what an EGD would show on me, I doubt that my suture line is healed up nicely (even my incisions on the surface are still red and healing) but it seems like your surgeon would know whether that's the norm or not.

Also, I dealt with really bad nausea on Tuesday and it occurred to me that since I'm so early post-op I could have been pregnant but my HCG would have been too low to detect when they tested before surgery. I know that you've been in and out of the hospital but sometimes they just don't consider it - have you had a blood HCG test? My sister had the really bad morning sickness that landed her in the hospital for a stint - I can't remember the name of it but she couldn't tolerate anything by mouth.

I know that it's hard with little kids but I work in the field (long story but I have childhood development education) and they are FINE. Children are self-centered and learning about the world around them. Let them have all of the pots and pans out of the kitchen to make a big mess in the living room floor. Let them skip a bath unless they're actually dirty (Americans bathe too often). Let yourself off of the hook. They aren't going to remember this in a few years and when they do, they aren't going to see the world the way that you see it. When mine was that age I was often sick and just migrated from laying in bed to laying on the couch when it was time for her to be up and around. I had a crisper drawer in the bottom of the fridge filled with pre-packaged (by me in baggies or from the store) snacks and juice boxes and little bottles of water. The bottom drawer in the kitchen was cleaned out and she had dry snacks in that one. She fed herself when she was hungry. She felt all grown up and loved it. She's not obese now (my biggest concern) and she's 12.

That's all that I have but I hope that it helps.

 

[Raqandro]

Thanks so much for your reply. I've had two HCGs. They're both necessary as an ER admit and for the EGD. At this point it would be immaculate conception. I can't even rock my kids in their rockers, it makes me sick. .you're right, I'm probably more bothered than my kiddos. They just grow up so fast and I feel like Im missing out.
Worst thing is I have no idea when I'll be better. I've read some people are nauseated 6 months. I just can't do it. I just can't.

Wow! I'm 4 weeks out and thought that I was having a bad time.
My surgeon took out the gallbladder when he did the DS because they apparently cause problems with most DS patients. It's possible that your surgeon may need to take it out and that will resolve at least some of your problems.

I'm not sure what an EGD would show on me, I doubt that my suture line is healed up nicely (even my incisions on the surface are still red and healing) but it seems like your surgeon would know whether that's the norm or not.

Also, I dealt with really bad nausea on Tuesday and it occurred to me that since I'm so early post-op I could have been pregnant but my HCG would have been too low to detect when they tested before surgery. I know that you've been in and out of the hospital but sometimes they just don't consider it - have you had a blood HCG test? My sister had the really bad morning sickness that landed her in the hospital for a stint - I can't remember the name of it but she couldn't tolerate anything by mouth.

I know that it's hard with little kids but I work in the field (long story but I have childhood development education) and they are FINE. Children are self-centered and learning about the world around them. Let them have all of the pots and pans out of the kitchen to make a big mess in the living room floor. Let them skip a bath unless they're actually dirty (Americans bathe too often). Let yourself off of the hook. They aren't going to remember this in a few years and when they do, they aren't going to see the world the way that you see it. When mine was that age I was often sick and just migrated from laying in bed to laying on the couch when it was time for her to be up and around. I had a crisper drawer in the bottom of the fridge filled with pre-packaged (by me in baggies or from the store) snacks and juice boxes and little bottles of water. The bottom drawer in the kitchen was cleaned out and she had dry snacks in that one. She fed herself when she was hungry. She felt all grown up and loved it. She's not obese now (my biggest concern) and she's 12.

That's all that I have but I hope that it helps.

 

[Raqandro]

Also, what's your 4 week mark been like? You mentioned also having a rough time.
Oh and I am in touch with my surgeons office basically daily. They're 6 hours away. Don't feel like I'm getting much out of it.

 

[Cantstalkthis]

I'm having my first PCOS period and it's caused everything to go haywire. I have contraction like cramps (have for years) and it disturbs something that's healing and I've had PAIN. I've also had diarrhea and was dehydrated on Tuesday. I went into a lot of detail on another post but the jist is that today was a sucky day for me. My surgeon has tried to be helpful but it's just too hard to get anything figured out because he's always in surgery (irony).

It has been my experience that medical treatment from doctors who do not know about the DS or really understand the DS is generally all screwy. They have an algorithm that they follow to figure out what's wrong with you and if you don't have a normal system they get lost. My surgeon sent a sample of my stomach, liver and gallbladder to the lab and I had results at my 2 week follow-up saying that I had gastritis BEFORE surgery most likely from stress, bad eating habits and too many NSAIDS. It's possible that your gastritis is pre-existing and has nothing to do with the DS. You could have gotten a virus shortly after surgery that started a chain reaction or a million other things that I have no idea about because I don't fully understand the DS. So, just because an MD tells you that you should be taking a medication or that you have x wrong with you, that doesn't make it true. They're trying, sure, but the more DS patients that a doctor has treated the better their chance of knowing what's going on right away. Symptoms like nausea overlap a million things.

You said that your surgeon is 6 hours away. Do you have a local hospital that performs the DS? The hospital that I went to for mine did about 5 procedures on a regular basis and they're required to have an ER (I'm not sure why) BUT all of the nurses, techs, lab people, etc. have worked with DS patients for years and the on-call internist was used to making rounds with DS patients so I feel like that would be the best place for me to go if I'm ever in a bad way. Even if your insurance doesn't cover the DS there, almost all will cover an ER visit anywhere. I know that doctors and surgeons are on the top of the pecking order but the nurses see everything that happens and recognize things that they've seen before.

 

[Raqandro]

I'm going to try to find a DS surgeon in the valley who will do my follow up
I live in a small town 3 hrs north of phoenix. It's really difficult with the kiddos and hubby's sched. My surgeon is in Mexicali,MX.
Going to make a bunch of calls tomorrow, wish me luck!!
Thanks for your advice.
Sincerely,
Kelly

 

[southernlady]

Welcome @Raqandro
Try to find things that work to stay hydrated. That and rest are your primary focus right now. Some have a harder times than others and it sounds like you not only got run over by the DS welcome wagon, it brought it's brothers to help.

Buyer's remorse is extremely common. But in a year, you will look back and think, it's the best thing I ever did.

And while YOU remember this time with your kids...they won't remember how sick you are right now. Kids are extremely resilient. @Cantstalkthis has some good ideas for how to handle the kiddos.

 

[Raqandro]

Thanks. I'm staying hydrated with my PICC line. Otherwise I'd be in kidney failure .
I'm searching for a bariatric surgeon in the valley who will see me, since I've exhausted all my avenues where I live.

Welcome @Raqandro
Try to find things that work to stay hydrated. That and rest are your primary focus right now. Some have a harder times than others and it sounds like you not only got run over by the DS welcome wagon, it brought it's brothers to help.

Buyer's remorse is extremely common. But in a year, you will look back and think, it's the best thing I ever did.

And while YOU remember this time with your kids...they won't remember how sick you are right now. Kids are extremely resilient. @Cantstalkthis has some good ideas for how to handle the kiddos.

 

[DSRIGGS]

Thanks. I'm staying hydrated with my PICC line. Otherwise I'd be in kidney failure .
I'm searching for a bariatric surgeon in the valley who will see me, since I've exhausted all my avenues where I live.

Where do you live?

 

[Raqandro]

Show low AZ. So far no one in Phoenix will see me. We are still calling around.

 

[southernlady]

@Charris lives in your area. But she used Dr. K in CA.

 

[Cantstalkthis]

How funny! I used to live in Show Low and the ER doctor literally told me to stop coming in because there was nothing wrong with me. Turns out I was having a mild allergic reaction to something I was eating almost daily and a panic attack when symptoms would start. Every other hospital that I've visited has done an EKG for chest pain but not them. I would look for a surgeon in Scottsdale or similar and while they may not feel comfortable assuming your care, they may work with a PCP and hospital that knows all about the DS. I was stuck on the mountain 9/11/01 and know that sometimes you're just stuck (winter's coming) but maybe a PCP in the valley could help your PCP understand what you need to look out for?

 

[Charris]

Also, what's your 4 week mark been like? You mentioned also having a rough time.
Oh and I am in touch with my surgeons office basically daily. They're 6 hours away. Don't feel like I'm getting much out of it.

Umm you need to go see your surgeon before your being sick, sick, sick turns into something worse like dead dead dead. To be honest if I were in trouble like that again I do not believe that there is a Dr. In AZ that I feel could help me out. When I did get in trouble Dr. K dictated my care from CA. Then when I went to nursing home and home with ten in my picc line the home health nurse and dietician took charge but before one move was made the had to get Dr K approval. Who put you on the TPN? YOU do have TPN running not just I've fluids.

 

[Clematis]

I don;t have any advice, Ragandro, but I wanted to say I'm so sorry for your troubles, and I hope things get resolved very soon.

 

[Larra]

Hi, welcome, and I'm sorry you are having such a hard time.

I'm wondering if you might still have pancreatitis. It's one of those diseases that sometimes hangs on for a long time and can be really miserable- pain, nausea, vomiting, and intestines not working well can all be caused by pancreatitis, and the inflammation can linger even after the blood tests normalize. If things don't get better, a repeat CT scan might be a good idea. It's a good test for showing pancreatitis. Just a thought, obviously I have no idea why you're so sick and there are probably lots of possibilities.

Probably best to not challenge your stomach at all, just keep using that PICC line and let everything inside rest.