Having a rough time.

[Celeste97 22]

Hello ! :) *sorry this will be long*
I created an account because I really needed to talk to someone who understands what I’m going through.
I have a lot of support from family and friends but all they can tell me is “hang in there”

I need some sort of answers because I’ve been really regretting this surgery. I need to know that things will eventually turn around because I don’t know how long I can keep living like this.

After my surgery (1/22/2020) I was admitted 3 times back into the hospital due to dehydration, nausea and vomiting.
The dates were :
Feb 3rd to 6th
Feb 15th to 18th
Feb 27th to Mar 3rd

After those dates the doctors that I spoke to thought it would be a good idea to get fluids every other day in my hospitals infusion center. I went 2 days and was feeling fine, was able to eat - no nausea or vomiting.

With COVID-19 being a very serious thing my hospitals infusion center is closed and i’m not sure for how long. I ended up becoming weak and all the symptoms for dehydration came back. I went to the ER, they gave me my fluids and I went home but I’m still dealing with nausea and GERD. I’ve been dealing with kinda slimy saliva and foamy vomit and it’s after any little thing I eat or drink. EVEN Water and it’s upsetting I don’t know what to do, I don’t want to go back to the hospital with everything happening now. Can someone help please?

If anyone had time to read this thank you I’m sorry it was long I’m just desperate and have been depressed over this. Please be safe wherever you are too.

[kristieshannon 1,668]

I’m so sorry you’re going through this! Have you tried different temperatures and thicknesses of liquids? Some people seem to only tolerate very cold liquids, some only tolerate warm. Also, while hard to get in big quantities something thick like sugar free Jello or popsicles provides hydration and may be tolerated better than thin liquids. Go very slow! Tiny sips (or bites in the case of Jello or popsicles).

If you need ongoing IV hydration your doctor may be able to order a home health nurse to provide it in your home.

[amboyle728 71]

Wow! It sounds like you have been through Hell, and I can't blame you for regretting the surgery if you're going through all that!

Has your doctor recommended any more tests to make sure that all is well, and there is not another issue going on in your tummy? Maybe a swallow study or CT scan? If not, maybe you should seek another opinion, as it is very rare to not be able to tolerate anything at your stage.

My Bari-team also sent me home with prescription Prilosec and antacid tablets to ease stomach acid and help me tolerate foods better. Were you given anything like that?

If you are not getting enough liquids you're obviously going to be dehydrated, and that is not a good thing at all. I don't blame you for being wary of the hospital, but you can't continue in a dehydrated state. The idea of having a home health care nurse come in sounds like a good compromise and you might want to look into it. In either event, you can't go on being dehydrated like that and not being able to eat or drink anything. Has it been like this since your surgery 7 months ago??

I really think you need to pursue it further with your doctor to get some answers as to why this is happening.

Sending thoughts and prayers your way!

[Celeste97 22]

I was told that it wouldn’t be possible for a health nurse to visit me at home i’m not sure why but I should look back into it. but ! cold liquids are my go to , they feel the best going down. warm/thick liquids like Soup are okay but not a lot. I think I just may have a problem with intake since i’m always dehydrated I want a lot.

[Celeste97 22]

On 03/21/2020 at 14:29, amboyle728 said:

Wow! It sounds like you have been through Hell, and I can't blame you for regretting the surgery if you're going through all that!

Has your doctor recommended any more tests to make sure that all is well, and there is not another issue going on in your tummy? Maybe a swallow study or CT scan? If not, maybe you should seek another opinion, as it is very rare to not be able to tolerate anything at your stage.

My Bari-team also sent me home with prescription Prilosec and antacid tablets to ease stomach acid and help me tolerate foods better. Were you given anything like that?

If you are not getting enough liquids you're obviously going to be dehydrated, and that is not a good thing at all. I don't blame you for being wary of the hospital, but you can't continue in a dehydrated state. The idea of having a home health care nurse come in sounds like a good compromise and you might want to look into it. In either event, you can't go on being dehydrated like that and not being able to eat or drink anything. Has it been like this since your surgery 7 months ago??

I really think you need to pursue it further with your doctor to get some answers as to why this is happening.

Sending thoughts and prayers your way!

I’ve done so many swallow studies, CT scans, HIDA scans, Ultrasounds and they’ve all come back clear - no problems what so ever. It blows my mind really.
Tomorrow I will be 2months out and even my surgeon has told me that it’s strange the things i’m going through which didn’t put me at ease haha. but I was sent home with Prilosec, Zofran, and Pepcid all for my stomach problems and nothing seems to work. Strong flavored drinks also get me nauseous , so i’ve been drinking Water with Vitamins and electrolytes. as for my Protein I’ve been drinking flavorless ones but nothing seems like it’s enough. I really need to call someone about the home health nurse because I’m exhausted from all of this.

[FluffyChix 17,415]

Popsicles. Continual ice chips. Cold Water. Whatever you can get down if cold is your thing. ((hugs))

[Bastian 458]

oh bless you, sounds awful. just concentrate on fluids sip sip sip all day long freeze some watery drinks etc as fluffy chix has said. have a bottle of Water on you at all times, take it everywhere and keep sipping. you feel so awful coz of the dehydration so if you can get on top of that there will be a huge improvement xx

[Celeste97 22]

On 03/22/2020 at 00:15, Bastian said:

oh bless you, sounds awful. just concentrate on fluids sip sip sip all day long freeze some watery drinks etc as fluffy chix has said. have a bottle of Water on you at all times, take it everywhere and keep sipping. you feel so awful coz of the dehydration so if you can get on top of that there will be a huge improvement xx

i’m sipping now :) it’s just frustrating since I was doing so well already on stage 4 with soft foods and now I’m basically going back down to stage 1 but I gotta do what I gotta do i guess.

[Bastian 458]

1 minute ago, Celeste97 said:

i’m sipping now it’s just frustrating since I was doing so well already on stage 4 with soft foods and now I’m basically going back down to stage 1 but I gotta do what I gotta do i guess.

I know it's hard and I HATED the constant sipping, to begin with especially being a low Fluid drinker before surgery. Suddenly having to carry a damn drink bottle everywhere REALLY annoyed me LOL Not really sure where my mindset changed with the drinking but it did and i just concentrated on sippity sip sipping alllllll day and now I always have my 1-litre drink bottle on me without thinking.

So many habits to change huh You can do it, you just have to make a conscious effort at the moment but it will end up being 2nd nature eventually xx

ps. I have gone backwards a few times too, no biggie we get 'there' eventually x

[Celeste97 22]

On 03/22/2020 at 00:31, Bastian said:

I know it's hard and I HATED the constant sipping, to begin with especially being a low Fluid drinker before surgery. Suddenly having to carry a damn drink bottle everywhere REALLY annoyed me LOL Not really sure where my mindset changed with the drinking but it did and i just concentrated on sippity sip sipping alllllll day and now I always have my 1-litre drink bottle on me without thinking.

So many habits to change huh You can do it, you just have to make a conscious effort at the moment but it will end up being 2nd nature eventually xx

ps. I have gone backwards a few times too, no biggie we get 'there' eventually x

Thank you for giving me hope lol I do have a question, if you’ve dealt with dry mouth- are there any tips on that ? I’ve tried different mouth washes too I just don’t know what to do about it. like i’m already going thru hell now i got bad breath and dry mouth lol

[Bastian 458]

dry mouth and bad breath are a combination of dehydration and ketosis. It does pass eventually though. Just drink, use mouth washes or you can get a dry mouth gel from the pharmacy which we use at work as a replacement for saliva on patients that are mouth breathing and severely dry, ill try and find the usa version for you, back in ten mins!

[Bastian 458]

oh it's the same brand as here called Biotene: e® Oralbalance Moisturizing Gel is the most concentrated formula in the Biotène® product line, making it ideal for long-lasting relief from the symptoms of Dry Mouth

[Celeste97 22]

On 03/22/2020 at 00:42, Bastian said:

dry mouth and bad breath are a combination of dehydration and ketosis. It does pass eventually though. Just drink, use mouth washes or you can get a dry mouth gel from the pharmacy which we use at work as a replacement for saliva on patients that are mouth breathing and severely dry, ill try and find the usa version for you, back in ten mins!

you’re the best !

[Celeste97 22]

On 03/22/2020 at 00:44, Bastian said:

oh it's the same brand as here called Biotene: e® Oralbalance Moisturizing Gel is the most concentrated formula in the Biotène® product line, making it ideal for long-lasting relief from the symptoms of Dry Mouth

oh i’ve used biotene , i’m gonna buy the gel tho. tysm x

[Bastian 458]

2 minutes ago, Celeste97 said:

you’re the best !

ha ha thanks, good luck!