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Off the Reglan - trouble swallowing :(

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

My dad stopped the Reglan this week. Monday or Tuesday because it was causing major dizzy spells. He was doing okay at swallowing, but I think it is getting progressively worse.

He just said he seems to be having difficulty swallowing saliva.

I am not sure what questions to ask, if it is time to call the doc? Should we think about something else (NOT reglan) to help get things down? Dilation needed?

4 weeks ago tomorrow he was in surgery. The surgery went fine, but when they were done he didn't want to start breathing on his own. It took him almost three hours. So we think they did quite a number on his throat too.

Any advice?

Thank you all so much.

Beth
Daughter of Roy
DX 6/17/11 T3N1M0
10/7/11 Robotic Esophagectomy

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

Dad has a call in to the doctor which is HUGE for him. I am afraid he is getting depressed and I don't know how to lift him up. :(

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Reglan caused depression for my husband. It took him several weeks being off of it before the depression went away. He is now taking a drug called domperidone(we order from Canada not available in US) which helps in digestion as I understand it. It does not help with swallowing. The only thing that helped with swallowing was dilation. It took two weeks to set up the first dilation. It is not something the Dr. Office sets up commonly so getting thru to the scheduler what we needed done was the hardest part. His GI doctor know what to do once we got past the front desk, but that was a process. So I would recommend starting now if you think that is what he may need. Our first move was to talk to his surgeon how did some test (can’t remember what they were checking) then recommended the dilation and referred us back to the GI doctor who first diagnosed him.

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

Thank you BirdieQueen for you comments. Very interesting about the Reglan. I am sure that had a lot to do with some things he has been experiencing.

At this point too I am wondering if he is dehydrated.

Thank you for the info about the Dilation. We will see what Rodiguez says, then contact the GI doc - Dr. Meredith.

We are not sure if he needs the dilation or just hydration and calories. He dropped 6 pounds in the last week. :(

NikiMo's picture
NikiMo
Posts: 347
Joined: Jul 2011

Hi there,

My husband had surgery the same time as Terry's and Erica's husband, actually just a bit before them, in two days it will be two months. My husband also had trouble with getting in calories and enough hydration. Unlike the other ladies husbands mine is doing a round of post op chemo. Once the Chemo started Jeff took a turn for the worse his body could not handle the drugs. We were started on a drug called dexamethasone, this is steroid that helps with nausea, but it also encourages appetite. He also was started on the feeding pump (which he had not used up to that point, thankfully the oncologist had refused to let him take it out). And the most important was daily hydration that we do at home through his port. The body can go for a long time without food, it can not go long without water! As soon as the hydration started he felt ten times better, the nausea stopped and his appetit returned. I am actually thankful that the Chemo made him not feel well otherwise they would have let him go on struggling. I would suggest asking for the hydration, it may help with everything else, and it sounds like he needs a dilation. Hoping you can get some answers soon.

Niki
Wife to Jeff T2N1M0
IL 9/6
Clean Path
planned 8 rounds of post op Chemo

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Glad to see that your dad already has the call in. In this day and age of medical advanced there is NO reason to suffer when medical technology or meds might be available to alleviate his issues.

Let us know how it goes for him, Beth. Glad you're there for him.

Terry

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

I suggested calling but he balked at it. But then mom called to check in and suggested it too so he called. Yeay! He is getting more tired today.

UGH.

Thank you so much for your support! Hopefully he can get some relief this afternoon!

Beth :)

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Beth,
It is hard to know when to call, but if he is having problems swallowing saliva, it’s time to call. That will not get better without some help, in my experience. Dilation is not a difficult procedure, much like having a scope from the patients’ stand point. I can only imagine it would be easier for the Dr. if things are not totally closed off, so the sooner the better in my opinion. It was very concerning and downright scary when they can’t swallow.

Take Care
Lee Ann

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

Another plus about doing a throat stretch (if that is what his doctor recommends), is that an expert is then also going down and checking things out and looking around. I am always glad that I did the dilation when its done. Peace of mind and really helps to be able to eat and swallow pills and water...
If you are not to freaked out about things like that then go to youtube and you can see several being done. WOW! 4 weeks out of surgery. I remember being very weak at that time.
Wish you guys the best.
Jim

Donna70's picture
Donna70
Posts: 921
Joined: Aug 2009

Hi,
Just wanted you to know some people need stretching soon after the surgery. I did not but I know one woman who had to be stretched 25xs after her surgery and she is fine now. Could be a combination of post surgery recovery problems. I was lucky that I did not take Reglan with all of its side effects. They gave it to me and I threw up immediately so never stayed on it. Hope the drs find out what is going on with your Dad and keep at them till they give some good solid answers. take care,
Donna70

Janet Runge
Posts: 37
Joined: Aug 2011

JIm How is your appitite and eating. My husband is contantly not hungry and just had the dilation last week and hopefully will be eating more
Janet

NikiMo's picture
NikiMo
Posts: 347
Joined: Jul 2011

Hi Janet,

My husband is in post op Chemo right now, they subscribed dexamethasone for nausea but it is a steroid so it also has the added bonus of increasing appetite. Maybe it could help

Niki

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

It was tough at first after surgery. Each day got just a little bit better with some bad days mixed in but then before you know it the good days added up to a normal day or two and I could honestly say that I feel 99% some days.
The dilations really helped alot and now 7 months later I ate a nice size porterhouse and some beans for supper with zero issues. Of course no eating 3-4 hours before bedtime. I drink alot of water during the day and I also do very moderate workouts and yard and house work. Lunches and suppers are easy but I am bored with breakfasts. I can-not have milk so cereals are out.
Jim

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I agree with the others--Don't ever put off calling the dr. It will give peace of mind even if nothing's wrong.
Sandra

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

It hasn't been a good weekend. Dad had to have two days of fluids because he was dehydrated. They gave him Errythromycin because they think he may have a fungal infection. BUT instant diarrhea, nausea, dizziness and dry heaving. My poor father.
They told him to stop taking some all medicine (except the prilosec) and try to keep the food down. Yesterday, that wasn't possible.

Today he had a boost for breakfast. I wrote down every symptom as it was progressing...from tender lower area, to starting to feel nauseated to achy all over until he finally relaxed to fall asleep. Minor diarrhea after.

but then around noon time he had a 1/2 cup ice cream with NO issues.

Snacked a little, but certainly not enough - maybe 700 calories today.

I am getting worried about malnutrition and will be talking with the team at Moffit tomorrow.

We will be also asking about Dilation too. Something needs to be done.

Beth

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