Teatime

Worsening esophageal symptoms

12 posts in this topic

I'm afraid elements of this post may be a bit gross so my apologies ahead of time!

 

I had an alarming episode today and was wondering if anyone else has had something similar happen and, if so, what one can do! At this point, I'm afraid to eat anything that isn't really soft!

 

It's been horrifically hot in my part of Texas -- we've been at 106 degrees for several days now. I've been keeping my food intake light so I was eating a small salad and a piece of cold chicken for supper. All of a sudden, the food I had swallowed wouldn't go down. I've had many attacks like this before and know to just keep calm, relax, breathe deeply and slowly and, eventually, the food will go down, even if it does hurt.

 

This time, however, the esophageal spasms were weak and seemed to be sending the food up, not down. Saliva started coming up and then a little bit of food. About 3 minutes of this went by and then all of the food I had eaten suddenly came up. It wasn't like vomiting, though. There weren't terrible stomach contractions or stomach acid or any digested food. It was just the food I had recently chewed and swallowed, as if it was trapped in my esophagus and maybe the very top of my stomach. And while this was going on, I lost bladder control, too. :(

 

Needless to say, this was a rather scary experience. I didn't know what to do during or after. My gastroenterologist gave me a medication called Hyomax (hyoscyamine) to take when I'm having an attack but by the time I located the container, the food was coming up and I really couldn't take a pill. This attack happened 5 hours ago and my esophagus still hurts and I feel sore. I want to eat but I don't know what my system will handle.

 

Luckily, I already had a scheduled visit with my gastroenterologist set for Monday so I just have to get through the weekend. Any suggestions, though?

 

Thanks!

Julie

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Hi Julia,

 

What a thoroughly horrible experience for you; I'm so sorry. :(

 

I've never suffered with such a problem (thankfully!) and am not a doctor, but I wonder if perhaps you could try taking liquidised food to start with, to see if you're able to keep that down and also not to inflame your sore oesophagus anymore.

 

Thank goodness you have an appointment with your gastroenerologist on Monday and I do hope he'll be able to advise you and help you to try and prevent it happening again.

 

Kind regards,


Jo Frowde

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Hello Julie,

 

Sorry you had such a nasty experience, it is no fun at all when these things happen. I have had similar episodes myself from time to time except that my oesophagus doesn't get sore. All of a sudden I will bring up what I have been eating sometimes quite soon after and sometimes a long time after (like 2 or 3 hours).

 

A couple of things I would suggest, cold chicken, unless it is very finely diced and preferably with mayo, I find very hard to get down. Salad too can be a problem, I really do much better when vegetables are cooked. You could try what Jo suggested and liquidise your meal once it is assembled. If you do it immediately before you eat things still taste much the same. The other thing I would suggest would be chilled cooked vegetables.

 

Since you have an appointment on Monday and it is very hot I think I would stick to things like icecream (yum) and milkshakes. Do you make milkshakes the way we do? Actually what I make is more like a smoothie, Icecream, milk, some soft fruits like strawberries or tinned peaches, whizz it all up and enjoy!! It is better to eat something which has a chance of going down, and don't listen to that voice in the back of your mind which sounds like your mother telling you to eat your meat and veges

 

I take a medication which several others take - domperidone - which I find stops the sudden vomiting. The proof of that I have from the time or two when I ran out of the medication and within days was vomiting again.

 

I hope you get good advice when you see the Gastro on Monday.

Best wishes

Judyt

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Thank you, Jo and Judy! Today has been better, thankfully. I'll admit to maxing on the meds, using the reserves in my bag of tricks. I have found a supplement to sooth my GI tract when things are bad and I take it with my doctor's full knowledge and blessing. He also gave me promethegan (promethazine rectal) suppositories to use at times like these and I have made use of them.

 

This morning, I was even having problems with liquids. I was having the esophageal spasms and saliva and the liquids coming up a bit. I kept drinking, though, slowly and worked through it. I had to -- even with air conditioning, you have to keep hydrated in 105-degree heat. The meds obviously helped a lot, too.

 

I did manage some yogurt and ice cream. I love milk shakes, Judy, and I have turned to shakes and smoothies on many occasions!

 

I'm afraid my gastroenterologist is going to want to do some more tests. I've had a regular endoscopy, a capsule endoscopy, and an esophageal dilation in the past 18 months. In the past two years, I've had five surgeries. I need a break from all of this. I'm booked to fly to London next month to visit my good friends in Surrey and I don't want anything to spoil it!

 

Julie

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Hi Julia,

 

I'm glad that your symptoms have eased a little and that you're feeling a little better. I hope that your appointment with the gastroenterologist is productive and that you don't have to have too many more tests (if any at all!) Please let us know how you get on with them.

 

I hope the weather in the UK improves for your visit next month; failing that I would advise you to pack plenty of wet weather gear!! (see my thread here ;))

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Julie

 

A few years prior to scleroderma I was eating a meal with my husband (thankfully at home!) and all of a sudden threw it back up again and like you it was as if the food has been propelled out of my body without the usual stomach involvement.

 

My reflux has always been mild but now I notice that food goes down my esophagus slowly, I have a gastroscopy this month, it will be my first one and at the same time I get to have a colonoscopy! :nervous: That I've had before.

 

I'm glad the medication is working and hope your gastroenterologist can help you further.

 

Let us know how it goes and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

I guess I am one of the unlucky ones, but I have to say how important it is to follow these symptoms up. I was diagnosed with Barrett's Oesophagus last April, which turned out to be cancerous and now I have secondary tumours of the brain and lungs and my life expectancy is between three and twelve months. I'm not saying this to scare you, but to encourage you to have all the tests as soon as possible. I was unlucky in that I had been having problems for some time and when I did see a consultant (not my normal one) he dismissed my symptoms and I went a further five months before the cancer was diagnosed.

 

I sincerely hope your tests when you have them done, go well.

 

Regards

 

Sandy B

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Hello Sandy

 

Have you approached the doctor who dismissed you and explained how important those 5 months turned out to be? You could just send him a letter along the lines of wanting to encourage him to NEVER dismiss symptoms again.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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SandyB, I am SO sorry! :( I don't know how it is in the UK but, here in the US, a man can go into a physician's office with the same symptoms as a woman and the doctor is more likely to take it seriously and investigate further than he would with a woman. They love to dismiss us here as being stressed or some such thing. I hope you were able to get some sort of apology, recompense, anything! That's just so wrong.

 

I have had a capsule endoscopy, a regular endoscopy, and an esophageal dilation all within the past two years so I think I'm safe, in that regard. I'm sure that I'll have more tests geared toward motility in my future but I don't have to worry that it's cancer at the moment. Biopsies were taken during the endoscopy.

 

I wish you all of the best!

Julia

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Thanks, Amanda. All best for your gastroscopy!

 

We're kind of in a holding pattern now, awaiting my rheumatology visit. We finally got the rheumatologists in town! They began seeing patients today and I have an appointment on Wednesday! My gastroenterologist said my issues are related to sclero and he really needs the input of a rheumatologist. at this point. I agree. I'm going to be coming to England in mid-September for about a monthlong visit so I don't know how much we'll accomplish before I go.

 

Oh, but this is funny. I told my gastroenterologist about that and he asked me where in England I'd be. He apparently spent several years practicing medicine in greater London so he's familiar with the system and hospitals. He gave me his email address and told me to email him immediately if I had attacks when I was there so he could advise. That's cool!

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