Oesophageal Dilatation Questions - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Oesophageal Dilatation Questions

-missymoo profile image
8 Replies

Hi all

I have Limited cutaneous Systemic Sclerosis and have been experiencing swallowing difficulties, certain foods get stuck in my chest and will only go down with fluids. I am seeing a gastroenterologist on Tuesday about my problems (several at the moment). I’ve read a lot about Oesophageal Dilatation and wondered if anyone here has had it? And to what severity will they do the procedure? Just preparing myself.

I also choke quite often which comes from my throat, could be food, saliva or air 🙈 very embarrassing, especially when in public or in the office. Could this be weak throat muscles?

I take 40mg omeprozole and 300mg renitidene daily.

Any advice greatly received

Thank you x

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8 Replies
fairy56 profile image
fairy56

Hello missymoo, so sorry to hear you are having difficulties with swallowing, I'm afraid I don't have any advise but I am thinking of you, and please let us know how you get on, take care xx

-missymoo profile image
-missymoo in reply to fairy56

Thank you fairy56 🤗

Hi missymoo

I too have limited cutaneous systemic sclerosis. My thoughts are with you. I apologise in advance if my message doesn’t make sense but I’m very weak at the moment. I’ve had problems with swallowing for some time now and over the last few months this has become quite severe to the extent I cannot eat solid foods. Because of this I was barely eating and this is why I have become so weak. I’ve had to change to a puréed diet to help get some goodness back into my body to help me regain strength and weight. This procedure had not been mentioned to me but My rheumatologist put me on mycophenolate in January of this year as my skin had tightened so much over my shoulders head and around the throat area. I haven’t had any side effects from this and my rheumatologist has said that realistically he’d expect to see results after 18 months to 2?years so I still have a way to go.

I also have sleep apnea where my airways close down whlie I’m asleep. I’m on a cpap machine which keeps the airways open while I’m sleeping and this has recently been upgraded to include a humidifier as I couldn’t swallow as I wasn’t producing saliva to swallow. I take omeprazole and have a glandodsane spray and always keep a water bottle with me.

Not sure if this helps.

Best wishes xx

Mlw79 profile image
Mlw79

Good morning missy moo. I have the same types of problems (exacerbated by a hiatal hernia repair) after manometry testing they found I have dysphagia- the oesophagus just becomes smooth and doesn’t work properly and swallowing is difficult. The procedure you mention is to widen the oesophagus so I don’t think that will help. I’ve had to stop fighting myself and take a liquid diet, I eat standing up and walk around whenever I can around eating to be sure it stays down. I also take the antacids but I was told ranitidine creates bubbles and can make trapped wind in your tummy worse. I also take wind-eze, whenever I feel anything coming on and that’s been effective in providing relief. It’s been trial and error for the food but porridge, creamy soups and even soft boiled eggs have been ok so far. It’s boring but I’m waiting to speak to a dietician to get some more variety in. I hope some of this helps, I know how uncomfortable and distressing this is- especially the spitting back up- I have a little flask I take everywhere with me!! Please keep in touch hope things improve for you xx

Agedbiker profile image
Agedbiker

Hi missymoo. I am in a similar position . I have systemic sclerosis with of, gastritis, hernia, esophagitis and dismotility. I frequently choke and get things stuck in my gullet. If you have dismotility then dilation won't help. It will only be a benefit if your esophagus muscles are tight ( mine are loose). Another option for tight esophagus is to have the muscles cut.

Sanmateogirl107 profile image
Sanmateogirl107

what you need is digestive health julie

When that occurs with me I now stick to veggie meals for a few days. This approach is working for me at the moment, but unsure if it will be a longtime answer.

Bread products get stuck as well

Hi there - I am in the same boat mine gets stuck in my throat and I literally choke and make myself throw up. No one knows here what to do. I also get such stomach cramps that I lose my breathe. One dr. said that they could flip my epiglottis, I was like what!!!! no way!

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