Had an endoscopy today as I have been having more and more issues with getting food stuck ( I have limited scleroderma). They couldn’t get a vein so had to have one without sedation and it was horrible. I know people with this awful disease go through a lot worse but it’s really set me back. I can’t help thinking what my life will be in the future . I’m hoping they can do something about the food getting stuck all the time.
Everything seems to be progressing very slowly but sometimes panic grips me.
How does everyone cope?
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Helenlouise40
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Hi Helen, I have these moments too. A terrible melting inside. It’s hard and I don’t want to sound glib but I accept these moments, recognise it for what it is and let the feelings just come. Accept them as part of your journey and illness. Fear is a natural and obvious feeling for someone in your situation so don’t fight it. Be afraid. Be sure as well that the fear will pass and you will be feeling stronger again very soon. Good luck xxxxx
Hi Helen, sorry to hear you had your endo without sedation. I had my first one like that too and it was a scarring experience that left me feeling very similar to what you describe. Things can at times feel quite bleak, but after over a decade of dealing with this condition I have learned that improvement is possible and indeed likely with the new treatments that are being used. I am amillion times better these days than I was five years ago, and you need to trust that issues that seem so hard now will get better down the line. In the meanwhile, be kind to yourself and try not to dwell on the negatives. Best wishes
Hello everybody !After a great deal of trouble, I have managed to re -access this website in my hour of need.
I am 91 years old and have been suffering from Systemic Sclerosis for over thirty years.
The disease has seriously affected my digestive system, and after years of unspeakable incontinence/bleeding/surgery, I ended up having a colostomy operation, which I wish I had undergone sooner!
I have almost every secondary symptom in the book, dry mouth, Raynauds etc, and devastating heartburn/reflux, with the same problems described by everyone.
Like you, I’m due to have an endoscopy on Monday 7th March.
Like you, I’m dreading it.
Not so much the procedure, I’ve had one before, but more the possible discovery of something sinister that I am unable to cope with.
I’m pretty tough, I’ve had to be,as I live alone and Social Services don’t exist as far as I’m concerned.
I fractured my hip and arm two years ago, and appropriate ‘Aftercare’ didn’t exist!
I have the most devastatingly painful arthritis in my shoulders, and knee, and I’m on a waiting list for a replacement , but in the present situation, I may not last until ‘my turn’,
Not that I’m over optimistic about the result!
The surgeon feels it might relieve the pain, but as I told him; ‘you can be the best surgeon in the world, but your expertise counts for little if the aftercare is rubbish!’
Anyway, so glad to be back with you all.
It’s a strange situation isn’t it, when you’re going for a test.
On the one hand, you want to know WHY you are suffering, but on the other, you’re frightened of the explanation.
Goodness you have done well to have got to the age of 91 despite suffering from Systemic Sclerosis for thirty years, this statement alone will give hope to so many younger sufferers, your obviously a fighter.
I feel that due to the Pandemic (which can’t be helped)
and the way the NHS is organised now, everything seems to be in disarray. I am sorry to hear about your lack of support from Social Services, again not easy this last two years though. Have you any family or friends or even your GP who could voice concerns on your behalf, surely you should be seen as vulnerable
and a priority. Sounds like you have fallen through the
the cracks in the floorboards or been deliberately put there!
You are very worried about the endoscopy results, that’s natural, but better to know and if needed receive treatment, I find it’s the not knowing that’s the hardest. Your right though it is a strange situation
to be in.
I wish you all the best for your endoscopy, I’m sure there will be many on the forum thinking about you.
When you go to the hospital you must let them know fully about your situation, they have a duty of care towards you, as does your GP, and can refer you direct to Social Services, given your age and vulnerability. It’s not easy for you but if you have no one to advocate for you, shout out yourself until they hear you.
Hello Helen, I am sorry you had to endure that proceedure . It must have been very scary. I was diagnosed with limited six months ago but have had the dry mouth and Raynauds for years.. Lately I noticed I need to sip water and really chew food well especially bread before swallowing. Fortunately I do not suffer from any reflux. I am wondering how long you have been diagnosed before the swallowing problems began for you ? Marie
Hi HelenLouise40, I had an endoscopy without a sedative and yes it was awful, so painful and traumatic. It took me a few weeks to get over it and certainly didn’t help my swallowing issues. Have you had the results? I was put on PPI’s, Omeprazole,
which did help initially but then had to be increased.
I was then referred for a Barium meal, you have to swallow a chalky solution and an X-ray is taken which shows the how well the Barium travels down the esphophagus. The swallow test involved eating biscuit, cake etc covered in Barium. I didn’t feel it really represented
the range of foods that cause my swallowing problems fully but it did identify problems. I have been diagnosed with LPR reflux, I now take Omeprazole twice a day plus Gaviscon Advance after every meal and at bedtime, this is helping, not totally under control, but better.
You need to ask for a referral to Speech and Language Therapy at your local hospital so that you can really find out what is happening. Sorry if I’m giving you info that you already know, good luck and insist on that referral.
Hi HelenLouise40, forgot to say, I didn’t explain that there are two different reflux diagnosis. Gerd which is when you have reflux with heartburn and stomach acid doesn’t usually reach your throat and LPR (Laryngopharyngeal
Reflux, also known as ‘Silent Reflux’ because you don’t have heartburn. LPR causes swallowing difficulties, hoarseness, sore throat, feeling of food stuck in throat,
and other things. I’m not a know all but have read the name from the information leaflet the therapist gave me,
it certainly explained my symptoms and why I don’t have
heartburn. Hope this clarify things and helps you, try not to worry, it’s horrible though when you choke and don’t
You have my sympathy having to have the endoscopy. I had one and won't be repeating the experience. I resisted having one as long as I could and at first opted for barium meal instead but my consultant really wanted me go have the endoscopy as my swallowing and acid reflux was getting worse.I was really dreading it. It didn't help when the person doing it told me no one that day had requested sedation and made me feel should have it either.
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