Hi all, Diagnosed with limited cutaneous systemic sclerosis and secondary Raynauds in 2017 with worsening GI issues and potential Kidney problems. I recently had 24 hour PH and Manometry test to check for oesophageal motility issues and to see the severity of the reflux I’m having. Despite 2 years of a combination of omeprozole/Esomprozole and ranitidine for symptoms the tests revealed I have ineffective motility at least half the time and despite what I thought to have been a good day in terms of reflux during the test it shows I have excessive acid reflux having 73 episodes in 24 hours. My question is given that I’m already taking meds to help, what other treatments are available? Anyone here needed surgery? Very concerned it’s going to get worse.
Any help would be appreciated
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-missymoo
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Hi there, I am afraid that the omeprazole/esomeprazole/ranitidine are only there to try and reduce the amount of stomach acid that you have. They can't do anything about motility issues or the amount of reflux episodes you have. It just means that there is less acid to cause a problem.
Do you see a gastroenterologist for this problem? I am sure that there are surgical procedures that are used, for example, to help to close the stomach sphincter. It would depend on the issues that they identify as to what they felt were the best options. But, you definitely need a referral to someone in the know.
I am due to see my gastroenterologist soon (waiting for an appointment to come through) to discuss a treatment pathway, but me being me and a worrier thought I’d ask this wonderful group in the meantime. I find it so helpful. The motility is a worry for me as I suspect it may only get worse. I will try not to worry in the meantime and be patient and wait till I see her. I opted to go privately so I’m sure it won’t be long.
Hi .i was diagnosed with limited cutaneous scleroderma in 2018 but had bad bad difficulty swallowing in 2014 to the point i lost two stone within approximately 3 weeks as i was terrified to eat because food would stick in my throat and when it did go down it would come back up and at that time doctors didn't know what was wrong as i hadn't had the blood test done as the raynauds developed in 2018 but the difficulty swallowing has been better over the last 2 years ,so my point is it can improve with time ,try to keep anxiety levels down which i know how difficult that is to do but it makes a difference as i felt like i was being strangled all the time.omeprozole made everything a lot worse for me causing stomach pains ,feeling sick and lots of gas.
hello sorry to hear you are having difficuliesi have scleraderma in my oesophagus and motility issues and chaking due to it i am on metoclopramide tablets and the issue is my more comfortable for me now although waiting for a peg as i have had significant weight loss and i need a top up .hope this helps .good luck ,elaine
Hi missymoo, I am very similar . Started with reflux 5 years ago, had gastroscopy, Manometry and PH followed by barium meal and further gastriscopies. I have ineffective oesophagus, oesophagitis, gastritis and reflux. Same as you I was put on esomeprozole and ranitidine with metoclopromide at night. 3 years later diagnosed with SSC and nothing has changed. I was told that I have a hiatus hernia which is operable and they can also tighten your bowel sphincter but it will cause more issues than it cures due to the poor motility. My motility has not got any worse in the last 2 years so it does plateau after a while. Diet is your best best bet, trial and error as everyone is different. I have cut out tomatoes and anything sugary,fatty,salty or that had tomatoes in.
Last food 3 hours before bed and last drink 2 hours before bed. It's not ideal but it is an improvement. Good luck.
I have the same issues as you, was on max esomeprazole and still having terrible reflux as well as motility issues. I had the 24 hour test as well as barium meal. I had a hiatus hernia too, and sfter much discussions with other consultants (due to the systemic sclerosis and motility) my consultant decided to operate. He did a wrap (i think it was called a fundoplast) which alters the angle at the end of the oesophagus and stops acid coming up, but does make swallowing harder. They were worried about the effects of the excessive acid, which can cause problems if it tips into the lungs. I had the op by keyhole 10 months ago. For 3 weeks, i could only have liquids (gone right off soup!) and could then introduce other types of food. Some food i still cant eat, as i cant swallow then, such as bread. I find hard crunchy things that can be chewed small the best. I can only eat tiny meals too. I am glad i had it done as the reflux was so awful, and i dont have it now, nor do i need the medication. A welcome side effect was that i lst weight!!!
Hello missymoo, thanks for asking this question. I don't have any answers but in a very similar position to yourself so will follow this thread. I will try some of the suggestions from agedbiker, I do notice it's easier when I eat my main meal earlier though cutting out tomatoes will be difficult as they form the basis of many of my meals, what a pest. Take care.
Great post, I’ve woken to read this after another terrible night. My motility is poor from my oesophageal, stomach and bowel. I’ve got my bed on bricks to stop me breathing in the acid to my lungs, but the burn this morning at the back of my throat and chest is terrible. And that’s after being up all night drinking water.
I too am on maximum meds. Ranitidine and lansoprasole. I’ve taken all spicy food and tomato based food out of my diet. I’ve reduced fat too, but I’m still miserable.
Thank you all for responding, I really appreciate it 🙌
I do find it strange how most have posted also have a hiatus hernia, my sliding hiatus hernia was picked up during and endoscopy in October, kind of thought it was a red herring. Sadly I think it is the Ssc causing most of the issues but the HH isn’t helping either.
Hi, I too have had a similar problem for many years. I have raynauds, diffuse scleroderma and sjogrens. It's so frightening waking up unable to breathe choking on acid. I have a hiatus hernia which has now led to Barrett's oesophagus. I am on pantoprazole max dose but use Gaviscon (alginate based) at night as it forms a raft on your stomach contents to prevent the reflux. I have found this most helpful as well as having my bed on bricks.
I have experimented with diet over the years but never really found a pattern until I followed a low carb keto diet. I was shocked that eating fats and cream etc helped but it appears that its the bread, sugar, potatoes and pasta that cause my problem, I also now take high quality probiotics.
Apparently this way of eating reduces inflammation in the body. Since following this way of eating I have lost weight and I can now sleep flat and no longer wake up choking on acid. Over Christmas I indulged in higher carb foods and my problem came straight back so I am convinced it works. May not work for everyone but worth a try.
Try taking natural kefir - preferrably one you make at home, rather than store bought. It helps enormously with reflux and most GI tract problems and is entirely natural. I've been taking it for almost eight years and only very rarely have reflux, although I suffered it constantly before.
I really do think that keeping a strict food diary could be useful. Note absolutely everything that you eat or drink and check it occasionally to see if any trends show up.
I have found in my case that I get worse acid if I have eaten wheat. I am experimenting with gluten free but think I am better if grain free.
Nasal drip in my case causes acid as well so I try to decongest regularly.
You have nothing to lose by keeping a food diary. When it gets to this stage any further treatments are going to become less attractive.
I have also started drinking a glass of celery juice most mornings, which I think has been useful.
I have learned to sleep in a recliner, it helps alot with the reflux ... But I have yet too find Anything that helps with the chocking . I had esophageal dilation in December.., it help for only a few days ...
I found that Omeprazole was making my reflux worse, until I did some research, and I stopped it and started to take Magnesium Triglycinate at night and even got better eating 80% green in my diet especially raw in a form of smoothies and salads. Avoiding alcholic drinks & no water drinks 30min before & after food, preferably making your own juice, instead of store bought(too much sugar). Enough water
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