esophogeal problems

[redmaggie]

hi there, im not sure if this is the right forum, but does anyone else suffer from food impactions, and if so did you get any treatment? (i have diagnosed dysmotility, erythromelalgia, reynauds etc etc. thought to be part of UCTD. i have auto antobodies but not specific to scleroderma) last night had a very painful impaction after a little boiled rice which lasted about 20 mins. couldn't swallow spit, lots of drooling and the constant cramp was ghastly. its hard not to panic. it happens about every month. i was seen at local gastro clinic a couple of years ago - and they did all the tests but discharged me. other than self help, eg eating slowly etc, does anyone have any professional help? thanks!

[Halfwayuphill]

Hi redmaggie,

Firstly I’m sure you are on the right forum as your problem is typical of UCTD/Scleroderma. I have had UCTD with high levels of RNP antibody for over 20 years. One of my first symptoms was problems swallowing choking etc. I now have problems with my whole digestive tract. Have you been tested for reflux or poor muscles in your oesophagus? Your rheumatologist should suggest these (endoscopy, tilt test and I can’t remember the name of the muscle one). A ct scan with contrast is another one. Perhaps when you had tests two years ago it wasn’t that bad. I found going on a ppi cleared my problem up for some years. They are right of course about chewing and small meals but this wouldn’t be enough if you have significant reflux.

Hope this helps

[redmaggie in reply to Halfwayuphill]

Thank you for your reply. UCTD is a real mixed bag isn't it? re gastro tests over 18 months i had endoscopy, barium swallow, pH, pressure test....and finally ultrasound, so that was worth the waiting. not heard of tilt test! My tests showed uncordinated contractions, high pressure and some delay to emptying into stomach. mild to moderate. no reflux so no PPI's. But now awaiting gastro again for ibs like symptoms. - 10 months wait apparently

[Halfwayuphill in reply to redmaggie]

I’ve just looked up my tests as I tend to forget the added bits of diagnosis over the years. The tilt test (my silly jargon) was a barium swallow and it did show significant reflux. Interestingly like your uncordinated Contractions a manometry showed aperistaltic oesophagus with scleroderma appearances. Recent endoscopy showed stomach contents so degree of gastroparisis like you. I gave up the ppi for three years as felt it was making my stomach worse. I got erosive damage which the ppi sorted when I went back on it. When off it my symptoms of choking on rice/bread etc all got much worse and I had it all the time. What about silent reflux? I don’t really know what that means but some of my friends have it. Nor do I know if it’s relevant to connective tissue diseases. I presume your non specific antibody is RNP?

If and when you do take a ppi I agree with the others that esomeprazole is really helpful. Especially with oesophageal spasms.

[redmaggie in reply to Halfwayuphill]

thanks for the info. both my parents had v bad reflux, and mum had barret's oesophagus in the end. they didn't ask for help for many years, just ate tons of rennies each evening, sigh. i'll probably follow on! my antibodies are anti-Ku and anti-smooth muscle - both found in various conditions , but also linked to muscle function. oh! realise as i write that may be a reason for dysmotility, but i'm no expert!

[OldTed60]

I’m so sorry you have this problem. Is this same as oesophageal spasms I wonder? I had these for a few years when off all PPI meds or too low a dose - mostly relating to swallowing cold food or drink. I still get them occasionally and they are really so scary but don’t go on as long as you describe - 20 minutes must be very alarming indeed you have my sympathies.

My GP diagnosed mine but didn’t really say the cause - I was diagnosed with primary Sjogren’s and Hypothyroidism at this time and was told it was dysmotility but now also diagnosed with silent reflux. I switched from Ranitidine to esomeprazole and this seemed to help a lot. Now diagnosed with seropositive Systemic Sclerosis but the ENT said silent reflux is more associated with Sjogren’s dryness so perhaps spasms are a mix of both. Since then I’ve been diagnosed with severe Gastroparesis, SIBO and slow transit - so I’m very much a GI dysmotility sufferer throughout. I haven’t found gastro very helpful at all but my neurologist (Erythromelalgia and migraine) got me on Domperidone - which has helped the most - although gastro moved me down to 1 a day because of cardiac risk associated. Other related CTD condition that causes swallowing problems is Myositis and I suspect I have this in my mix. But I’m maximally treated anyway so no point in putting me through tests now my rheumatologist says. If I were you I’d consider asking about motility testing and ask GP if you could try a PPI such as esomeprazole or famotidine perhaps? Also maybe try to see an ENT?

[redmaggie in reply to OldTed60]

thanks oldted60 for the detailed reply. you have a lot to cope with, so all best wishes managing your illness. the spasms are horrible but luckily its not happened in public. any longer i'd get someone to take me to a & e. Re diagnoses, i suspect that much of the time consultants are not sure what's going on, the causes and so on , so they are quite happy to push you on to another department. once i had all my tests dysmotily/spasms and outflow delay was diagnosed the verdict was it's your UCTD, so discharged. just a recomendation of domperidone, but im not keen on it given the small risk. i didnt have gerd, so i only take omeprazole when having gastritis......im recovering from rotator cuff surgery, so its useful to hear from you guys. i dont have the energy to see a dr right now! take care.

[OldTed60 in reply to redmaggie]

If I were you I’d still consider silent reflux. It mostly affects the throat and larynx so is symptomless, unlike GERD. I’ve just been reading about it for myself as having many more issues which I think might be related including laryngitis, dental erosion and pain in my windpipe and in my back. Nutcracker spasms are definitely a symptom for me.

my.clevelandclinic.org/heal...

[redmaggie in reply to OldTed60]

will do! good luck.

[Buttsy]

morning,

I like you struggle from time to time, I was under gastroenterologist and like you he did test changed my reflux medication to Esomeprazole and discharged me.

I am also under ENT for swallowing issue , due for a review in a few weeks , they keep there eye on me and advise., check throat with scope , did barium swallow ect.diagnosed laryngeal reflux, dysmotality .

It is scary when it happens.

I find I need to drink lots of water during a meal, eat slower, chew more ect.

I try coke if nothing else helps, the bubbles seem to help release any stuck food.

So maybe ENT could help.

Good luck

[redmaggie in reply to Buttsy]

hi buttsy, thanks for the tips. I hadn't thought about ENT department for this problem. I'd ask my Gp but can't face it. I have a gastro appointment coming up for IBS symptoms - but a huge wait.

[Buttsy in reply to redmaggie]

Hope you get sorted , I understand how you feel about asking the GP but I just think, no harm in asking.

Good luck

[Skrubbah]

hiya, I have systemic sclerosis and also have poor motility. I find rice an absolute nightmare and can usually only mange two or three forkfuls before it feels like I am eating glass. Risotto rice is fine. I drink a pint of water with my meals. Bread also causes the same problems. I find wetter meals are better. If you like rice then maybe try something like orzo as a substitute ? If find that is easier to swallow. Good luck!

[redmaggie in reply to Skrubbah]

why is rice so bad? you would think it harmless! mashed potatoes, bread chicken breast are other culprits. i'm usually careful but get caught out sometimes! good luck to you too!

[Jaq1971]

Hey Red Maggie

dysmobility of my oesophagus was one of my first symptoms it is awful would feel like I was choking or the food would just sit there I have espmoprazole and domeperidone for my symptoms,,complete game changer although I still struggle with some foods this has really helped me I had barium swallow test and camera down my throat which showed thickening and slow transit go back and ask to be retested I also have gastrotitis again I have been diagnosed with systemic sclerosis and now also rhemotoid athritis alongside a heptic liver causes from autoimmune problems. My advice is to push back as these things can change over and over and what they didn't see two years ago the may well see now good luck, also as others have said some foods you may have to avoid and small mouthfuls plenty of water in between bites sending love please keep us posted.

[redmaggie in reply to Jaq1971]

thanks jaq1971, sorry to hear of your problems. yes, i will chase up my second gasro referal, as problems are building up. best wishes.

[SallyinourAlley]

Hi there! It does seem as others have suggested that the problem could be with the muscles in your oesophagus. I have a lot of problems with my guts generally, including wind which does not want to come up, and reflux, I tried chewing mastic gum, which is recommended for reflux, and the most enormous belches resulted, after which I felt so much more settled! These days i chew some mastic gum whenever my oesophagus feels uncomfortable, or if I have gas lower down. It really helps.

Mastic gum is very simple to use - you just pick up a pinch or two of the crystals, let them take up some moisture in your moth and then chew for as long as you like! You can buy it on Amazon, where they also sell mastic gum in capsules. I haven't tried those as I think the chewing action is important. You can also buy chewing gum from any corner shop providing you don't have problems with sugar or sugar substitutes

[redmaggie in reply to SallyinourAlley]

thanks for the tip, i've never heard of mastic but have just looked it up on wikki - very interesting! like you my gut have been problematic especially this year and I am on a looong wait for non urgent colonoscopy.

[SallyinourAlley]

Good luck!

[Gdonnelly]

I just have meds but mine is also bad reflux & heartburn. I take sucrolfate suspension, nexium 40g twice daily & famotidine. If I have a bad attack of reflux I sip hot water - apparently it widens ur tubes.