Digestive Issues

[AMDP]

Hi, Can you help please? I’m struggling so much with my digestion right now. I’m on PPIs and ranitidine, I can’t eat meat or fish, nuts, biscuits and bread get stuck but right now eating anything is painful as if my gullet is sore. Can anyone suggest something that might help me please?

[amc282]

I am struggling with increasing dysphasia. I find even rice is giving me grief. I am try to eat more soups and softer foods to ease the swallowing and digestion. You might just need to adjust the method of preparation and do more smoothies and puréed items?

[AMDP in reply to amc282]

Thanks. It is heartbreaking isn’t it? Ax

[MissusTee]

I have huge problems with my guts, get significant weight loss and vomiting and pain. After some tests it was discovered that I had SIBO and I have to take antibiotics periodically to stop it.

[AMDP in reply to MissusTee]

It is so heartbreaking. I shall look into SIBO thanks Ax

[Atu8]

Have you tried omeprazole vs ranitidine? I found that helped.

[AMDP in reply to Atu8]

Yes thanks I’m on both already Ax

[Sanmateogirl107]

have you done gastric emptying ask your doctor i can not eat solids either it gets stuck i am doing gastric emptying april 16th. try making smoothies, soft diet, mint tea and altoids 1 hr before you eat allow it to dissolve in your mouth and swallow it. hope that helps hugs for a better day julie

[AMDP in reply to Sanmateogirl107]

Thank you. I will ask Ax

[Ernest2]

Silly question, if this is a new symptom, have you been checked out by a GP.

Wishing you well,

Ernest

[AMDP in reply to Ernest2]

Not a silly question. I’ve had it for a few years but my medication seems to have stopped working so it has flared up. Doctors don’t really know what to do with me and my rheumatologist can’t seem to find any new meds for me to try 😢😖Ax

[Ernest2 in reply to AMDP]

Really sorry to hear all that.

I'm just wondering - Has the GP referred you to a throat specialist as part of all that? (Please ignore me if you think that is a dumb thought)

Wishing you well,

Ernest

[AMDP in reply to Ernest2]

Thanks

[Hidden in reply to Ernest2]

Hi Ernest. ENT specialists don’t seem to know much or be able to offer any good suggestions for people with scleroderma and Sjögren’s unfortunately. I’ve seen three so far and they all just shrug and blame dryness. I think a good gastroenterologist who understands these diseases is probably more important but I haven’t found one yet myself.

[Hidden]

Hi AMDP. I have a very similar problem and finding it similarly soul destroying. I too am on PPI. I stopped taking Ranitidine when supplies dried up due to some scare in US I think. I told the oral medicine specialist I’m under for Sjögren’s and she blamed the dryness of Sjögren’s and related neuropathy (like burning mouth syndrome only it also affects my peripheries).

She wrote to my dermatologist about my because I have to use a chemo cream off licence on my lips every few months to prevent it turning into invasive squamous cell carcinoma. My dermatologist wrote to a colleague in London who is apparently the lead derm specialist in skin diseases affecting the lips and oral cavity.

This specialist replied saying that, given my overlap CTD of Sjögren’s and systemic sclerosis - I would almost certainly have some form of candida in my system. So she suggested I be given a prophylactic regime to heal or prevent this issue. I’m now prescribed Nystan and Fluconazole as oral suspensions and I am instructed to use Nystan 4 times daily after meals (however small) and fluconazole at night - both for one week out of every month.

I’m also on a heavy duty regime for my bowel dysfunction and am to have gastric emptying studies in a few weeks time at my rheumatologist’s request - to see if I have gastroparesis. I don’t think it’s SIBO in my case because my husband says that, despite the foul taste and sensation in my mouth and throat - my breath isn’t smelly at all.

I’m not sure whether any of this is helping yet as I’m still struggling to eat much and find all savoury foods makes me gag. For some reason sweet food isn’t so bad but obviously I don’t want to destroy my teeth or suffer nutritionally so I try to make sure I consume mostly healthy, nutritious food either in the form of soup or smoothies or else I slowly nibble dry food such as corn or rice cakes with some small amount of spread such as Manuka honey or soft cheese and a huge glass of water. I am losing weight quite rapidly because most food tastes strange to me and feels like cotton wool.

Personally I think it’s the mix of dryness and silent reflux and perhaps a Bezoar somewhere in my GI system. I’m not sure the candida regime is doing much but both meds taste nice at least! It’s depressing to feel nauseous most of the time and dread food. Thick soup like baby food makes me gag so really that just leaves tiny quantities of stuff that I can taste and nibble very slowly with a lot of water. I also find pilocarpine helps a bit with lubrication as long as I don’t take it before sleeping or I choke.

[AMDP in reply to Hidden]

Soul destroying is right 🥲 I don’t want to spend the rest of my life making soup. 😭😤😖 x

[Hidden in reply to AMDP]

Me neither. I have started hating soup. Can you dunk bits of something tasty in it perhaps? For me it’s the rotten mean cotton wool texture of stuff I can’t bear not so much the throat/ swallow mechanism. I just have no appetite. X

[AMDP in reply to Hidden]

Such a pity you have no appetite but I know what you mean. It is so miserable and slowly but surely everything I enjoy is being taken from me by this disease 🤯

[Hidden in reply to AMDP]

Me too. When I first got diagnosed with one of my chronic autoimmune diseases, think it was Sjogrens, I called a charity helpline for some support. I always recall this woman saying to me “this disease may not kill us but it doesn’t half take the joy out of living”.

That really stayed with me and seems to apply to my new loss of appetite - it means I’ve got less appetite for life.

But no doubt it’s just another thing one finally adjusts to over time like tinnitus and chronic constipation and Raynaud’s - or possibly/ hopefully it just slowly improves or resolves - but best not expect this as that way lies more disappointment. X

[AMDP in reply to Hidden]

Can I ask how old you are? I’m 62 and while it feels like 💩 to me I can only imagine how devastating it is for someone younger x

[Hidden in reply to AMDP]

Im only a bit younger than you - 58. But my overlapping autoimmune diseases all started when I was much younger I can see with hindsight. I think in some ways it’s easier to bear if you’ve never known different like me - than if you have late, aggressive onset. X

[AMDP in reply to Hidden]

I was 30 when I was diagnosed with ME then other autoimmune issues and it’s been down hill since then x

[Liverbird41]

Hi, sorry if this is late as I only joined the forum today. Dilation of your throat may help to ease the dysphagia (swallowing issues). I take lansoprazole when I need it for my acid reflux. Thankfully I can still eat most things but from to time I do get flares of symptoms.