I'm complicated!

[Sinelg]

Thank you for the lovely welcome. Maybe I should give a bit of background first. I have quite a few auto immune things going on, as well as other bits and bobs, so I'll just do a quick list! UCTD, Lupus, Systemic Sclerosis, Septic/Osteo Arthritis, Fibromyalgia, Hiatus Hernia, Sjogren's Syndrome, GORD, Dysphagia, Chostocondritis, Piriformis Syndrome, Bronchiectasis - I could go on, but I think that's enough to be going on with!

I found you quite by chance and I'm so glad I did. I'm having a lot of problems with swallowing, and feel as if my food is just stuck, then I feel like I'm choking. It's really scary as I live in my own, and sometimes it takes ages to get rid of it. I can't swallow what's there, but I can't bring it back up either, I just have to sit and try and control my breathing until it passes, but it does frighten me. If you're not sure what it is, the Sjogren's means everything is dry, (and I mean everything!) so I have no saliva and the dryness is now going down my throat. I'm constantly drinking water, but I even have trouble doing that sometimes. Add to this the Hiatus Hernia and the reflux, plus the chest problems, and I'm a bit of a mess really! I had to go to the speech therapy and language department, and they did the barium swallow thing, but then I've been left high and dry and had no follow up, so the next thing is talking to the GP and see what he thinks my next move should be.

Sorry I've gone on a bit, but it's so nice to have people there who understand how it is, thank you x

[Mary-intussuception]

Hi Sinelg

I don't have Sjogren's but do get the food getting stuck and choking sometimes. I have to remind myself to chew for longer.

I should imagine that any dry food such as bread or cake / pastry is out of the question for you. I can't even imagine how you cope - do you have to spray water into your mouth before every mouthful or eat only liquid foods and drinks? I know the artificial saliva sprays are horrible because my Mum was prescribed them but the nurse warned that it is better to continually sip water.

About being left high & dry with no follow up, didn't the doctor who did the Barium Swallow say anything? Why not phone xray department in the morning and ask for a copy of the report. Or phone the Consultant's secretary and ask when you will be seen next?

How did you cope with swallowing the Barium meal? I had such difficulty as it kept bouncing back.

xx

[Mary-intussuception in reply to Mary-intussuception]

ps

Reply page 2!

I don't suppose you are able to take Gaviscon Advance are you. After your main meal and last thing at night?

Did you take a PPI? I have Zoton Fastab orodispersible lansoprazole.

[Sinelg in reply to Mary-intussuception]

Sorry, I didn't see this until I'd hit send!

I should have said earlier, I already take Lansoprazole Orodispersable tabs 30mg, twice a day. I wouldn't survive without it, and hope I never have to try! x

[Mary-intussuception in reply to Sinelg]

That's a lot for long term isn't it? I had 60mg (twice normal maximum dose) short term for acid damage in throat - to Arytenoids.

Are you on Zoton or generic alternatives?

[Sinelg in reply to Mary-intussuception]

It was Zoton up until about 3 months ago, then the chemist kept messing it up. They said they didn't keep it in stock as I was the only one on it, so it got a bit difficult. Now I'm on a generic one so I never know which make I'm going to get! I do prefer the Zoton though x

[Mary-intussuception in reply to Sinelg]

If you have problems with the generic tell the pharmacy and tell the doctor. I have had to fight for mine, several times. I recently had urgent referal to ENT, so whilst there I asked him could he write to doctors and have it put on my prescription, he did and gave me a presription for 3 months there and then.

They say they are a little more expensive but they won't let you pay the £1 difference. I haven't found out who to write to in our Health Authority yet, they changed address. As we need to get my husband's on prescription permanently, so have to appeal to health board , I think.

Zoton are faster acting and dissolve better. The generic, I think, are copies of the orodispersible bit but not the Fastab.

[Sinelg in reply to Mary-intussuception]

You could be right there. If you need contact details for someone, I would suggest you try PALS. A couple of times in the past if I've had problems, I've contacted them, and they've always been very helpful

[Sinelg in reply to Mary-intussuception]

Hi Mary, thanks so much for your reply.

You're right about dry foods being difficult, chicken is something I don't eat anymore. I don't spray water, but I drink constantly, more or less after each mouthful. I've also not drunk anything hot for many years as that just makes it worse. I don't eat a lot of things that I used to enjoy. Anything with the slightest bit of spice is out, and my favourite fruit, pineapple, has gone too, the last time I tried it, after two small pieces my mouth was bleeding. It's not good.

Thanks for your suggestions re: the Barium Swallow, I've already tried a couple of things with not much success. However I'm seeing my GP this week, so will be asking him about it. The B. Swallow was awful, and wouldn't want to do it again!

Thanks again x

[lynnbibb]

Hi Sinleg,

I'm sorry to hear of all your problems, it must be very difficult for you.

My husband had an Ivor Lewis op, (gullet removed and a third of his stomach) in January and has problems with food sticking. He finds sometimes sipping small amounts of fizzy pop helps to dislodge the food.

Sorry I can't be of more help. Good luck.

Lynn x

[Sinelg]

That's very kind of you, thank you. I've never heard of the op you mention, and don't usually have fizzy drinks, but it's certainly worth giving it a go. I'll report back if and when I've tried it.

Thanks again x

[Hidden]

It is quite complex for the doctors, and indeed everybody else, most of all you, when so many things are going on, and I cannot claim to know anywhere near enough to be able to give any advice.

But I wonder whether any of the various medications you are on have side effects or might counteract each other and give you problems? Sometimes a talk with a pharmacist can be helpful.

There may be a surgical solution to the reflux / hiatus hernia issues, and if this could alleviate some aspects of your symptoms it might make your life a bit easier? But it would need to be carefully thought through with an eye for priorities and the long term.

And then I am wondering whether some of the ideas in the OPA recipe book might be helpful in trying to take in nutrition when swallowing is difficult?

opa.org.uk/downloads.html

[Sinelg in reply to Hidden]

Thank you very much for the link. I've downloaded the recipe book as you suggested, as well as a couple of the others. At the very least it should provide me with an alternative to soup!

I spoke to my GP today, and he said there hadn't been any letter about the results of the Barium Swallow that I had, and suggested I contact the secretary of my rheumatologist, as it was he who referred me.

I also think I need to take up your suggestion of looking into the medication side of things.

Thanks again

[Mary-intussuception in reply to Sinelg]

Hi again.

I know that your dry mouth is because of one of your medical conditions, but you have remembered that a possible side effect of Lansoprazole is dry mouth and throat haven't you?

[Sinelg in reply to Mary-intussuception]

Oh yes, I know that, but I have Sjogren's Syndrome, which makes everything dry - hair, eyes, nose, mouth, skin and vaginally - it's quite a list! Thanks.

[Mary-intussuception]

How accessible is the Speech Therapy and language Department? Could you phone them directly and ask about Barium Swallow results.

I applied for a copy of my hospital records. That's how I found out about what conditions I have. I requested them within 40 days of last being seen so did not pay a fee on any occassion.

[Sinelg]

Having spoken to my GP I'm going to ring my rheumatologist's secretary and see if she can help, as it was he who referred me. Thanks for your concern