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Living With Sjogren's / Re: Saliwell device to increase saliva
« Last post by ghostkiwi on Today at 05:29:22 PM »
I went to the dentist today. The Salipen device instructions say to lift the tongue and slide the device under the tongue so the prongs hit the gums by the molar area and then to rest the tongue on top and close the mouth. My dentist said the reason it was causing me so much pain was because my tongue is positioned differently in my mouth than most people. My tongue rests below my gumline, so when I tried putting it under my tongue I was hitting too deep and getting the softer more delicate tissue instead of the firmer tissue further up. My dentist said I should just reach the gums by going above my tongue instead of below. Which is perfect and doesn?t hurt at all. If anyone chooses to get it, I recommend working with your dentist to find the right placement for you because the wrong place is very painful. I?m going to start using it everyday and I?ll keep posting updates.
Living With Sjogren's / Re: bowel mucose
« Last post by meirish on Today at 04:49:02 PM »
Some of the problem is not necessarily the gallbladder. It is weird but seems to be related to some really7 strange combination of autoimmune things that affect the liver. The liver makes the bile and the bile is stored in the gallbladder. I found some really in depth information about these issues one time and forgot to write down the link. They are researching and finding new things all the time,

The bile gets dumped into the colon and gives me the terrible diarrhea...really miserable. Plus other issues involved also. The joy of autoimmune. comes and goes which is a blessing. I can literally feel the colon getting attacked by the bile. I forgot what it is called also. So much for my brain.. meirish
Living With Sjogren's / Re: bowel mucose
« Last post by bluegardenia on Today at 02:20:36 PM »
thanks for opinions; no problems with gallbladder just checked with ultrasound and blood tests, no new medicines , no new food, no milk.  everything started last summer when  they gave me a very strong antibiotic Bec in the emergency at night they thought I had a diverticulitis attack. since then my gut changed and now is much more sensitive.
Hi  :)

I'm just in for a moan basically. With the virus on the go - here in the UK, normal hospital stuff is on a big go slow. I have an orthopedic referral in the pipeline somewhere. I referred by a physical therapist last January - but have no word. A different orthopedic Dr - he does feet but wont look at knees apparently - told me I needed an operation on one foot back in February but it's still on hold.

One thing that IS working is getting referrals for possible cancers. The GP has been swift here. I thought I found a lump on one breast. The GP thought she could feel it too. I was seen within two weeks, had a mammogram and and an ultrasound and was sent away with the good news that I just have lumpy breast tissue - but it's healthy.

I had a telephone consultation with a GP this morning. I made the appointment two days ago. I have a brown line down the side of a big toe nail. I emailed photos to them. I thought they may look at it but without seeing the actual toe I'm being referred to a dermatologist just in case it's a melanoma under the toenail. As they are rare - it probably isn't. So I'm going to get to see them within two weeks too. Waiting for a phone call or a letter.

It's on the foot that needs an operation anyway.

Thanks for listening. Take care - Scottie  :)
Living With Sjogren's / Re: bowel mucose
« Last post by Scottietottie on Today at 08:21:16 AM »
Hi  :)

Check all the medication you are on just in case a possible side effect is diarrhea. I was on a painkiller at one point and developed terrible diarrhea but not straight away. Neither I nor my doctor put two and two together and I ad a miserable 6 months.
Eventually weaned off the painkiller which was for something specific and i no longer needed it. A few months later I got tendinitis in one shoulder. It was very painful and I remembered he painkillers I had left over. I only took two and the next day the diarrhea was back. Twas like a light bulb went on. I googled for possible side effects - and there it was. When I told my doctor she was sceptica because she said constipation was more likely.

We are, however, all very individual. I had to stop Plaquenil because it gave me tinnitus. I had to show the rheumatologist that it could by highlighting the info on leaflet inside the tablet box.

If I'd read the painkiller leaflet earlier - I would have saved myself a colonoscopy!

Take care - Scottie  :)
Living With Sjogren's / Re: bowel mucose
« Last post by meirish on Today at 01:53:13 AM »
People with Sjogrens can have abnormal mucus production in their colon. All mucus secreting organs usually have thick mucus. also it is true that irritable colon is very common with Sjogrens. It is good that you are having a colonoscopy as you need to have a baseline so that with future problems there can be comparisons in the images.

Also, be aware that the Sjogrens cam affect the gallbladder and the pancreas which can result in colon issues also. I have been dealing with several of these issues the past couple of years. I have to watch my diet and have noticed that milk products are causing more problems. I do better on the almond milk now.

Also, make sure to ask doc to do tests for fungus or bacterial infection in the colon. It is common to have these occur with autoimmune disease and especially when we take antibiotics. Good luck. Irish
Living With Sjogren's / Re: New rheummy says NO naltrexone
« Last post by trc1962 on August 12, 2020, 02:57:43 PM »
Regarding Imuran Irish is right about staying away from the med once it has effected the liver. I was also told by a doctor at U of W in Seattle that using Imuran for more than about 12-15 years greatly increases the chance of developing a b cell type disorder. At any rate, I have to take something else.

There is good news on the naltrexone front as this next Tuesday I see a doctor that is a internist and a naturopath at a arthritis clinic in town. He is a big believer in naltrexone and so I am hopeful! It will take awhile to build up in my system, but at least it will be a start. Many thanks!
Living With Sjogren's / Re: bowel mucose
« Last post by araminta on August 12, 2020, 04:49:33 AM »
Could this be irritable bowel syndroe?

Which alas a lot of us seem to get alongside Sjogrens.
Living With Sjogren's / Re: bowel mucose
« Last post by Jenny on August 12, 2020, 04:39:00 AM »
I don?t know why but I also have diarrhea several times a week.
Living With Sjogren's / bowel mucose
« Last post by bluegardenia on August 11, 2020, 04:48:13 PM »
some days ago I went to my rheumy and  I told her that a part other  many things, I often have diarrhea so she answered that she wants me to do a colonoscopy to see if something of sjogren is affecting the cells of my bowel... anybody with this??
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