Author Topic: interesting info on GI issues with website  (Read 843 times)

meirish

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interesting info on GI issues with website
« on: November 01, 2021, 10:25:53 PM »
I have to give you some information that I just came across. I was doing a search on 3 different gastrointestinal diagnoses that are out there. I have suffered from IBS since in 20's before the autoimmune was so bad. Also, have had a fair amount of testing done about 6 years ago when my issues got worse. Things have just increased  and when I moved this summer the stress really hit my GI tract. I found a new doctor who seems very good and is in a big GI clinic that has over 100 specialists. This fellow seems to like autoimmune GI diseases so he may be a keeper.

I have diagnoses of EPI which you will hear advertised on the radio. This is Exocrine Pancreatic Insufficiency which is probably because of the Sjogrens. I have also done some research and found a couple of other GI issues that sound like a lot of the ailments many of you have. They are BAM, which is Bile Acid Malabsorption and Bile Acid Diarrhea which I think is a possible diagnosis for me as I am not confident of the EPI. Time will tell as will have colonoscopy and a lot of biopsies and cultures done in the near future.

I also have AVM's which are Arterial Venous Malformations on my small and large intestine. These are capillaries on the wall of the colon that literally rupture or spring a leak. People will have these in their brain and when they rupture they are called an aneurysm. They will bleed at different times and sort of seep and one can't tell when they are bleeding by the looks of the stool. It is sort of a feel and tell thing as in dizziness, weakness, heart palpitations, etc. The treatment is get Hgb done often when suspicious of bleeds and then have a colonoscopy when it is down below 9 or so. Depends on how things take place. I couldn't have a colonoscopy this summer when I was just about ready to move so I had 2 iron infusions one week apart. I have had quite a few infusions and one blood transfusion over the past 3-4 years. These areas can cover a fairly large area at times and are cauterized off with laser.  At one time I had 6 different areas lasered and sealed with clips that fall off eventually. It is a nerve wracking situation that makes one always conscious of how you are feeling.

So I have the GERD which probably caused a GI bleed this summer plus the AVMs and then these other issues. Nurses always have a saying that when we are young we think of sex and when we grow old we think of our bowels. I guess I have reached that old stage big time. Just thankful I don't have Crohns.

You can search Very Well Health and article Understanding Bile Acid Health, This article is very good and inspired me to do a search on Bile Acid Diarrhea and Exocrine Pancreatic Insufficiency. I always take notes on things I am interested in. It would be a good discussion if those of you who choose to do a search could come back and we could have some on-line discussions about theses issues. So many people with autoimmune have colon problems of one kind or another. I think these are very apt to fit the description for some of you and reading these articles might help you approach your doctors with more knowledge on how to express your problems. Thanks. meirish

Maria3667

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Re: interesting info on GI issues with website
« Reply #1 on: November 07, 2021, 03:38:57 PM »
Thank you for posting this informative topic.

For ages I've also suspected a link between gut issues and dryness symptoms. Why? Simply because they started simultaneously. First I had irritable bowel syndrome (diarrhea), when I beat that Sjogren's (sicca) followed and then severe constipation came to boot.

Because of a hereditary disposition, I've had 3 colonoscopies and had 16 polyps removed.

But no rheumatologist ever inquired about my bowels nor asked for a stool sample. If they don't investigate, we'll never know!
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

meirish

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Re: interesting info on GI issues with website
« Reply #2 on: November 07, 2021, 08:37:18 PM »
 A Rheumatologist will probably not refer you to a GI doctor unless you request this and then I would not hold my breath as they are more interested in the collagen tissues which is what the Sjogrens affects such as rheumatoid arthritis, lupus, etc. Your primary doctor is  probably the one who will refer you to a Gastrointestinal doc if you are complaining about colon issues. I have had precancerous polyps also but not to the extent that you have.

If you have colon or stomach issues with symptoms that are causing you discomfort or misery then it would be wise to let your primary doctor know that Sjogrens can affect the Gastrointestinal system. The major issue that many people have  GERD or reflux with bad heartburn. With Sjogrens this is usually caused by the decrease in mucus secreted in the mouth and in the stomach. There are mucus glands in the stomach and esophagus that are affected just like the decrease in mucus secreted in eyes and mouth. This causes the acid in the stomach to not be diluted by mucus which results in the acid content eating away at the lining in the stomach and the esophagus. There are so many doctors that are not aware that this happens.
We need to gently inform then that this can happen and also have copies of information explaining this issue so they can read it. Try to find articles from universities or doctors studies.

We need to reasearch these autoimmune diseases when possible as we need to be aware of the symptoms of diseases and what causes them. We need to advocate for ourselves and make sure that we keep track of what is going on with our body and let the doctors know. We also have to know when we need to get assertive with our doctors to make sure that we see the right specialist. It can wear us out trying to keep up with our ailments at times. I have gone through many times over the years when I just have to back off on seeing a doctor for a while just to rest up and not have to think about dealing with this stuff for awhile.

Also, be aware that we can also have issues with our Gastrointestinal tract and other organs that have nothing to do with Sjogrens. It can be hard identifying the difference in GI issues at times and takes patience not to over react. I know I have over reacted at times just because of stress from being bombarded with so many issues in too short a period of time. Sometimes we have to remember not to be too hard on ourselves or our doctors as autoimmune diseases affect everyone differently and can be hard to navigate through. Take care and good luck. meirish

Maria3667

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Re: interesting info on GI issues with website
« Reply #3 on: November 08, 2021, 09:50:41 AM »
Yes I hear you! .... As the digestive process within the mouth hampers, it's only logical that other organs along the digestive track will be effected too (sooner or later).

Thank God I do not have GERD anymore but I gave up on dairy, coffee, orange juice, alcohol, sugar, white flour products (pizza, pasta, croissants, pastry, biscuits, etc.), white rice, etc. But I know how painful it can be!

Like you, I sometimes get tired of advocating!

The good news being I read (somewhere) gut-issues are now being looked into in relation to autoimmune diseases. Hopefully they'll make a new discovery SOON that will lessen our burden.

God bless!

53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

meirish

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Re: interesting info on GI issues with website
« Reply #4 on: November 09, 2021, 05:19:41 PM »
Gut issues have been known for many, many years to be caused by autoimmune issues. The interesting thing is that they have now proven (have been saying this for years) that the intestine produces a goodly amount of the chemicals that are found in the brain that get low in depression. This is interesting also as they have been researching for some years and will some day prove, I believe, that depression is an autoimmune issue.

My now retired immunologist has been associating depression with autoimmune diseases for years due to the fact that it shows up with many of the individual symptoms of an autoimmune disease. Chronic diarrhea has been found to improve when a patient is treated with newer antidepressants, like Zoloft, etc. This group of antidepressants were introduced in the early 1990's or so and I can't remember the name of the family of their types. Old age or else autoimmune memory!!! Good luck. meirish