Sjogrens World Forums

Hi, everyone.  First, let me apologize. There has been a lot going on in my life this year and I have not been very active with the group. I see a few people I still know on the forum.  I have not been on chat for a while now as I have been working with clients and two Thursday evenings a month I am required to spend with the Contra Costa County Genealogy Society.  It seems that the chat night may not be going on any more.  Sad.

Besides falling while sitting in my upright walker, death of my mother-in-law, my husband getting his second kidney stone, and him totally our car, I have been extremely fatigued and my mouth is getting drier, seem to have developed insomnia, and gastrointestinal problems (nothing new).  I thank my lucky stars that my neck surgery (2 years in December) has held together even with the fall.

Right now I am dealing with cellulitis and possible abscess. This is the second time it has happened.  I don't think it is typical for Sjogren's to cause it, though I see that cellulitis can cause you to have Sjogren's.  My questions is, if any of you have had to extend your antibiotics more than one week, and it seems to heal more slowly (probably due to Sjogren's).  It has reoccured again at a very difficult area of my body that does not seem to be able to fit a warm compress, but I am doing everything right to get it to heal.

1.  Bactrim for seven days.  2.  Mupricin antibiotic topical ointment.  3.  Warm compresses. 4.  Cutting out sugar and fried foods.

I just want to hear if anyone else has a slower healing process because of Sjogren's.

Dear Heidiaj,

Nightmare, beyond nightmares!  You must be at your wit's end, for very good reasons.  I'm going back over your post to read about your experiences. 

OK, I've never heard of most of your tribulations. I will read up on them after my post.  Your stomach volvus is terrifying.  You could have died!  I'm glad the surgery saved you, but I'm sorry it wasn't the end your horrors. The feeding tube, more surgery to repair your hernia and put a mesh around your esophagus, and your food goes right through you!  I wonder that you can ever leave the house.

I had to look up the tests you've had for calprotectin and lactoferrin, indicators which show the horrible stress in your in your gastrointestinal system.  Both ischemic colitis AND diverticulitis! How do you keep your weight up?

I have issues with my gastrointestinal system from autonomic Polyneuropathy.  My neuropathy attacks the organs and systems in my body, starting with Sjogren's in 2002, which took out my moisture system, as you know.  Then my bladder lining is inflamed and bleeding. 

And the worst came in 2008 when the nerves in my legs were attacked, killing two out of three main nerves in my lower legs. I have progressive polyneuropathy, even my skin is attacked leaving me with a condition sometimes called "skin on fire".  I take 3600 mg of Gabapentin Every Day, which gives me relief.  At 82 I am unable to walk and confined to a Power Wheel Chair.  I have zero ablility to stand unsupported for more than 3 seconds!

The scariest thing started in 2008.  My small intestine spontaneously closes (probably nerve damage?).
It has happened 3 times.  I must immediately go to the hospital, where I have a nasogastric tube to keep my stomach empty since nothing can go down past the blockage, an IV for fluids, and of course nothing to eat.  We wait to see if my small intestine will spontaneously open, then all is well.  But I spend 3 nights in the hospital, the NG tube is awful.  If my small intestine doesn't spontaneously open surgery will be necessary.  But all three time it opened on its own.  The thing is I never know when it will happen again.  The last time was in the middle of the night on Memorial Day weekend.

THEN in about 2017 I developed Small Intestinal Bacterial Overgrowth.  My small intestine is supposed to sweep the 'bad bacteria' into my Large Intestine, but it has nerve damage, so the Bacteria builds up and gives off gasses, which are painful and sort of like Celiac (which I don't have).  I diagnosed this from talks here at our web site by others, and my gastroenterologist ordered the tests.  I was positive for SIBO.  The good news is that a course of the right antibiotics kills the bacteria, they start building up again, requiring more antibiotics.

THEN I developed problems with my esophagus which suddenly stops moving the food I'm eating and it backs up into my. mouth.  I also sometimes have achalasia, which is when the valve at the bottom of my esophagus doesn't open properly.  A Balloon was inflated to open the valve and then Botox (of all things) was injected all around the bottom of my esophagus walls to relax the muscles.

I have autoimmune polyneuropathy caused by Cytokines attacking my body. This is an autoimmune condition and it gives me profound fatigue.  There are no cures and very few treatments

AND my Immune System is deficient and every four weeks I have an infusion of IgG to replace what's missing.  It does keep me from getting sick all the time.  I started the infusions in 2013...and I'll never stop them.

Unfortunately 25% of the people with my Immune Deficiency develop COPD.  So I have that now.

Both diverticulitis and colitis are autoimmune conditions, Heidiaj.

I always look for supportive forums for my conditions, but they aren't very good, I've found.  I imagine you would find it difficult to find a Forum that addresses all of your conditions.

This forum isn't at all like is was when I found it in 2010.  I think that so many doctors now think about Sjogren's now and people are not waiting 5-7 years for a diagnosis and treatment.  So there aren't many new people frantic to find support.

Most of the people here are the small percentage who go on to have many additional autoimmune problems and reading their posts has helped me immensely. 

I hope you hava some respite from the constant diarrhea.  My husband has microscopic colitis and I'v seen first hand the effect it has has on his (and our) life.  We've been married 62 years.e

Keep in touch and best wishes.

Elaine (aka Carolina)

Thank you, araminta, for responding to my post, and I appreciate your empathy regarding my situation.  My sympathies to you for having had a Christmas diverticulitis bout in the past. I've been hospitalized twice for those, and it was NOT fun!  I am a bit nervous about what my holidays this year will look like. I have been looking forward to Halloween this year, though, only because I will FINALLY get to see a top gastro doc in the state to discuss my situation. I have been working with a nurse practitioner who works with him, but he is very hard to get an audience with, so that's one "win" to look forward to. You mentioned Sjogren's fatigue...I have always been aware of how it has played a part in my life, but now the fatigue is at a whole 'nother level.  I need at least 11 hours of sleep to even function.  Then I get up and can at least do a few little things.  I have to give myself a little break on this, as I know my body has been fighting quite a battle this year.

I am sorry to hear about your auto-immune arthritis.  This illness sure knows how to challenge us in our daily lives.  I have not tried acupuncture, but a friend did suggest it a number of years ago. And I appreciate your mentioning the meditation you do, and the need to stay positive. I do have a life long history of faith, and truly need to reinstate a regular, daily habit of spending time in that.  My mother, who was a church organist, gave me a wonderful example of that.  Her time with God was @ 5:30 a.m.!  My friend jokes about her sister, who gets up at the "crack of noon!"  I'm on that schedule now, and really need to crank that back, especially with daylight savings time coming soon enough. 

Again, thank you so much for reaching out with positivity and best wishes!  Your reply is what I came to love and respect when I used to spend more time on this site!  Take care!   ~Heidi

Thank you for this post! It reminded me of my early days of Autoimmune disease, when I did take collagen supplements, with good effect, when my diagnosis was Sarcoidosis and inflammatory poly arthritis.

As Other Dx were added, and treatment escalated to steroids, MTX and DMARDS, the collagen kind of fell away, but now, having reviewed some recent research, I plan to restart it. One new thing I found, which is very timely for me, is that it seems to improve bone density in post menopausal women, and since I was recently Dx'd with osteopenia (25 years post meno!) I'm hoping to use collagen before having to possibly take bisphosphonates.

This article from the Arthritis Foundation has some useful information.
https://www.arthritis.org/health-wellness/treatment/complementary-therapies/supplements-and-vitamins/can-collagen-supplements-help-arthritis

Hi. I was listening to this episode of the Huberman Lab Podcast:

https://www.hubermanlab.com/episode/dr-craig-koniver-peptide-hormone-therapies-for-health-performance-longevity

in the Youtube video, at 19 min, is a section named "BPC-157, Inflammation" that I think is very interesting for us if really this peptide BPD-157 do really functions as an antiinflammatory substance.

On the other hand, I was wondering if some of you is using collagen (a protein) supplements, that other people claim is useful for improving pain in the joints.

Any of you have any experience with these substances?

I have been diagnosed with vasculitis, and occasonally have a very localized outbreak of hives that I can't specifically relate to areas of vasculutis, but I also have a Dx of puritus, which, if I give in to the temptation to scratch, will often produce hives. The puritus and hives never seem to respond to antihistamines, so I have a prescription for a mast cell inhibitor, and I've found that increasing my Vitamin D and Magnesium (both mast cell stabilizers) has reduced the frequency of occurances.

This all started prior to my diagnosis of Sjogren's, but after Sarcoidosis, so it's always been considered part of that disease process, but with Autoimmune, really who knows?

I have been diagnosed with Sjogren's and have periodic hives. This latest outbreak seems different. Has anyone been diagnosed with urticaria vasculitis?

My immunologist put it bests:  we use the tests we HAVE, not the tests we NEED.  In my case I have severe autoimmune problems, but not elevated autoantibodies!

Autoimmune means that our immune system attacks our selves, Auto means self.

My immune system doesn't use auto antibodies to attack me, it uses Cytokines.  BOTH are products of the Immune System.  But all the tests for autoimmune diseases do not test cytokines, only autoantibodies.

Just remember this when you are dismissed as having "no autoimmune' disease.

My immunologist is professor at Duke Medical, doing research in CVID, teaching graduate students and medical students and seeing only patients with CVID.  She is brilliant and know her stuff.

She identified my Primary Immune Deficiency, and I now have infusions of 50 grams of Gamma Globulin EVERY 4 weeks, since 2013.

But the Gamma Globulin only keeps me from getting infections month.

YOU know what's happening to you, but they are probably using the only tests they have, not the tests you need.

It is so hard when doctor's dismiss us because of their ignorance.

Elaine

Hello Heidiaj, I've been watching to see if anyone replied to you with similar issues, but see that no-one has yet come forward.  So thought I'd just send some sympathy and best wishes to you.

I've not had such extreme gastro-intestinal issues as you, but I've had irritable bowel syndrome for years, and had diverticulitis a couple of Christmases ago (a lovely time of year to get it  ). These issues do affect our day to day life, and I can well understand how you feel stuck and housebound at the moment.  Of course the Sjogrens fatigue does that to us too.

Most people here seem to have multiple issues with Sjogrens, if it's not one thing it's another.  In the past two years I have developed what seems like a kind of auto-immune arthritis, with one hand or the other occasionally swelling up painfully, and me generally feeling unwell.  I have unpleasant sweats sometimes at night, and of course the dryness issyes are always there.

It's good that you're seeing a counsellor.  I also wondered if you'd tried any alternative therapies such as acupuncture?  I've never tried that myself but it does seem to help a lot of folk.  I do a half hour's meditation most days, it's helpful.

Try to stay positive, getting depressed never helps and can make things worse, while a positive and hopeful attitude speeds recovery.

Hopefully someone with some specific medical knowledge about your issues will reply in due course.  In the meantime I am sending you positive vibes and very best wishes!

Hello to everyone!  I think it's been quite a long time since I've been on here, and it is REALLY good to find my way back!  I remember soooooo many wonderful people who responded to posts I made in the past.  The warmth and understanding that others showed were breathtaking!  I'm looking to see if anyone can understand the nightmares I've been going through since 2021, and especially this past year.  I know in the past, I looked up whether there were many gastrointestinal issues that were directly related to Sjogren's, and couldn't find much of anything.  Here's my brief story:
March '21 - Had what is called a gastric volvulus, where my stomach twisted (happens actually in dogs and infants), became unattached, and burst through a hiatal hernia I had that never gave me much trouble. My stomach landed in my chest, cutting off the blood flow to my heart and lungs.  Had immediate surgery to pull the stomach down where it belonged, and repair the hernia. A month later, I had symptoms again, and had testing that revealed that my hernia had opened again.
August '21 - Found a different surgeon, who did a 2nd surgery.  He felt that if I had a feeding tube for 8 weeks, the scar tissue from that would help secure the stomach in place.  He did that, and also put a mesh around the esophagus and repaired the hernia.  Two month later, I went to Florida on vacation for 10 days.  I had to be very careful with what I ate, for eating the least amount of fatty food, or too much food period, would result in the food going right through me. 
Now it's 2024.  I'm now 67.  I've been diagnosed with Sjogren's since I was admitted to the hospital in 2007 with agranulocytosis, and almost no white blood cells.  I believe a short one-month stint on lamictal could have brought this about.  In January of '24, I was admitted to the hospital with ischemic colitis, including bleeding within my colon. Amazingly, I was somewhat functional in February, and was on Reglan for the first time.  That didn't last.  In April of this year I was hospitalized with diverticulitis.  Since then, I have had a limited time....maybe 10 days...where I've been able to do anything socially.  I have had so many tests on what comes out of me that I'm weary (because I still have yet to be able to process food through my system).  Positive tests were for calprotectin and lactoferrin, with a Fecal Immunochemical Test (FIT) which was also positive (for hemoglobin). Things have been worse now in terms of keeping any food in me, and just in terms of overall weakness. My blood pressure is running on the low side, and I need IV fluids once a week just to be semi-functional.  If ANYONE has had ANYTHING they've learned from similar gastric nightmares, I could really use the support.  I've always been an extrovert despite my illness, but now I'm starting to lose my mind because I am, more often than not, at home, with limited abilities.  I hope to see some familiar names respond, to give me reassurance that others I remember are still soldiering on as Sjogren's warriors!!  Thanks for reading this if you've gotten this far.  I promised my counselor I would find my way back here and attempt to get some support from people who know the wide-ranging problems that can go along with Sjogren's.
Blessings to you all in your battles,
Heidi