Author Topic: Sjogren's Syndrome and Digestive Problems  (Read 236 times)

vrystaat

  • Jr. Member
  • **
  • Posts: 63
Sjogren's Syndrome and Digestive Problems
« on: July 06, 2018, 10:10:34 AM »
Not much has been written here about gastrointestinal problems in SS. I have Lymphocytic colitis, Esophageal reflux, Dysphagia, Inhaling food, Autonomic dysfunction, Pancreatitis and gastritis. I would like to hear from the forum on their GI problems. I would use it for research only.

Review:
 Inflammation in the esophagus, stomach, pancreas, and liver can cause problems such as:
- Painful swallowing
- Heartburn
- Abdominal pain and swelling
- Loss of appetite
- Diarrhea
- Weight loss
- Small bowel Bacterial Overgrowth (SIBO)
- Inflammation can also cause hepatitis (inflammation of the liver) and cirrhosis (hardening of the liver). Sjogren's syndrome is closely linked to a liver disease called primary biliary cirrhosis (PBC),
  which causes itching, fatigue, and, eventually, cirrhosis.

Treatment for these digestive problems varies, depending on the problem, but may include:
Pain medicine
Anti-inflammatory drugs
Steroids
Immunosuppressants.   

I hope for a few responses.
« Last Edit: July 12, 2018, 05:11:58 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

cccourt1942

  • Hero Member
  • *****
  • Posts: 1518
  • Suffered from numerous symptoms for about 25 years
Re: Sjogren's Syndrome and Digestive Problems
« Reply #1 on: July 06, 2018, 02:48:43 PM »
why don't you take pilo or evoxac, etc. That will help.
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Skylar

  • Newbie
  • *
  • Posts: 32
Re: Sjogren's Syndrome and Digestive Problems
« Reply #2 on: July 06, 2018, 04:06:14 PM »
I have weird GI problems too, most of which have been in remission due to diet.

Have you ever done an elimination diet to see if some of your problems are related to food sensitivities? I've done the Dr. John McDougall elimination diet - it's not easy to do but it's the gold standard for detecting foods that you react to. Eliminating those foods help you reduce overall inflammation in your body.

Carolina

  • Hero Member
  • *****
  • Posts: 5497
  • —if it ain't one thing, it's another." Roseanne R.
Re: Sjogren's Syndrome and Digestive Problems
« Reply #3 on: July 06, 2018, 06:20:36 PM »
I have a swallowing disorder (Dysphagia) and constriction at the bottom of my esophagus (Achalasia).  Achalasia is treated with a balloon inflated to open the valve and botox injected in the muscles around my valve.

I have Small Intestinal Bacterial Overgrowth caused by poor motility in my Small Intestine.  SIBO is treated with antibiotics.

These problems are due to neuropathy of my gastro-intestinal system.

Regards,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

katie1111

  • Full Member
  • ***
  • Posts: 192
Re: Sjogren's Syndrome and Digestive Problems
« Reply #4 on: July 07, 2018, 03:15:56 AM »
A few years ago, I developed pancreatitis when my gall bladder became inflamed and I had to have it removed.  It took 1 1/2 years for my pancreas to calm down.  I also have GERD and autoimmune gastritis.

Katie1111

Deb 27

  • Hero Member
  • *****
  • Posts: 627
Re: Sjogren's Syndrome and Digestive Problems
« Reply #5 on: July 08, 2018, 08:36:38 AM »
I've had colitis in the past and ended up having to get a colon resection b/c meds wouldn't give me relief. Have you tried an elimination diet or IgG food intolerance testing? A lot of people's GI problems clear up when they go gluten and dairy free.  We also get caught be tween a rock and a hard place with PPI's, they cause a lot of these problems such as SIBO and colitis. My GI doc also told me to steer clear of NSAIDS, which I have done.

Also, my auto immune problems seemed to begin when my colon became inflamed. I know I have leaky gut but I can't seem to get off PPI's. I am trying to wean myself off. It's not easy. I am down to 20 mg every other day. My reflux gets me at night after I lie down.  Ive yet to start with evoxac. I am afraid to try it b/c of the side effect with asthma.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

trejonina

  • Full Member
  • ***
  • Posts: 175
Re: Sjogren's Syndrome and Digestive Problems
« Reply #6 on: July 09, 2018, 06:04:26 AM »
Hello, tahe Probiotics, they are veeery important. Research and you{ll be convinced.google: Health Benefits of Taking PROBIOTICS- Harvard Health

warmwaters

  • Hero Member
  • *****
  • Posts: 1845
  • Just keep swimming - Dora
Re: Sjogren's Syndrome and Digestive Problems
« Reply #7 on: July 09, 2018, 12:52:18 PM »
Well, I've moaned about my digestive issues here often enough.  Onset was after Sjogren's issues started.

For me it's chronic diarrhea. Officially diagnosed as IBS (in other word, yes we acknowledge it's a thing, but what kind of thing, who knows?)  My gastro & neurologist feel that it's part of CNS involvement. At a practical level, it means I may have many BMs in a 3-4 hour period several times a week. Also have acid reflux.

Things tried: various elimination diets (GF, Dairy, nightshade, etc).  Various meds. Immodium eventually works, but causes constipation, which is another painful problem. Best result has been the FODMAP diet, which does an elimination diet to stop an number of sugars (many natural sugars), with a re-introduction to see what you can tolerate. I struggle with fructose and lactose, and can't have much fiber. Which is a blast when dealing with doctors who want you to up your fruit and veg!

Been living with this for about 9 years now.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Carolina

  • Hero Member
  • *****
  • Posts: 5497
  • —if it ain't one thing, it's another." Roseanne R.
Re: Sjogren's Syndrome and Digestive Problems
« Reply #8 on: July 09, 2018, 03:54:48 PM »
Dear warmwaters,

I found the FODMAP elimination plan very very helpful.  About two months after I started, I also identified that wheat is a problem, and so is lactose.   At first I thought my problem was IBS-D, and what a misery. 

Later I was tested for SIBO, and that test was positive, so I had a course of antibiotics.  That helped a great deal, but I still follow the FODMAP plan, and find it fairly easy to do.   Have you asked to be tested for SIBO?  Just a thought.

I've taken probiotics for about 8-10 years, trejonina.  But now I take probiotics that are 'best' for IBS-D and SIBO.  My gastroenterologist says I must take probiotics, and so I do.

I forgot to mention that I also have low level THRUSH, which is a fungal infection of the tongue.  ICK!   I only started having THRUSH when the IBS-D and SIBO showed up, about 16 months ago.

It amazes me to have these problems start when I was 75.   I keep thinking I won't have more problems...but then there's something new.

The balloon dilation of the valve at the bottom of my esophagus and the botox injections may have to be done again in the future. 

Immune Disorders and the Neuropathy that accompany them are the 'gifts that keep on giving'.

Regards, Elaine

Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

vrystaat

  • Jr. Member
  • **
  • Posts: 63
Re: Sjogren's Syndrome and Digestive Problems
« Reply #9 on: July 10, 2018, 04:13:24 PM »
Thanks for replying everyone.
I have been to numerous gastro-enterologists, some of them as Faculty at academic institutions.
I have probably had 10 Gastro-duodenal and 7 colonic endoscopies. The GERD, gastritis and colitis are all
biopsy proven. My current new epigastric and LUQ pain have been checked out. I have had Rifaximin prescribed, but
I don't have $1850 to start this. I am now on a course of probiotics, and there has been a marked improvement. I may have SIBO, but
perhaps I have IBS, which is now known to be a significant illness. I have not had an elimination diet or IgG food intolerance testing.
I take Pilocarpine daily, and it helps a lot. But the basic problem has not been found.
« Last Edit: July 12, 2018, 05:13:54 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

SjoGirl

  • Hero Member
  • *****
  • Posts: 1884
Re: Sjogren's Syndrome and Digestive Problems
« Reply #10 on: July 10, 2018, 04:33:23 PM »
Learning what your trigger foods are helps and whether you have to eliminate them altogether or simply need to eat them less often or eat less of them. For example, I can tolerate a bit of dairy in a latte, but don't ask me to drink a glass of milk or eat cheese or ice cream

While I tested negative for Celiac, trying gluten off and on over many years (trying includes the occasional cheat), has proven it is an issue as I will literally develop hives (sometimes just one very itchy one) when I eat gluten.

I am sure I have many other food intolerances, but I am skeptical about sensitivity testing. The person who would have done it for me is well respected here, but her answer to everything is to do testing then sell a person supplements. I read years ago that it's really best to get vitamins from your food so I set out to do that. By mostly clean eating, I mean very little processed food, I was able to achieve the goal. I also eliminated intestinal metaplaysia, which is a precancerous condition.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.