HealingWell
Search Close Search
☰

Anyone Suffering from Constipation w/Sjogren's Syndrome?

Support Forums
>
Sjogren's Syndrome
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/24/2010 4:07 PM (GMT 0)
I've been suffering from constipation for about a year. My constipation is mostly due to lack of moisture in the colon, not due to the hardness of my stool. Before testing positive for Antinuclear Antibodies Direct for Sjogren's Syndrome (SS-B), I thought my constipation was perhaps due to my Type 2 diabetes.

Now, I realize it could be due to SS. I only have a very dry mouth at this stage. And this occurrence is rathe recent (last two months). My eyes are not dry yet (actually, they're watery). I have very dry, scaly skin, especially my feet and hands, which I always thought was due to T2 diabetes.

If you have constipation and SS, how do you treat it? I've been treating it with Milk of Magnesia (1 tbsp/day). But this is not designed for long-term use. I've also been taking magnesium supplements (500mg/day), thinking that it's perhaps my magnefisum deficiency (never confirmed) that's taking the moisture out of my colon. So far it's been sort of working but I'm worred about the long-term consequences of taking it (MoM). Fiber and increased water never worked for me; actually it made constipation worse! MiraLax also never worked. Colace somewhat when combined with MoM but never alone.

If you suffer from SS and have constipation, I'm interested in your method of treatment. I have an appointment with a rheumy next week. Hopefully, together, we can come up with a solution. I had a colonoscopy done last month and my GE found nothing wrong. So this leaves SS, I believe, by process of elimination.
Posted 1/25/2010 4:34 AM (GMT 0)
I'm sorry, but my Sjogren's isn't severe enough to have experienced any of the internal symptoms. And in my reading I haven't encountered any mention of Sjogren's affecting the colon, most of what I've seen has more to do with the lungs.

I noticed several people have read your post but no one has yet replied -- so I guess none of us are experienced with what you are going thru.

Sorry we can't help, but I look forward to having you report back in -- the more we know about what this disease can do, the better we can watch for changing symptoms.

Good luck,
Posted 1/25/2010 5:31 AM (GMT 0)
SS sufferers get easily constipated because of dryness with the walls of the entire intestinal tract. It helps me a great deal with this breakfast: quinoa, wheatgerm, 1 sliced banana and soymilk heated up for one minute on high. Quinoa must be cooked first in a rice cooker or a small pot. Wash and drain 1/2 cup quinoa, add one cup water and cook for 15 minutes on the stove or in rice cooker until indicator light switches to "WARM". Drink lots of water during the day. For lunch and dinner eat one portion meat or tofu to 4 portions vegetables. Eat fruit if you can tolerate it.
My symptoms or multifold. Sometimes I find if hard to bear but what can you do??? SS is here to stay with those of us who know it too well. Good luck. For the wheatgerm part, 2 heaping tbsps. will do and the soymilk or regular milk - 1/2, 3/4 or 1 cup, depending on preference.
Posted 2/21/2010 7:03 PM (GMT 0)
"My eyes are not dry yet (actually, they're watery)"

Hi--I just got diagnosed last week so I'm no expert but before I went to Rheumaologist I had my annual eye exam. My main complaint was my eyes were watering all the time. Guess what--it is initial symptom of dry eyes. Your body recognizes the dryness and is trying to compensate. He placed a dye in my eyes and checked with slit lamp? and confirmed dry patches in the eye that was tearing the most. I am trying Systane ultra eye drops but I am going to call him back and ask if he has other suggestions now that we know a little more is going on in the eye department. I can't help you on your initial question.
Posted 3/1/2010 7:25 AM (GMT 0)
I've had Sjogren's for 5 yrs. My first symptom was dry eyes with no  tears and constipation.  Eventually difficulty swallowing. The constipation has been the worse because I was never constipated in my life. The opposite. After many tests and trying many things I am having fairly good results with Miralax.  It's not perfect but the best I've been.  I was taking MOM for a while but it is definitely not a long term solution.  I also eat lots of fiber.  Before I was diagnosed I had a Colonscopy, Endoscopy, CT scan,etc.  Finally I was sent to a Rheumatologist and got the diagnosis.

I use Restasis eye drops and have plugs in my eyes but I have never gotten real tears back and cannot really cry.

I have been using Evoxac and have tried several other meds.  I'm not sure any of them have really worked. I haven't tried Chloroquin yet.

I just kind of deal with the issues as they come along and hope it doesn't get any worse.  I am also a nurse.

Would love to hear what others say about the constipation because it is never discussed much.

Posted 3/3/2010 8:17 AM (GMT 0)

I have had severe Sjogren's for about 10 years now.  In my case, Sjogren's has become systemic and has not only affected my eyes and salivary glands but has also invaded several other parts of my body including my digestive tract.  This has left me with severe and chronic constipation amongst many other issues.

I see a gastroentonologist regularly for my problems (as Sjogren's has also affected other organs in my digestive system) but in particular for my constipation, I take the following steps to help address the issue.

1.  Make sure you are eating enough fibre.  That means you have to have at a minimum 30 grams of fibre daily.  You must learn how to become an expert in fibre intake. This is one of the most important factors that will help you.

2.  Drink plenty of water.  At least 8 to 10 glasses of water daily.

3. Eat a pro-biotic yogurt daily for the rest of your life.  This will help the intestinal flora to thrive and will help you get some relief.  It took me about a month and a half to obtain optimum levels.

4. Get regular exercise.  Often brisk walking for 1/2 hour will help get things moving in the right direction.

5. Finally, when I've done all of the above and still am  "stuck" I take a behind the counter laxative called " Lactulose". 

That's what works for me.

Posted 5/11/2010 10:17 PM (GMT 0)

With regard to the post of 1/24/10 on Sjogren's and constipation, I am new to this website, but have had Sjogren's for at least 4 years.  I had a problem with constipation for as long as I can remember and just eating a high fiber diet was never enough, plus I also work out at least 3 times per week and am a very active gardener. So with Sjogren's it became even worse, and I was taking over the  counter stool softeners, laxatives, etc.  but then I found that eating two or three figs in the morning and mixing 2 teaspoons Benefiber (or a generic of the same ingredient content) in the evening (plus drinking plenty of fluids throughout the day) works very well for me and is certainly better than taking all of the other stuff!  

Posted 8/27/2010 7:29 PM (GMT 0)
Hi

Yes, I've recently had this too for the first time and I agree with Daisy1234.  Mine improved with increased fibre, water and exercise.   G.P. also prescribed stool softener.  Bit of a shock to get this way as I thought I was reasonably good.  Guess we have to look after ourselves a bit more now, along with the pills, drops and creams!  This SS thing really is a pain in the ...

Take care. 

Posted 8/30/2010 3:01 PM (GMT 0)
I am new to this site but have a few ?'s about Syjergenes Syndrome. I went to the Ent on Friday and am currently waiting for Blood work to come back to see if i have it. I have dry eyes, he said i didnt produce much saliva, have jaw pain, basically all the signs. My ? is, Does anyone have neck pain, i guess id say its on both sides on my throat where your thyroid is. Its more of an ache. Like a pulled muscle. I dont have it today but usually have it a few times a week. Also ive noticed the past few weeks, when cleaning my ears it hurts to even put a qtip in them. Is this all normal??? Thanks everyone for your input!
Posted 10/27/2010 5:27 PM (GMT 0)
I was dx'd 5 years ago but didn't have any symptoms until 6 months ago. When they came on they came hard and fast everything at once. Constipation-lactulose does wonders and works quickly. The ear pain I have. My ent checked it out and nothing inside my ear was wrong then I started getting bleeding sores on the outside of my ear-dry skin also the pain and tenderness starting behind my ears and going across my jaw line and down my neck-inflamed lymph nodes also the pain behind my ear is putting pressure on my ear which makes me feel like the pain is in my ear when it's not.
Posted 10/29/2010 11:20 AM (GMT 0)
I am currently 60 years old and at the age of 40 I was diagnossed with lupus by symptoms because I tested negative wto the ana test. Then I started to have symptoms such aas welts, iritis, dry eyes, joint pains and they thought I had sjogrens, I was treated with prednisone for about 3 years and all my symptoms seem to disappear. In june of this year I started to have terrible stomach pains and constipation. I looked like I was 8 months pregnant. I had sonagramms, cat scans, colonscopy and endoscopy. I have esophagitis, reflux, cathartic colon The pain is so bad I can.t even get out of be. It's so hard since I was a very active person. The gym makes me sick and nauseous. The more active I am the more sick i feel. Teh endoscopy showed food in my stomach and the did a gastric emptying test which i was normal. I know I digest food very slowly because when I vomit I am vomiting up food from the day before. I feel like the doctors are writing me off - saying it is all in my head. Sometimes the pain is so bad I just want to die. I can only wear sweats because I can't stand something sitting on my waist and stomach. One gastrenteroogist prescribed miralax- I am currently up to 9 capfuls a day and that doean't empty me out. I also take amitizia 24mcg 2x day Another doctor prescribed levbid an antispasmadic 0.375 mg 2x day. I also take xanax, neurontin and effexor (due to depression, anxiety and pain. I went to a pain management center and all they could do is prescribe vicodin which makes the constipation worse. I only take it when I am in agony I also have a long history of eating disorders which the doctors are attributing the constipation to, but I really think it is more involved thatn that. Should I go to a rheumatologist eventhough my iniutial ANA test was normal. For some reason my body tests normal to everything: confused Does anyone have any suggestions. I am also on zofran for nauseousness. I just want my life back
Posted 1/10/2011 8:07 PM (GMT 0)
I, like you, have had major problems with constipation. This is a long-term problem with me, having lasted for many years. I have just recently been diagnosed with Sjogren's. My routine is this:
1. Metamucil +/- Miralax every night.
2. Shredded Wheat and Plum Smart Lite (this is prune juice but tastes better) every morning (other high-fiber cereals don't work as well for me).
3. Amitiza (prescription only) at least once a day.

If I am meticulous with this plan, I usually am able to control the constipation. Hope some part of this helps!
By the way, I also have watery eyes. But after I suffered a corneal abrasion from dry eyes (surprise!), my eye doctor explained that normal tears are made up of 3 layers & mine lacks the "moisture" layer. Therefore, the eyes are tearing more, to try to maintain the normal moisture level in the eye. Systane eye drops (over-the-counter) have helped a lot with this.
Posted 1/30/2011 7:47 AM (GMT 0)
Hello there,

I have the same problem that you're experiencing - constipation due to  Sjogren's Syndrome. I hope what works for me will work for you too:

- drink lots of water. A glass of warm water first thing in the morning is very helpful

- moderate exercise. In my case, I also have rheumatoid arthritis and so don't exercise very much, which worsens the constipation

- boiled pears and apples: works wonders. These have pectin, a soluble fibre that gets the gut moving. Boiling them increases the water content and I find this more effective than eating them un-boiled.

- my last resort: Lactulose and glycerin suppositories. Lately, the constipation has worsened, possibly due to inactivity and I'm thinking of taking Lactulose everyday.

All the best! yeah

Posted 3/27/2011 6:10 PM (GMT 0)
I have had SS for 7 years or diagnosed for that long. I was told to take flaxseed oil softgels twice a day and it is miraculous for your colon. You will have no issues. You might even get down to one a day depending on your diet. If you eat lots of greens one will be sufficient. If you eat alot of red meat etc. you might want two. Give it 48 hrs to kick in.
Posted 3/31/2011 3:27 PM (GMT 0)
coffee and exercise in the am shud help
Posted 3/31/2011 5:57 PM (GMT 0)
I find that Watermelon helps me out the most with internal dryness and consitpation, and gatoraid also helps
retain moisture...Also, dry eyes was my first symptom, I have extreme dry eye's, I have upper and lower
eye lid plugs, use systane, refresh, restasis 3x a day and Muro 128 at night and found that boiling an egg
and wrapping it in a otwel while it still hot helps my sore dry eye's, don't touch the hardboiled egg it'll
retain the heat for 5 to 20 minutes....egss retain heat use a boiled egg to soothe eyes.....
Keep us posted on how your doing...
healing hugz
Posted 8/28/2011 2:10 PM (GMT 0)
Yes, and now I am taking Topamax for my "silent migraines", so it is even worse! It is horrible. I use "Baby lax" glycerin suppositories (not nasty "injectables")...LOL..but ampules...by Fleet...very now and then. They do work and don't cause cramping like others do.
Posted 9/4/2011 3:47 PM (GMT 0)
I have had terrible constipation for 15 years, along with dry eyes, dry mouth and lips, hypothyroidism, chronic fatigue, stomach pains, fatty liver (I have never drunk more than a couple of glasses of champagne at Christmas), dry and scaly hands and feet, joint swelling and pain, saliva gland swelling and jaw pain, and was told it was just 'part of getting older and the menopause'! Last week they told me it was Sjogren's and that because it hadn't shown up on the blood test, they had ignored that as a diagnosis.

Anyway, enough of that. Constipation - at one point it was so bad it blocked my bladder and that was just unbelievable. So, I now manage it and also manage - ha - to have at least one good bowel movement a day. Every day, wherever I am, first thing in the morning I have three teaspoons of Lactulose, one Fybrogel sachet in some fruit juice, a bowl of All-Bran with a sliced banana and semi-skimmed milk. During the day I never let myself get thirsty - I drink tea or water regularly. I also walk as much as I can with my joint pain, but I make a point of it. I get one hour's gentle exercise twice a week and I eat lots of fruit. I never take pain killers. (One time I broke my hand and elbow when I fell over at church and refused to take the pain killers because the constipation was much worse than anything else. Codeine especially is a nightmare.)

It seems that it is up to us to manage this syndrome symptom by symptom. The fatty liver is new and I am off to the doctor tomorrow to insist on being referred to a hepatologist as I now know that Sjogren's can cause liver problems. He gave me penicillin for my infected salivary glands, which are now less painful.

For my dry lips I use lip salve, all day long. I have about six of them and keep them in various coats and one in my bra so they are at hand! For dry eyes, which wake me a couple of times in the night, I use a lot of Viscotears, at least two packets a week. I never put my hands in water with detergent and use a good hand cream a lot. For my feet I use a thick cocoa butter cream before putting on socks. I always wear socks and flat shoes. I wear good slippers indoors, over my socks, and rarely wear sandals - the worse thing for dry skin on feet I find. I take thyroxine 100mg a day, sleep every afternoon for about an hour, have a good 8 hours sleep a night, try to eat as little wheat as possible but not be crazy about it and avoid fried food.

Have I told you I never take pain killers? Well, when my joints are bad I do use Ibuprofene gel, which is excellent, ok not as good as co-codamol but doesn't give you constipation - where I came in, or hopefully out!

We have to keep on keeping on. It beats the alternative!
Posted 9/4/2011 8:33 PM (GMT 0)
I to have ss started terrible eye pain and tears and corneal tear. Dr here in "podunk" had never seen anything like it before called it an ulcer and gave me extremly expensive drops. a week later wearing an eye cover to keep me from opening my eye it got better. but its back and im keeping it at bay with eyedrops. hits me worst in the middle of the night.

constipation is a problem for me to but i thought it was because i gave up coffee due to RA told to stay away from caffieine. 

I am a retired colon hydrotherapist.  And i was taught that the longer you take laxitives the worse it gets because the colon REALLY wants to quit

working on its own because the laxitives are doing it all. (take that for what its worth) I will say that i had a client who only had a bowel movement every 3-4 weeks..... I never knew this was possible without dying first. but she said laxitives quit working for her and she would take alot.

she she signed up for a series of 12 and was regularly going on her own by the end. she called it a "re-training "of the muscles-sphincters down there. Im not at all saying this would work for you but.... If you get to the point that you are so miserable dont rule this out.  its very simple and pivate. and within 1-2 sessions you will find relief.   I personally used a libby system and it wasnt horrifying as some may picture it to be. again this is a sugestion to "clean" you out" if nothing else. its not healthy to keep backing up (toxins) rule of thumb is food goes in food comes out not long after.  I was surprised to learn most people only have one BM a day if that.  healthy is 3-4.                     hope i havnt grosed you out to bad. I also hope you all find relief soon.

Posted 9/6/2011 1:53 PM (GMT 0)
Laxatives, such as senna, are an irritant in the bowel, and not really very useful long term, though often marvellous as a pessary with gel when in extreme need, as is an enema, though I certainly wouldn't want either regularly.

The best thing to do for constipation is to have a regular routine and to follow that routine every day without fail.

Lactulose softens the stool to make it easier to pass. All-bran and fybrogel add bulk to the bowel and with water and fruit juice help to move the contents easily. I do think that 3-4 bowel movements a day is excessive, but of course we are all different and the important thing is the regularity rather than the number of bowel movements. Also, very important in all this is the lack of pain and discomfort - if you feel you need to open your bowels, then being able to easily is the important thing. Straining, pain, discomfort, failure and then the feeling continuing when you leave the loo is so horrible that a good routine is a small price to pay.

I do find that more than 1 piece of wheat bread, or any food made with wheat, a day adds to the problem, whereas rye or barley bread is fine. Fruit every day and to keep well hydrated with water or hot drinks is very important. Do not listen to the people who say that water is not the same when taken in tea or coffee, this is ridiculous. Yes, tea is a diuretic, but not so much that it doesn't count as a source of liquid. Also, if your water supply is reliable, fill bottles with water from the tap and put them in the fridge. It is the coldness that makes it more delicious than tap water - and you are paying a fortune for something you get from the tap!

Besides pain killers, the use of penicillin can add to the problems of constipation, and if you are having to take such pills, I would recommend doubling the above routine, especially the lactulose and fybrogel, in other words taking them morning and evening.
Posted 11/2/2011 1:41 AM (GMT 0)
I've just joined Healthwell.

I have searched and talked to some many doctor's, which, I'm sure every one has.
The best thing that I will use the rest of my life: GERBER BABY PEAR JUICE. 6 to 8 oz. usually works.
It's in the baby section at any grocery.

jeff m
Posted 12/2/2011 2:28 AM (GMT 0)
I hope you have gotten the help you need. I have Sjogrens and apparently have had it for years and didn't get diagnosed until just recently. I ended up in the hospital due to constipation..it took 4 days of the doctor ODing me on laxatives and a clear liquid diet to get things moving..what has worked for me is Miralax...it is safe to take on a daily basis as per my gastro doctor once a day with prune juice is a good idea and remember not to drink anything for a few hours to give it a chance to work...I hope this helps!
Posted 2/4/2012 1:34 AM (GMT 0)
CHIA SEED!!

I have had Sjogren's for 10 years. My worst symptoms are constipation and dry lung that results in my getting pneumonia. Like a previous poster, my constipation has been so bad that I thought I had a kidney stone due to the fact that my bladder was being smashed into the size of a pea, causing pain and urinary urgency.

I have tried everything, and most things were unpleasant to use. When I ate more fiber in my food, it just made my gas worse; it didn't help the constipation. When I used Miralax and the like, the outcome was successful but really unpleasant.

Finally, I found the solution: CHIA SEEDS!

They are about the size of really small sesame seeds, and they are perfect for folks with Sjogren's. You just mix them into oatmeal or cereal, or hummus or peanut butter. You can really mix them in anything, because they take on the flavor of whatever you put them in. Ideally, you want to put them in something really moist because they absorb like 4x their mass in water. What's great about CHIA is that they keep the water they absorb as they travel through your colon, so it's a natural way to add water to your bowel. Since our bowels are dry from the Sjogren's, it gets to the root of the problem.

You can get CHIA SEEDS on Amazon.com or at Whole Foods, or any healthy supermarket really. I use about 3-4 tablespoons per day, which has 20g of Fiber plus a ton of Omega 3's. It's been a total game changer for me!
Posted 2/8/2012 3:16 PM (GMT 0)
Good Morning,

I was a huge sufferer for years, severe pain.. you know the feelings. Anyway my rhuemy put me on Brand Name: Arava
Generic Name: Leflunomide...................WOW! I have never been this regular in my entire life......................It is like a miricale!

Ask you doctor about it. Good luck..
Posted 5/7/2012 7:08 PM (GMT 0)
Can you find Zelnorm? I took it twice daily with a Fibercon pill for years. I KNOW it worked, because I became pretty regular (BM every day) and if I missed a dose or two my system was messed up again. I had debilitating constipation years ago and it was the ONLY drug that worked. It was taken off the market, but it was supposed to be reintroduced with stronger regulation. I eventually got better and don't need it anymore. BUT, my problem was so bad that I didn't care about the side effects (I had none) because I was miserable.

Other unconventional things that worked: Coffee in the morning stimulated a BM. Tea didn't work. Coke didn't work. Only coffee. Adderal (amphetamine) for debilitating fatigue and brain fog stimulates a very good BM. Coffee + adderal = many BM a day. Nothing else worked for me -- lots of water, exercise, eating more fiber, etc. I naturally eat pretty healthy things, so there wasn't much room for improving my diet. I wouldn't eat any fast food or processed (boxed or canned) foods, but that's mostly for taste...and my grandparents were farmers. I'm otherwise normal and not earthy-crunchy. I love food!

I am sorry this post is so long, but I don't have many sympathetic people in my life! :)

If you're interested in my constipation history, here's the story:

I had Clostridium Difficile (antibiotic resistant gut infection that causes explosive diarrhea) about 10 years ago followed by years of horrible constipation, bloating, severe abdominal distention, abdominal pain, nausea. It was as if I suddenly developed IBS. My GI kept working with me, because I'd never been ill before that and I appeared to be relatively healthy otherwise. Looking back, I think I've been having Sjogren's symptoms for years. I haven't had positive tests, but my symptoms are pretty severe (my neurologist thought it was MS). I'm on Plaquenil now and I only have constipation during a flare, so I'm pretty sure Sjogren's the reason. I take Atarex for extreme itching in my ears, Salagen or Exovac as needed for dryness, adderall for fatigue (I stopped, but had to take some recently), and medicine for lifelong insomnia. I also take Ativan for anxiety on occasion. I believe the adderall contributed to my recent flare, but i wasn't taking my sleeping medicine and staying awake for days. That probably made me have a flare.

I think that infection has something to do with my autoimmune system, because a few years ago I was hospitalized for multiple gut infections that were even more antibiotic-resistant. What otherwise healthy person gets weird infections like that and almost dies from them?
✚ New Topic ✚ Reply
12