Gastrointestional symptoms and their treatments

[Kadiddle]

Since it may be 6 months before I have my first visit with a Rheumy, I would like some advice on help with chronic constipation, bloating and gas. I am guessing this is part of the Sjogren's, and it is causing me some real grief right now. My PCP put me on Amitiza, and it seemed to help alot if with the discomfort, however, my stools aren't any softer, just more frequent. But...after experiencing watery stools on 3 occasions in public or in my car, I am done with the Amitiza. This is getting embarrassing and more than I can bear. I have tried Miralax and I eat plenty of fiber. What have some of you found that helps to keep you regular and decrease the discomfort? I have had a colonoscopy and it's perfect, but I haven't had an EGD.

[irish]

It sounds like you could have a sluggish colon. This happens with neuropathy that comes with Sjogrens. Many of us have it in some form or another. The problem with this is that the food is not propelled through the gastro intnestinal tract fast enough and the body absorbs too much water out of the stool causing the constipation.

When I worked as a nurse we would give patients bran powder, or a more coarse ground bran that you can get at pharmacy, etc. The bran was mixed with ground up dates and raisins and rolled into little balls and stored in the refrigerator. This helps to soften the stool. The next thing to do if there is slowness in having a bowel movement is to take milk of magnesia in the liguid form. We would give this every 3rd night usually. I would check with your doctor before you take this in case he would have some other ideas.

Remember that whenever taking extra fiber one needs to make sure to drink extra fluids. It also helps to be more active. Another thing that night help is to drink hot coffee, tea or hot water with lemon and sugar and then sit and rock in a rocking chair. This is one of the old fashioned treatments that does work. Riding in a car also helps to stimulate the colon. It is the vibration that stimulates the colon. Good luck. Irish

[Lindabridge]

I have found that eating fresh fruit with the skin ( pears, apples, etc.) and exercise are helpful in combating constipation. Also, if I eat low-grade carbs for breakfast ( croissants, muffins) instead of high fiber cereal, I get constipated.  Diet is crucial.  I don't need to take meds anymore for constipation if I eat properly.

There are a great deal of gastrointestinal ailments that are related to Sjogren's.  I've had them all, including GERD which I've managed to reduce by curtailing my intake of morning coffee.  Drinking coffee on an empty stomach must have contributed to my intestinal permeability.

[Liz D.]

I have had problems for years.  Lately though I find if I eat three prunes every other night, I can be pretty regular. 

Liz D.

[sixty]

I take 1000 mgs. of magnesium daily.  That works for constipation, but it takes a week or two to start working.

[warmwaters]

I'm on the other end of the gastro spectrum, with IBS-D, so my solutions are different. Just wanted to  say you're not the only one with these problems.

I finally found a good gastroenterologist who also believed that autoimmune issues were part of my problems. Had a couple that dismissed that completely.  In my case, I have some autonomic neuropathy, so that is the likely source of my problems.

[Judie P]

I have tried all the things doctors usually suggest from stool softners to extra water and fiber.  I never skip a day or two, but all I get is marbles every day.  This might sound weird, but if I eat dried apricots, about ten a day, my stools come out normal, no marbles.  Now I have had to cut back on my apricots because it was making my sugar levels a little wonkers.  Now I am back to marbles.

[irish]

I would guess that your big problem is the shortage of fiber in your diet when eating apricots helps. They are very high in fiber. I eat blueberries or raspberries every morning on my bran flakes and that really helps me. I am also diabetic and I don't use sugar on my cereal.

There are many types of fiber to use. Have you tried the bran powder with the dates or raisins that are run through the food processor??? You don't need a lot of the fruit when you use the bran but you do need to increase your fluid intake. Another food that helps is sweet potatoes. I wash one up and poke holes in it with a knife, wrap it with saran wrap and put in microwave for a couple of minutes.

When done let cool a little and cut in half and scoop out of the shell. You can mash it up a little and put butter and salt and pepper on it. Soo good as it gets a little sweet when cooked like this. I like to put salsa on the sweet potato. It is soo good that way. Don't give up but keep trying to find the fiber that will help you without driving up your sugars. Don't forget the parsnips, rhutabagas and other root vegies. Some of them have more carbs than others. Good luck. Irish

[Kadiddle]

I can't even begin to tell you how very much I appreciate all of your comments and wisdom. I am determined to not let this disease get me down, but at  the same time recognize it is life-altering and I need to take the necessary steps to combat the issues at hand. What a wealth of information this forum is.
I especially like that you all gave me advice on what I can do as opposed to what the doc can do for me. I prefer to eat better and eat right rather than take a medication.
I'm drinking more, and I am eating more fruit. I LOVE breads and muffins, so I know I am getting plenty of fiber. I have added Kale to my smoothies for the breakfasts I have on the days I work.
Thank you, thank you!!!! 

[mbr22m]

I've tried everything from Miralax to Psyllium husk fiber. The only things that work for me now are taking milk of magnesia weekly and avoiding all dairy and red meat. Red meat stays in me like cement and is so hard to digest. I also do a "cleanse" every couple of months using Designs for Health Paleocleanse. That stuff is like a miracle to my digestive tract. It's pricey but worth it. It's available on Amazon. Taking digestive Enzymes also help me. I take them with every meal. I have VERY sluggish digestion... 

[Winnie]

I have chronic constipation.  I have altered by diet - no gluten or dairy.  Although it is helped with pain, my constipation is still there.  I tried magnesium but I have low blood pressure and it makes me dizzy.  I gather it lowers it more.  The only thing that works is miralax and sometimes not very well.  If I miss a nightly dose then I am in trouble.  I also add a fiber gummy but too much fiber makes it worse.  My stomach seems dead.  I also search Ibsgroup.org and they have a forum for constipation.  You may find something that works for you there.  Hope you find some help. 

[irish]

Just wanted to add that a lot of people get constipated when they take extra fiber. According to the doctors and druggist this is usually because they don't increase their fluid intake enough or maybe not even at all. When you drink water with the fiber that is good, but you need to drink more fluid through out the day.

good luck. Irish

[Sooki]

I've had chronic constipation all my life (as did my father and does my sister).  It just seemed normal.  In times of stress I could go 2 weeks without even thinking about it.   I tried every OTC product that came out. Many made it worse (fiber, miralax). A few things worked for a few days and then not at all.

Things are more or less under control these days for the first time in my life.  But with commitment on my part. My diet is meat, fish, eggs, beans, lots of veggies and some fruits.   I eat a Paleo variant - it started as AIP but then I added beans and nightshades and omitted coconut and all alternative flours.  The important parts are no milk products, no grains.  No dry foods, which includes anything made with flour.  Stews, stirfrys, casseroles., root veggies (potatoes, yams, beets, carrots, etc.) for starch - but not too dry, maybe with some added coconut or olive oil.   And drink lots of water throughout the day - 3 qts. spread throughout.

When I'm doing that, stewed prunes (7-12 depending) every other day followed by 2 big glasses of water works like magic. (tmi?)

I'm think it also has to do with gut microbiota.  Sugars and grains seem to encourage the little beasties that dry out my intestines.  It would also explain why different people have different requirements.  And probiotics don't seem to have any effect on me.

Maybe something easier to try would be avoiding just milk and dry foods (i.e., fiber, baked flour - substitute pasta, oatmeal?) and drinking more water?  idk

I sympathize and hope you find something that works well for you.

[jazzlover]

I take 1000 mgs. of magnesium daily.  That works for constipation, but it takes a week or two to start working.

my solution as well ...dosage varies according to response

[JoanElizabeth]

I would ask for a referral to a GI from your PCP, because while I think your problems are sjogren's related a GI can help you get a better picture of what the exact issue is and would be the proper specialist to treat it. I would hate for you to have to wait another 6 months only for the rheum to refer to a GI and then for you to have to wait again. As others have said it sounds like a sluggish colon/motility issue which can be caused by sjogren's, which wouldn't show up in a colonoscopy of EGD. Sjogren's also puts you at high risk for Celiac which they can use a blood test to screen for, so you may want to ask your PCP to run a Celiac panel. Just some thoughts.