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Life With Lupus

IBS and Lupus


#1

About two months ago I was hospitalized for intense abdominal cramps…doctors ran a million test only to find out that I was clogged up. As embarrassing as it was I admitted that I have gone days without going to the bathroom. My intestines almost always hurt me now. Anything too thick makes me constipated even though I am on a gluten free and dairy free diet. I still have major constipation issues. Also I throw up a lot because I feel like it just won’t go down. I now have plenty of Gastroenterology appointments and for now take miralax monthly to help a little. Does anyone else have these problems? And what have you done to help?


#2

I hope you are taking your Miralax daily, not monthly I have the same and there is a medication for it Also you can take your Miralax twice daily Be sure to drink plenty of fluids and my doc recommends a high fiber diet


#3

Isn’t it dangerous to take miralax daily? The bottle says only take it for a certain amount of days like 7. Which medication are you taking?


#4

I am prescribed Miralax twice a day for my IBS with severe constipation from my gastroenterologist In addition I also have a script for Linzpress for when the Miralax isn't effective My IBS is felt to be related to my lupus as well. Maybe the warning on the bottle is to be sure you have been evaluated by a physician for this problem- often your cancers and other bowel obstructions present first as severe constipation I have had the dubious pleasure of undergoing a bazillion tests and colonoscopies so pretty much rules that out.


#5

Thank you so much! I’ll do research on linzpress and ask my rheumatologist about it. And definitely take miralax more often now that I know I can.


#6

Amitizia is the other drug for this Both work absolutely wonderful- takes all the fullness symptoms away too- however I got severe diarrhea from the drug so only take it periodically The Miralax works well for maintenance.


#7

Desiree , thank you for posting this . I have been concerned about the same issue . Not that it’s an issue everyone wants to talk about . I have been having the same issue about being clogged up. I’m doing all kinds of fruit and fiber. But it has been bothering me month and a half, or longer. It does concern me. First I can’t go, then I eat so much fruit that I have diarrhea. But I am very leery of eating too much. I was wondering, what other people do for their diets. Is there anybody out there that has a diet that seems to work for them. I am having a hard time finding the balance.


#8

I too have IBS along with Lupus and Sjogrens. Seems to be pretty common with auto-immune illness. Seems like most of you have the more common type with constipation, mine is the polar opposite. I get awful painful attacks of cramping followed by severe diahrrea. None of my drs so far have a very good explanation for it. The theory right now is that its auto-immune related. So I try to avoid all dairy as much as possible, get plenty of fiber which helps too. I also take an anti-spasmotic drug which name escapes me. It helps to control pain if nothing else. Tough issue to deal with all around


#9

maybe try more vegetables. I eat them throughout the day at each meal and for snacks. I always keep things like carrots, celery, snap peas, green beans, broccoli and cauliflower in the fridge. I can grab them raw in a Baggie and take them on the run or roast or steam a bunch and they are ready ahead of time. seems to do the job!


#10

Thanks that helps



Steen said:

maybe try more vegetables. I eat them throughout the day at each meal and for snacks. I always keep things like carrots, celery, snap peas, green beans, broccoli and cauliflower in the fridge. I can grab them raw in a Baggie and take them on the run or roast or steam a bunch and they are ready ahead of time. seems to do the job!

#11

Yes that is right . Tough issues



nicki said:

I too have IBS along with Lupus and Sjogrens. Seems to be pretty common with auto-immune illness. Seems like most of you have the more common type with constipation, mine is the polar opposite. I get awful painful attacks of cramping followed by severe diahrrea. None of my drs so far have a very good explanation for it. The theory right now is that its auto-immune related. So I try to avoid all dairy as much as possible, get plenty of fiber which helps too. I also take an anti-spasmotic drug which name escapes me. It helps to control pain if nothing else. Tough issue to deal with all around

#12

I take prescribed probiotics and stool softener daily, due to having ibs I was advised by my doctor to avoid high fiber foods which will clog you. Good luck to you.


#13

Thank you guys for your support and ideas! I have found several tricks to help with my IBS, they don’t completely stop my symptoms but they definitely help a bunch. I try to eat Paleo all the way no dairy, no gluten, nothing processed, meats, vegies, fruits, and nuts. I also try to avoid high amounts of sugar and sodium. I stay away from things that are too thick like Bananas or Gluten free products like crackers or cookies. I try to stay away from anything cold I drink hot decaffeinated tea, room temp water, and hot oatmeal seems too help too. I take miralax often as well. Even with my healthy diet I still have IBS problems.


#14

I have had IBS all my life. Also hospitalized, as a child. Try generic PeriColace each day, it makes a huge difference in quality of life. If your problem is severe, diet changes alone may not be enough.


#15

I’m just curious . Should I not be eating bananas ? And why do you stay away from cold drinks ?



Desiree stogden said:

Thank you guys for your support and ideas! I have found several tricks to help with my IBS, they don’t completely stop my symptoms but they definitely help a bunch. I try to eat Paleo all the way no dairy, no gluten, nothing processed, meats, vegies, fruits, and nuts. I also try to avoid high amounts of sugar and sodium. I stay away from things that are too thick like Bananas or Gluten free products like crackers or cookies. I try to stay away from anything cold I drink hot decaffeinated tea, room temp water, and hot oatmeal seems too help too. I take miralax often as well. Even with my healthy diet I still have IBS problems.

#16

Hello sweetheart, I totally understand, butt I’m married to an Italian. … I’ve always loved you eat and I went to my stomach dr because I couldn’t. I’m always losing weight and can’t keep it on. After many tests, he did an endoscopy which shows food and your stomach. He seen food do still in my stomach. He did a 4 hour body study where they watch food digest and move thro your intestine. During this he seen the food doesn’t move. After getting pills that could cause permanent muscle peralises of the mouth. I realized things needed to change.
No diet will help butt I’ve noticed a big difference when I don’t eat red meat. I try eat more fish and softer foods that are easily digested. Smaller meals are great and seem to digest better. I have been to point I’d skip eating so I wouldn’t have the pain. It’s been so bad I’ve cried going to the bathroom cuz the pain is so bad. Drinking water which I hate does help to. I’ve not found any over the counter things that help. I know so many people say they do butt none help me. I don’t have ibs but gastroparesis. The conditions are about the same tho. I have found great things from a few friends who also have this. I’ve found things like laughing cow cheese and rice thin (blah to both) a great little snack. Gets you lil protein and dairy in a serving and then in a few hours eat another snack or small meal. I was placed on a liquid diet for the rest of my life. Hahaha tell someone who loves food they can’t eat is like telling a kid no. Try things out and take notes. Also hemroid pads are a great thing to have on stock. If don’t already get them, you will. Best wishes to you and this struggle but know if you listen to your body things will get better for you.


#17

Sorry to hear about your discomfort. Just went through the exact thing... I am on a dairy free and gluten free diet as well. I eat more fiber now, use Benefiber daily and drink loads of water. You really should be "going" every day.... good luck!


#18

I have suffered from severe constipation for a long time and haven’t been able to get a diagnosis. They give me medications for it, like right now I take a powder called Lactulose, and it’s just like miralax but ten times stronger. And I am afraid to take it everyday because it’s so strong. But if I don’t take it I won’t go for days sometimes even weeks. It’s frustrating. And when I do go its always a struggle. I didn’t think it was connected to the lupus until now that I see that I am not the only one.


#19

I experienced similar bowel issues in the years before my Lupus diagnosis. Half a capful of Miralax in my coffee daily is the solution for me for many years. Haven’t had to make any dietary changes thus far except to make sure I drink water, water and more water all day, every day.


#20

My granddaughter suffers from severe constipation (since she was a baby!) and I have found that a daily glass if prune juice prevents it 100%. I also make sure there’s lots of fruit and minimal cheese in Her diet.