View Full Version : Lupus and IBS (warning...indelicate subject

09-21-2006, 05:55 PM
Does anybody else have IBS with Lupus. *sighing here* I swear, I sound like I am *always* complaining, and in real life, I don't...except to my doctor. But about 8 years ago, I started having severe (and I mean SEVERE) diarrhea...so bad that I'd have to literally run to the RR. And (not to be gross here) it was almost all water. The first doctor said, well, take fiber. Yuck, and it only made me go more. :oops: :oops:
Folks, I know this is a gross subject, but still...Lupus causes inflammation. It's got to be connected. Are there studies that confirm this?
One thing I've noticed; when my stress level isn't bad, the IBS isn't as bad. It's one of the reasons my doctor has me taking Xanax. I worried for awhile about dependancy issues, but my doc (and I do LOOOVE this doctor!) says you can stay on Xanax for life and it isn't going to hurt you. If you're dependant, so be it; if need be, they can wean you off. I know this is probably an un-PC stance, but I don't care. My doc cares about allieviating my symptoms. He KNOWS the cause.
Man, I am SO glad I found this site. I felt all alone out there with my disease and my pills. God bless you all!

09-21-2006, 06:11 PM
I'd be interested in knowing if they are common together as well... I have been having a lot of issues lately, and someone suggested IBS...

09-21-2006, 08:50 PM
I don't want to hurt your feelings here, but any doctor who tells you you can stay on xanax for life and it won't hurt you either doesn't know what he is talking about, or doesn't care enough about his patients to educate them instead of just writing them a prescription. Xanax is a benzodiapene - it is a sedative/hypnotic which affects your central nervous sysyem and it is intended for SHORT TERM USE ONLY!!! Xanax is highly addictive, and if you take it regularly you develop a tolerance, so it takes higher and higher doses to work. If you suddenly stop taking xanax after your body gets used to it, you can suffer withdrawal symptoms up to and including seizures! If Xanax were harmless, there wouldn't be dozens of detox and rehab centers for xanax detox.

If you have IBS (irritable bowel) related to stress, there are many treatments other than xanax to manage it. Irritable bowel is a functional problem of the digestive system - it doesn't involve inflammation. Inflammatory bowel disease (Crohns or ulcerative colitis) does involve inflammation - it is a much more serious condition which requires management by a gastroenterologist.

I understand that you are grateful to this doctor and like him. But just like many doctors prescribe antibiotics for colds just because the patient wants them, even though they do nothing for a virus and actually contribute to antibiotic resistance, other doctors prescribe drugs like xanax and valium to keep the patient happy. ASlthough this doctor may be helping you in the short-term, in the long run he is not doing you any favors.

Please understand that I am not trying to upset you or hurt your feelings, but this is something you need to think seriously about.

09-22-2006, 07:18 AM
Well, I will definitely bring up this in my next visit with the doctor. I take very low doses, but i will still talk to him about it. This doctor is the only one that I've ever had who doesn't treat me dismissively. He actually sits down and talks to me and LISTENS when I talk. He says that I know my own body better than he ever will. And he knows that virtually anything needs to be viewed in light of my lupus. but thank you for your concern.

Having an extremely bad day today. My 5th day in flare. I'm so feverish that I took a cold bath this morning...which made my joints ache even more. sigh...... :(

09-22-2006, 09:38 AM
IBS is not uncommon with Lupus and, as Marycain pointed out, is usually caused by stress. It is also linked to inadequate fluids and poor eating habits. Another consideration is the fact that many of us with Lupus also suffer with Fibromyalgia and IBS is one of the most common symptoms of Fibromyalgia. Lupus symptoms and FM symptoms are very much alike and only blood tests can differentiate which symptom is caused by which disease when, like me, you suffer from both.
Irritable bowel syndrome (IBS) is a common disorder of the intestines that leads to crampy pain, gassiness, bloating, and changes in bowel habits. Some people with IBS have constipation (difficult or infrequent bowel movements); others have diarrhea (frequent loose stools, often with an urgent need to move the bowels); and some people experience both. Most people with IBS are able to control their symptoms through diet, stress management, and sometimes with medications prescribed by their physicians.
For many people, eating a proper diet lessens IBS symptoms. Before changing your diet, it is a good idea to keep a journal noting which foods seem to cause distress. Discuss your findings with your doctor. You also may want to consult a registered dietitian, who can help you make changes in your diet. For instance, if dairy products cause your symptoms to flare up, you can try eating less of those foods. Yogurt might be tolerated better because it contains organisms that supply lactase, the enzyme needed to digest lactose, the sugar found in milk products. Because dairy products are an important source of calcium and other nutrients that your body needs, be sure to get adequate nutrients in the foods that you substitute.
Dietary fiber may lessen IBS symptoms in many cases. Whole grain breads and cereals, beans, fruits, and vegetables are good sources of fiber. Consult your doctor before using an over-the-counter fiber supplement. High-fiber diets keep the colon mildly distended, which may help to prevent spasms from developing. Some forms of fiber also keep water in the stools, thereby preventing hard stools that are difficult to pass. Doctors usually recommend that you eat just enough fiber so that you have soft, easily passed, and painless bowel movements. High-fiber diets may cause gas and bloating, but within a few weeks, these symptoms often go away as your body adjusts to the diet.
Large meals can cause cramping and diarrhea in people with IBS. Symptoms may be eased if you eat smaller meals more often or just eat smaller portions. This should help, especially if your meals are low in fat and high in carbohydrates such as pasta, rice, whole-grain breads and cereals, fruits, and vegetables.
There is no standard way of treating IBS. Your doctor may prescribe fiber supplements or occasional laxatives if you are constipated. Some doctors prescribe antispasmodic drugs or tranquilizers, which may relieve symptoms. Antidepressant drugs also are used sometimes in patients who are depressed. As Marycain pointed out, the major concerns with drug therapy of IBS are the potential for drug dependency and the effects the disorder can have on lifestyle. In an effort to control their bowels or reduce stress, some people become dependent on laxatives or tranquilizers. If this happens, you and your doctor should try to withdraw you from these drugs slowly!
So, you are not alone in dealing with IBS...
I wish you the best
Peace and Blessings

09-23-2006, 07:19 PM
I was so happy to find this discussion! Ever since I went off decadron (I had been on it over 2 months) I started having GI problems - diarrhea, nausea, abdominal pain, cramping. At first doc thought it might be withdrawal from steroid, but that turned out to be not true. I had an IBD 7 Screen blood test (I think this is fairly new) and stool cultures, and all came up negative. Three weeks later, not much has improved. I have been on a bland diet, and still have the same syptoms. I am going to the Gastro doc next Friday. If she wants to do a colonoscopy, she will have to wait, because my platelet counts are still low and I don't think they will do it because of bleeding risks. As Roseanne Rosannadanna said "It's always something!"
I read that these syptoms are not uncommon in people with SLE. I feel like I could go to my rheumy and say any symptom - hangnails, smelly feet, itchy earlobes - and she would tell me that they were all part of this crazy disease. It is a real emotional roller coaster for me, and I feel sorry for my husband and kids, because it can be so disruptive to family life. And these particular symptoms are embarrassing and inconvenient! I have a party tomorrow to go to, and I worry about how my stomach will behave. I have already missed an out of town wedding, because I could not imagine travelling like this, and I am not ready for the Depends! In 3 weeks I am supposed to take a week long trip out west, for fun and to visit my son. I bought trip insurance, because I am not sure I will make it. So now that I am done complaining, you know I have sympathy with your plight! I will come back and post again if the GI doc has anything useful to offer. Thank goodness for Immodium, it sometimes works, temporarily, anyway.

09-24-2006, 09:29 AM
Unfortunately, the IBS problem seems to be pretty common with both lupus and fibromyalgia, and most of the IBS treatments seemed to be geared toward people with IBS with constipation, not IBS with diarrhea.

Another problem is that IBS symptoms can be the same as inflammatory bowel disorders such as ulcerative colitis, so your doctor has to rule those out before deciding you have IBS. People with severe, persistent diarrhea also need to be tested for other medical conditions which could be causing or contributing to the diarrhea - such as diabetes, lactose or gluten intolerance, celiac disease, and bacterial or parasitic infections. Depending on your age and family history, your doctor may also want to rule out colorectal cancer. Once your doctor has ruled out any other reason for your diarrhea and abdominal pain, he may diagnose IBS.

A big problem is that many doctors actually don't know that much about treating IBS, so they make tell you to get more fiber or eat a bland diet. There are two types of fiber - soluble and insoluble - and INSOLUBLE fiber will actually make diarrhea worse, so you should stay away from it. Soluble fiber binds with foods in the digestive tract and helps slow things down, so it helps diarrhea. You can find soluble fiber in foods like cooked navy and pinto beans, lima beans, some nuts, and oat bran. Some fiber supplement contain soluble fiber, so you can check the label to make syre.

Foods can trigger IBS symptoms in some people, especially chocolate, caffeine, carbonated drinks, sorbitol (found in sugarless gum and mints), dairy products and fructose (fruit sugar found in honey and most fruits). Keeping a food diary for a couple of weeks may help you figure out if certain foods are a trigger for you.

People who are lactose intolerant can often tolerate yogurt. Yogurt with active cultures has the added benefit of putting good bacteria back into your GI system which can also help improve your IBS symptoms. If you just can't handle yogurt, you can find probiotics in capsule form at most drugstores or health food stores. Priobiotics can also help prevent thrush while taking steroids, and the diarrhea associated with many antibiotics.

If you are more inclined toward natural remedies, there are three that may help IBS related-diarrhea. Peppermint oil, chamomile, and fennel are all available in health foods stores - you may also find chamomile and fennel in your grocery store. The enteric-coated peppermint oil capsules are the easiest to take - you should not use peppermint if you have severe heartburn or reflux disease. Peppermint tea is available in many grocery stores - a cup before meals may prevent the after-meal problems. Chamomile is available as a tea or in capsules - you should NOT use chamomile if you have hay fever or ragweed allergy. Fennel is used as a spice in many cultures, you can buy fennel capsules, or even chew the seeds if you prefer. You should always check with your doctor before using any herbal remedies.

If stress triggers your IBS symptoms, stress-reduction methods like relaxation therapy and yoga may help. Valerian is a natural anti-spasmodic that may help - cats claw also has the same effect. Although kava is widely used as a herbal relaxant, there are some serious concerns about its safety, so it's probably best to avoid it. Over the counter anti-diarrheals like Imodium and prescription anti-spasmodics like Levbid and Bentyl should only be used on your doctors recommendation. Pepto-Bismol contains salicylates (like the ingredients in aspirin) so you should definitely avoid it if you have a bleeding problem.

you should also be careful about diet and weight loss products because some of them contain an ingredient called cascara sagrada which is a strong laxative which can cause severe diarrhea and cramping.

If absolutely everything else fails, you may consider Lotronex. This IBS drug was pulled from the market by the FSA because of several deaths from ischemic colon. But the FDA brought in back under very limited circumstances - with several restrictions.

Physicians now need to be enrolled in a special program to prescribe Lotronex. The drug is approved only for women with severe, diarrhea-predominant IBS who have not responded to any other treatments. Patients have to be very closely monitored. This is basically a drug of last resort - most people are able to control or at least manage their IBS symptoms without it.

Hope this helps!

09-26-2006, 10:08 AM
Ohhhh not chocolate!!! Please, say it isn't so! :shock:
I kept a food diary for about 4 months, and it seemed as if the IBS was going to have its way no matter what I ate. I'm scheduled for a colonoscopy next month...hopefully this flare will be gone by then. (It had darn well better be.) They'll be better able to tell then if it's IBS or colitis or whatever.
You're right, most of the meds for IBS tend to be for constipation..NOT my problem.
I eat basically what I have always eaten. I don't eat junk, and try to stay away from fried foods, but I do eat lots of fresh fruit, fresh vegetables, whole grains, etc. I love to cook so eating healthy is easy for me.

09-26-2006, 10:48 AM
These are medical conditions where your digestive system cannot tolerance or digest fructose properly. Fructose intolerance can be caused by a condition called Hereditary Fructose Intolerance (HFI),in which the liver enzymes that break fructose up are deficient. There is also a form of fructose intolerance similar to lactose intolerance. Fructose malansorption occurs when the small intestine is unable to digest fructose properly. Since fruits, most dried fruits, many naturally sweetened foods, health bars, diet sodas, etc. have a high fructose content, even a healthy diet high in fruit can cause roblems for someone who can't digest fructose. Your doctor can often diagnose these problems with a hydrogen breath test.

Fructose intolerance or malabsorption can cause bloating, diarrhea, gas, stomach cramps ranging from mild to severe, also aching eyes, "fuzzy headed' feelings, fatigue, and depession.

If you haven't been tested for this, it's certainly worth asking your doctor, since it's a simple non-invasive test (unlike a colonoscopy) - especially since you do eat a lot of fruit.

09-26-2006, 11:04 AM
that honey is over 42% fructose - so if you use honey as a sweetener and have a problem with fructose, it can trigger definite problems. Raisins and dried figs are also very high in fructose.

09-30-2006, 02:50 AM
Hi. Two things.

First, I'm on Xanax and have been for a couple years. I take 0.5mg three times a day and more when needed. I have major depression with generalized anxiety and panic disorder related to my CNS lupus. I have been told, in response to my worries over addiction and the rest, that I will be on Xanax the rest of my life and not to worry about it. I am on the board of directors of a mood disorder support group in my local area, and many of the members have this same statement made to them. I can't imagine all these doctors are wrong. Just my two cents worth.

Okay, we were talking about IBS and Lupus, though. After being hospitalized for a severely infected colon, it was explained to me that the IBS is mainly due to the Fibromyalgia. The gastroenterologist said that just like with my other muscles, the muscles in my intestines do not work in a coordinated matter. They have spasms, they slow down, they speed up, and some parts do one thing while the rest do the other. It made sense to me.

I have to be careful with my digestive system. I have to have enough fiber, but not too much. When I'm on narcotic pain meds, I have to take Colace to keep things moving along. I need to have some Fleet enemas at hand for emergencies. I can't eat ice cream and lettuce too close together. I have to head for the bathroom when I get that urge, and not put it off. It's a longer list than that, but you get the picture.

So, now I treat my intestines as just another muscle group...just one that I can't look at or rub muscle cream on, lol. My IBS got less severe when I got on meds that help fibromyalgia, too. One example is Lexapro, an antidepressant, although I'm on that for depression and anxiety, it also treats fibro and helps with pain.


09-30-2006, 08:45 AM
Hi, Susan - you are in a slightly different situation because you have a diagnosed anxiety /panic disorder - this kind of medication may be appropriate for you because your doctor is monitoring your responses, and presumably aware of any personal or family history of addiction. I was specifically referring to the use of xanax and related meds in the context of treating normal stress, without trying other therapies first. Some GPs and family practice doctors simply write prescriptions for xanax without taking into account the potential for dependence and abuse, drug and alcohol interactions, and the fact that xanax can worsen depressive symptoms in patients with undiagnosed depression. These are the same types of doctors who routinely give antibiotics to patients with viral illnesses because the patient is convinced it helps, even though the doctor does or should know better. Medical malpractice insurers have a nickname for this kind of doctor - dr. feelgood. My comments about xanax were not referring to the long term use of medication in a controlled clinical situation such as ongoing psychiatric treatment, just the indiscriminate use of anti-anxiety drugs for stress. I'm sorry, I should have been more specific, and certainly didn't mean to offend you.

There is another issue with xanax that folks who drive should be aware of - this is especially true in Kentucky, where I live, but some other states also - if you are involved in an accident while taking xanax, you can conceivably be charged with driving under the influence of a controlled substance, even if the medication was prescribed by your doctor and you are taking only therapeutic levels; most DUI blood screenings now include benzos as well as opiods and cannabis. Some Kentucky AGs are even charging in cases involving over the counter cold and allergy medicines. It's definitely something that people taking any medication that can impair their driving ability need to consider.

09-30-2006, 06:55 PM

I was in a bad wreck about 4 weeks ago, and am still recovering. The police officer asked me what meds I had taken, and I told him my regular Darvocet and Xanax about 15 minutes previously. I told him they were regular prescriptions taken routinely each day, both three times per day.

He looked at my bottles in my purse, and never said another word about it. The only ticket I got was following too closely.

So I'm not sure, but it seems here you can drive with your regularly prescribed narcotics and benzodiazopenes (sp?).

However, you have to be on them long enough to know how your meds affect you, I agree.


10-01-2006, 06:29 AM
I hope you are recovering - even a little accident is scary, and the stress sure doesn't help lupus.

As for DUI charges for driving while taking prescription meds, this pretty much varies from state to state - some states only worry about alcohol and "illegal" drugs, other states are a lot more aggressive and require DUI screening for any accident with injury unless the cause is something obvious like hitting a deer. Kentucky is very aggressive and has some of the strictest DUI laws in the country, partly because of a bus accident caused by a drunk driver that killed 27 people, mostly high schoool kids on their way home from a church trip. But every state has different DUI laws about prescription and OTC meds, so people really need to check out their state's laws.