View Full Version : Major Abdominal Pain

01-13-2007, 11:54 PM
Does anyone else experience major abdominal pain on a regular basis? I have had it since I was diagnosed with lupus over 2 yrs ago. The severity fluctuates, but it's always there, sometimes with nausea too. I have had pretty much every test imaginable with no answers. I had my appendix out just to take it out of the equation.
I feel like I could deal with the lupus a lot better if I wasn't in constant pain (I am on fentanyl patch 25 mcg, but doesn't seem to help much). I also have little appetite, and am concerned because I only weigh 90 lbs as it is (I'm only 5', 27 yrs old).
I'm currently on Cellcept for SLE. Any thoughts? Help? I am scared that I'm going to be in pain forever and that I'll never be able to enjoy life or live normally. (I live with my parents and struggle to work 1 day per week.)

01-14-2007, 07:28 AM
Hi Ladybuggy9!

I am sixteen years old and have had severe abdominal pain for as long as I can remember. :cry: However, I went on a school Music Tour to Germany and Austria in March/April 2006 and picked up a very bad Dysentery bug with Cerebritis (inflammation of the brain) in Austria. Since then, I have had endless medical problems (especially with my abdomen) and was eventually diagnosed with Lupus in December 2006.

I have the worst Irritable Bowel Syndrome that my doctors have ever seen and suffer from chronic, SEVERE constipation, which alternates with Dysentery. I have had problems with faecal loading (sorry! :oops:) since they picked it up on a X-Ray when I was six years old. They pretty much ignored it though, until I was in Grade Seven (2003). My stomach had not worked properly for two weeks and one day, I passed out in the school bathroom from the pain! It was my UROLOGIST who eventually discovered the problem after the fainting episode because my colon tends to sit on my bladder and causes me endless bladder trouble.

Last year, the abdominal pain became unbearable and we discovered the same problem (again, my Urologist discovered it). I was hospitalised on New Year's Eve due to severe faecal loading; it was so bad that I hadn't been able to eat anything for three days without bringing up!

In November 2006, I was in Hospital and they discovered the severe faecal loading on an X-Ray because I was complaining of terrible abdominal pain. My Specialist Physician was convinced that I had Crohn's Disease - it's in my family - (or at least Ulcerative Colitis). So, I had a Colonoscopy and all that they found was an ulcer in my transverse colon. So much for the Crohn's theory!

I was also born with an enlarged spleen and lately, it has been causing me the most atrocious pain! However, it works fine and abdominal ultrasound scans show no problems, apart from the fact that it is quite enlarged.

I am going to see a Gastroenterologist because most of my doctors are puzzled and don't really know what to do. I am on the most unbelievable amount of medication to get my colon to work!

So now, I am permanently suffering from severe abdominal pain and my doctors don't know what to do! I also have Celiac Disease, which causes problems in my small bowel.

I also get nausea with the pain and I often have oedema (fluid retention) too. The oedema is the worst and makes me so ill that I almost begin to cry because I cannot sleep! My faeces are either black with blood, extremely pale or grey! My Specialist Physician sent a faecal sample away to the lab., but apart from the blood, it came out clear.

I wish that I could help you because I understand what you are going through. Have your doctors considered Irritable Bowel Syndrome (I.B.S.) yet? As odd as it sounds, it can cause the most terrible pain!

Have you seen a Gastroenterologist yet?

Keep well! :)

01-14-2007, 10:28 AM
:!: Honey, go see a gastroenterologist if you have not already. My husband has had the same problem with alot of stomach pain, very slow digestive system, and bloating. He had an MRCP and it showed that he had a large cyst on his pancreas and his pancreas duct was swollen and partially blocked. Please go see a gastroenterologist if you have not already. I hope you will find out what is causing this problem and get some relief! Bless you!


01-14-2007, 12:28 PM
Ladybuggy, you mentioned that you had been through many tests, but I'm wondering if you've ever discussed your pain with your gynecologist to rule out any possible problems like endometriosis which can also cause major abdominal pain. When I was in college I had a severe episode of abdominal pain that neither my regular doctor nor the gastro specialist he sent me to could figure out because all the tests for abdominal things like diverticulitis and irritable bowel were normal. The GI specialist pretty much decided it was the stress of college and working that was making me sick. My roommate's father was a gynecologist, and he was visiting one day when I was literaly doubled over because the pain was so bad I couldn't straighten up. He made an appointment for me to have a pelvic ultrasound which showed multiple cysts on my ovaries, so he recommended a laproscopic procedure to check for endo, which turned out to be the source of the pain. So if you've seen a GI specialist and haven't gotten any answers, you might talk to your gynecologist.

01-14-2007, 05:37 PM
Thanks everyone for your responses. I have seen a gastroenterologist (actually, 2) and been diagnosed with slow motility due to the lupus and gastroenteritis. I do suffer from pretty much constant constipation, for which they put me on Zelnorm, stool softeners and digestive enzymes. But none of it seems to be working. When they took my appendix out they also checked for any abnormalities and did a biopsy of my colon, which came back normal. The only minor thing that showed up was a couple very small spots of endo tissue on my appendix. My gynecologist recommended trying a course of Lupron, which I have tried and actually had a few pain-free days (maybe 5), but that was months ago and it doesn't seem to be working any more.

I have had multiple CT scans of my abdomen as well as an MRI. I even swallowed the capsule that takes pictures as it goes through your system. That test did show some inflammation of some kind, but because my motility is so slow, the battery ran out before the capsule went all the way through. But the GI seemed to think it was somewhat nonspecific. (Also, I have been on prednisone several times and never responded to it.)

I don't think I've had specific tests to check my pancreas, but I have had a lot of blood tests. Wouldn't my blood sugars be off if it was something with my pancreas? Is there a chance this could be some kind of vasculitis?
I have considered IBS (as have my doctors), but the pain is all the time, and it doesn't seem to make a difference what I eat. I think it's possible I have IBS, but I don't think that could account for this much pain. Could it? Are there any other pain relievers you guys have tried that work really well?

I really appreciate any suggestions you may have. I have seen some very good doctors in NYC and now in Boston, and none of them can figure it out. Should I go to Johns Hopkins? My mom wants to take me there, but I don't know if I can handle more tests. I was hospitalized 4 times my 1st year with lupus, and it was awful. I just want relief. :cry:

01-14-2007, 06:12 PM
Have you asked your doctors about Inflammatory Bowel Disease? This is quite different from Irritable Bowel Syndrome. There are two forms of IBD: ulcerative colitis and Crohn's disease. Although the diseases have some features in common, there are some important differences.
The most common symptoms of both ulcerative colitis and Crohn's disease are diarrhea and constant abdominal pain. The diarrhea can range from mild to severe (as many as 20 or more trips to the bathroom a day). If the diarrhea is extreme, it can lead to dehydration, rapid heartbeat, and a drop in blood pressure. And continued loss of small amounts of blood in the stool can lead to anemia.
At times, those with inflammatory bowel disease may also have chronic constipation. With Crohn's disease, this can happen as a result of a partial obstruction (called stricture) in the intestines. In ulcerative colitis, constipation may be a symptom of inflammation of the rectum (also known as proctitis). Both present with constant abdominal pain.
Because of the loss of fluid and nutrients from diarrhea and chronic inflammation of the bowel, people with inflammatory bowel disease often also experience fever, fatigue, weight loss, dehydration, and malnutrition. The constant pain usually results from the abdominal cramping, which is caused by irritation of the nerves and muscles that control intestinal contractions.
Inflammatory bowel disease can also cause other health problems that occur outside the digestive system. Some people, with the disease, show signs of inflammation elsewhere in their bodies, such as in the joints, eyes, skin, and liver. Skin tags that look like hemorrhoids or abscesses can also develop around the anus.
Inflammatory bowel disease can be hard to diagnose because there may be no symptoms, even if the person's bowel has become increasingly damaged for years. Once symptoms do appear, they often resemble those of other conditions, which may make it difficult for doctors to diagnose and which may cause misdiagnosis.
To correctly diagnose, the doctor will need to examine your stool for the presence of blood; look at your colon with an instrument called an endoscope. Also called a colonoscope or coloscope, this instrument is a long, thin tube inserted through the anus and attached to a TV monitor. This procedure is called a colonoscopy, which allows the doctor to see inflammation, bleeding, or ulcers on the wall of your colon.
The doctor may also do a test called an upper endoscopy to check the esophagus, stomach, and upper small intestine for inflammation, bleeding, or ulcers. During the exam, the doctor may perform a biopsy, which involves taking a small sample of tissue from part of the colon so it can be viewed with a microscope or sent to a laboratory for other kinds of analysis. A doctor may also order a barium study of the intestines. This procedure involves drinking a thick white solution called barium, which shows up white on an X-ray film, allowing a doctor to get a better look at what's going on in your intestines.
There are treatments for IBD which have had satisfactory results, especially with alleviating the pain!! Let us know if this has been considered or if your doctor's think that it is a possibility!
I wish you the very best
Peace and Blessings

01-14-2007, 09:13 PM
I also have a motility disorder (gastroparesis) because the lupus/scleroderma affected the nerves that controlled my digestive system. Although the motility disorder causes some stomach discomfort and constipation, and sometimes vomiting, it never caused the severe pain you are describing. I was on propulsid for a while, which was great for me but ended up being taken off the market except in limited cases due to its side effects. But if your doctor thinks the slow motility is the problem, you might ask about a trial of Reglan, which increases gastric motility, to see if that helps the pain.

Unfortunately in your situation, narcotic pain medicines are not a good option because they would slow your gastric motility down even more and could cause you to develop an ileus (paralysis of the intestinal tract). So other than non-narcotic pain relievers, there are not many pain medicines that would be safe for you to take until this condition is diagnosed. I'm assuming the gynecologist did a complete pelvic exam to check for fibroids and adenomyomas before he prescribed the Lupron? If not, you certainly need to have this done.

A problem with your pancreas wouldn't necessarily affect your blood sugars, but your doctors might have done other tests to rule out a pancreatic problem. Sometimes when your doctor can't give you a definite diagnosis, it helps to find out what the the differential diagnosis is for your symptoms, and what diagnoses have been definitely ruled out. That way you know what direction the doctors are heading, and focus your own research.

01-14-2007, 10:15 PM
Ladybuggy, when I mentioned the pancreas, I only did so because my husband has a cyst on his pancreas and it was rather large when discovered, on December 15th 2006. It has shrunk an awful lot now, but last night he was awake until 7:30 :cry: this morning because of his stomach hurting. He is supposed to eat very small meals throughout the day, but he has no appettite and I have to beg him to eat. I wish you well and hope that you will soon find relief from this pain.


01-14-2007, 10:33 PM
Don't give up on the doctors, you need to get this taken care of. I do have a thought though... Have you ever tried to eliminate certain things you eat? I would start with wheat, read all labels you'd be surprised what has wheat in it, i.e. soy sauce, Celiac disease can cause severe abdominal pain. I have struggled with some abdominal pain. I know that certain things I eat cause it. Like red meat and pork. I have also had stomach problems due to all the calcium I take since I am on prednisone.

01-22-2007, 10:35 AM

I went to see the Gastroenterologist today and he wants to do an Endoscopy, another Colonoscopy and the "swallow the camera" capsule thing! :( He wants to take a lot of biopsies. This stuff is all SO expensive though! :(

He doesn't seem to think that diet plays a big role in these problems and my mother and I completely disagree! :( He also doesn't seem to believe that antibiotics can cause major colon problems, but antibiotics drive my colon crazy! He doesn't believe in dieticians or probiotics either! :(

He says that I have been "over-diagnosed", whatever that's supposed to mean?! :? He also says that I have too many specialists, but the point is, my problems needed specialists. My Neurologist deals with and diagnosed my Epilepsy; My Paediatrician/Paediatric Cardiologist is my main doctor and he sorts out my minor heart and blood pressure problems too (no-one else could help me with them); My Specialist Physician takes care of me when I am admitted into the Hospital; My Urologist sorts out my urinary system problems (I get bladder/kidney infections almost every two weeks; I had kidney stones a short while ago and am immune to some antibiotics, so I needed a specialist to treat this problem); My E.N.T. is sorting out my Eustachian Tube Dysfunction and my Allergic Rhinitis; My Gynaecologist is sorting out my Female Reproductive Organ problems (which no-one else can sort out); My Rheumatologist is sorting out my Lupus and my Fibromyalgia; My Dermatologist deals with my skin problems and now I'm seeing a Gastroenterologist because my other doctors are desperate and don't know what to do about my bowel problems! I was referred to my Neurologist, my Specialist Physician, my E.N.T., my Gynaecologist, my Rheumatologist, my Dermatologist and my Gastroenterologist, so don't blame me about this problem!

The problem is, actually, that some of my doctors do not agree on some things! :mad:

For some reason, I don't feel any better having seen him, like I usually do when I am getting to the bottom of a problem and we are finally sorting things out. He's nice enough, it has nothing to do with that. I don't know, I guess that I'm just "sick and tired" of seeing so many different doctors! :(

Keep well! :)

02-11-2007, 08:11 AM
If everything else has been ruled out, ask your doctor if you can try magnesium. I take 500 mg a day and it works wonders on the bowels, headaches, and my heart issues (I have MVP).

The worst that will happen is that it won't do anything.

02-14-2007, 09:43 AM
I have a question. How long after having your appendix out did the pain come (or return)? Had you had any surgery abdominally before that? The reason I ask is I had ovarian cysts and endo and my insides were a mess. I have had a total of 8 laps to clear them out and finally had to have a total hysterectomy in 2001. After all of those surgeries the adhesions have gotten awful. They grow on everything, and even the endo has come back after the hyst. The adhesions can cause TERRIBLE abdominal pain and can block your intestines if they grow in the right spot. The last surgery I had my intestines were almost completely blocked off. IF you have a history of adhesions at all, the Zelnorm you are taking is not the med for you. It promotes the growth of adhesions, and that is on the warning label for that med.
My point is, if you have a history of adhesions, you may need to schedule a laparoscopy to see if that is causing your pain, and maybe even the bowel slowness from being blocked. Those things are evil and they won't show up on any of those tests, same for endo. The only way they can see them is the lap. Good luck. I hope you find some relief, whatever it turns out to be. I can deal with ANY other kind of pain, but abdominal pain sends me over the edge.

02-14-2007, 08:44 PM
Laddybuggy9... How are you doing?

I've had gallbladder disease and the surgery to have it removed. I also have pancreatitis and gastroparesis. Have they checked your blood enzymes? How about your thyroid? Have they done a stomach emptying test?

A sluggish thyroid seems to help in the advancement of gallstones, as the body will 'create' it's own cholesterol which helps to form the stone... This pain is in the upper abdominal region, right up between the rib cage. The same goes for the pancreatitis pain. Gastroparesis [slow digestion] will cause a extreme heavy feeling, for me I experience distension, swelling and tenderness along with the gastric distress... It also seems to get worse right before my cycle time.

Fentanyl, demerol or any of the opiate pain meds will cause constipation. I was on a very high dose of demerol then was gradually went up to a fentanyl 100+ patch.... It did help with pain to some degree but it only made my digestion slower and cause severe constipation which only caused more abdominal pain because it actually just worsened everything. I had to wean myself off all of it.

You have been given a lot of good advice here and a lot of things to check up on. It could be anything, but it could also be the pain meds.
I can also relate to what TracyDawn has mentioned, but not that severe. Make sure you check everything.

I'd also add that Zelnorm is also bad for pancreatitis and some meds for abdominal pain can actually cause a pancreatitis/gallbladder attack.
Read all the medication info that comes with your prescriptions, doctors will often miss something important. So far all of the drugs that I've tried for SLE Lupus, has caused me nothing but grief. I vomit like a fountian. Aleve for muscle/joint pain can cause severe abdominal pain/pancreatitis attack as well.

I'd also add that I've tried magnesium citrate, and it does help like CarrieKate said.

I hope you are all feeling good today...
God Bless!