Bloating and pain

General
1

Hi Everyone,

I have been having extreme bloating and stomach pain for the last month. Even though I have not gained weight I can't wear my jeans comfortably and am wearing big shirts to cover the bulge. I have been on pred for over a year and other meds (plaquinil etc.) for 2+ yrs. The only new one is cellcept, I started it in Feb. The info on cellcept does not mention bloating. I am regular (daily BM) and it is not related to my periods (also normal). The pain is hard to pin point and does come and go but is worst when i am trying to sleep at night.

I know that this is a very general symptom but would appreciate any ideas of what could be the cause.

Thanks

Meg

2

Hi Meg
Yes I have bloating as well. Prednisone and plaquinel I think is the cause. I have always had stomach issues though. By removing gluten and dairy it helped a lot. It has been almost a year since going on these meds. I think I have become use to the changes. I still do bloat up every now and then . I wear very comfortable clothing all the time.

3

im a guy and get this as well.. just started over a month ago but discomfort is getting more gradual each day would like to hear from others as well so we know more

4

Have you been tested for Candida? It wreaks havoc in the gut. Try some probiotics also. Its a start!

5

Hi. I have this off an on too. I use a castor oil pack on my abdomen. You simply put castor oil on a wool fabric and cover it with plastic wrap and a heating pad. Then just relax for a while. It works to strengthen the liver and help move things along. It won't give you "loose Poo" but really helps me with whatever inflammation I have going on in there. My acupuncturist who specializes in female reproduction says he sees a lot of "healthy women" with this. It can still be hormone related even if you have a normal cycle. I do too. Take care :)

6

Oh and yes to good probiotics for sure. :)

7

Hi Meg: Years before I was diagnosed I had the bloating and the stomach pain was almost always at night and they are not your regular stomach pain, It's like cramps that come and go for a period of several hours. They are really strong, it's like being in labor. I know it's not cause by the medicine because I had them before taking anything or even knowing I had lupus. But I do know the food you eat triggers them! this I know for sure. A year ago I started following an anti-inflammatory diet, and the stomach cramping are totally gone. Sometimes I get off the diet a little and it's fine but if i over do it the blooding and the stomach pain comes back right away.

Including this diet as part of my life was one of the hardest things I had done, it took me a year to accept it and to even find the positive in it. There is a lot of positive that comes with eating this way. I would love to help you if you are interested. By the way the diet not only got ride of this symptom but a lot of others and for the first time I feel good.

Hope this helps :)

8

I'm always having a problem with painful bloating in the evening. I'm off everything now but Prednisone and I believe it's the problem. I use warm lemon water which works like a gem. One night it was so bad and the pain so awful I thought I would die. It shows up everywhere in my body. I made up some warm water, added a couple of lemons and within minutes I felt it dissipate. It's also a mild laxative as well.

Hope this helps.

9

Food sensitivities will do that too. I have to take natural digestives in a capsule to help digest my food, and Lact-Aid which prevents lactose (milk products) intolerance. I think the meds can add to the inability to digest & metabolize foods the right way. It lowers your immune system, which starts in your gut. It destroys the probiotics in the intestinal system. So yogurt or capsules with probiotics might help too.

10

Hi Meg,
Ive had Lupus (clinically) for 20 yrs. I hv been on plaq 20 yrs, & prednisone since my first of many bouts of cerebritis (1997). I too hv issues off & on w/what I call my “big gut”. I too was once on cell cept. It is now one of my meds I list as an allergy med. I not only had a larger belly, but caused fluid retention in my face,neck & eventually lungs. From cell cept. It took ab 4 mo after starting it to become obvious it was from the cell cept. Unfortunately, Im advised to stay away from ALL the cancer/chemo meds. My questionsince u didnt state it, why were u advised to take cellcept?
As of late, Ive began to hv the bigger bloated belly, etc…pain. i had a work up @ ER. Mine has been primarially YES, this is it, hidden compacted stool. I would not hv believed it, had I not seen the cat scans myself. Due to my pain meds, i am chronically constipated. Well I was. Now, thx to pruines. Ducolax & less gluten, (cutting back 75% of all bread family carbs), my tummy is flatter, and i feel better. But pls elaberate ab the reason for cell cept therapy. I was put on it, along with others like it as a steroid sparing med to titrate from my 40+mg prednisone. Im down to 8 mg prednisone. Keeping my fingers crossed i dont have a repeated stroke, cerebritis, seizures,vssculitis etc. Every time i get down to the 5 to 7mg range of steroids i hv one or more of the 4 problems as a result. I could go on and on. But I am curious ab the cell cept therapy? My reason for the titration of steroids is due to badly needed back surgery. Which by the way caused my deteriating back/spine bone density and cased stenosis, herniated discs etc… Im actually at that point of risking what cld happen to me getting off steroids all together to hv back surgery. No Orthopedic will do it. Im hoping if Im off steroids, i will find a Dr willing to try it. In other words, if i come through that ok, the fear of. Post surgery stroje/cerebrites migh convince a Dr Im safe to try it. Im sure post surgery Ill be placed on 20 mg or so w/ a 3 mo titration time. But ill try it. I am in so much back pain, my whole life has changed… hence the constipation i wanted to tell u ab that many of us loopys on narcotics deal with. But since my back pain became so bad, ive doubled the norco, therefor, big bloated painful stool impacted bowels. (Tummy). I hope i helped a little. I hope anyone else feeling bloated takes in considerayion it could be impacted bowels. I too had reg BMs but still felt bloated. Once I did A 48 hr of liquid diet (no dairy), I couldnt believe what came out. I should mention, my 48 hr liwuid diet also included chicken noodle soup, tomatoe soup, lactose free milk, and worked up to more solid foods like melons, skinless chicken bteast/salmon,veggis, then by the 5 th day, i just didnt add back all those carbs anymore. I will hv carbs occasionally. But taking them out of every day eating helped regulate me. Trust me… the ER Dr said so many people dont relize their stools are impacted because they hv a BM every day. I also drink only bottled water now too. Hope u feel better spon. My email is ■■■■■■■■■■■■■■■■■ if u’d rather. Margaret

11

I can't speak to the pain, but I can tell you that without a doubt, as soon as I go on prednisone again my jeans don't fit because my stomach is sticking out. My face turns into a pumpkin - but...... all my pains go away.

12

I’m on preds and palaquin but only 5 mg. But what helped me was a high fiber diet and I also take flax seed oil ,psyllium husk, and a probiotic.

13

I have been suffering from severe abdominal pain, diarrhea and bloating to the point, I look full term pregnant. It has become so bad, I had to have a colonoscopy. They found a lot of inflammation and did biopsies. They are pretty positive it’s ulceractive colitis, amongst a battery of other issues.

My PCP has been keeping me on nausea meds, meds to coat my stomach and intestines, spasm meds, acid reflex and pain meds. It seems to help for the most part. When my stomach bloats up, I take gas relief medicine. My PCP believes that my stomach issues are causing an absorption problem and is therefore making my body create mass quantities of kidney stones.

I go back to the GI specialist pn May 7 to see what the next step is. I really hope they help you find relief soon.

14

I’m putting my money on the CellCept. You said that’s a new one in your world, and it is well known to wreak serious havoc in the GI-system… Which is why a lot of patients can’t use it despite being a smaller step before Cytoxan (even worse effects) & Rituxan (expensive/off-label.)

Personally, I was on CellCept for all of two weeks, just till finishing my taper up to the intended dose, when I ended up in the emergency room for sudden, severe nausea and vomiting when I woke up one morning. I woke up at my usual time after a good 8hr sleep (better than usual for sure!) and as soon as I was conscious I just froze there in bed, realizing if I even moved wrong I was going to throw up. I tried lying on my side, but all I could handle was flat on my back, and I had to lie still and breathe deeply for about 15 minutes before I could make it 15 feet to start vomiting more violently and painfully than I ever have. And I had some bad “flus” as a kid… I continued like that for over a hour before calling a neighbor to take me in (sets of 3-4 heaves every 10-15 minutes of calm breathing in child’s pose next to the toilet) and somehow managed to suppress it for the 10-15 min ride in her car. At the ER I was back at it again, a little less often and dramatic but still painful. I also had severe widespread body pain and a horrible headache, but I don’t even drink alcohol and had stopped 6mo prior when I started plaquenil for my initial dx. I’m SO grateful my 50-yr-old neighbor came in with me, otherwise they might have assumed I was a bad hangover case (or whatever negative label the ER likes to apply to someone who comes in alone, as if being single and mostly alone handling your illness were a sign of being a failure in life… I have a different ER nightmare story like this.) Once I finally got a bed, they had me on IV anti-emetics (anti nausea Zofran, commonly used for chemo patients, worked like a miracle!) and morphine. Plus fluids, which I asked for an extra bag of since it was really tough to handle the water they were asking me to drink. After my labs came back, my potassium was low and out of range, which could explain my body aches. But then I had to drink and keep down this awful syrupy-salty concentrated potassium supplement! I normally avoid narcotics like the plague, but in this case I was more than happy they were ordered! Everything got calmed down pretty quickly over the next few hours after that and they discharged me with a script for oral Zofran and potassium tablets… And since I had relieved my neighbor of her generous, caring post of giving me the paper bucket and holding my hair while advocating for me till the meds started working, I actually took a cab to the pharmacy and home. Not just that I’m single, also no family in town, and it all happened too fast to have any reasonable search for other friends to help. Plus, most people who know me have no idea how quickly things can get serious, rather than just being “too tired to go out tonight.” (Sound familiar everyone?)

I wish you much better with this, since CellCept is a moderate “steroid sparing” therapy when Plaquenil isn’t enough, but the individual side effects we each have are what determines which drugs we can use. After trying CellCept, I went right to Rituxan, which has worked wonders with almost zero side effects (flu-like/flare-like symptoms for about 12-24hrs after infusions, 2 every 6 months.) I don’t recommend bringing up my whole dramatic experience with your rheumy, who may think your concerns are prone to suggestion by others, but DEFinitely tell him/her about the symptoms you are having, the timeline of when they happened, if they’re building over time, and if/when they’re really bothering you, alternatives. Act early, or at least track it and have a plan for if it goes south!

Take care, hope you feel better soon!
Brynn

15

Oh, and more notes including on the pain part… I had that sharp, rotating pain for a while before diagnosis and my first rheumy said unexplained abdominal pain is often a sign of lupus, especially in younger women. Other docs have dismissed it as simple IBS, and say it’s probably all just foods and stress triggered. I have a really long list of foods I can’t tolerate, but even avoiding all of them faithfully and cutting out new ones as they appear, it persists. I’ve achieved a lot of successful stress-management in the last year, but it still shows up sometimes… Plaquenil definitely did it to me too, plus bloating and loose stools in the morning. When I had finally adjusted to the plaquenil (name brand only, I had to start up on depakote for my mood swings, which is the same things all over again! But those are just annoying side effects to put up with and adjust to over time, whereas the CellCept was brutal. I obviously have a very sensitive system to start out with (though my colonoscopy at little after my lupus dx came back normal.) Colonoscopy at age 25, sheesh! This lupus gig’s rough… But after Rituxan I’ve been feeling almost normal!!

Brynn

16

Donatella, my symptoms were as yours with the cramping esp at night. The pain was so severe I felt close to passing out. I lived off of chicken noodle soup, bread, 7 up. It was the only thing I could keep in my body. After a visit to the er I was put on Bentyl every 5 hrs. That was 7 yrs ago. I believe that med gave me a little bit of life left. I am now down to 1to2 pills a day. But I have been bloating in my stomach for about 8 months. I live in sweats lately and hve given up on jeans. If i take even 3 or 4 bites of food Iswell up horribly.

17

Probably a good idea to get your gallbladder checked as well.
And regarding diet, gluten free has helped me. Then after I gained 35 pounds on prednisone over past year I decided to do away with sugar. Even my beloved natural sugars like honey. Amazing how sugar was causing me to bloat. Good luck.

18

Thanks so much for all of the replys and suggestions. I had digestive problems many years before being diagnosed with lupus and found that avoiding gluten and other inflamatory foods plus adding fiber and probiotics pretty well totally fixed the problem. After being diagnosed i started to get esophagus spasms and had a lot of inflamation when they did a scope but the doc did not diagnose anything. With the diet changes, probiotics and some pump inhibitor meds i have been free of stomach problems for years.

MUGS, the reasons why for the cellcept are a long story but in short since i was diagnosed 3yrs ago my lupus has not been under control and even with pred I have worsening vasculitis in hands, feet, leg, arm, and ischemia on my brain due to vasculitis. I have tried methotrexate and i felt better but the vasculitis continued so they are trying cellcept. I will try prunes and extra water just in case it is a similar problem to yours. This bloating and pain is terrible, I am loosing a lot of hair right now and my one eye is drooping and now this bloating, the pain hurts but it is also effecting my self image and ability to stay positive. How did you or your doc know it was the cellcept all those years ago?

Thanks again for all the suggestions, I hope that we all find relief to this problem.

Meg

19

.

20

Gluten does cause bloat. I went gluten free for 6 weeks & the only difference is reduced bloat. I’m now eating light gluten… mainly because I found so many completely gluten free meals that I love but found gluten not to be a trigger for my flares. So maybe cutting down on gluten will help you. Hope you feel better soon.