Stomach bloating and swelling

• By minerva
• Reply 52936
• October 11, 2007 at 7:14 pm
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Yes I have, It all started in my colon some 40 years ago. I didn't know about Sarcoid then but I do remember thinking that it felt like everything was inflammed. It still is. I think that the inflammation either reuslting in or by the causing of Sarcoid can appear anywher in the body. That is the largest hurdle we Sarcoid people have in trying to convince our doctors (some of us anyway) that it is all related.

I've had this problem along with the other garden-variety type Sarcoid symptoms for all this time. It gets a little better but never goes away completly. Over the counter meds sometimes help, you have to experiment to discover which will work for you.

• By kabish
• Reply 52937
• October 12, 2007 at 10:24 pm
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I have been experiencing severe stomach and abdomen swelling for past 2 months, at times I feel pregnant. I seriously thought it was due to the prednisone I am on. Could it be the sarcoid? I take gas X, pepcid and have added prilosec. If anyone has other ideas I would love to hear them also!!
Kathy

• By Treorai
• Reply 52938
• October 14, 2007 at 9:56 am
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Hi,

I've had belly bloat for years myself. It looks as if your going to have a baby any day and your belly is hard. No matter where you lay or where you sit or stand nothing helps allieviate the pain in your belly. It's not gas. I was told it was my pancreas not being able to digest fats and being allergic to milk. I was never allergic to milk growing up but when I drink it or eat fast food or fried foods I suffer for it. My stomach doc told me to stop drinking milk for a week and do everything else normal and see if that's the culprit. The next week omit fried, fatty foods and see if that is the culprit. I have both problems and have to take enzymes when I eat any kind of fatty food and either drink lactaid or use the lactose pills if I have to have milk.

Hope this helps

Teri

• By BettyA
• Reply 52939 · In reply to 52938 by Treorai
• October 15, 2007 at 9:01 am
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I have had bloating for some years and everything you all said are possible culprits. I also can no longer drink milk or have dairy products. I'm glad you mentioned fast foods, I suffer everytime I have certain things, but have not yet eliminated most of it from my diet. I have, however, been diagnosed with portal hypertension, due to the Sarcoid getting into my liver. This has caused extreme swelling in my stomach. I am working toward getting off of steroids (almost 10 years non-stop is enough) and I will see how much my stomach goes down from that versus the portal hypertension. You guys take care. All we can do is keep trying.

• By Tammy5 (Inactive)
• Reply 52940
• October 16, 2007 at 11:34 am
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Thank you for posting this! I thought I was the only one. I have really been suffering from this problem for the past 6-8 months and was diagnosed with pulmonary sarcoidosis a little over a year ago (but suffered from it for several years before there was a diagnosis). If I eat anything it is so uncomfortable that it feels like I can't breathe. It has been getting progressively worse and is extremely uncomfortable. Is this a result of sarcoidosis or is there something else at work? Does anyone know... I find I am eating less and less to try to remain comfortable and breathe comfortably. The doctors I have seen are no help and suggest it is all in my head. I read everyone elses comments also (thanks to all of you!). I have altered my diet, considerable. It is when I eat any food. I am eating virtually no food and that is the only way I can stop the feeling of bloating and swelling that makes it so uncomfortable and even more difficult to breathe... Any ideas?

• By Dawn1973
• Reply 52941
• October 17, 2007 at 8:32 am
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Hello All
This happened to me again just yesterday. I was fine in the morning, my jeans fit loosly, all was good. Too busy to eat, had dr. appts, and a ton of errands to do. By mid day, My stomach was so swollen I looked 6 months pregnant and it was as hard as a rock. Not to mention the quazimoto shuffle walk I was doing to get from place to place!! LOL! But it hurts like heck and it is not gas. I do not find it to be a food or dairy issue with me. although as of recently I have had a lot of liver/gallbladder issues and remember having some stabbing pains in my right kidney in the morning(though no blood in the urine so I did not get alarmed). Urine had been that lovely iced tea color that it gets when gall bladder acts up, and thoguh my swelling has gone down in my belly, the urine still looks like iced tea. by last night, I could only fit into my pajama bottoms. It was killing me to breathe and hurt more to talk as my chest lymph nodes are all swollen right now and yesterday my heart rate was 150 without exertion!!! I suppose the swollen belly pushes everything above it up and closer together causing strain and pressure on our other organs!!!
Am supposed to see another gastro in Mid Nov. and seeing my boston Pulmo in 2 weeks on the 30th. Primary yesterday had no answers for anything (what else is new????) Did not even do a urinalysis! Time to find a Boston Primary!! Will keep you all posted on what the specialists say!!! in the mean time, know you are not alone!!! We are all in this together!!! Hang in there!!!
Be well
Dawn

• By Me2sarcoid
• Reply 315029
• March 11, 2009 at 4:01 am
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Yes, talking about the bloating feeling! My stomach is always bloated. Its bigger than it should be. I look pregnant, and trust me I'm not. Sarcoid is in my spleen and I think the the granuloma size has something to do with it.

• By gonenatural
• Reply 315064
• March 11, 2009 at 6:40 am
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I get swollen often and many times end up in the ER and the drs come and ask if it is the same pain, gall bladder and guts, and I say yes and my belly is checked and it is huge so I get strong muscle relaxers and sometimes pain meds and if I get both I feel better in 3 hrs, if not there is no living with me. I have been in the ER SCREAMING and no one comes to aid me.

I am more then tired of this and seeing two new surgeons next month and have a 20" cut to look for sarc in my liver, spleen all intestines and take out the gall bladder that may have a stone hidden in the bilerary tract. I will be in LOTS of pain for a bit and in the hospital a good week but kind of looking forward to it and hope it works or get some good answers.


I thought I was nuts for an enlarged belly and the drs made me feel this way. Not 1 out of some 12 I have seen explained to me why I was so enlarged. I wear a shirt 2x bigger and I can still outgrow it in less then 1 hour.

Best to you to,
GN

• By gonenatural
• Reply 315068
• March 11, 2009 at 6:47 am
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Another thing. Have you had your gall bladder, spleen or liver checked for inflammation or granulomas? That is a great start right there.
I have kidney issues, going to a specialists soon
gall stones and I said, may have one hidden in tract, they can't always be found, sometimes must have surgery
granulomas in my spleen
and was dx'd with a fatty liver which I learned from here could be a sarc liver and the next day the gastro dr told me the same thing.
Go get tested, demand tests
GN

• By pamk
• Reply 315136
• March 11, 2009 at 8:29 am
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I have bloating too. I can only wear a couple of pairs of loose elastic pants comfortably. I continue to hop on the scale thinking I am gaining weight but I am not. I could lose 15 pounds but my weight has been the same for months. I have trouble breathing and feel like more organs are squishing together and it is hard to get comfortable when it is time for bed. My heart beat speads up at times for no reason.

Here is what I know. I do not take prednisone and never had so this is not the cause. I have granulomas in my spleen which is enlarged. I have them in my lymphnodes in the lung area. These combined areas of swelling could be contributing to the swelling. Gall Bladder can be the culprit if foods affect it as it doesn't like fatty foods. I started eating reduced fat Cape Cod ships as a snack lately and my tummy is not pleased. The pain gets worse, no more cape cod chips for me. I was told I have a hiatal hernia GERD but this could all be the SARC. So repeat after me folks, THIS IS NOT IN OUR HEADS!

• By kydelight
• Reply 315261
• March 11, 2009 at 10:02 am
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I have had the same symptons of bloating in the abdomen. I too agree that the doctors look at you like it is all in your head and the hurting is terrible. I have very severe shoulder blade pain in the back also. My sarcoidosis affected my lymphnodes(sp) around my lungs. I have tried to stay off the prednisone as much as possible. I too have the same symptoms like pamk who posted just above me. I also have a hiatal hernia. My legs have been feeling very heavy and I have had lots of muscle spasms lately. Don't know what to think about that. My ankles hurt constantly.

• By MandieJo
• Reply 315281
• March 11, 2009 at 10:14 am
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AMEN! I've been getting bigger by the week here & I'm ready to scream!! I've always been a cubby girl but this is out of control! I feel like one of the balloons in the Thanksgiving parade! This started last summer & I thought it was because I had a really bad flare-up and wasn't able to walk for 6 weeks. I just figured I'd put on alot of weight from laying in bed but then when I weighed myself I hadn't gained a pound???? This is the weirdest thing so far... Sarcoidosis: it's like having our own King Kong attacking our bodies!
Together we are strong ~ Be Blessed
MandieJo

• By LJay
• Reply 315295
• March 11, 2009 at 10:20 am
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WOW,
I thought this was me just gaining weight but I couldnt explain the pain or the pressure. I admit, I have gained weight over the past year but I have also gained weight in the past. My stomach NEVER gets big like it is. And when I USED to do sit ups, I actually had ABS. NOW, I have been doing situps, situps and more situps and NO ABS.. It looks like I am pregnant, it hurts and its hard to breath, very uncomfortable.

Thanks for the post IFGODBEFORYOU619

• By Krumdawg
• Reply 315517
• March 11, 2009 at 12:45 pm
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I have bloating also, on my second flare up of neurosarcoidosis. This second time I went from 32" to 40"+. From 198 to 250+. And do know what is causing my bloating it is Predisone I am on 20mg right now. Trying to convince Doc to change from Pred to another drug but no luck. Pred is only maintaining my misery. I wish you luck.

Greg

• By red-rash
• Reply 316260
• March 12, 2009 at 2:48 am
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O THAT WHAT GOING ON WITH ME THAIK FOR THE INFO

• By jakedorkins
• Reply 316606
• March 12, 2009 at 10:53 am
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I have had neurosarcoidois for almost 30 years. The past 6 months I have experienced this bloating for the first time ever. The pressure on the stomach is unbelievable! And this pressure goes up and down daily just like your situations. I have attributed this to prednisone. I will soon find out as my doctor has lowered the prednisone to 10mg and started immuran (sp) with the intention of lowering the pred use even more. I have gained a lot of weight recently and breathing is difficult for the first time. I just had my lungs checked and they are fine. It is the pressure from the bloating on the lungs. I wheeze badly when excercising or walking uphill. I really appreciate hearing what others are experiencing and pray that we can come up with an answer and cure for this bloating problem. It is extemely uncomfortable. Oh, I had my gall bladder removed 5 years ago so that must not be the problem.
Take care good friends and keep sharing. J.

• By moredetermined
• Reply 316706
• March 12, 2009 at 12:02 pm
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I too experience the bloating and pressure. I am currently experiencing it along with acute pain in the upper right side (rib area). Just had u/s and scans earlier this week, said galbladder ok. Have cysts on liver, large but they don't think this is cause of pain as I have had these areas for some time. The pain is severe and now there is a feeling of fluid in the area. I almost feel like it is sloshing around in there. Primary doc felt area and said she felt swelling, fluid in area and deferred to internist since I was scheduled to see him 2 days later. He didn't even exam me said maybe I tore intercostal muscle. Didn't get anything for pain. PCP gave me 10 pain pills but those didn't touch it. Don't know what to do now. Still in pain, Think I will call again.

• By Me2sarcoid
• Reply 316840
• March 12, 2009 at 2:08 pm
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I am not currently on prednisone. The bloating of my stomach does go upsome days and then back down. I am really puzzled to read what we all have in common. My ankles hurt all the time. Our syptoms seem to mimic alot of other diseases too! I really want to know more about if/or how sarc affects the joints and bones in our bodies. I have osteoarthritis in my back, hips, and knees. Selah!

• By tambo007
• Reply 316897
• March 12, 2009 at 2:56 pm
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Thank god - its not just me then. I thought i was crazy because i bloat overnight. So weird. Don't know if this helps at all but i went to get my PAP yesterday and they found i have Adenomyosis, which has to do with the Uterus swelling. I didn't have it last year but now i do. I'm not saying all of you have it but it could be something to check into. Also Salt makes you bloat. Hope this helped.

• By gonenatural
• Reply 317531 · In reply to 316606 by jakedorkins
• March 13, 2009 at 5:39 am
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Hi Jakedorkins

Just wanted to inform you if you didn't know you can still get a stone in what is left over in your bilerary tract. It is rare but does happen.

My gastro kept insisting that I didn't have a stone in my tract and I had tests, tests and more tests and then in the ER, again. So I stormed into his office and he finally admitted that I could have a stone there and no matter how many tests I have it may never be found until cut open. He doesn't operate. So I see 2 surgeons next month because he wants my intestines, spleen, liver and stomach biopsied and my gall bladder out. He is trying to figure out why I have so many different belly issues that resemble 5 different diseases, minimum. He thinks I am loaded with Sarc in my gut. I hope they find something cause this is a very serious surgery.

Maybe you want to get your tract rechecked for a stone.
GN