Does anyone else have a lot of inflammation in your stomach?? | Lupus Forums at The Lupus Site
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Does anyone else have a lot of inflammation in your stomach??

Discussion in 'Living with lupus' started by Amy7575, Dec 31, 2017.

  1. Amy7575

    Amy7575 Registered

    Along with many other things, I've been finding out from procedures that I have a LOT of inflammation from like, everything in my stomach, esophagus, and more. Does anyone else have any issue's like this?? I'm not asking for medical advice, I'm currently having my doctor give me a referral to a new Rheumy, but I'm just wondering if anyone else has even heard of this?? I even had to have my gallbladder removed in June because it was squeezing to fast, and really inflamed and I had gallstones also.

    The specialist that I'm going to that has found out about this much inflammation said that he's convinced with how much inflammation I have going on that it's Lupus related.

    It's like all of my problems are so well hidden, like I don't have the face rash that some people get with Lupus, but I've got so much going on in me, that I'm really scared of what this means.
    Lupusdude likes this.
  2. x_claire_x

    x_claire_x Moderator

    Hi Amy...Lupus is soooo individual and varied it can certainly cause any inflammatory problems in virtually any part of the body....that makes it very hard to give a definitive diagnosis and causes a lot of, even very experienced doctors, to hesitate and consider carefully before giving a SLE diagnosis. It is called the great mimicker because it is so good at giving the runaround diagnostically ! Gastrointestinal probs are pretty common here..... and your gallbladder is part of that system :0(( . I have issues with my gut but it is much better now that the disease is calm (for now !)
    Have you had bloods taken or does that have to be done via the Rheumy ? You say a new Rheumy ....were you under care already ?
    Here they prefer the Rheumy's to take the bloods so they are interpreted correctly and the right bloods are ordered, GPs just aren't specialised enough generally.

    Let us hope that appointment goes well and you get some treatment to calm things a bit........... get ready for your appointment, a sheet of A4 summarising your symptoms, pain grading them ( a daily diary is a fab idea) and taking photos of anything visible including swellings, discolouration, rashes etc and note each day the weather and what activities you are doing and what you can't do due to your symptoms, give specific examples, like I can't mash potatoes/blow dry hair / lift stuff from a high cupboard................get a copy of the A4 for the Rheumy to keep in his files and keep it short and to the point, prioritising the worst symptoms first.

    Let us know how you get on................Claire
    Last edited: Jan 3, 2018
    Lupusdude likes this.
  3. Lupusdude

    Lupusdude Registered

    HI Amy,
    Claire is spot on with her advice. It's a tricky condition and coming to terms with it is one of the most difficult things you'll ever face. Peace and good wishes for a healthy new year.
  4. Amy7575

    Amy7575 Registered

    Thank you both for replying, I really appreciate it. I've already been diagnosed with Lupus, a few years ago by a Rheumy, and then by another specialist, a nephrologist, and he did more in depth tests, and has been taking care of me until I can find a new rheumy because I've just been seeing a nurse preactitionar. She is not the one that first diagnosed me. Right after he diagnosed me, he moved away. ( Just so you know, I've had a lot of UTI's and Kidney infections and he was keeping track that it didn't get to my Kidneys. Protein has been found in my urine, so he's keeping a close eye on it)
    Anyway, I definitely have Lupus.
    I just wasn't sure if it could do things like that, I know it can do many other things, I just wasn't sure about it making things in my stomach inflamed or not.
    I hadn't thought of making a dairy about how I've been feeling, and what my days are like, even about what is difficult for me to do and stuff. That is a great idea. Thank you x_claire_x for that advice, I will be sure to do that. I will get a notebook just for that and start writing in it as soon as possible!!

    And Lupusdude, it definitely is a difficult thing to face. My grandmother passed away from it years ago, at the time I didn't even know what Lupus was really, I was so young. And then hearing the words that I have it, all I could picture was what my Grandmother went through. ( I found out a lot more than I realized from back when she had it, everything she had to deal with. ) I started dealing with quite a bit of it myself, and that might be one reason I get scared when something new, like with everything in my stomach being inflamed, and of course the many other things that it's been causing.
    Lupusdude and x_claire_x like this.
  5. tuffymason

    tuffymason Registered

    Hi Amy, sorry you have been through so much. Learning of your situation after the loss of your grandma must have been
    a shock.
    For me Lupus is so many things and such a huge part of my life.
    I have had to try sort out the most tangled ball of yarn, my rheumy has been there for me though.
    It sounds like you have some good medical care behind you too. Anyone who listens is a valuable tool
    when learning to live with Lupus. Also, anyone who doesn’t....well I won’t waste my time or energy on them.
    It’s hard at first but soon you will know what I mean. Trying to get close to or gain an understanding with someone who
    just isn’t available is exhausting, my first I feel was a scientist, not a doctor so much. He had no ears, just paper and opinions and orders. It just didn’t work.
    But connecting with a good doctor is wonderful. (I will say a little prayer that you get the same)
    My second and current rheumy always makes me feel free and confident to say anything, to agree, or have concerns. I am so grateful to her. Plus she learns allot from me because of that too. For example, I have a very low tolerance for medication, any medication. We learned that together.
    It matters allot to me as learning about what works and what doen’t pertains especially to treatment options.
    The learning curve especially when you are new to it is big, and even after that initial understanding Lupus is a constant
    learning curve. But it does get easier to understand and predict.

    My tummy is always on my close whatch. I have a very slow motility, maybe to do with Sjögren’s syndrome.
    I think for me taking care of my stomach and thus my entire GI tract is imperative. If it gets inflamed then
    it seems everybody joins in!
    I take a product called Restoralax in water every night and also a medication called Domperidone. It helps my stomach to be more normal. I also am very aware of what I can eat and when.
    When my tummy does get off the rails I live on chicken soup and sliced fresh fruit. The kind in the little wheels at the grocer. I can nibble easily all day. The water/moisture and coolness really is helpful to calm inflamed mouth, esophagus and stomach tissue and really can calm the savage beast!
    Amy7575 likes this.
  6. Amy7575

    Amy7575 Registered

    Do you know if it's possible to have Crohnes and Lupus??
    Brandy McDonald likes this.
  7. x_claire_x

    x_claire_x Moderator

    'SLE is a multisystemic disease; therefore, patients frequently present with GI disorders that may be clinically similar to CD. However, there are some differences [4]. Compared to SLE, CD presents more frequently as diarrhea, abdominal pain, and anal lesions'

    'Although patients with SLE may experience various GI disorders, SLE and CD rarely coexist'

    These quotes I pulled up from ncbi paper seems that Crohns and SLE are very rare and usually present as it states above....this would suggest it is highly likely your problems are not Crohns related, but obviously it needs to be ruled out to be sure.

    I hope you find some definitive answers................Claire
  8. wolf1

    wolf1 Registered

    I have a lot of inflimation in my stomach. Just been through all the tests for stomach and bowels. I have aspirin corrosion in my stomach, the inflammation is bad and still there. Haven't had all the results Back yet but I have to take omeprazole twice a day now.

    Having terrible problems so hope I get all results back soon
    Take care.
  9. Smile Of Life

    Smile Of Life Duncan

    I get stomach cramps that are beyond belief. I have been rushed to hospital by ambulance a few times to have drugs injected. Now as soon as I feel the first twinge I use Buscopan and it works most times. But I've not seen a pattern, such as food eaten or activity. Like all my lupus it's totally random. But luckily I virtually always reset over night: I either start the next day with nothing or something completely different! So I am luckier than the problems you are having, Amy. I do feel for you because the feeling is just not pleasant. Good luck with the new rheumy. I had to change a few before I found a good one.
    Lupusdude likes this.
  10. susane

    susane Registered

    I constantly have the gastro issues. I will go a few days doing ok, and then my stomach will cramp, and then it's diahrea. So, then I take some lomotil or loperimide to stop it. It's always an ongoing thing with me.

    Lupusdude likes this.
  11. Lupusdude

    Lupusdude Registered

    I can also relate to all the cramping and stomach issues. Watching what I eat helps me. However, if I'm not really careful, I still have abdominal pain. Good luck!
  12. tuffymason

    tuffymason Registered

    I am still having a bad time in this department. It has been scared bad this time.
    I have had terrible belly bloating with fluid build up. I look like I ate a basket ball.
    Pain after I eat and pain if I don’t eat.
    I have a terrible time eating two or three bites and I feel like I ate the entire turkey dinner by myself!
    I have lost weight quite quickly and had to go to my next size down clothes in February and this week
    I am so big I can’t wear them again???? But I’m not eating, I can’t????
    I have had minimally elevated liver enzymes..a few times now...
    I had an ultrasound and it showed an issue with the gallbladder wall...adenomyotis...or something....
    it is not the first time that has happened.
    In 2016 I had issues with my platelets dropping, and I remember my right side under my rib just burn ached..
    An ultrasound then showed the same thing...and all was dismissed.....
    From what I read the constant inflammation is very dangerous, it promotes cancer cell growth...
    So why have I had such terrible tummy problems for so long, years even and no doctor has ever thought about that
    twice. They diagnosed slow motility and gave me domperidone and Restoralax...yes it helps keep things working
    but does nothing for the inflammation and pain????
    My ESR is at 92, it has only been higher once at 100, my rheumatologist was so concerned.
    My CRP is 13 another inflammatory marker that is quite high.
    I don’t understand.
    I was lucky enough to get an appointment with the gastroenterologist for Monday, but I am feeling it is pointless
    as the entire laundry list of issues seems to go in-noticed. Why is that?
    Do I need to walk into the office and just tell her I want some proper diagnostics?
    I don’t usually do that, but feel from my history and knowing the risks that if I don’t do it that one day I will
    get noticed for all the wrong reasons and then the only one who loses is me...not them....
    What is up with the ignored GI issues?
    Thanks, Tuffymason
    Lupusdude likes this.
  13. Lupusdude

    Lupusdude Registered

    I can't believe your rheumy is doing nothing about the raised ESR and CRP.
  14. debatat

    debatat Moderator

    It sounds as though something is wrong, you need to stand your ground and insist they listen. Explain your concerns and ask that they investigate what is going on. I wish you well.
  15. susane

    susane Registered

    Those two markers show you clearly have a lot of inflammation going on. I would insist to be tested for many other things, and if you have to go to the emergency room and get help. Your stomach that way too shows something going on that needs dealt with.

  16. tuffymason

    tuffymason Registered

    So I got into the gastroenterology clinic today. Wasn’t thrilled to find out I wouldn’t see my own Dr.
    The entire clinic “takes turns” , so dumb. No continuity. Plus it is a teaching
    I can’t say after clearly stating this unmanageable mess, that they get it.
    They think it could be two different things.
    One nerve entrapment in a nerve that runs around my rib cage....which accounts for the sharp constant pain
    Two gallbladder. My gallbladder has some kind of strange issue with the interior wall....but it is I am told
    benign....but he thinks maybe my gallbladder isn’t emptying properly.
    So I need some test with dye...
    If that’s not it....I suggested a stomach ulcer....which he said was possible too.
    I am on pred long term, Tylenol and Advil when needed and when I am in real trouble painwise Meloxicam
    Not all at once of coarse but I alternate. Still they anti-inflammitories, and are hard on the stomach.
    He also spoke of inflammation of the abdominal wall....which would explain the widespread pain, not just the
    stomach issues.
    I asked if he thought it could be “just Lupus” and a bad flare, he agreed to that too!
    So you can imagine how I feel, “do these guys have any idea of what is really going on, or are these ideas
    all hunches”
    I imagined them all standing in the hall in a circle (pretending to discuss) flipping a coin...or taking odds...
    Has anyone gone through GI/Stomach issues? Is this how it normally is? Nothing definite, more a process
    of elimination? Start with an educated guess or pick something and start testing?
    Or do I need to go to a larger Center and find a better hospital/dr.
    I did tell them today I am done with this, I am sick, tired, not eating well at all and that the rheumy has taught
    me why we need to high inflammation hard, it is no friend of the body and can generate cancer.....and so I won’t be taking I dunno for an answer. They did agree.
    Thanks everyone, Tuffymason

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