Life · Uncategorized

Let’s add more diseases to the mix shall we?

Finally yesterday I had my long awaited appointment with my GP after the last round of tests. A lot has been riding on it, weeks more of waiting for answers as my symptoms have slowly progressed from inconvenient and annoying to persistent and debilitating. Worse more, this isn’t the first time it’s happened, it’s just the first time anyone’s taken it more seriously than just “eat more fiber, drink more water”.

We had opted for the less invasive tests this round. Scopes and biopsies have a few higher risks like recovery time and risk of infection (for those like me who seem to pick one up by just looking at bacteria, this is a big no no) so we had hoped that a giant blood panel, a contrast CT and some x-rays would be enough to diagnose the problem, and then of course move on to treating it.


While yes, I’m glad there isn’t some giant tumor or cyst making itself comfortable in the middle of my abdomen, something like another bowel obstruction would have been a clear cut answer and then a straight forward fix. An answer and a plan to make it better.

Instead its all just a big pile of inflammation. Unfortunately with a CT or x-ray, this still leaves answers really vague. The next batch of tests is based on the findings of general severe inflammation along with a compilation of symptoms and the fact that this isn’t an accute issue (like food poisoning, the flu or a baterial overgrowth). All together it has narrowed it down to a few front contenders. As if having ONE new chronic condition to add to the list isn’t bad enough, I’ve been told that considering some of my other symptoms and the lupus, it’s possible to have more than one of these new things wrong with my gut at the same time since none of them completely cover all the symptoms all together.

The 3 front runners for what is now wrong with Ms. Mango’s gut are:

Crohn’s Disease – Rather a rare sight apparently for people with lupus, but more and more doctors are starting to test for it instead of jumping to the conclusion that intestinal issues are automatically caused by vasculitis or an autoimmune flare up of lupus attacking the internal organs. I have had IBS long before getting diagnosed with lupus and I was told back then that it could progress into something worse. This is what my GP thinks is going on based on his information. I have a scope and a biopsy request rushed to the hospital in the big city.

Autonomic Nervous System Dysfunction – A possible condition that affects digestion but also could be to blame for may of my other seemingly random new symptoms (like uncontrollable heart rate, blood pressure/volume issues, dizziness and inability to regulate my body temperature). Both my GP and my Rheumatologist have mentioned this a few times as a possible additional issue on top of everything else. So there is a tilt table test and a host of other random nervous system gadgets to be hooked up to in my near future.

Gastrointestinal Vasculitis  – If you could talk to my Rheumatologist right now (you cant and I can’t, she’s booked like 8 months in advance) she would tell you that along with nerve issues, this right here is probably the problem. Vasculitis effecting one area, mean’s its more likely to effect others. On top of that it is a somewhat common complication of SLE and since at the moment I’m not on steroids or immunosupressant drugs, if this is the cause of it all, it’s completely left untreated. Like I said earlier though, it really doesn’t cover all of the symptoms and my gut doesn’t always flare up at the same time as the rest of my lupus related issues. There is nothing extra at the moment that can test for this exclusively, so waiting on the other test results and seeing what the scope is able to find…. is pretty much the best route.

I had to take an insane amount of information in yesterday and I’m still kind of taken by surprise at how concerned my doctor is at the moment. I mean I get it, blood, mucus, pain, swelling and overall badness but I don’t think I’ve ever seen a doctor show that much legitimate emotion about getting to the root of the problem before things get worse and making sure a patient takes care of themselves and doesn’t make things worse. His usual client base is either 8 year old kids with UTI’s or ear infections, or elderly patients from the care home next to the hospital that need regular care for their old age conditions. I guess I am rather a unique case for a small town doctor to deal with.

At this point I’m more fed up than I am scared or concerned. I hit those points in the past and now it feels more like a “OK yea, my body is trying to kill me, can we just figure out what it is finally…. GAWD!” I don’t like knowing something is wrong and not knowing WHAT is wrong, or how to fix it.

No matter what the tests find, it looks like at least one other chronic diagnosis is going to be added to the already long list and my avoidance of steroids and other more potent drugs is going to be coming to an end. As my dad so delicately put it (for the 3rd time this past year) “At least you don’t have cancer.”

…..Bite me.



4 thoughts on “Let’s add more diseases to the mix shall we?

  1. Oh no, he didn’t! Yes, be glad you don’t have something that has a high remission rate if caught early, and has had billions and billions of dollars thrown into research and medication development. It’s much better to have a very rare disease that no one REALLY knows how to treat. Cancer is awful, terrible, and no picnic, but still…

    When I was misdiagnosed with celiac disease, I cried for days…because I love wheat-stuffs, particularly beer. By the time Crohn’s rolled around, I was indifferent. Now we’re all the way up to neurological stuff, and I can’t be bothered to care anymore. The doctors had me screened for depression and suicide risk during all of my inpatient stays because “bad” news didn’t affect me one bit. I’d still like to figure out what started it all in the first place, but that’s a pipe dream until more funding goes toward auto-immune disease research.

    I’ve got a post of pre-colonoscopy prep tips if you’ve never had one before. There are a bunch of things I wished I had done for the first few I had (I’m a slow study). I won’t junk up your comments with a link, it’s in my Oct 2014 archive. 🙂

    Liked by 1 person

    1. Exactly! I think so many people compare everything to cancer is because it’s the worst thing THEY know of. I get where he’s coming from being that his (now ex) wife had quite severe cancer shortly after they met and my grandmother is a breast cancer survivor, along with being a pastor means he’s done his fair share of funerals for people who haven’t been so luck as to survive through it. Still it’s not the only or even the worst disease to effect people and no one deserves the constant reminder ‘that it could be worse’ especially when there’s so little research and development done on other diseases in comparison. I definitely need all the info I can get on preparing for the tube… last time I had an epidural and it was an emergency while i was already in the hospital, there was no time to prep and I was so hazy on the juice that I don’t recall much of it.

      Liked by 1 person

  2. I know how you feel. I have way to many diagnosis and none seem helpful. I even had a doctor tell me “you definitely have a connective tissue disorder that is the root cause of all your conditions. But it has not been discovered yet. Well put you on the list and inform you when it is.”
    And the treatment tha t saves me from life threatening reactions makes me get crazy dangerous infections that require weeks of antibiotics, so I know what you mean by tha t too.
    I hate when people reference cancer or other diseases! What do they expect to happen? Its just so insensitive.
    “I feel so sick I can’t do anything and my doctors don’t know what to do.”
    “At least you’re not dying.”
    “Feel so much better thanks.”

    Liked by 2 people

    1. No kidding! People should really think how their response is going to effect someone before they blurt out crap like that. Not only is it insensitive but it can make us feel guilty because we aren’t dying yet and still feel the need for help and validation. It seems completely like a ‘it takes one to know one’ type of deal. At least we can band together for support 🙂

      Liked by 1 person

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