What’s Next?

I was diagnosed with mild gastroparesis about five years ago.  All this means it that my stomach is slow, stupid and lazy.  What I eat or drink sits in there longer than it should before being pushed into my small intestine.  The severity fluctuates.  Anything from heat to a recent viral bug can exacerbate it.  A couple of years ago I wasn’t able to keep anything down for over a month and the GI jerk face threw a prescription at me for Metoclopramide, a gastric prokinetic drug (it makes a stomach get off of its keister and do some frickin’ work).  He said “Call it what you want.  Gastroparesis, functional dyspepsia, whatever.  It’s all the same and I can’t help you.”

Thanks, man.  Is it any wonder I avoided him like he was made of poison ivy?  November of 2015 I had the same problem again and was hospitalized, which meant a follow-up at gastroenterology was scheduled for me.  Booooo!  This time he prescribed promethazine suppositories because I couldn’t even keep pills down.  Great.

Recently, my guess is five months of not being able to eat much because I fill up quickly, have zero appetite, major reflux, and occasionally just blarrrg a little while after eating.  It’s one thing to say eating is an issue at an appointment.  It’s another thing to be monitored so closely that they see what happens every time I try to eat or drink.  First I did TPN, then I tried soft foods and oral meds.  Nope and nope.  That’s when I had my first NJ tube put in.  After a couple of weeks of constant clogs, I had a larger tube put in.  Larger=more discomfort=more gagging.  It was a battle between wanting to say ‘fuckit’ and knowing that without it, I’d starve to death.

I had an upper endoscopy earlier this week for two reasons.  1) To see if there’s something structural that’s causing the contents of my stomach to back up and 2) To determine if the melena (black, tarry stool synonymous with blood from the upper/mid GI tract) is from gastric bleeding.  It was negative on both counts, but there were plenty of non-bleeding ulcers.  Appearance-wise, the dude who did the endoscopy said he’s fairly confident it’s gastroduodenal Crohn’s disease.  That has been tossed around as a possibility for quite a while, but I’ve only had three upper endoscopies to my dozen colonoscopies.  The top-side has been ignored because I have documented “mild gastroparesis”.  The biopsies were positive for Crohn’s type inflammation, so there we go.  The pixies have moved into my stomach.  As for the bleeding, it’s of concern.  I’ve been on high dose steroids for several weeks which should have taken care of it.  Given the fragile state of my guts and a high likelihood of perforation, I find myself in yet another “wait and see” scenario.

Early yesterday morning I pulled my NJ tube out while I was half-asleep.  The doctor on-call said I’d need another one.  I said no, then said no to everyone else who told me I’d have to have another one put in.  I was saying no just for the sake of saying no.  This is how I’ve been operating lately – like a fucking five year old.  I’m so unbelievably frustrated with my life that pissing people off is the only way I feel I have power over anything.

When my endoscopy was scheduled, I was also scheduled for another gastric emptying study that I completed this morning.  By some freakish miracle, I was able to keep my radioactive breakfast down long enough to complete the 4 hour study.  I went back to my room to start my last of five plasmapheresis plasma exchanges that was originally scheduled for tomorrow, but I’m being discharged tomorrow per my request.  I had just fallen asleep when the GI hooker waltzed in and said my four hour retention of stomach contents was 65%, anything greater than 10% is gastroparesis and anything over 50% is “very severe” gastroparesis.  So here I am, without a tube and with very severe gastroparesis and gastric Crohn’s.

Normally they’d throw pharmaceuticals at it, but in my case it’s far too dangerous.  That leaves us three options (or four, if you count doing nothing an option – I certainly do).

  1. Another NJ tube
  2. GJ-tube, which is surgically placed through the abdominal wall
  3. Implanting a gastric electrical stimulator

On top of everything else (heart failure, kidney failure, seizures, neuromyelitis, etc), it’s just too much.  I’ve had plenty of time to think about everything, to the point of simultaneously driving myself insane and into a deep depression.  There are no guarantees I’ll ever feel better and though I keep telling myself it’s a possibility, I continue to go downhill.  I don’t want to die, but what I have isn’t a life I want either.

Tomorrow I’ll be discharged against medical advice and I’m not sure where I’ll go from here.  What I want my plan to be when I inevitably find myself in need of ‘saving’ all over again.  I’m not catastrophizing or being overly dramatic, I’m being realistic.  I am majorly depressed and I know it’s a problem.  It’s preventing me from making any sort of decision about future care.  I’m afraid that by admitting to this, I’ll lose my rights to have a say in any of it.

If not for Western medicine, I’d have been dead two months ago and several times before that.  The cost is my spirit.  It’s gone.  In that aspect I died a long time ago.

15 thoughts on “What’s Next?

  1. Hey. Sorry to hear all this. You seem so brave and logical facing what is happening to you. While I suspect you still have some courage left to deal with this, and you may actually get a break soon, you could also follow up option 5. It’s a big thing to say, but is it worth getting a palliative care consult? There I’ve said it. This could be just to rule this out, or try to get back some personal control in this shitty situation. Certainly a break from hospital life seems needed. Best wishes.

    Liked by 1 person

  2. I can’t “like ” this because it’s the saddest thing I’ve read and I feel wrong hitting “like”. I can’t imagine how things are for you. You haven’t mentioned visitors much recently, so I’m worried you don’t have the emotional and spiritual support you need from your family. I sincerely hope I’m wrong πŸ’œ

    Liked by 1 person

  3. This was very tough to read. Not only because it is upsetting* to understand you are in so much ‘discomfort’, that you are so completely unhappy, but also because you are being logical, realistic and honest about your situation. I have always tried to live, but I have 1/6 of the load you have to bear and I do not know how I would respond if I were you. I just hope that whatever you decide to do, your wishes are respected, you get all the support – medical, emotional, physical – that you need and want, and that everything goes as well as it can. *It’s a seemingly trivial word, as is ‘discomfort’ and ‘unhappy’, but I mean them sincerely, and to their fullest power. Good Luck lady. x

    Liked by 1 person

  4. I agree with the above poster. This was a tough read. I don’t think there are many of us who can even imagine being in your position or what decisions we would be making in your place, or hell, even if we would have made it this far. I think if anything I feel guilty for feeling like I should say something that would convince you to keep fighting because I know how long you have been holding on and giving it your all. You deserve peace and it is so unfair that through all the medical interventions you still haven’t been able to achieve any. I hope that you are able to find what you need while making this decision and know that you have people who care for and support you, even if they don’t quite understand. xoxo

    Liked by 1 person

  5. Oh Kara, even in your darkest hour you express yourself so clearly.
    My heart bleeds for you, and I don’t say that lightly.
    You are depressed, I can hear it. Who wouldn’t be in your situation?
    My hubby said, if you are leaving the hospital, go do something you enjoy.
    He also said you can come live with us….he wasn’t kidding. He hears about you often.
    You are a special person. You make a difference in people’s lives. Just know that.
    As hard as it was to read, I’m glad you wrote. I’m glad you feel you have a safe place to tell your story.
    My thoughts are with you.

    Like

  6. Facing organ failure a bit myself. Can’t break food down without taking enzymes, appetite is disappearing, pain, kidney trouble, pancreatic insufficiency, … My heart goes out to you, and I’m expecting myself to be in a situation more similar to you soon. Crohns runs in the family, and having lifelong digestive problems, I keep waiting for that DX. That or colon cancer as they removed a precancerous polyp a few years ago. I hope the pit you’re in lately shows you a way out soon and you start to feel better. I know it’s rough. ❀

    Liked by 1 person

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