Dream run has had a hiccup. - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Dream run has had a hiccup.


So, i've felt great for just over a year now. A few nights ago I had a bowel obstruction and ended up in hospital. I waited until the pain was unbearable and my husband took me to ED at 2am. Several shots of morphine later the fight began over my APS and Raynaud's. I knew I had cover from Rivaroxaban for 36 to 48 hours so knew any surgery wasn't happening anytime soon (I hoped!) and got the surgery team to agree with this strategy. Being a bit hazy when they came to me with 'your meds' and after 36 hours I got 1x100mg aspirin. OK- but where's the rest of my regular meds?

Saturday morning is not a good time to educate junior doctors who have no idea about treating the 'whole' patient as opposed to being blinkered and seeing only what is in front of them! After a wait of several hours I was allowed a shot of heparin after telling them if I had a PE or stroke it would be on their heads. (Pain killers still working at this stage, so I could fight!) 6 attempts at an NG tube failed (my personal worst horror as far as intervention goes) and 8 attempted cannulas with various doctors and finally begging them to get an U/S machine before allowing them near me again. Finally got one in late Thurs evening and told staff to keep an eye on it. After nearly 24 hours with no sleep I went to the land of nod and woke up not being able to bend my arm, which was so hard and swollen because the cannula had tissued. Fortunately bowel eventually started to work again and I was finally allowed to go home when I did a poo. (Sorry for TMI!)

It's Mother's day here today so I was able to come home much relieved, in all ways!! It's cold where I am so I'm going to take advantage of my bed and electric blanket :)

10 Replies

Oh bless you!

I hope when you read your responses it’s after you have slept many nice wonderful cozy deep hours of perfect sleep.

Sounds like you have taken a trip into my awful world. Veins , awful bowels and all.

They sonogram my veins always before starting IV.

So did you wind up in surgery? That wasn’t quite clear... it just by passing the GI system via NG tube?

And why did you obstruct? Not adhesion? Are you certain it was an actual obstruction verified by scan? You are welcome to PM me- I just want to make sure you are not having dysautonomia.... or clotting ( micro) to tiny little capillaries that innervate the bowels that enable the normal parastalysis...

I’ve been through hell drug backward with this on and out of surgery.

Ozchick in reply to KellyInTexas

I dodged the scalpel, hence I'm home. NG tube failed totally-started a bleed in one nostril after 3 tries and couldn't get past to the throat on the other. They had one try with just lube, then a spray (didn't numb) and finally male catheter jelly (a sort of lube and numbing agent -self descriptive and tasted ghastly) I then refused further tries!!

My daughter then said to refuse all cannulas in the future by being polite, firm but not rude until an U/S machine is found. Usually what happens is the doctor will say 'I'm really good at this - I'll get it in' NO they don't. Tell them that last time I had a line in my neck and they may listen!!!

I've had several surgeries for bowel obstructions and unfortunately once scar tissue forms, as well as adhesions, there is always a perfect storm for blockages. This one was confirmed by CT and followed by the "I don't want surgery right now" conversation. Most of the mild ones I just stop eating and stick to fluids and hopefully it gets better. (I am an eternal optimist++ :) )

I have had a lovely snooze and an easy day so there is just residual tenderness rather than the severe pain. I'm working on an invention of a tube that goes from mouth to anus and bypasses all the stuff in between that causes me problems ;)

HollyHeskiAdministrator in reply to Ozchick

All sounds terrible - wishing you a speedy recovery.

Big hug & kisses xxxx

KellyInTexasAdministrator in reply to Ozchick

Yes. Another surgery only increases scars, and the probability of more adhesions in the future. ( I’m told here the average time from a new surgery to new adhesion is about 6 years... I actually asked. Who knows.)

Oh yes.. “ don’t worry... I’m really good at this... “ and then they some how are angry when it doesn’t go well... they go quiet and tight lipped after you rally have no veins left to blow of infiltrate. Like it’s some how your fault.

I’ve started by very nicely saying from the start- it’s ME, not you- the disease I have attacks the inner lining of the cell membranes ( phospholipids) that make up the vessels of the body- so the veins are just compromised to begin with. Additionally, I have clots here and there- so best to have a look to make sure you have good flow.

I'm sorry to hear about ur ordeal.

It's so hard getting dr to treat a whole person instead of the thing u actually present with.

Interesting to read why they find it so hard to get a line in or bloods out. I'm going to copy n paste it onto my emergency meds info. Thank you!

Hope ur back to normal quickly. Please keep an eye on ur INR. After having a tummy bug and not eating much for a week, mine shot up to 11.2. Vit k brought it down to 4.7. After 3-days 7.8. Two days later 11.2 again! Vit k brought it down to 3.8. See what today brings!

They try to predict what it will be based on previous readings but it never complies. Be careful. 💋

Ozchick in reply to WendyWoo50

Thanks, Wendy. I'm on Rivaroxaban so INR is one less thing to worry about :)


Goodness me, well done for the fighting spirit on the battle front! I hope you recover really well and can put it behind you. MaryF

I hope you continue to feel better and surgery will not be needed. Are you continuing a liquid diet now?

Ozchick in reply to Wittycjt

For the moment, i am. i have learned to be a bit cautious over the years!

So sorry you went through so much pain and agony. I sure hope when you read this you are feeling better. Bless you Ozchick!

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