Pulmonary Embolism following Surgery

[CyCrohn'sGuy]

So this is how ****** my life has been recently. I had a resection performed on 24th August for a perforated ileum and have been recovering nicely and started Humira, started to gain weight and have been pain free for the first time in a long, long, long time. Things were really looking up. I felt happier, more positive and gained a much fresher and more mature outlook on life. Then last Friday I open up the office, turned on the computers, ordered a cup of tea from the cafe downstars and started work.

My tea arrived after about 10 minutes and the delivery girl found me on the floor clutching my chest and gasping for air. I believed I was having a heart attack and was about to die and I remember thinking how ironic this was to die of a heart attack after all the Crohn's crap I had been through. Anyway, I was taken to the ER where I had a chest x ray which ruled out a heart condition and a CT scan which diagnosed a blockage in one of the peripharal arteries in my lungs. I was admitted, put on oxygen and anti-coagulants and stayed in for 7 days. I left hospital today with a bag full of medication and am due back in on Monday for a check up to see if my blood has thinned out sufficiently. I have to inject myself 4 times a day and have also been prescribed Warfarin.

In retrospect I should have known what would happen. An embolism is very common after major surgery and I had some symptoms such as night cramps, cold knees, pins and needles in my thighs. I realised these symptoms were due to being immobile for a few weeks following the surgery but did not know they would develop into a fully fledged Pulmonary Embolism.

I honestly feel like I have been hit by a truck and I am scared of this happening again which is a possibility my 24 year old doctor told me. And next time there is a possibility it could be much worse.

This all really sucks!!!! I am tired of being sick. Tired of doctors. Tired of nurses. Tired of hospitals and medication. I want my life back and if I can't have it back then what's the ******* point of carrying on?

 

[InkyStinky]

Hey there - so sorry to hear about all this. I was dx'd with DVT and bilateral PE last Dec. Before that I hadn't been in the hospital/had surgery - just "came out of the blue", most likely due to my Crohn's flare.

I hear you on being scared of new/worse clots. In the months after I was dx'd I was terrified of just that. Have to have my INR checked every week to be sure I'm thin enough to cut down the risk of clots but not so much as to start my gut bleeding. After nearly a yr I've started to tune it out a bit - think my mind has just put up a smoke screen so I don't have to think about it all the time.

As for wanting your life back --- that's right where I'm at. As for how to carry on --- I do because of my family and my dog, as trite as that sounds. Do you have any close family/friends who you can spill your guts to (sorry for the horrible pun)?

 

[Scifimom]

Gaaaahhhh I hate it when this happens. its like "Am I EVER going to get a brake?" Sorry CYcrohns for feeling so crappy.

Κώστα λυπάμαι πολυ που είσαι χάλια, αν μπορώ να βοηθήσω ή αν θες να μιλήσεις με κάποιον που περνάει τα ίδια στείλε μου pm.

Scifimom

:hang:

 

[DFinn]

Hello. Sorry to hear about your situation. You're lucky you survived the PE. I think they just will put you on blood thinners. Compared to the effects and drugs for Crohn's, PE medications seem tame.

If you had a re-section, make sure you get your B-12 levels checked. I get low, so I need shots every month or so. (In case you're wondering, I haven't heard of B-12 and PE to be related.)

 

[Nyx]

I had the pleasure of getting 2 pulmonary embolisms after my surgery. Aren't they a joy?? It's especially wonderful when you wind up in ICU on Christmas day and your family freaks out when they come visit you and the nurses tell them that you've been moved because you can't breathe! I was fine...and I rather enjoyed the ICU...the beds in there were great, and I pretty much did whatever I wanted (the 2 visitors at a time rule didn't apply to me, nor did the visiting hours times...heehee).

Anyway, I was on heparin injections in the hospital, then went to oral warfarin for 4 months after I left the hospital. My INR wouldn't stabilize so my doctor finally took me off the blood thinners and said 'screw it'. lol It seems to have worked out. The only thing, is now every time I have a scope or need to be put under I need to tell the anesthesiologist about my clots, just in case.

Good luck to you!

 

[DFinn]

To CyCrohn

Hang in there guy. As they say, it's darkest before dawn. You'll make it. Just stay positive... that's the key. And just roll with it. If you believe you'll have your life back, you will. Envision your future, with you being healthy.

I have read an incredible amount about my conditions and tried to learn as much as I can. Being informed is key for people with chronic conditions.

 

[Mountaingem]

So sorry you're suffering! I agree with DFinn, attitude is so important to healing and your overall well-being. Please try to stay positive, you've just got a little ways to go until things really start to improve and you feel like a person again!

I also try to meditate (not in a yoga or religious way) on the future, set goals for things I want to accomplish and envision myself healthier as a way to push through the crappy times. It reminds me that I am more than this sucky disease, and it might rob me of alot of things, but I'm not gonna let it take away who I am.