A cautionary tale: otherwise known as don't be stupid like Dina!

At the risk of being repetitive, I think it might be useful to give a run down on my run-in with ibuprofen, the damage it caused, and what NOT to do as a DS post-op.  This is going to be a recap - although undoubtedly way too long!  If you want all of the gorey details - go to my blog and select the category "As the stomach turns" and you'll get the blow by blow details there.  Here's the link:  http://livingthedslife.wordpress.com/

I posted this on October 2nd on the Main DS Yahoo Group:

I feel uniquely qualified to answer the question about Ibuprofen and whether or not we can take it.   One of the reasons I chose the DS was because I have had degenerative joint disease for YEARS – like going on decades.  It’s pretty severe in my lower back, hips, knees, ankles.  I was also diagnosed with osteoporosis when I was about 35 – three years before my DS.  When I had a BMI of 66 I was in horrible chronic pain – the weight of my body was killing my joints.  I spent nearly 2 years in a wheelchair before my DS.  I also had two knee surgeries in the months prior to my DS.  Since my DS I’ve had a total right hip replacement (after dealing with 10 years worth of pain and loss of mobility due to the degeneration there), and in March of this year had a left ankle reconstruction – where they removed necrotic bone, replacing it with donor bone, replaced all of the ligaments around my ankle with donor material, added a donor tendon to reinforce the stability of my ankle, cleaned up a lot of the debris in my foot and ankle due to the degeneration, and severed the muscles in the back of my calf so that they could properly reconfigure my foot and ankle.  I need my left hip replaced – they’re saying in another year or so.  And they’d like to replace both knees – they say about 5 years – I say we’re waiting as long as possible 15 years sounds better to me!   I always have a stash of pain medication and muscle relaxants on hand for when things get bad pain wise – I have for years and years – my PCP is well aware of the need, and the fact that I only take them when I MUST – I’m a busy woman with three kids and lots of responsibilities – I need a clear head!   I had a friend that I met when I was first researching WLS – she invited me to a local WLS support group meeting – it was open to any one who was a pre-op, post-op, or support person – of any surgery, from any surgeon.  They were a really nice group of folks, and that was such a helpful thing in my process of learning about WLS and choosing which surgery was for me – getting to meet people and see what their quality of life was, what it was like to eat out with them, to hear their stories and issues.  Anyway, one of the ladies there that I met was a RNY post-op who said she was so disappointed she hadn’t chosen the DS (she was a couple of years post-op) because of her chronic pain issues.  Had she known about the DS as a pre-op she would have gone to great lengths to have it.  As it stood, her pain issues were nearly crippling, and she was banned from NSAIDs because of the sensitivity of her pouch.  She really made me stop and think through my pain issues, and whether or not I could choose a surgery that excluded using some of the medications that I relied upon for pain control.   Fast forward – yes, I chose the DS.  Woo Hoo!  Since my surgery I have used all kinds of pain medications, NSAID’s (well, except the ones I’m allergic to), and never thought twice about it.  In fact, when I’m in Spain I buy a ton of Ibuprofen because it’s so cheap – and comes in 400 mg and 600 mg tablets.  I’ve loved them because they’re so effective!   I haven’t ever used anything for pain every single day several times a day – well, except maybe when I’m in the hospital after a surgery or something.  I always try to go home off of the narcotics and ready to transition to ibuprofen.  I might take 600 mg ibuprofen one day, or 1200 mg in a day.   Fast forward to March of this year when I had my ankle reconstruction.  MAJOR surgery – in fact, the longest I’ve ever been on the table.  I had to be non-weight bearing for 6 weeks – with toes above the nose 99% of the time.  I was also forbidden from taking any ibuprofen because it can cause the body to reject donor material – of which I had so much in that ankle!  So I stuck to the RX the doctor gave me – and really only needed it for a few days after getting home from the hospital.  However, when I was given the go ahead to be ambulatory, I asked if it would be okay for me to use ibuprofen then.  They said sure.   That was April 9^th, 2009.  Once I started putting some weight on the ankle, wowie – more pain that I expected.  So I took a 600 mg ibuprofen.  Pretty regularly.  And the more active I was, the more pain I was in – so I’d take more.  Like 1200 mg ibuprofen, several times a day.  At one point in time it was more like 2 or 3 ibuprofen (the 600 mg tablets) four or five times during the course of the day.   Stupid!  Stupid!  Stupid!   Because I have a small tummy – not a normie tummy – it can take a while for everything to get through the pylorus.  So, what was happening is that one of the 600’s would go through, the others would sit there on my stomach material and in essence – burn or degrade the tissue where they sat until they got their chance through the pylorus.   On April 24^th I got really sick.  Left upper quadrant pain, fever, felt like I was gonna keel over.  Went to urgent care, they thought I had a bladder infection – so gave me a course of oral antibiotics.  A couple of days later they called me back to tell me I didn’t have a bladder infection and discontinue the meds.  Guess what I was taking to battle the pain?  More ibuprofen!   Very long story short – what had happened is that all of that ibuprofen use had caused a perforation – a hole – in my stomach.  Eventually leaving me with two leaks and two fistulas.  Since April I’ve been hospitalized four times – for a grand total of 44 days if memory serves, I’ve had about 20 different procedures done, I’ve been on IV antibiotics since July 23^rd – trying to clear up this abscess where materials ingested settled in my upper left quadrant.   In August Dr. Lee Swanstrom was able to an endoscopic repair and close two leaks and one fistula.  However one did not stay closed and is still active.   I am currently home with orders for NPO (nothing by mouth – as in NOTHING) for 6 weeks, I’m getting TPN 16 hours a day via IV for nutrition.  I’m still on IV antibiotics – three of them – five times a day.   I guess what I want to say is this:  I was so flippant about using medications for pain or that could be damaging to my stomach.  I got away with it for so long I figured I was bulletproof.  I was WRONG.   I’ve learned so much about stuff during this season!  Like the fact that the European Union actually has tried (unsuccessfully) for years now to ban all ibuprofen sales because there is clinically more damage done by it than benefit derived from it.  My general surgeon here in town told me that he sees stuff like this all the time – normies, not post-ops.   If I had to do it again, I wouldn’t have been so cavalier, obviously.  Would I have taken *some* ibuprofen?  Yeah, probably, just in the 200 mg doses – and infrequently.  I would have not fought using the narcotics for pain in exchange for being less active after my ankle surgery and stayed home to get past the pain and drug fallout.  As it stands now – I’ve been threatened to within an inch of my life if I ever ingest another NSAID in my future life.  My poor stomach just can’t take it.   So today is day 14 of 42 being NPO and on TPN.  I love food.  I love eating.  And I gotta tell you, this isn’t the funnest or easiest thing to do – but you know what?  So worth it if it works and closes up that last fistula.   Just want to say – use caution guys.  Don’t be stupid like I was, okay?

Thank you Dina for posting this valuable lesson.  It will certainly help with my decision making from now on regarding when and what medications to take.

Thank you for posting this!  I was told by Dr. Elariny after my VSG in 2004 not to take any NSAIDs at all.  I've had permission to take a low dose for a few days with plenty of fluids because I messed up something in my knee.  A very valuable lesson!

Sending belated healing thoughts your way!!!

Hugs,
Ratkity

Edit: Don't say you were stupid.. too derrogatory.  How about naive?

Naiive would have worked had I not been as well educated as I am.

My stupidity was my cavalier attitude, choice to ignore warnings that it could be problematic, laziness, and failure to act responsibly.  Yep - I think stupid works - and I don't especially like that word!  LOL!

Hugs,

dina

Ratkitty, you may want to change your surgery type to "VSG." The one you have listed is very different.

Nicolle

Sorta hard to explain the surgery I've had.. it's a vsg with a band (B).  Not really a vbg and not a vsg.  Sort of a hybrid.  Basically, it's the first part of the DS with a non-removable band on the banana.  Confusing, but it was experimental in 2004.

Hugs,
Ratkity.

Oh, dear! I know about the VG, as I have one, as part of my DS. It's the band that scares me.

Well, it looks like that experiment wasn't what you needed. Forgive my questions, butu I am very curious...Will your doc TRY to remove the "non-removable" band? Or is a "part of your anatomy" now?

Nicolle

These were in the days before lapband was perfected (I use that loosely).  New doc won't remove band.  There's scarring around the mesh band now. 

Oh, and btw.... I can get in 3000 calories eating healthy (nuts, fruit (no juice), yogurt and lattes) easy peezzzzzy - or more if I'm doing any emo eating!  And my weight reflects that.  Haven't gained all my 100lbs lost, but have gained 40 lbs and maintaining.

Hugs,
Ratkity

AND, it's systemic. Doesn't just sit in the pouch/stomach/sleeve and burn thru. It thins everything, including the protective mucous! Taking a PPI with it, turns off that protective mucous production, the good along with the bad.

So, while you were burning up the inside, that circulating in the blood was doing its thing by running thru the blood, too.

Remember, I fried an INTACT stomach with NSAIDS and ibuprofen.

Holy crap, Dina!