Valuable Lesson: Don't let doctors dismiss your pain!

I want to share what I have been through with you.  I know there is someone out there who may be going through something similar with recurring pain that remains undiagnosed and this may be of help to whoever that may be. I am just two months shy of being 2 years out from RNY.  Over the past year, I have had a recurring pain in my abdominal area... mostly to the right, close to my ribs.  Whenever this pain struck me, I also had problems with passing stool - despite taking stool softeners and eating a high fiber diet.  I went to my local doctors several times to get some help.  I had gall bladder sono's, endoscopy, colonoscopy, X-rays, CTs, bladder and kidney sonograms..... nothing.  My local doctor kept telling me that this "could" be from stomach acid, keep taking prevacid... or my personal favorite "You've had gastric bypass surgery, so these aches and pains are too be expected."  The doctor would prescribe pain medication or medication to prevent spasms and send me on my way.  I got to the point that I tossed the prescriptions in the garbage as soon as I walked in my front door.  I didn't want pills to mask the situation.  I wanted to know the cause and fix it.  But that wasn't going to happen.  I began to feel like an idiot.  I was embarrassed to even make another doctor's appt... for fear that they would look at me like I was crazy or just wanted attention.  So I dealt with it.   I thought I could just ignore it.... or build up a tolerance to it.  It wasn't like it was there everyday.  It would hit me and last several weeks and then go away only to return at an unannounced time.  WELL - the last time it hit me was a couple of weeks ago.  It came on suddenly and strong.  Much worse than any other time.  It was 10pm on a Saturday night.  I took some gas-x and went to bed.  I awoke at 3 am in much worse pain.  I took some more gas-x and drank a cup of hot tea.  I went back to bed.  I woke up at 9 am and discovered that I could barely walk.  The pain was coming in waves.  I took a hot shower thinking it would help.  It didn't.  I got dressed and asked my son to find my husband to take me to the hospital.  When we arrived, they rushed a wheel chair out to me and parked me in the waiting area.  By now, I was doubled over in pain, so much pain that I couldn't see the people around me.  My face was on my knees and I was crying so hard I had snot running down my pants legs and I didn't care. They took me back and put me on morephine.  No relief.  They sent me for X-rays, sonograms, pelvic exams, MRI (with gastrograffin & dye)... everything coming back normal.  I was admitted because the pain was only getting worse and my vital signs were not stable.  So they kept me for observation and to administer pain medication.  Morephine wasn't working, so they put me on doladid (sp?) which also did not work.  I can not tell you how much pain I was in.  I can tell you that about 25 hours into the ordeal, and with no answers, I began to think I was going to die.  I very seriously thought I was going to die.  I began seeing the shadow of a man pacing back & forth at my bedside.  He was dressed in a suit from the 1930's with his hands clasped behind his back.  I began to pray.  I prayed for God to please let me stay here to raise my children.  Shortly afterwards, the spasms got less intense and the pain began to dissipate.  I was released from the hospital with dull pain and "maybe this is just an ovarian cyst." I made a follow-up appt with the family doctor the next day.  She said "Why are you here?  Didn't I say to follow-up in a week?"  I explained that I was not satisfied with what the hospital had to say and I wanted to know what she learned from all of the tests.  She handed them to me and said "There is nothing wrong with you.  Everything is normal."  The CT report was on top.  It read "small intussusception of loop of small bowel"  I asked "what does this mean?"  She snatched the papers from my hands mumbling something about how the hospital said nothing was wrong and then they put this on here.  She called the hospital very upset.  Since english is not her primary language, she was bouncing back and forth in two different languages on the phone with whoever at the hospital.  Then she hangs up and tells me "this is nothing for you to worry about" and went back on about how I had gastric bypass surgery and that pain from time to time is to be expected and she handed me a prescription for spasms.  I walked out of there disgusted and with my test reports still in hand. I called my gastric bypass surgeon.  I explained everything to him and read the report to him.  i asked "is this okay?"  He said "NO it is NOT okay!  Who did that report?  Where did you have that test done?"  He was levid.    He asked if I was able to pass stool.  At this point, I was passing very loose skinny strands - like spagetti.  He asked about my pain - dull and about a 4.   He said I needed to come see him and to bring all of my imaging and test reports with me.  If my pain worsened at all, or if I stopped passing stool, I was to go to the ER at his hospital ASAP, otherwise I would see him at my appt.  (I prayed hard to make it to my appt because he was going out of town for a couple of days and I really wanted to see him).  As fate would have it, I made it to my appt date. He reviewed my images and reports and examined me.  He admitted me to the hospital on the spot.  I would have surgery first thing in the morning.  He was concerned that I had an intususcepted loop of bowel or a hernia on one of the images... and didn't want any section of bowel dying from a loss of blood supply.  Once inside, he found that I had a partial obstruction due to adhesions and an internal hernia.  He also found my appendix to be swollen and squishy.  He inspected my bowels for evidence of tissue damage.  Thankfully, I did not loose any bowel.  He removed the adhesions and my appendix.  He sewed the pocket that my small bowel had herniated into.  I'm on the road to recovery now and I'm doing okay. I learned a very valuable lesson through all of this.  I didn't want to have to drive 2 1/2 hours away for every little ache and pain.  I thought my local doctors should be able to handle things like gall bladders, bowel obstructions, stones, whatever.... BUT there are a LOT of medical professionals out there who are not well versed in weight loss surgery or in the post-op complications of weight loss surgery.    It should have been a clue when everyone gathered around my images saying "ohhh" "Ahhh" at my different anatomy...or my internal staples.   There are many medical professionals who do not want to TOUCH a patient who has had gatric bypass surgery.  (for whatever reasons that they have and I'm sure there are many, including liability).  My gastric bypass surgeon IS well versed.  He is very educated in the anatomy of a gastric bypass patient, the potential complications, the symptoms of conditions which often times do not show anything on many of the tests that are routinely done.  I should have gone directly to him in the first place. I've done a lot of reading since I've been home recovering.  I learned that internal hernia's and adhesions are OFTEN missed on diagnostic testing.  Many medical professionals who are not extra educated in bariatric surgery are not aware just how common these conditions are or how often these conditions are present despite not showing on x-rays and CT scans.  This is just one reason why it is so very important to consult with your gastric bypass surgeon when you are having problems.  This is also a good reason to be sure you are comfortable with the surgeon you choose to have your surgery with.  Your life is literally in his hands.   If you are out there suffering from recurring pain, consider my story.  Take it to your bariatric surgeon. I didn't want to use so much leave from work having to travel that far.  In the end, I used a lot more leave than I would have if I had gone to see him sooner.  And what good would having vacation time on the books be, if I had died?  What a reality check, huh? Pam 

Hi Pam.  Thanks for sharing your story.  It's good to know you are on the road to recovery now.

Cathy

I KNEW your story when I read the caption!  I KNOW your story personally -- only I'd have three surgeries (one highly emergent) before -- well -- I'm still not "right."  At any rate, I understand your feelings of  not getting help, wondering if it's imagination, etc.  If you need to talk, let me know! I've posted and posted what I can about this -- these things are NOT diagnosed in the traditional sense!  I suspect that pocket was "Peterson's space." Ahha!  I'm baffled at the illiteracy of some physicians and I abhor to consider (though I do) that this suddenly increased number of Bariatric patients is a lab test.  I've always preached to be your own patient advocate -- to know, to understand, to research, to press on, etc.  It was horribly difficult for me to know this and talk that talk and yet still not get medical attention in the "medical mecca" of the South....very frustrating!!! I'm glad that your surgeon took care of you and I pray that you continue to improve and live life pain free.  For more information on my story, you and others can read my profile.   Thank you for sharing, Vanessa

Vanessa, I completely remember reading some of your posts and thought of you when I questioned the doctor.  YOU helped me and I cannot thank you enough for posting about your ordeals.  :kiss:  It was incredibly frustrating.  At our local hospital, the ER doc came in a good 4 or 5 times to ask me AGAIN if I did recreational drugs.  I can't even tell you how upset that made me!  He treated me like I was there for a drug fix or something.  It was unreal.  UNREAL.   I heard through the grapevine that this hospital is hoping to get in on the weight loss surgery market by bringing on a surgeon from another country to do wls there...  SICKENING.  They are so ill-equipped to handle post wls patients and yet they want to make some money off of it.  I hope to God they get some training!   I'm not sure how I am going to address this ordeal with this hospital - but I know it needs to be addressed.  There are so many wls patients in this area.... and we all drive 2+ hours to get care.  If the medical community here doesn't get up to speed, someone is eventually going to die needlessly. Again, I can't thank you enough for posting about what happened with you.  It DID stick in  my mind.  It has made me realize the importance of sharing this kind of information too. Hugs, Pam

Thank God you are ok and followed thru. We are own own best advocates.  Now, the next tstep. You need to talk to a malpractice attorney about the Drs who almost let you die. You need to talk to the family Dr and let them know what they missed and the near consequences of their actions.  This is NOT acceptable.  I am so glad you are ok to tell us the story.  i hope you follow thru and educate the ones who let this slide by. severe Pain is NEVER normal and should not ever be considered normal and anyone who says it is just part of the gastric bypass is ignorant and dangerous.  there did I say it strongly enough? HUGS!

Thank you for sharing your story. I have  beem having some of the same sort of pain for a few months now. I was told that it could be acid reflux or spasams. Most of the time the pain is very tolerable, but there was 1 time that I could not  stand stand up due to the pain but it only lasts for about a coulple of hours. I myself often pass it off as gas and take gas X (which never helps). I am an hour away from my surgeon and I hate to bother him with every little pain. Your story has opened my eyes and I will not ignore my pain if I get it again and call him right away.  I pray that you are doing well now. God bless.... Cathy

Yes, Cathy.  If your pain returns, please see your surgeon!  This has really taught me.   Make sure you pay attention to your stools and report any changes.  For me, I was primarily constipated ever since I had the RNY but I had gotten myself to where I was going every morning - nice and normal by eating yogurts with fiber cereal in them each day, fruits and a few other high fiber things - and I learned to take stool softeners whenever I decided to endulge in cheese sticks!  In the week prior to this ordeal, I suddenly started having very loose stools.  I kinda thought it was a blessing - but I was wrong.  It was a warning.  My stools progressively got looser and thinner in diameter as the ordeal went on.  And it kind of felt "explosive" but it never came out that way - it always felt like there was so much more just ready to burst out - but it never did.   On the gas-x.... I knew something was wrong when I took the gas-x that night because after I took it, I kept belching but NOTHING came out the other end....I kept feeling like I was going to pass gas - but I couldn't.  So if this happens to you - get checked! I hope for you that it never happens again and you live a happy, healthy life. God bless, Pam

Pam - Thanks so much for posting this.  I actually just saw my surgeon for a fifteen month follow up this week and mentioned that I was having abdominal pain (just started a month ago) on and off with constipation.  I thought gallbladder, but she felt it was a "strange presentation for gallbladder" given the location of the pain.  Now I'm thinking my symptoms sound exactly like what you are mentioning.  She did schedule me for a CT scan in a couple weeks (that was the soonest available).  I'm hoping that will show if it is a hernia or issue with the bowel.  Will keep your story in mind if the pain returns or gets worse.  I've had a few episodes but the first was the worst - couldn't get off the couch for an entire day and took several days to completely resolve.   Thanks so much for posting! Eileen

Believe it or not, you are fairly lucky.  One of our locals had sudden onset pain.  She went to her nearest hospital, where they had been doing WLS for 2-3 yrs.  They correctly dx her intussusception, but only "pulled it apart", as in corrected the telscoping and bowel appeared normal.  They zipped her back up and sent her on her way.  3 months later, she feels the same pain.  This time doesn't go for close, goes for the 25 yrs of experience, but it was a little late for part of her bowel.  Even though she didn't go thru the frustration of "imaginary pain", she did lose about 10" of bowel, because of course, it telescoped back probably before she left hospital one! The very scary thing is that we're never immune to this stuff.  The average time from pain onset to surgery is TWO YEARS!  Imagine!  I was done i*****  About the time the girl above was going thru her ordeal, someone 3 months ahead of me (early 1994) was dx with this!  I mean, just when you think you're home free! I'm so glad you posted this!

Pam~ Wow.... thank you so much for sharing your story.  I am very thankful that my MD is well versed in bariatric surgery!!  It is really scary when the dr's don't understand surgery and they blame every problem on having the surgery.  Sadly, these are usually the doctors who tell obese patients that any problem is due to their weight!   My friend's MD knew nothing about her surgery, she had horrible abdominal pain and her doctor said it was from the surgery.  They didn't even run tests and she ended up in the emergency room w/ a severe gall stone attack and had surgery a day later.  I suggested that she ask her bariatric surgeon for the names of some MD's.  They were able to give her a great referral and I feel better knowing that someone taking care of her.   I'm glad to hear that you are on the road to recovery!  Jaimee