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

Pam: I am glad to hear you are okay.  I'm curious, did you ever have trouble eating throughout this process?  I am going through a similar situation and my WLS surgeon seems to think I'm just constipated.  I have an endoscopy on Monday just as a precautionary measure but my surgeon feels that nothing "mechanical" can be wrong at 2 1/2 years out.  He actually told me I"m eating too much and I'm lucky if I get 4 forkfuls of a meal down.

I'd be interested in knowing about how you tolerated foods throughout this ordeal.  One week I can eat normal the next I can't tolerate solids.

Thanks and I'm glad you're on the road to recovery.

Bella

I did have issues tolerating solid or more dense foods throughout all of this.  When things were going well (meaning no pain present) I could eat things like meats, toasted sandwiches, pickles... just about anything.  When the pain would flare up, I had to stick to more of a soft food diet.   Without even realizing what I was doing, I had become adjusted to living a soft food lifestyle.  (I should add at this point that I have actually lost too much weight and have been struggling with trying to put weight back on - so breaking the rules had also become the "norm" for me).  Just to give you a example, my typical day went something like this: (I was having something about every 2 hours) 20 oz Sugar Free Vanilla Soy latte 20 oz Sugar Free Vanilla Soy Latte (sometimes I'd have as many as three of these a day) Banana Yogurt with fiber cereal applesauce cup of soup (or chili) 20 oz hot tea with about 8 oz of it being hot milk another Banana another yogurt with fiber cereal about a cup of dry fiber cereal in a ziplock baggie 20 oz hot tea with about 8 oz of it being hot milk (I probably had 5 or 6 of these a day) and for dinner I was eating something soft or soupy - like meatballs, soup, chili, or something that stewed in the crockpot all day I guess this had gone on for so long that I just adapted to it.  I did not always eat like this.  I was eating pieces of chicken breasts for snacks before all this came on!  I was diligent to eat lots of meats and salads before.  It just got to the point that eating these things felt like huge pieces of garden rocks going through my system...and just looking at these things made my belly ache.   Right now, I'm still on a soft food diet, as I recover.  I'm looking forward to being able to eat real foods again - especially with summer right around the corner.  My weight has plummeted down to 115 and I'm still quite swollen in the tummy from the surgery - so I'm really, really hoping to be able to eat and gain about 20 pounds or so. I should also point out that I was scoped and my pouch was picture perfect - there were no mechanical issues there with me either. As a reality check for myself - I did everything I could to battle constipation.  I took stool softeners whenever I ate a trigger food, like cheese sticks and made sure I ate high fiber foods and some fruit each day (either banana's or mandarin oranges).   Maybe documenting what you are eating, what stool softeners you are taking, and what your bowel habits are - along with what your pain level is each day in response to all of it will help with showing your doctor what is really going on.  In retrospect, if I had written everything down like this, I probably would have realized sooner what I was doing and would have been more equipped to plead my case with the doctors.  Who knows. I hope you get some real answers soon.  I have learned through this that we have to take the bull by the horns and do everything to protect ourselves just like we would our own children.  It's sad to think that we would need to document what is happening with our bodies and our medical care AS IF we are involved in a giant law suit - but really - it's probably the smartest thing.  Imagine if I had documented everything and journaled my experiences with the doctors all along.... and then died.  At least my family would have my records and my words to file a malpractice suit.  I have decided to keep a binder with everything regarding my medical care and issues in it.  Just in case - you never know.  What if I can't speak for myself one day?  That binder could save my life. Oh geez,, this got pretty long....I'm rambling... lol...pain killers.   Good luck to you, Pam

Pam: Thanks and I do appreciate the detail you shared here.  They actually removed my gallbladder in September 2006 but I am still having the same problems are prior to the gb removal.  And they did no other tests prior to the gb removal other than ultrasound because I had polyps that had to be monitored.  When I met with my surgeon last week (the same surgeon that did my WLS and GB) I asked him about the report they provided when the gb was removed and it states that they found adhesions when they removed it.  He told me adhesions can't be causing my problem and again said I must be overeating and asked me if I'm chewing my food up good.  I about flipped my lid because on bad days, i'm lucky I can get a couple forkfuls of solids down.  And if I do, I regurgitate them back up within several minutes. My conflict in all of this is that my PCP tells me not to take a stool softener on a regular basis and my surgeon said take it twice a day.  I can tell my body is dependent on the stool softener and it does not "clean me out".  Sometimes I think my bowel has become lazy.  I actually drank some magnesium citrate and it did NOTHING!!!!  As i expressed to my surgeon, I never thought I'd  have to keep returning to basic eating this far out.  He didn't seem too concerned. Well again, thank you so much for sharing all of us.  I am so glad you are doing well. Bella.

Hey Pam ... I can relate to that ... since August of 2005 I've been experiencing unexplained abdominal pain ... I went to my bariatric surgeon in that October, who was very casual about it (a sharp pain after eating that would move to just above my belly button on the LEFT side, then dull a little and move more toward the right ... followed by 2-3 hours of nausea and bloating).  He said well, we "COULD" do this or that ... but I wasn't convinced it was something we "SHOULD" do.  I was put on Nexium for this (by a different doc, not the surgeon). In January of 2006, I did end up going to the gastroenterologist (who works with my surgeon).  I asked him if this could be my gallbladder ... he said "no, gallbladders are my specialty, and thats not what this is" ... we did a CT scan, small bowel xray series and an endoscopy.  Nothing.  I then asked him if this could just all be "in my head" ... he went off on me.  Just YELLED.  "THAT'S NOT MY SPECIALTY, THAT'S NOT WHAT I DO ... BESIDES THAT'S YOUR FIELD, DEALING WITH PEOPLE'S HEADS" (obviously having me mistaken for someone else, because that's NOT what I do) ... and he said "BESIDES, YOU MADE THIS URGENT APPOINTMENT TO SEE ME" (ummm, no ... the orders after the endoscopy were to follow up with him 2 weeks after, and that's exactly what I did).  Anyway, I contacted his nurse after this to see what would be next, and she said she'd talk to him on Wednesday and get back to me.  Well, I'm still waiting for that call.  Since last February (2006). In April, I saw a GP associated with another hospital for another issue (follow-up from a dog bite) ... he asked me how I was doing "otherwise" ... and I told him exactly what I told my surgeon and gastroenterologist.  He said "I'll bet its your gallbladder" ... I said, "no, no, no ... the gastroenterologist, who specializes in that said its not" ... he ordered a HIDASCAN.  Sure enough, my gallbladder is dysfuntional.  I had the results sent to the other hospital, and I got a call from my surgeon's office saying, "we understand you have a problem with your gallbladder, the surgeon would like to see you".  Sure, now. I think I was just SO angry that I didn't want to see ANYONE anymore.  The GP associated with this other hospital referred me to the surgeon there (which I would have really preferred MY surgeon do this), that's why I think its taken so long for me to make the decision to have this done (not to mention the GP has constantly followed up with me and encouraged me to do this ... despite my intense fears).  If I don't cancel (again), I'm scheduled for surgery next Friday. I feel that I'm going through the same casualness with the doctors working with me on my hypoglycemia.  I'm kind of surprised that the endos haven't even been interested in recent labwork (haven't had a full set of labs since January 2006).  I have had seizures from blood sugars dipping to 23. I just want to give up.  Maybe I AM making all this up?  I'm just tired.  Very very tired. k

Well thank goodness you went and had that HIDASCAN done.  So now you know that your gall bladder is not functioning and could very well be the culprit of your abdominal issues.  I really think you should follow through with having your GB removed.  Now that you know it is not functioning properly, it is just a matter of time before it flares up and gives you one hell of an episode.  I wouldn't put that off any longer.  You should ask your surgeon to keep an eye out for any adhesions or other abnormalities while he is in there.  He's already going to be in there - he may as well have a looksie! That gastroenterologist that flipped out on you sounds to me like a flippin fruit loop.  He had no right to go off on you like that.  That's ridiculous.  But I get where you are coming from.  It's this kind of crap that makes us just want to throw our hands up in the air and completely give up.  I say, let's not give anyone that kind of power over us. Are you seeing endocrinologists for your hypoglycemia?  If it has been over a year since they reviewed your labs, I would call them and schedule an appt to have your labs done or get them done.  I wouldn't play around with having seziures. I completely understand how you feel with wanting to give up and being exhausted.  But if there's anything I have learned in the past couple of weeks it that we shouldn't give other's that kind of power over us.  If it were my child, I wouldn't give up - I would fight to the ends of the earth and back to save my child or to get the answers we needed.  Shouldn't we care that much about ourselves too?  I know that my children would want me too. I hope everything works out for you.  DON'T cancel your surgey!! Hugs, Pam

Thanks Pam ... I actually went for my pre-op testing tonight ... my surgery is set for next Friday ... I'm trying not to think to much about it ... I tend to overanalyze things, and talk myself right out of it, but I do have quite a few people "pushing" me forward with this ... actually, they're not "pushing" me, as much as not letting me step back ... which, I know, they're right. Yeah, that gastroenterologist really pissed me off ... geez, I understand these docs are human (or most of them), and everyone has a bad day ... I don't even mind if they don't know something (but are willing to look into it or want to get to the bottom of whatever it is) ... but the refreshing thing was, when I told this GP the exact same thing, and then I asked HIM if this could just be in my head, he said, "let's find out" ... and that's when he ordered the HIDASCAN ... I guess its true when they say attitude is everything.  I have an inquiring mind and I want to know EVERYTHING (I even want my gallbladder surgery videotaped ... but they won't) ... maybe some docs are just put off by that? I am seeing the endo for my hypoglycemia, they don't seem all that concerned, so maybe I'm just taking my cue from them ... if they aren't concerned, maybe I shouldn't be?  Well, one thing to tackle at a time ... I'll concentrate more on that when I get through the gallbladder stuff. You know ... after writing my previous post on this thread, I started thinking about how I was diagnosed with hypothyroidism about 11 or 12 years ago ... I asked my doc ... she didn't seem concerned (my skin was dry, I was gaining about 15 pounds/year, my hair was breaking off) ... so I went to a Wellness Day at work (they charge like $25 bucks ... or did at the time) to have bloodwork done and to check for certain things.  I got my results back and they said I should see my doctor because my TSH levels were high.  And my doctor just brushed this off until I took these results to her (this is the same doc that advised me against weigh loss surgery, but I should go on Meridia -- I don't see her anymore). Maybe I just don't explain myself well ... or do I just get involved with the wrong doctors for me? Oh well ... thanks for the words of encouragement ... it really does help! Take care, Karyn

I am so happy you followed your instinct and didn't give up...  I try to live by the principal that there is a reason for everything and you had to stay strong and insist on getting the answers you needed... good for you..  Never give up...  I can attest to the issue you suffered not from your same medical issue but others I am enduring now...  Thanks for  be inspiring...  I needed that..  Donna

Pam - thank you for sharing your story.  I had the same thing happen to me however I thought I was having a heart attack the last time it hit me .  I went to the hospital where I had the RNY to find out that my surgeon was no longer there.  They ran a bunch of test and told me I was having back spams.   I went home on some "good meds" but just could not shake the feeling that it was more.  So I called my RNY Dr and he told me to come in ASAP which I did.  I had surgery the following day for an internal hernia.  The surgery was a breeze.   I am glad that you shared this!!!  Oh by the way - I had my RNY on May 24 2004 and had my hernia repair on May 25, 2006.   And since May is such a great month for me - I am having PS on May 16th.  :haha: Thanks again and take care! Valerie :)

Pam, I haven't read all the replies but see Vanessa (Butterfly Reborn) replied and my first thought when I started reading your post was "Oh no, she is going through exactly what Vanessa went through" and by golly I was right. I am glad you called YOUR surgeon and mentioned the symptoms and report to him.......it amazes me how other doctors just ignore things like this and think it's in the patients head or something.  We aren't aliens, just gastric bypass patients I cannot understand why doctors treat us like this.  It is important to keep in touch with our surgeons (*sigh* I just got notified that mine is retiring on May 1 :() but have already made arrangements to have another surgeon see me if needed.  My surgeon made arrangements with this surgeon to do all followup on his patients, thank God because I was worried no one would be willing to help if need be. Hope you recover well.

Hi Pam,  I have been a member of OH since 2003 and I never knew about this board until someone that knew my story, sent your post to my private messages. I couldn't believe what I was reading. I know others that have went thru this, but NO ONE that has gotten a solution. I am going to take your story to my surgeon and my pcp. The only thing that is different about my story is that after my last hospital stay (3 so far) I have gained 35-40lbs UNEXPLAINED gain. I eat well, I wasn't exercising like I should have(I am now) but I am a massage therapist so I have a very physical job. I don't sit on my duff for a living...LOL. Anyway, Within the first month from being discharged, I put on 20lbs YES 20!!! There is no way I could possibly eat enough to put on that kind of weight. But I have been having constipation issues ever since I was in the hospital last. What sent me to the hospital the last time, was black tar stool, that was before I began taking Iron, so it wasn't the iron, They did a colonoscopy, endascope, Cat scan, and on and on and found nada!!! But I've just pasted off the constipation, being the Iron I have been on. I haven't had an episode since last august. How long was it between your episodes? I was hoping that it just worked itself out. I am just so frustrated about the weight gain. If I ate badly, I could understand. I eat nothing that contains wheat,(allergy), sugar, or anything I shouldn't. I eat mostly protiens, fruits, and veggies. The only "dessert" type of food I eat is a sugar-free fudgsicle or yogart. I either eat oatmeal w/ apples or raisins and I spike it with fiber sure. I recently started taking BLACKSTRAP MOLLASSOS, It is suppose to correct iron issues, constipation, and will give you extra energy. If you want to know more details on it just google it. It is amazing stuff. I will know if it works for me when I do my labs next because I quit taking my iron, but what is weird is that I still am not going to the bathroom very well and I quit taking it about 10 days ago. I even did a cleanse and it didn't help very much.  Now that you know all of my gross personal life......LOL. Thanks for posting your story, as well as the others. I am sure I will be frequenting this board a lot more often. ----Toni