Colonoscopy Horror

[Mpathia]

Had colonoscopy in January.  Came home & started having severe back pain.  Began collapsing.  My entire pelvic girdle is in pain. Bladder pain, lower back, inner thighs, hips.  I know something went wrong.  About  2 wks later; had diverticulitis.  Never had it before.  My bowels are all messed up now.   I cannot figure it out.  My doctors are not doing ANYTHING!  I don't even know if it's a gastroenterology or a  urologist/gyno problem.  As in a Pelvic Floor or Interstitial Cystitis.  Getting worse.  Have to use walker.  Bedridden.  Very, very scared.  So painful.  It was from the colonoscopy... but I don't know what to do... It has been SIX months now.  I am afraid they may have punctured or made a tear somewhere.. I know this isn't "normal".  Anyone who has had a similiar experience?  I am really terrified. Went to every hospital ER; some did tests, some didn't... It really hurts 24/7.  I cry in bed writhing in pain with a heating pad.  A living nightmare... I am getting no help.  Doctors don't call back, or tell me to go to ER...  I can't take this, anymore...

[ggreg]

MPATHIA, oh I feel for you, what a heartbreaking story you tell.  The part about your spine cushion being gone is significant, I can see how come the hospital doc said you should see a neuro for an MRI.  When your spine gets to hurting, it REALLY hurts.  I suppose that might be part of this picture of your postcolonoscopy problems.  

And I wonder, when you first had your colonoscopy and returned to that same gastro doc complaining with your symptoms, why did he say you had a long, hard road ahead?  Were you having some sort of symtoms before you had the procedure, and perhaps a diagnosis?  

I am glad you are on the patch and oxycodone, but I guess you are going to run out if your general doc sent you away without a new prescription.  If so, keep the patch until it falls off your skin!  As for the pills, squirrel some away for the future, which is to take them on a certain day, like Saturdays or something.  And ASAP, start to taper off the rest of your oxys, and when you are ready to stop them, take ibuprophen instead.  You have no other choice.  Eventually someone will give you new meds.

Did they do the original colonoscopy because of pain in your lower body?  If so, might have been your back all along, altho I'm not sure.  But they had said to see a neuro about what the pictures showed.  So, that would be your next step.  But you do what you think is best in the end.  I hate it that your regular doc called you an addict and might take away your medicines, and I hate it that your husband yelled at you.  Many of us patients have similar stories, so sad.  GG

[Mpathia]

I went to my Primary Care Doctor today... OMG!!! He had me in tears... called me an "addict"... I never, ever did any street drug or abused my medications.  He's a total nut-case... It's like who will be there today?...Jekyl or Hyde?  I have so had it.  Was going to take me off all pain meds... HE is the one who suggested Dilaudid for the pelvic pain... I absulotely HATE doctors!!  My GI visit after the colonoscopy?  He did nothing.  Told me I'm in for a long, hard ride; then he pulls out a Bible and started reciting ****.. I have a church, thank you..  I'm sorry... I am so upset.  Now, I have to find a doctor in RI who will let me stay on my Fentanyl patch & oxycodone... Not even 'close' to easy... This visit with PCP was so totally horrific.  I do all the research and searches for EVERYTHING and I am so very pissed and tired of having to "find" doctors.  One told me to open the phone book... I hate RI... no doctors here.. none with any compassion or knowledge.  I left his office.. MADE my husband drive me to the local walk-in ER that I've been to in the past... Told doctor (new; didn't know him...) but I asked about x-rays... took a while.. they thought I wanted my old x-rays.. I wanted to know when my 'last' lower lumbar was done... A year ago.  Noted a malformation or something... Had an x-ray done on lower back & pelvic region.  Apparently, there is NOTHING between the no. 7 lumbar disc.(not quite sure which #), but there is no cushion there at all.  Just bone on bone... That crappy PCP wouldn't even order me an x-ray, or MRI; nothing... I'm sorry... I am so so upset... Colonoscopy started something.  But, The disk that starts at the "tailbone" is totally gone.  I cannot handle this.. My husband was angry at me for making him take me to hospital last night because my pelvic pain was off the charts...They did nothing.  Told me to see my PCP... that's the way it goes... round and round..After the PCP visit, I asked my husband to take me to the walk-in ( I knew something was very wrong w/ my back; don't know about my pelvic girdle... So, I go into the walk-in  while my husband is ranting "I spent almost the whole night in the hospital, then I have to take off time from work, spend MORE money, etc.." I just wanted to cry...  I'm suffering so much and people "yell" at me.   My Primary doctor wouldn't order any tests.  None..  I spoke with the doctor at the walk-in ER.. asked "when" my last lower spinal x-rays were done... More confusion, but asked him for an x-ray of lower spine and pelvis. That's when he told me about the disk.. also said if it gets worse or goes down to legs.. go to hospital... I have the disc of my x-rays, he gave me an order for a neurologist for an MRI, because I think something "more" is going on (nerves...) Now, I have to find a neurologist.. I don't know any and I'm sick of looking for "doctors", period...  All in all, a 'great' day...  Not my fault I have severe Fibro, still do not know why bladder/pelvic region is hurting so bad.... I'm exhausted... truly.  I'm still upset and still in pain.  I hate the coments made when I tell medical people my medications... I don't need to hear how "powerful" they are... they don't take away my pain and never have.  Just dulls it... But, here I am crying in front of this complete idiot, sobbing and he yells to me "You're an addict"!   I felt less than human...  At hospital; same thing... I should be "knocked" out by the meds... Then doctor explains (I've heard it tover and over...) that you build up a tolerance, etc. I know all about it, but I DID NOT choose to have Fibromyalgia for 25+ yrs. and now this pelvic horror from a colonoscopy.. how, why... do not know.. never will, I'm sure.  So, I have severe Fibromyalgia and my lumber disk cushion is gone... How do you find a good doctor? I don't know... I suffer terribly... i do the best I can, but the pelvic pain is just too much and I won't get in to see a doctor I called until early Sept. or later...I called them last week.  The secretary callled my PCP; then she called me back.  "It's all set"... get there today.. nobody knows anything about it... Honestly, I am lost. Exhausted and lost... don't want to go looking for doctors again.  Pain is awful. I'm stuck in RI because of my insurance.. husband would drive anywhere, anyway.... Tomorrow, I have to call the Pelvic Pain doctor's office again... This PCP does nothing but cause me grief, anquish, and stress... Finding another doctor who will let me stay on the patch and oxycodone is near impossible... I am not an addict.  I'm a person in real pain for a real reason who cannot find ONE decent doctor.  I missed my son's wedding because of the pain (before the dilaudid).. my Aunt's funeral, and just about every holiday and my closest friend and cousin in CA is dying from a long battle with cancer and it's just a matter of days.  Her husband needs a kidney transplant and they have an 18 yr old son who is trying to help out financially...  Unfortunately, it has not been the best day for me ... I can't talk to my cousin anymore.  Her brain isn't working.  Every day I would look on my email for something from her.  It will take a long, long time for me to handle that... I wish I didn't have to "handle" all this other stuff... even taking a shower is a giant chore for me... I hope so much I can get in to see this pelvic doctor soon... I cannot take the pain.  Thanks to anyone who read this... it's long.. I'm sorry...

[ggreg]

Pick the doc you like the most and make an emergency squeeze-in appointment for the coming week.  Please take your temperature, and if it goes over 104 degrees, then it's back to the ER.  You need to have a CT scan done to see if there is a tear, bloodwork to see if you have an infection, and a gynecology consult, urology consult.  I imagine all those things have been done, in which case they're missing something, no question about that!  If there is a hospital in a university setting that someone can drive you to, then do that instead of your local ER.

Whilst you wait to see yet another doc or hospital, I can suggest a few things you can do at home to perhaps ease your symptoms.  Get some yogurt at the grocery store that says "probiotics" are in it, like Activia.  Eat for a couple weeks or follow the instructions on the carton.  Or drink Acidophilus milk same amt of time, it has "good" bacteria in there.  When people have a colonoscopy, the prep causes the intestinal flora to go upside down, so that's why probiotics, it straightens it out.  Next, get some plain Original Alka Seltzer and drink a half glass of water with one of those in it, tastes awful, but restores the normal pH of the body, releases gas, and also the aspirin helps ease pain.  Get some Oatmeal and real blueberries, eat that every day.  Drink lots of water, shoot for six glasses a day, but any extra will help.  Eat stuff that is easy to digest, like soups, mashed potatoes, applesauce, spagetti.  

The doc you visit, if you have diarrhea, he can give you medicine to make that stop, which one good drug is Hyoscyamine.  If you have constipation, likewise he can give you something safe for that.  You remind me of the movie with George C. Scott, "The Hospital," where he says, "Let me get this straight.  We check a perfectly normal person into the hospital and then set about dang near killing him."  I have not had your experience with colonoscopy.  However, I did have a very similar experience with docs and diarrhea.  I had diarrhea half-dozen times every day for six months.  NOBODY knew what was wrong, and was I ever upset and angry.  So, I had to figure out what it was because I thought I was gonna die.  I had begun taking a  tranquilizer that dried me out a lot, it wrecked my teeth, tore up my guts.  So, I had to go off it, took me almost two months, and bingo, my symptoms disappeared completely.  Talk about relief.  So, while colonoscopy was your problem, and mine was medication, I know just how outrageous it is to tell a doctor how awful things are, and not only do they not know what it is, but they don't know what medicine to give you or ANYTHING.

I personally think your first symptoms were big-time gas, which always happens after a colonoscopy.  Takes a few days for the digestion to get back to normal.  But in your case, something else was also going on that wasn't right.  I have to assume you went right back to the doc who did the procedure and complained at his office, becuz he should have been the one who would have been the most interested in getting you straight, because mistakes do happen despite their best efforts.  So, I think later you probably developed a bad infection, and that is most definitely not something to fool around with when it comes to the bowels.  You can get peritonitis if the contents of the bowel seep into the abdomen.  But could also be your bowels got twisted somehow, or maybe an abscess formed and then burst when they declared you had an attack of diverticulitis, or a bacteria might have gotten in your bowels that is floating around and causing all this.

This is why you have to again go to a doc, and keep an eye on your temp if it gets too high so you can go to an ER.  And I've told you the types of tests they must do to get to the bottom of this.  There is NO WAY you should be sick this long without SOMETHING being out of order, and so the docs MUST be more serious about this and think of EVERYTHING that can go wrong to give you your symptoms.