jbird1972

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So, I decided to take another crack at a different pain clinic, this one recommended by my primary, who is wonderful, so I don't hold it against him at all.  I was impressed right away, the staff was very friendly and caring, they had a whole wing of the hospital for their use for clinic appts and procedures, very professional looking, so I thought, surely they can help me with this pain until I get cured (of course I have to be diagnosed first).  I was admittedly very emotional about being there, mostly because in my mind I had avoided going to the pain doc because I felt like I was waving the white flag of surrender.  So, I was weepy, they provided the kleenex and reassurance, the doctor came in, he was very nice (and even after the whole episode, I can't say he wasn't nice- he's just nuts I guess) LOL   I of course gave him all my info, very informative, nothing to hide, all my doc info, all my prescription history given to him.  We talked about the issues of the pain, I told him that I don't take the pain meds during the day because I want to function, so I am willing to be in pain all day, but it would be nice to have relief at night so I can enjoy my time with my family and get a good night of sleep, maybe.  I am not on high doses of anything at all.  I also told him that having the pain meds at home, helps to keep me out of the ER when I have these "attacks" of pain/nausea after eating sometimes, although even though it is a liquid pain med, sometimes it is so bad I can't even get that to go down, and then off to the ER we go.   After all this discussion, he explained to me how I am too young to be having to take these narcotic pain meds, and we need to get me off of them (which I was like, yes, let's get me something that works as well, yeah), but no...here was his plan: wean me off the pain meds, and then told me I can just take an ibuprofen or any other nsaid (Alleve) pain reliever   I was still polite, reminded him about my complicated GI history, and that I  have an ulcer right now, that I was told by all of my docs to NEVER take Ibuprofen/Nsaid pain relievers because of the damage it will cause my GI tract/stomach, his response was, well better to have an ulcer than to be taking those narcotic pain meds!!!    If Ibuprofen worked for my pain, I wouldn't be seeing any doctors.  As a bonus to this lovely offering of "relief" that he was so graciously giving to me, HA!, I had to sign an opiate contract (anybody ever heard of/seen one of these before? I work in the ER and I never heard of it), which read more like an agreement to go into detox than an agreement to get help with pain relief, it basically outlined that while I was under their "care", and I use the term loosely, I was not allowed to seek pain treatment anywhere else, including the ER!  Here was the kicker, he told me, you can go to the ER for nausea and they can give you Phenergan/Zofran, but he said, and I quote, "If you are going to the ER for pain relief, don't bother because under the terms of the agreement, they can't give you anything, so if it is pain, stay home, crawl in bed and deal with it until it passes."    I was so vulnerable, and fried emotionally at this point, and thinking that I had no other options, I signed the stupid thing, weeping the whole time, they gave me a script for a reduced dose of the medicine I was taking, and I tried to explain to them that my tears were not the tears of an addict who was going to miss their drug, they were tears of shame and embarrassment, and wondering why am I being treated like a drug addict???  They tried to brush it off as a formality, but in my mind I was thinking about my co-workers, people I work with, seeing this thing and wondering if I have a problem!   I left there miserable, started sobbing as soon as the valet brought the car around, and continued to sob all the way down the road, my aunt tried to console me, she couldn't even understand me because I was hysterical.   Well, there is a bright side to this, somewhat, when I got home I called that place, told them that I was coming back the next day, and they could have their prescription back, and I wanted my "contract" back so I could rip it up!  I followed through with that yesterday, and I felt so empowered to hand that script back to them and tell them how they made me feel, and watched as she ripped the original contract up.  The doctor had mentioned to me during the original visit that he only gives dying cancer patients narcotic pain meds, so when I went back I told the nurse that he should just open up a hospice unit and forget about treating the people who are truly suffering, but not dying- yet!  I can imagine that others of you have had this experience, and if you haven't had it, I hope you don't, but remember that you are in charge of your body, don't be bullied by someone just because they had more years of school than you, or more initials after their name than you.

We are taking the kids to the Dells this weekend, staying at The Wilderness, one of my favorites, although I love the Kalahari.  I will conquer one of my goals of enjoying indoor waterparks again.  I beat the seatbelt extender on the airplane, was able to ride the rollercoasters at Disney, and fit in the seat of the ones I won't ride because they scare the crap out of me LOL, so this is one of the few things left on my list, enjoy the waterslides without fear that I will break the ride!  This is actually a funny story, so it is ok to laugh, because it was funny (although, I hope I don't offend anyone who has had a scarring experience like this, because I have had those as well)...I always had the ability to laugh at myself and find the funny in every situation (almost), and thank goodness I still do.  The last time we went to the Dells, they have those inner tubes for the wave pools/lazy river, well they are all roughly the same diameter, or so I thought.  I had spent the whole day using them with no problem, and then I got stuck in one, and I mean really stuck, like call the fire dept stuck LOL, thankfully my kids are good sports and not easily embarrassed, I wrangled my daughter, Toni, and once she realized what was going on, we both were laughing so hard we couldn't even get enough strength together to do anything, I had no idea where Marty and Miles were, somewhere on the lazy river I guess, so Toni and I tried to hide in a corner somewhere, and it was a two-person effort to try and find the valve to let the air out, of course it was on the inside rim of the tube LOL, and it took the two of us, one squeezing the valve, and one squeezing the air out of the tube to free me from my prison of air LOL  I told my aunt this story the other day, and it was still as funny now as it was then.  So, there is your funny story of the day, make sure you get a good visual of me stuck in the inner tube and laugh, it's ok, really!   Have a good spring break with your families!

Well, it had been a week since they told me I had this bad bacteria and needed antibiotic treatment for it, and since they were attributing all of my pain and eating problems to this, I had assumed that they would have the treating GI doc call me right away to start this, NOT!  A week had gone by, no phone call, nothing.  I called and left a msg, still nothing.  I called the next day and refused to get off the phone until I could talk to a live person, and then they told me exactly what I predicted would happen, oh yeah, we have a GI doc for you, but it will take 2 weeks to a month to get an appt, and then that person can treat you    I am so beyond that at this point, so I told her I knew you were going to say that, and told her that I have a GI doc that is close to me that was caring for me before, and I felt like he was perfectly capable of treating this, he just needs the info (labs/reports/etc...), she promised me she would send them all by fax to him that day so we can start.  I gave her a day and then called my GI doc, they had everything EXCEPT the one thing they needed, the lab report that shows which bacteria they isolated   So, now I need to call them again and raise some more hell, which is what you really need to do when you are already sick and trying to have a life!  I am also waiting for lab results to come back because I had a little scare, worried that I have a GI bleed going on as well, let's pray not

I finally broke down and went to a pain doctor recommended by a friend of mine, she was very nice, but right off the bat asked me why I was sent to her since she usually only does procedural pain relief (spinal blocks, etc...) and usually only after the other docs are able to tell her what the underlying problem is, well that just left me speechless, another strike for me, I have to laugh at this point, I'm in pain because they can't figure out what is wrong, and I can't get good pain relief because they can't figure out what is wrong LOL  She did mention that she feels like the pain I have is from adhesions, no need to say anything else except viscious cycle, and said since the pain is visceral (organ related from the pulling), she has a procedure that she has only done a few times (guinea pig alert!), and said it may or may not work for me (heard that before!) and it involved a procedure under sedation, in the OR where they do a splenic (spelling is wrong) sympathetic nerve block to block pain to those organs.   I talked to my primary's nurse afterwards, and she was not real comfortable with someone doing a procedure on me that they have only done a few times, neither am I.  She is writing the referral for me and sending me to the pain clinic at their hospital to see if I fare any better with them. 

I am going today to buy Dr. Oz's new book, YOU: The Smart patient, I love his stuff, should be a good read, maybe it will make me laugh.  
Jules

I am two weeks post ERCP/Sphincterotomy, and I am starting to wonder how many unnecessary surgeries and procedures I have had
I got a call from the GI doctor at U of C on Tuesday, they had the results from my biopsies.  I have an inflammatory bowel process going on in the large intestine, and when they biopsied my small intestine, they discovered that I have an overgrowth of "bad" bacteria that has exceeded the amount of good bacteria.  The GI doc that did the ERCP only does procedures, so she said that she would refer me to one of her colleagues that sees patients in clinic for these problems, and felt that I needed to be on some sort of antibiotic treatment.
I saw the surgeon at U of C yesterday, and brought him up to date with all that, he agreed that he thinks this is what has been making me sick, and stated that he firmly believes that it was the gastric bypass that started it all, a rare, but a problem he has seen, just only a couple times.  Even though he reversed my gastric bypass, it is still messed up.  He told me that I am going to suffer a lot over the next several months (his words, not mine), apparently the pain is going to continue while they go through the process of trying to balance the bacteria because the bad bacteria has damaged the nerves that control the movement (peristalsis) of the GI tract, so they pain and weird contractions I have are from that.  I have no choice but to believe it at this point and follow the course of treatment, but I can't help but feel distrustful, I feel like I have been a human guinea pig this last year.  I am willing to suffer more for another 6 months if I know at the end of that time I will feel better, I am not confident that is the case.  My calories are not any better than they were when I was on the TPN, and I am worried about my weight dropping again, which it already is, but no one else is worried about it.  I don't want anymore PICC lines/central lines and TPN, but I don't want to start wasting away again either.  The bright spot is that I get to go back to work, but I don't think anyone is confident that I will be able to handle it, but I am determined to have some sort of normal in my life.

The hospital nightmare is over, whew!   I came home with some sort of respiratory bug, no antibiotics needed though, thank goodness.  I have this terrible lower half of my body swelling that was really concerning me, went to see the primary doc yesterday, right away he was thinking blood clot Yikes!  He sent me down to imaging for a stat venous doppler, thankfully no clot. I am still waiting for the biopsies from the colonoscopy to come back and tell me what kind of Colitis I have, and I'm not even sure if I buy that theory anyway.  Right now I am just trying to recover enough to go back to work short days and find a way to manage the pain since the pain meds they sent me home with are contraindicated for 3 medicines that I already take, and they knew that, frustrating.  I am seeing my original surgeon today for a follow-up, maybe he can help me out.

I'm sorry that I couldn't get to everyone on the phone today, whether you called or I was supposed to call you back, it was crazy...I left my room about 9am to go to the procedure and waited there for 3 hours, and then they told me that the nurses are union and it was their lunchtime, so all work comes to a halt for an hour, hey ER friends, I think we should try that, right? LOL  So, when the lunch break was over and I was delirious from pain and fright, they took me back and were very disappointed that the IV that I had stopped working, again with the voodoo doll! So they used the PICC, which I warned them works sporadically, but it worked.  They decide to do an upper endoscopy also, i told him that before my gastric bypass they did the blood test for HPylori bacteria, but he wanted to do a biopsy of my stomach anyway and test for that, and then they would do the colonoscopy and do their biopsies there.  I have a stomach ulcer, they won't know the answer to anything else until tomorrow.  I didn't get back to my room until 4:30pm!  They are trying an oral pain medicine to see if that works and takes a step closer to home, so far it hasn't worked, but I will give it another 15 minutes or so.  They tried to use my PICC when i got back to my room when they hooked me back up, and of course the machine just beeps, I am so done with this thing!  So two more pokes and I have another IV in my injured, potassium burned arm.  I can't think of anything else at the moment, except thanks! Love, Jules        

Well, I had the ERCP on 2/17/09 (ERCP is done under endoscopy, and in my case was done to try and relieve my pain/nausea symptoms by cutting the sphincter of oddi which is where the pancreatic and bile duct come together), I woke up with some pain, so they kept me for observation because of the risk of pancreatitis, they had also left a stent in place in the pancreatic duct to allow the dye they injected to flow out and NOT irritate the pancreas...well, I'm still here in the hospital with tremendous pain and sometimes nausea and I haven't eaten since the two bites of cereal I had on Wednesday, so yesterday they took me back to endoscopy to remove the stent from the pancreatic duct, hoping that maybe this is what was causing my pain.  They removed the stent, and were hoping that by today I would be feeling better, and I am not.  The pain is still bad, and once again I am a mystery, the resident that came this morning is going to talk to the GI doc, but mentioned maybe more scar tissue/adhesions from my other surgeries.  I hope not because the cure for that is more surgery!  So, it is all a mystery for now, add a side order of sleep deprivation, which I am sure is not helping me any.  I will post another blog when I know more.

I spoke with the GI doc today, and we are going to go ahead and try an ERCP to see if that helps me. There is a substantial risk of Pancreatitis VS 30% chance that it will fix my problem, but it is a risk I have to take.  If I do nothing, my life will continue to stink, and I just need to get on with my life already, back to work, back to my life, my family.  Unless my surgeon here objects, they are going to leave the PICC line in, I used to have great veins, now they are crap, so they would rather keep the already established IV access that we have, at least then they will have something to start the anesthesia with, and they can try a secondary line if necessary once I am already out.  They told me to expect to stay overnight for observation, unless I am totally pain free afterwards, then I can go right home.  I am calling in all my prayers for this one, I think I am going to need it, but as my hubby said, I am due for a break here.  I will keep you all posted.  I am the first case of the morning on Tuesday Feb 17th at 7:30am.  Thanks for thinking about me!

That's me, pulling out what is left of my hair LOL  Thank goodness I had thick hair to start with!  This is day 12 of the PICC line/TPN, and it is getting really old, really fast.  It is doing what it is intended, I do feel like I have gained a few pounds, of course having to shut off all of my old built in alarms that are shouting at me "YOU ARE NOT SUPPOSED TO GAIN WEIGHT!", I do understand that right now I need to gain weight, but there is that little part of me that is not ok with it.  My friend Susie is so sweet, they have a baby lamb that is having to be bottle fed, and they named her JBird after me, so cute, I almost cried.  I don't know what I would do if I didn't have the wonderful support of my family, friends, and co-workers, I am very lucky.  I go to see the doc on Thursday to evaluate where we are in all this, I know he will be happy to see the pounds, but I will have to be honest with him and tell him that the pounds are from the PICC, I am eating also, but not very much (TPN kind of kills the appetite), and what I do eat still makes me sick to varying degrees.  I want this PICC line out so that I can go back to work, but I know that without it, I will be right back where I was, and possibly worse.  The alternative is a g-tube, and I just can't mentally go there. I would be able to work with it, but it just conjures up images of nursing home patients. I am hoping that I haven't scared the GI doctor away, she is great and really knows her stuff, but she was already nervous about doing an ERCP on me before, and I think this latest hospital episode just reinforced her fears.  I left her a message to touch base with her, I am waiting to hear back.  So, for now I am trying to keep my spirits high and my anxiety low, and embracing the blessings in my life.

Well, I had the MRCP last wednesday, and I got sick from the medicine that they injected me with that stimulated the pancreas.  I ended up in the local ER on Thursday with abdominal pain/nausea and on Friday they put a PICC line in and started TPN, and it was decided that no matter what, I cannot have an invasive procedure like an ERCP unless my nutrition status improves.  It is a risky procedure as it is, and of course my MRCP was normal, so we are back to not knowing what is wrong with me.  I was excited because I was going to go back to work this past Sunday, and now that I have the PICC I can't because of the risk of infection (I work in a hospital ER), so this has done wonders for my positive attitude.  I am just so angry right now, nothing seems to happen easily for me these days.  I just got home from the hospital yesterday, so it is at least better just being home.