What to do for friend w/ chronic debilitating pain?

Discussion in 'Off The Beaten Track' started by Anita18, Apr 18, 2012.

  1. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    I just got a text this morning from my coworker who checked himself into the ER. :(

    For the past couple of months, he's been suffering from severe abdominal pain. He's gone to doctors several times a week now, trying to see what's wrong. He's gone through countless CT scans, endoscopies, they even put in a stent for his gallbladder when he developed jaundice, but otherwise nothing is wrong. He even went to a renowned gastroenterologist an hour away, and he found nothing. It's really sapped his spirits.

    The pain had been recently manageable with painkillers (yay oxycontin) but this week nothing has helped, which is why he went to the hospital this morning since the pain had just gotten so bad. I have to stay behind for a bit to walk his dog this afternoon (poor doggie :( ) but I plan on visiting him this evening if I can.

    They're doing another CT scan now and another endoscopy to change out the stent. If it's even that.

    I talked with him yesterday afternoon, and frankly, he looks like utter hell. He's got anxiety on top of everything, so the stress of having bad pain and not knowing where it's coming from is seriously not helping. He's also got personal problems with the stress of his longtime gf recently leaving him. He has no other friends here besides us. His family is back in France, and he's said he will go back if there's nothing more that can be done medically here. At least over there, he wouldn't have to worry about insurance approving anything. :eek:

    He's just so tired of having to deal with the pain mostly, just tired of it. He hasn't given up quite yet on seeing doctors and continues to go to work as his pain allows him. But he may be just about ready to give up. :(

    Is there anything I can do? I just want to be able to help him, but obviously if it's stress-related, he can only help himself. Seeing him so defeated is really terrible, and I think we're all standing on sidelines wishing we could help him but being unable to. :(
  2. Sparks

    Sparks Well-Known Member

    Joined:
    Jul 8, 2002
    Messages:
    7,169
    I'm sorry about your friend. As someone who is struggling with chronic pain, I can only advise a couple of things.
    * There may be times he doesn't want to see or talk to anyone. Be patient and supportive. Anxiety and depression can be common, so don't try to direct his life...just listen. If he shuts you out, remember it is temporary and don't take it personally.
    *DO check on him and its very nice of you to walk his dog. Bring him food if you can. Ask him if you can run errands - go to the pharmacy, light shopping, etc.
    Good luck to you. :)
  3. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Yeah I was gonna suggest going out to the beach this weekend, but I dunno if he'll be in shape to. Is that too pushy?

    I just want to help. :(
  4. Sparks

    Sparks Well-Known Member

    Joined:
    Jul 8, 2002
    Messages:
    7,169
    I don't think it's too pushy, but if he says 'no', let it be.
    Then you can take me to the beach! ;)
    I know how hard it can be to feel helpless. :(
  5. sk8pics

    sk8pics Well-Known Member

    Joined:
    Aug 4, 2002
    Messages:
    3,422
    My suggestion is to just ask him what you can do to help. If he needs to vent when you ask that, let him. And then perhaps he'll tell you what you can do. Maybe as simple as continuing to take his dog for walks. I know when I was in the hospital I worried about who was going to take care of my cats. Or maybe he'd appreciate company when he walked the dog, in case the pain gets too bad during the walk? Anyway, this is my suggestion.
  6. Japanfan

    Japanfan Well-Known Member

    Joined:
    Mar 1, 2002
    Messages:
    12,777
    I've known a few people who live with chronic pain and it looks like a hellish existence to me.

    There are workshops and clinics for dealing with chronic pain and I've heard they help.

    And the problem with painkillers is that they can be addictive and can cause something called 'rebound', which I assume means the pain comes back double when the medication is stopped. One person I know with chronic back pain who is addicted to painkillers actually called emergency to take him to the hospital for morphine one night.

    This person has had innumerable tests and recently had a procedure done to paralyze parts of his back (something like that). I don't know if it worked. It has taken him a very long time to get a diagnosis though.

    I would encourage your friends to keep trying to find the source of the problem. Even see alternative practitioners - acupuncture can do wonders for pain, or so I've heard.
  7. smileyskate

    smileyskate New Member

    Joined:
    Oct 26, 2007
    Messages:
    667
    I agree with encouraging alternative practitioners, acu, massage, reflexology, maybe some physical therapy. Try ice and/or heat for brief periods to the area. Also, IF he is open to it, get him some books (even used on Amazon or half.com, etc.) from Dr. Sarno or other related practitioners. There is another doc out there with a similar book, I think it refers to back pain, but the same theories apply. It may help his mind or give him other ideas about pain sources. Hope it helps.
  8. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Thing is, back when we thought it was a digestive issue, I pumped his brain full of alternative possibilities. :lol: Not acupuncture, but he did try some herbal medicines. My mom refused to take prescription painkillers after surgery, so she drank Chinese herbal teas and they helped.

    Part of it is also an issue of what insurance will cover. I'll bring it up, though. At this point, it really wouldn't hurt any more than it has been. Thanks for the advice, y'all. :)

    My other coworker took his dog home with her for a few days (since I have a cat and they probably wouldn't get along), and I have half a mind to wash his dishes. He's got a sink full of dirty dishes, probably not in the mood to do any housecleaning...
  9. smileyskate

    smileyskate New Member

    Joined:
    Oct 26, 2007
    Messages:
    667
    You sound like a great friend Anita. I hear you about the insurance but maybe they will set up a payment plan or work with him on costs, while he writes an appeal to the insurer, maybe along with a doctor's note. Cleaning the dishes sounds like a nice favor. Hopefully it will help his anxiety (he should be treating it too) seeing the kitchen sink cleared out.
  10. danceronice

    danceronice Corgi Wrangler

    Joined:
    Apr 10, 2006
    Messages:
    6,462
    I'm not clear, but since they're treating it as if it may be gall bladder or gastric, I'm going to assume this isn't chronic muscle ache, back pain, etc. but something localized in the torso? There's a lot of things that can be if it's really not gastric or gallstones and they're generally not great things to have, so honestly, I'd just stick to Sparks' advice until they figure out what is really causing the pain. Offer to help where you can, and if he's not feeling social/talkative, give him space. I wouldn't go suggesting any alternative-therapy this and Chinese-medicine that because there may be something that needs a lot more serious treatment. Leave medicine to medical doctors and focus on helping him with daily stress--if he's in so much pain he's going to the ER he probably REALLY does not feel like cooking, washing dishes, walking the dog...when I got out of the hospital and was completely zonked on prednisone (which does what it has to do but makes the patient feel like crap) it was a HUGE relief to have my mother stay with me to help with things like cooking, laundry, driving to the doctor on days when I was almost too tired to move, even feeding the betta fish. Little stuff is HUGE when you're feeling that awful. I would bet he would really appreciate having his dishes cleaned.
  11. meggonzo

    meggonzo Well-Known Member

    Joined:
    May 25, 2002
    Messages:
    1,579
    Complementary (alternative) therapy would not solve his main problem, but it would help to alleviate some of his stress and possibly his pain - look into healing touch or Reiki. There are probably volunteers or practitioners at the hospital that are certified.
  12. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Yeah, I saw him last night and it was really bad. They gave him painkillers in the morning which worked like a breeze, but in the evening, they didn't work nearly as well. And he hadn't been given his evening dose when I came in and he really seemed to be in excruciating "don't talk to me about alternative treatments right now, just make this stop!" kind of pain. He said it was the worst it had ever been in the past 3 months. And he had a high fever too, which generally says that his body is not pleased with something internal.

    Being in a hospital generally sucks, let alone being in one in such pain and alone most of the time, so I figured I'd stay for a while and keep him company at least. He seemed to appreciate it. My boss had been there too earlier, reading him "A Confederacy of Dunces". :lol: Again, not sure if it helped with the pain, but at least it alleviated the "being alone in the hospital" part.

    The other coworker even gave his dog a bath, which isn't surprising in the least :rofl:, and sent pics of her kids putting multiple towels on her ("They say she's cold!"), with the dog looking bewildered. Cheered him up a bit. :lol:
  13. Sparks

    Sparks Well-Known Member

    Joined:
    Jul 8, 2002
    Messages:
    7,169
    That's nice. You can't fix it...he doesn't want his friends to fix it, he just needs support. Good job.
  14. Cachoo

    Cachoo Well-Known Member

    Joined:
    Sep 15, 2010
    Messages:
    2,422
    Jaundice, high fever, intolerable pain--how frustrating and excrutiating this must be for him as no solution seems apparent. I too think you are a great friend for just being there for him and doing tasks that he feels too bad to attempt. Would that we could conjure up "House" for him...
  15. nursebetty

    nursebetty New Member

    Joined:
    Jun 1, 2010
    Messages:
    227
    Jaundice doesn't sound like stress related. Maybe you could ask him about calling some family. Sounds like he needs someone to take care of him or at least help him take care of himself. Remind the nurses about his medicine for one thing and I bet no one is making sure he drinks fluids and such. I'm sure just knowing someone is taking care of his dog and apartment is a load of his mind. Keep up the good work.
  16. Southpaw

    Southpaw Saint Smugpawski

    Joined:
    Jan 17, 2008
    Messages:
    11,967
    Please please PLEASE tell me your boss put on different voices for each character. That book just begs for dramatik reading. I can't think of a better book to read to a hospital patient than that one. I bet he really appreciated it.
  17. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Believe me, his family calls all the time. :)

    My other coworker was actually physically taking care of him after he broke up with his girlfriend. As in, was having him over for dinner with her kids and making him lunch every day. But she has two kids to feed on her own with a grad student budget, so she just couldn't afford it anymore. This was way before the pain started to get bad, though. Naturally she partly blames herself for his downward spiral. :lol: She's such a sweetheart. I figure, if he wants to talk, I'll totally listen, but the guy is 30 years old and I'm sure he can get his own dinner somehow. :p

    I don't know, I wasn't there. I should ask, though. :lol: My boss is pretty great.


    My coworker was transferred to another hospital today, and it's apparently super-old and not nearly as nice as the original one. Hopefully they'll still be able to take care of him. :eek:
  18. mysticchic

    mysticchic Well-Known Member

    Joined:
    Sep 25, 2005
    Messages:
    5,537
    I live with chronic pain. I have 2 pancreas. I had sever stomach problems and they couldn't figure out why. Then I went to a specialist who knows about this (only 2% of the world has this). I had the same syptems he is having. It's called pancreas divisum (I know I didn't spell it right). But it doesn't show up in CT/MRI test and if you have it long enough the blood work doesn't show up. It affects the bile duct so it backs up the liver and everything. The only way test is an ERCP with a doc who specializes in this. He may want to ask his doctor about the possibility of it. The pain is intense and I know stress and pour eating habits bring on acute attacks. Before they figured it out, they took out my gall bladder and stinted my bile duct. The other thing it could be is a suto (sp) cyst on the pancreas. Hope it all works out for him and your doing a good thing helping him.
    Last edited: Apr 21, 2012
  19. Japanfan

    Japanfan Well-Known Member

    Joined:
    Mar 1, 2002
    Messages:
    12,777
    {{{mysticchic}}}} You are so brave.

    That book is perhaps my favourite of all time, but I'm not sure having it read aloud while one is overwhelmed by pain would help one to appreciate the brilliance and humour of the book.

    I hope you friend finds relief soon Anita 18. I can't imagine being in his situation. I think I'd be screaming for more drugs and kicking up such a fuss that (hopefully) someone would give them to me.
    mysticchic and (deleted member) like this.
  20. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Thank you so much for the info - I'm not sure if they've considered this, but he mentioned they were looking into pancreatitis. Not sure if they ruled that out.

    What treatments do they have for pancreas divisum, once you were properly diagnosed? Did anything help with the pain?

    I did actually go through A LOT of books when I was severely nauseous with the stomach flu and was home for a week. Then again all I had to do was not move and I was relatively okay...

    Seriously, I would be doing the same thing you'd be. :lol: My menstrual cramps can be pretty bad, but at least I can lie down and go to sleep knowing they'll be gone in 6-8 hours. He doesn't have that reassurance. :(
  21. Scrufflet

    Scrufflet Active Member

    Joined:
    Oct 29, 2006
    Messages:
    515
    I may be off base here but I wonder if a naturopath would help? I've had many problems that regular doctors were not able to solve. If you find a good one who will work cooperatively with a GP and see his problems holistically, there might be some benefit.
  22. danceronice

    danceronice Corgi Wrangler

    Joined:
    Apr 10, 2006
    Messages:
    6,462
    http://www.quackwatch.com/01QuackeryRelatedTopics/Naturopathy/naturopathy.html

    Especially not when liver malfunction appears to be a serious possibility. I would OTOH seriously look at what mysticchic is talking about as that might be a very rare disorder but it certainly does match the symptoms and once they rule out the more common possibilities (gall bladder disorders, cirrohsis, liver cancer, etc.) which they probably have already tested for, it's time to look at rarer possibilities.
  23. susan6

    susan6 Well-Known Member

    Joined:
    May 24, 2002
    Messages:
    3,694
    Did he have any kind of surgery before the pain showed up? I've heard nightmare stories about idiotic doctors accidentally leaving items inside a patient during surgery (like sponges or cloths, or even surgical tools), which can apparently cause excruciating pain.
  24. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    As far as I know, no. It just flared up suddenly, after the stress of breaking up with his gf and general work anxiety.

    He might be going back to France soon if doctors here don't find anything. At least he'd be with family and longtime friends, cause we're all he has in the US. :( It seemed, according to my boss, that the repeated tests are to find "the tumor", but seriously, they haven't found anything after months of tests and I'd think that a tumor causing this much pain would be friggin' visible on SOMETHING, you know?

    I did suggest the pancreas divisum to him, and he said they did an ERCP test this morning. No idea what the results of that are. I think the doctors are getting freaked out that they can't find out what it is, and he already doesn't do well with anxiety....:(
  25. Allskate

    Allskate Well-Known Member

    Joined:
    Feb 16, 2002
    Messages:
    8,168
    Maybe there was something visible and they just missed it? That happened to a friend of mine. When she was finally diagnosed with cancer, they looked at scans from over two years before and saw the cancerous tumor in them. They had just missed it. :eek: Or maybe someone missed or misread one of your friend's test results? (I've had that happen. The test result was sitting right on the freaking desk when the doctor wrongly told me it was just stress. :mad:) It might be worth having someone else look at his entire medical record and see if they can figure out what the problem is. Too bad there isn't a real Dr. House. Maybe it isn't even something that is very difficult to treat.

    I'm so sorry for you and your friend, but I'm glad he has you and your other co-workers there for him. Pain is difficult to deal with, and not knowing what is causing it can be frustrating and stressful. :(
  26. AragornElessar

    AragornElessar Well-Known Member

    Joined:
    Oct 10, 2004
    Messages:
    5,283
    First off...((((mysticchic))))

    Second, that first post Anita, I felt I was reading what I've been going through the last ten years.

    Yes, you read that right. Ten years.

    However, we have a very good idea of where my problems come from, as ten years ago I had my gallbladder out. Sadly for me we learned too late, after he took out my gallbladder, I couldn't have picked a worse Surgeon in our area to do it and...

    All of my Pain issues started a year after this was done and have only gotten worse as the years have gone on. It started as bouts just every so often, but now it's the Grace Periods that are every so often. Now when things get hellishly awful, not only is there pain that has me folded in half, but I'm also tasting bile and you know how Dr. Oz is always saying check the colour of what's in the toilet bowl? Well when things get really bad these days, number two is greyish white. I'm also now pretty much constantly bloated all the time.

    However, all of the tests over the last ten years have shown nothing's wrong. At least, according to the Doctors. Actually, I should say according to the Specialists, as my Family Doctor's just as frustrated as me over all of this. We knew about the partial obstruction about a year or two into all of this thanks to X Rays during one of my many ER visits. That's only my Family Doctor though because when there is something found by the Specialists, the report ends up saying nothing's wrong.

    Sedation doesn't work on me anymore, or if it does it doesn't work for the entire time it would on a regular person, so my last Colonoscopy I had here at home, I was wide awake for. Because, of course, *their* Sedation would work...:rolleyes: Which in turn when she got to the partial obstruction and couldn't get the scope through, although she certainly tried to force the thing through, I had the unpleasant experience of feeling the entire thing. Since she couldn't go any further she ended the scope there and then.

    While that was a special Hell all it's own, at least I had the solace of thinking that I finally had proof beyond the shadow of a doubt something really is wrong. Anyone want to take a wild guess at what the report said? Completely normal and that my entire large bowel had not only been completely scoped, but no evidence of any form of obstruction showed itself.

    I'm also a Kidney Transplant Patient w/a rare Bone Disease (actually a rare form of Dwarfism, but only learned that the last two years, as it's *so* rare there's next to nothing on line about it) and it never seems to fail. Oh, they'd *love* to do more, but they just don't want to harm the transplant. Doesn't matter my kidney's down on the left hand side and all of my pain's on the upper right, but that's the excuse they use. Saw a Specialist in Ottawa a year ago and for the first time in this battle, they used my Bone Disease as the excuse to why they didn't want to have anything to do w/me. [sarcasm]My personal favourite from that waste of time trip though?[/sarcasm]

    When I told first the Fellow and then the actual Gastro Chief that now when things get really bad I'm tasting bile, know what I was told? That everyone makes bile and it's perfectly normal. Having it, yes. Tasting it though? I don't think so.

    That's not the worst thing I've heard come out of a Specialist's mouth during all of this though. Oh no...That was at the beginning when we thought this might be Ob/Gyn related in someway and I was sent to a woman Ob/Gyn in Sault Ste Marie who is a Past President of the Cdn Association. The thinking being since she was so prestigous... She maybe considered that due to her creditatals, but after she informed me she didn't think it was Ob/Gyn related, she continued on w/...

    "I don't understand why you're so upset about all of this. As a Genetic Misfit, you know how the Medical World works and you should know all too well you'll never find anyone to help you."

    For someone who was told she was a Freak, and more than once, everyday by the kids at School and all through my School years, I leave it to your imaginations what hearing that from this Doctor made me feel.

    Right now, I'm going through yet another round of tests by a Surgeon in our area in the hopes he might just help me in some manner. Had yet another Abdominal CT Scan this afternoon and yet another Colonoscopy booked for May 14th. However, I told him in no uncertain words the only reason that was going to be booked was only if I was put out completely *and* had that in writing.

    When I got the date and various papers to bring along for it a couple of weeks ago, there in the upper corner was a message that an Anestist would be there and providing my "sedation". I'll have to have a bit of a chat w/him or her though to ensure I don't have a repeat of all but one of the five I've had during all of this.

    That one and only time, was also the one and only time I had an Anestist there in the room making sure I stayed comfortable and a good thing too as sure enough, halfway through the thing the sedation wore off. That was also my very first scope of any kind, so I foolishly thought that was how they were all done. Should have known better. :(

    I overheard the nurses setting up the machine for my scan and what I'm having to deal w/was called "Abdominal *Discomfort*". I don't call having such Hellish pain that I have to take both of two of the most powerful painkillers you can get in pill form twice a day, along w/Tylenol w/Codeine just so I can simply sit or stand up straight. I don't even have that though after the latest bad bout and also after this last really bad episode, I now have no appetite and when I do eat, it's can't be a whole lot as I feel stuffed on just a very few items of food.

    Just what I need as a Type 2 Diabetic, huh?

    So I completely and totally have my heart going out to your friend. I'm happy he's made such friends at his workplace like you, your boss and the person looking after his dog. :) As long as you've got people who love and care about you during something such as this, then you've at least don't have to worry about being alone.

    I can't think of much more to add that hasn't been suggested here already. The one really important thing I can think of is to simply follow his lead. If he's in such agony talking's not exactly wanted, then say that's okay and just be there. W/myself during the tough times over the years, I always knew I had a *real* friend visiting me or calling in when they paid attention to not only what I was saying, but also other cues and respected them.

    It sounds to me though that you're already doing all you can to help him out. Just being there for him right now and supporting him through it all is exactly what he needs from his friends right now. He's lucky to have you and I really hope they're able to figure out what's going on w/him. ((((HUGS))))
    WindSpirit and (deleted member) like this.
  27. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    Oh AragornElessar, I wish things were easier for you too. :( That just sounds terrible. It's also terrible that the doctors have stopped trying to figure out what's wrong or even believing that there's something wrong to fix. (Aren't doctors SUPPOSED to be empathetic? :huh: )

    I don't think he's hit that point yet. They keep testing him, TRYING to look for something. Which is why I'm still unconvinced that it's cancer - if you're looking for something, you usually find it. I mean on Wednesday, he'd gone in for 2-3 (it was definitely more than one) CT scans in just that one day. I'm sure they aren't dragging him out of bed and into the CT scanner because the nurses have nothing better to do. Or at least I hope not....He's having another procedure, I think a colonoscopy, tomorrow morning. They're going to test him out so much that I think the only other thing to try would be to cut him open and see for themselves. :(
  28. Japanfan

    Japanfan Well-Known Member

    Joined:
    Mar 1, 2002
    Messages:
    12,777
    {{{AragornElessar}}}

    Unbelievable. Unbelievably awful and you're talking about 10 years of your life with no obvious end in sight?

    How do you keep your spirits up and keep going? Are you at least in a situation where you don't have to work or worry about money?
  29. skatesindreams

    skatesindreams Well-Known Member

    Joined:
    Sep 30, 2002
    Messages:
    13,758
    ((((((AragornElessar)))))
    Thanks for sharing your story.
    I hope that your activities here have helped you cope with what you deal with on a daily basis.
  30. victoriajh

    victoriajh Well-Known Member

    Joined:
    May 26, 2002
    Messages:
    1,997
    This!
    Wow I am so sorry to hear of your health challenges .... You are quite an inspiration !!
  31. AragornElessar

    AragornElessar Well-Known Member

    Joined:
    Oct 10, 2004
    Messages:
    5,283
    I used to think so. :( I wish things were easier for me too.

    I hope whatever's going on is found and soon for his sake and all of yours as well.

    The last two years has not been easy, as now depression's reared it's ugly head and that's half due to what I'm going through and half due to my Dad's own ill health. Factor in my Mom's in deep denial over how things are now and...It has not been fun around here and that's an understatement.

    I do crochet and knit for charity, mostly for the Neo Natal Unit in Sudbury, and that has helped a wee bit. However even that's starting to not be enough. Another thing that doesn't help are these "well meaning" people who know my Parents, but don't know me and decide I need a talking to about being positive about my situation.

    We're in the middle of nowhere, I'm legally blind and can't drive. Now if what's going on w/me other than that wasn't, I'd be out of here and working somewhere. Mom's now legally blind due to Macular Degeneration and Dad's health is so bad he can't drive anymore. Which means here we are in the middle of nowhere and dependant on people to drive us over to Sudbury, three hours away, when we need to go over there. The latest person who has volunteered was someone from our local Church and while Mom knows her well from the United Church Women's Auxilary, I had never met the woman until two months ago when she dropped me off at my sister's on her way to Toronto.

    I'm used to people not getting why I hate it here, I wasn't born nor raised here and my parents were and...Anyway, usually people do listen to me explain *why* I hate it here, but she didn't. She's originally from Toronto and thinks it's just so wonderful and isn't willing to believe that perhaps what is wonderful for one person is Hell for another. Also told me I need to get more involved in the Community. Easy to do when you can drive and everyone else is of your own Generation, but when you're about to turn 40? Not so much.

    Not only did I get a lecture on being more positive, complete w/a story about how her Mother couldn't eat solid food when she was near the end of her illness, it was horrible, but her Mom always said how wonderful it was because at least she had something to eat,. That ended up being followed up w/how I shouldn't be so angry and I need to let go of that and the resentment I seem to have...etc...etc...etc... This was paired w/Contempory Christian music the entire way.

    As I told my sister, that is the *last* time I ever get a ride w/her. She replied w/rolling her eyes and then wondering why after hearing what I've been through that woman would even begin to think I didn't have a right to be angry about what's happened. Even our Transplant Social Worker in Sudbury told me she'd be worried about me if I *wasn't* angry about all of this.

    Then she ended up having to be the Driver for me, my Mom and my Cousin to a Family Funeral a couple of weeks ago and she said something to me that not only she had no right whatsoever to say to me, nor in the manner it was said, but was beyond the wrong time to say it. I let her have it and now Mom keeps going on about how she'll never drive me again. Well, all I have to say about that is one thing. Good!!

    I honestly don't know what I would do w/out the Internet and various communities I belong to on it. I would have lost it a long time ago w/out it and I know that to be the honest to God truth. And actually, while it's been ten years w/this battle, in total it's actually fifteen when you combine it w/another medical issue I literally had to fight to have looked after. Did you know that even though when your left big toe has completely shifted over towards the left, is under the first two little toes and touching the tip of the third, that means the foot is normal and nothing's wrong w/it?

    That took five years of going to various Ortho Surgeons to finally find Dr. Daniels at St. Mike's in Toronto. The ones who didn't do feet wanted to help me, but as they only did hips and knees, couldn't. The ones who did, well...See above.

    My first follow up after the joint being taken out and the toe fused, he came over to me w/his Residents in tow and asked me to tell them what I had gone through over the previous five years. Since I'm used to being used as a teaching tool for Residents, which I don't mind as it might help someone else somday, I didn't think anything of it and proceeded to tell them the entire story. After thanking me, he turned and told them when he saw the shape my joint was in in the OR, he was horrified.

    It literally broke into pieces as he was taking it out and if things had been allowed to keep going the way they had been, it would have imploded in my foot w/in six months. He then *very strongly* told them to *never* allow any patient of theirs to *ever* go through what I had to go through.

    Meanwhile, I was sitting there on the gurney in the Fracture Clinic w/this expression ---> :eek:

    Which then had him apologizing because he thought I had been told before that, as he'd sent the report to my Family Doctor. Who I hadn't seen before the Follow Up appt, so...Yeah, just a bit of a shocker to find out about.

    I graduated College w/a Diploma in Broadcast Journalism in 1998, had my Internship at CTV Sports and that was the last and only time I ever did anything in the Industry. Between what happened w/my foot and now w/my pain/partial bowel obstruction, I haven't been able to even think of applying for anything. I am on the Disablity Pension here in Ontario and have been since I was old enough to apply for it due to my eye disease taking away my periphal vision, so at least I do have some money coming in, but if I wasn't able to live w/my Parents I don't know what I'd do.

    Thanks Everyone for the good wishes. ((((Right back at all of you))))
  32. Japanfan

    Japanfan Well-Known Member

    Joined:
    Mar 1, 2002
    Messages:
    12,777
    I'm so sorry again, especially adding the legal blindness, depression and inability to pursue a promising career into the mix.

    The courage, patience and tenacity you must be forced to cultivate on a daily basis are beyond admirable. Really an inspiration and a reminder to many I'm sure that we have much to be grateful for and shouldn't indulge in petty complaints.

    Hopefully at some point there will be some relief for you - better times ahead - seems like not too much to ask.
  33. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    All of us visited him at the hospital today (at the same time :lol: ), and he's looking and feeling a lot better. All the tests are still negative, so he's still planning to go home to France to get more care without having to worry about work. He's only in the US for work, so as long as he stays here, it'll probably be difficult to not think about not being at work, even barring the part about being away from family and most of his friends. My boss has basically told him that there'll be a place for him in the lab if he wants to come back. My boss is pretty great. :)

    That really sucks. :( You're making it work, as all of us to some degree, that's we can ask for, I suppose.

    ((HUGS)) for support.
  34. skipaway

    skipaway Well-Known Member

    Joined:
    May 24, 2002
    Messages:
    7,542
    (((AragornElessar))) I am sorry for your travails. I wish you all the best and hope they find something to help you.
  35. skatesindreams

    skatesindreams Well-Known Member

    Joined:
    Sep 30, 2002
    Messages:
    13,758
    My thoughts are with all those here, who struggle with similar challenges.
    ((((Hugs))))) to each of you.
  36. skatemommy

    skatemommy Well-Known Member

    Joined:
    Jun 24, 2004
    Messages:
    3,214
    Hugs to all suffering. Anita, I'm not a medical staff but I would keep questioning the liver, pancreas, bile duct issues; especially with jaundice presenting. My SIL has something wrong with her bile duct that is congenital that may present symptoms like Crohns but it is not. She is going to the Mayo Clinic soon (her sister passed very young due to Crohn's like complications). Everyone in a hospital setting needs an advocate...University of Michigan Hospital tried to schedule my dad for an MRI when I politely reminded them he had a pacemaker (no can do) and so got him a CAT scan instead. Hope your friend finds some answers soon.
  37. Ajax

    Ajax New Member

    Joined:
    Apr 14, 2002
    Messages:
    3,302
    Anita18, does he have gastrointestinal problems? Diarrhea etc? I have a friend who developed chronic stomach pain a few years ago. She went through two months of testing for everything under the sun until somebody realized that she has celiac disease. She switched to a gluten-free diet and the pain disappeared completely within a week! I realize it's a long-shot but maybe your friend could ask the doctors if they've considered celiac.
  38. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,062
    I asked him too - I had post-infectious IBS and had pain and bowel issues. He doesn't have any bowel issues and they've tried restricting his diet and it didn't work, so I definitely think it's in the bile/gallbladder/pancreas level somehow.

    At any rate, he's planning to go back to France next month so he can concentrate on getting better without worrying about work. And he'll see the top specialist in France within 2 days of getting there, so huzzah for universal healthcare. :rollin:

    He's looking at lot better and he's coming to work just to teach us to do what he knows how to do and to finalize the paperwork. I'm really glad he can put his health first and I hope they'll find something.

    And he also found out yesterday, that the person who previously had his apartment died of liver cancer. Seriously bad juju! :yikes:
  39. Smiley0884

    Smiley0884 New Member

    Joined:
    Mar 13, 2003
    Messages:
    2,696
    ((((((AragornElessar))))) So sorry you have to deal with health problems that prevent you from having the freedom to pursue your career and many other things that people take for granted :(

    Anita, sounds like you're doing everything you can to be a good friend :) I know whenever I'm going through a rough time, even if there's nothing specific my friends can do, just knowing that they are there, and willing to help makes me feel better.

    Hopefully your friend gets better, and pain free.
  40. colinmom71

    colinmom71 Active Member

    Joined:
    Mar 20, 2003
    Messages:
    617
    What Mysticchic is referring to above is a pseudocyst of the pancreas. My dad was struck by this condition about 27 years ago, and it took months to get an accurate diagnosis. At that time, CT scans couldn't visually appreciate the cyst as his was presenting abnormally inside the pancreas (most pancreatic pseudocysts form on the organ's exterior).

    Dad had had digestive upsets for weeks, maybe months, before he came down with an acute pancreatitis attack in fall of 1986, which resulted in a month long hospitalization. The first week or so, we were given 50/50 odds of survival as they feared cancer co-morbid to the pancreatitis. In the end, the pancreatitis responded to medical treatment and later testing concluded in the pseudocyst theory. It turned out that no image testing then was conclusive for a tumor or cyst because the cyst was internal to the pancreas (the vast majority of pancreatic pseudocysts present on the external surface of that organ, making internal cysts difficult to appreciate visually at that time).

    Back then, dad's gastro docs essentially chose to surgically treat the "tumor" they couldn't accurately diagnose... It was a successful gamble, though he was left an insulin dependent diabetic due to the surgical loss of much insulin producing tissue while the cyst was excised.

    I mention this because I don't think a pseudocyst of the pancreas is necessarily at hand on your friend's health problems. It's worth a mention should he have the unusual condition with which my dad was afflicted (though that's rare but possible)... But, I would think that an MRI would show a problem with the pancreas that a CT scan may not reveal.

    What you're describing on your friend's behalf sounds like "bowel death". Either he has an extreme problem with bowel damage due to undiagnosed and severe Celiac's disease, or his problem is blood flow into the intestinal tissue. Look into "ischemic colitis", because quite frankly THIS is what I think is happening to your friend.

    I hope this finds you and your friend well, and that he finds good health soon!