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ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 4/11/2011 4:31 PM (GMT -6)   
Hi everyone, Im new to this forum but I have been on the ostomy forum for some time. Let me first recap my last three years. Nov 08 I was diagnosed with rectal cancer. Feb 09 they went into the rectum to remove the tumor and repaired the muscles, spent 7 days in the hospital, went home and couldnt control my bowels, my bowels broke through and went into my vaginal area and made me sepsis. March 09 they made a temporary loop ileostomy. Over several months stool was still getting through and sitting in my rectum and I had no feeling to where I could empty and creating abcesses  therefor June 09 they took out my sigmoid colon and made a permanent colostomy so that no stool would enter the rectum.  I was good for a couple of months but started getting obstructions, one after another that would entail hospital stay with ng tubes and lots of pain. In March 2010, I was at work and was in pain, collapsed and rushed to the hospital where my colon has ruptured due to a peristomal hernia. I woke up after surgery to find out they had removed the rest of my colon and replace a new stoma and used mesh to tack up the other side. Started having back pain and abdominal pain, my doctor sent me to neurology which did a full body MRI. In the MRI they found tumors in my uterus and bladder which prompted an endometrial biopsy which showed complex hyperplasia. They sent me to a pelvic reconstructive surgeon who insisted with my history a hysterectomy was needed. Oct 2010 I had a complete hysterectomy and the tumors removed from my bladder with a bladder reconstruction along with a rectovaginal fistula repair from my very first surgery. So here we are now, overall I feel good but I still have this back pain and the abdominal pain, Some days Im fine, some days I can barely get out of bed. I am a nurse and I go to work everyday, Ive missed a few days but try not to miss many. I have this pain, yet the doctor tends to ignore it, my ct scans are ok, it does show another hernia but im going to continue to get them because of the amount of surgeries so fast. I cant believe how much my life has changed. Before nov 2008 I was a coach for special olympics, worked lots of overtime, ran with my children now it seems like Im doing good just going to work. I cant stand to do anything afterwards. Now some days I dont have any pain, sometimes I can work all day and dont hurt, come home sit down and hit so bad I cant stand it. The doctors dont see a reason from the pain but I swear Im not making it up, its there and Im miserable. Its making me depressed because I think they all think Im crazy. Im not on any pain meds, he did give me some tramadol which works except I cant sleep on it, but he only gave me a few and made me feel like I was a drug addict just for those, I did call him for a refill and he said he doesnt have anything showing him why I need them. Over the last year I have been taking several ibuprofen but recently developed ulcers and they started bleeding so they told me no more ibuprofen so now Im not taking anything. I have never been a drinker but if I drink some shots it does help but where will that lead me. Im so desperate. Im 36 years old and feel like Im 80. I just want my life back. I want to walk with my kids and go to their games, I want to work with the special olympics again. Please any advice is welcome.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/11/2011 5:29 PM (GMT -6)   
Hi OhCountryBear, welcome to the chronic pain forum. Wow, what a story you have to tell. You really have been through the ringer it sounds like. You know some drs just don't get it when we tell them we are in pain, usually its our PCP's telling us this too. But, with the war on drugs and all the stigmas attached to chronic pain, they don't want to give us any kind of pain medication on a long term basis. My PCP will allow 10 days worth of pain meds and then you are on your own. They say they are not equipped to handle chronic pain patients, and I agree after seeing how pain mgt drs work. I know you said you had an MRI done and it was a full body scan. Do you by chance have a copy of the written reports of this scan? If not you need to request a copy of it. One thing I learned is a person can be told their scans are considered insignificant, but there may a bulge going on that is not needing any surgery and the dr will say its ok. This is why I say get the written report. My next step would be to ask the PCP to ref you to a pain mgt specialist. These drs are trained to deal with all sorts of different pain more so than a PCP or even a neurologist. At least the PM dr can send you for any testing he may deem necessary to be able to give you a proper dx. You know sad but true but a very high percentage of us have been where you are right now. There is nothing wrong with advocating for proper medical care either. Sometimes it just has to be done that way when no one else is willing to listen or help.

Anyway, that is my two cents, lol. I do hope that you can get in with someone to find out what is causing this pain. There is something wrong and it is going to take some investigation to find out what is amiss with you that is causing the pain. I do hope that you can get some help real soon. Again, welcome aboard the CP forum.
Moderator Chronic Pain Forum

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/12/2011 12:55 AM (GMT -6)   
Hi CountryBear, and welcome. I'm sorry your suffering, more so because no one seems to believe you, but I'm glad you found us.
 
Alot of us here have been through what you describe -- the sceptsism, the looks, the hurtful comments of "it's all in your head", or "you're just faking it", and other worse things none of us like. With all that you've been through you'd think they'd take you a bit more seriously!
You talk about back and abdominal pain. Could there be any corrilation to one of your surgeries in regards to the abdominal pain? As for your back, you're on your feet alot, aren't you? Did they do an MRI of your back? All the test come back clean? Have they tried checking your spinal fluid, or doing nerve blocks?
 
I ask these questions only because I know the hell I went through trying to find someone, /anyone/ who could tell me what was wrong with me, and how to fix it so the pain would go away. Two years and 7 specialists before I had an answer, and it was probably the last thing I ever expected to hear. I have CRPS, an evil disease that affects the nerves. I'm not saying I think that's what you might have, but I think your doctor's are giving up on you. Don't let them! I had doctor's that treated me like I was just an addict looking for my next fix, that I was faking it, that I was wasting their time because all my x-rays and MRI's came back clean. None of them seemed to have any idea where to look, and it seemed alot of them didn't even want to give me the time of day.
But I found one doctor, actually a physicans assistant that I always went back to, and as he followed my case he had a hunch. He kept referring me off to this doctor and that one, I even went to a chiropractor for awhile when they discovered the curve was out in my neck, hoping it was just a pinched nerve or something ... but not even that helped. Along the way though I met a few doctors who really did care, who were just as frustrated as not knowing that was wrong as I was, and just as determined to find the answer. Maybe try a Pain Specialist/Management doctor and see if they have some ideas. I hope you can get some answers soon.
 
In the mean time don't give up, Country Bear. I believe you. I believe your pain is real. You're not alone.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 4/12/2011 5:50 AM (GMT -6)   
I am so glad you found us. Welcome! I to have seen the look of skeptisim in the doctor's eyes and then he said "I don't know why you have pain, you should be walking , you are healed." My husband backed me up but it didn't matter. He didn't want to see me for 3 months and referred me back to my family doctor who does deal in pain management. Thank goodness. Get the written report of your scans and tests. Be persistent. We are here for you. I beleive you. You are not alone.

Soft hugs

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

ohcountrybear
Regular Member


Date Joined Mar 2009
Total Posts : 192
   Posted 4/12/2011 7:00 PM (GMT -6)   
Rhaevin, I have had a couple MRI's. Several years ago I fell off a banister about 3 feet and landed on cement steps, I had a concussion, about a year later I was still having some back and neck issues and they did an MRI which showed some disc putrusions. I did physical therapy and felt much better. about a year ago they did another MRI which didnt really show much of anything, didnt even show the bulging disc. Other than that no other tests were done. However, when they did the emg to check why I wasnt feeling my rectum, part of it was on my lower back and they did say I had poor emg results from my lower back but at the time my surgeon was looking at whether my nerves were responding in my anus. Im even having trouble getting him to refer me out somewhere.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/12/2011 10:57 PM (GMT -6)   
i think everyone in cp forum has suffered from some kind of discrimination due to being cp patient.  my heart goes out to you.  i think yours is one of the worse i have seen. first get rid of your family doctor or whomever you see who continues to not treat you with any respect. find yourself a pain management doctor and i hope that this pm doc will help, if he/she is doing their job you should get the help you so deserve. i am so glad you found this cp forum you will find much comfort knowing others have gone through similar situation. please take measures to regain power over your life, cp sufferers may not live without some pain but we have a right to a good quality of life, remind your doctor of the oath he took when he became a doctor. good luck and stay with us everyone is so helpful it helps to know you are not alone.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 4/13/2011 3:35 AM (GMT -6)   
CountryBear something you mentioned really caught my eye, you said that you had an EMG done I am assuming on your lower back and it showed something. Do you have any idea what? Generally if something shows up, its a pinched or compressed nerve on an EMG study. You really need to get a copy of the written report. I would get that report and if there is something showing up get an appt with your PCP ASAP and get referred out to a neurosurgeon for a consultation. I would do this before I do anything else if this were me.

This dr that is dragging his feet on referring you out is not doing his job. Just so you know, your PCP can ref you to any dr that you want to see, it does not have to be the one taking care of you now. Let the PCP know this guy is yanking you around.

Take care.
Moderator Chronic Pain Forum
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