Need Advice

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. Can fibromyalgia start up due to injuries or surgeries. Has anyone had it start up after being hurt. Please any advice is welcome.

Hi Bear,

I had hyperplasia on my shoulder and it was blocking nerves and causing all kind of pain. They didn't remove it, but freed up some areas so I am more comfortable.

I do believe that fibromyalgia can come from something as traumatic as surgery and I agree that you should find a doctor that is in your corner. Look for ones that believe in fibromyalgia.

You sure do have a lot on your plate, but now you are with friends who understand and that will make it a lot easier for you. I am sure that you will get more advice soon.

Take care, enjoy your day and I hope that it is painfree.

Hugs, Karen

Hi, Bear, and welcome!  I'm glad you popped over here with your concerns.  I have had many of the same problems as you have.  I have Crohn's disease and had to have my colon and rectum removed to save my life.  I also had the rectovaginal fistula, too.  Fun, huh?  I have a permanent ileostomy now and I also have a huge inoperable peristomal hernia.  So, I do understand what you are going through.

 

After your surgery, did you do any stretching?  They told me to do that to stretch the incision otherwise I could have more pain.  So, I would stand up straight and lean back a bit.  You are all healed now but you might need to stretch that scar tissue with some stretching exercises...perhaps even physical therapy.  You also could have some adhesions causing some problems.  I think I do and I massage my abdomen to try to stretch things in there.  Could you possibly be having a reaction to the mesh?  They didn't use mesh on me so I'm not help there but it might be worth checking out.  I'm not a doctor but these are things I would look into if I were you.  Always talk to  your doctor first.

 

Then again, you could have something like fibro on top of things.  Our backs are notoriously sore.  I don't have abdominal discomfort from fibro but I can have it with all the work that was done.  I will feel pressure and be very uncomfortable but I have found simethicone helps a heap!  Walking helps me, too.  If it feels like a partial bowel obstruction (I've been hospitalized six times with this) then I sit, drink hot tea, and try to relax.  It usually passes.  I also am careful as to what I eat.  I do know what gives me problems and I stay away from those foods.

 

You are not making up your pain.  You don't want to feel like this...no one does.  I do use ibuprofen but I did get an ulcer one time.  But no one told me to take it with food so it was very harsh on my stomach.  I was told never to take NSAIDs again.  I tried but got to the point I couldn't get out of a chair, let alone function!  It became a quality of life issue for me so I talked to my doctor about it.  He put me on Prilosec because it will protect your stomach against ulcers 70% of the time.  Plus I ALWAYS take ibuprofen with food now and I haven't had a problem since, and that was about 10 years ago!  You might ask your doctor about this, since they aren't willing to help you with Tramadol.  

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Check out the link about Symptoms and A Thorough Explanation of Fibromyalgia.  See if that sounds like what you are having happen to you.  

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Let us know what you find out.  Okay?  We really do care about you.  I hope to hear more from you soon.

 

Sherrine 

Thank you for all the responses, sometimes it feels better just to talk.

Sherrine, Im glad to have a fellow ostomate as well, the pain in the abdomin isnt constant but when it its there its strong. No one ever told me to stretch but that makes sense, I will say Im like 4 11, and if I go to reach for something I get a strong pain. I do massage my abdomin alot trying to make it feel better. I started back at the gym, I can do the treadmill just fine, I can swim, but I got on the eclipse and after about 5 mins I got a really sharp pain that dropped me to my knees. The managers insisted on calling the squad but then they let me call my husband to come get me, I didnt go to the hospital but I hurt the entire night. I too get blockages very easy, I almost wish they would have done an ileo on me, I mean really I only have two inches of my transverse, right below the cecum. But my back spasms so bad and aches and hurts. The spasms go straight through my abdomin. The spasms have been so back that it makes my bladder spasm and I lose my urine, I dont even have time to get to the restroom. I have been at work dealing with patients and get a strong spasm and I went myself, so not only do I worry about my bag leaking there I have to worry about wetting myself too. I sound like Im whining, I really do have a good quality life, and Im alive right so I shouldnt complain about what I do have.

GSD...I have a girlfriend with Hep C and yes she has been very sick

Hugs to all of you for your courage of dealing with all this

Hi,
I had a traumatic surgery to my spinal cord and yes, fibro is believed by some to be caused by central sensitization, where your actual chemistry is altered and can lead to your nerves not interpreting pain correctly. If that is true Fibro, I don't know. I don't think anyone does at this point. That is what I was diagnosed with this week after a 6 month decline before, during and after my surgery. But I have had pain issues from not being diagnosed with my "cord condition" (tethered cord syndrome) for 3 years prior.

I can see you are going through a lot of things, and it's so hard to see the light at the end of the tunnel. I have had major issues accepting that I will need to be on medication to live a semi normal life.

My dad has Stage 4 colorectal cancer, with a temp. bag, and he, like you works full time. I can't even imagine what a strong person you must be.
Please don't feel like a drug addict. If you take the medication as prescribed you shouldn't have any issues, and if you need to switch please speak with your doctor. Chronic pain can actually cause fatigue, so controlling it is important. If you have constant pain I suggest speaking to your doctor about an extended release tablet, that way you are not taking something for "acute" pain. I have been on pain medication off and on for 4 years. In the beginning I was put on morphine and diludid (vicoin/oxy didn't work) and after I had a lot of nerve blocks (before ultimate surgery dx) I got off the medication. I was not "addicted", They just give you a plan to slowly step down, and I was on pretty high doses. The same thing continued, until i was diagnosed and couldn't do anything injection wise in that area.

If you ever need to talk, please e-mail me. I'm around your age (34) and would love to help if I can :)
Please take care of yourself and remember pain medication does not equal addiction, chronic pain leads to fatigue.