Chronic Pain

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Chronic Pain

Postby SAMANTHA1018 » Sun Mar 04, 2012 7:27 am

Hello everyone,
I just joined and I'm looking to see if anyone has had or is having any problems that I am having. Back in 2006 & at the age of 26 I found out I had rectal cancer. I have had Chemo, Radiation, & Surgery. I had an ileostomy bag for a couple of months while the located the tumor was removed from healed. In January of 2007 which was bout a month after the ileostomy bag was put in I started having very bad pains in my right lower quadrant. No one had any clue what was causing my pain, the did every test in the book and every test said that there was nothing wrong. So we waited to see if the pain would go away once the ileostomy bag was reversed, but unfortunately the pain did not go away. In the last 5 years I have seen about 6 pain specialists that have tried to help me control the pain. Even with the pain pills I was given I was still having to go to the ER because my the pills I was given didn't always work. Sometimes the pain is so bad that I actually pass out from it. I have had to argue with ER doctors because after so many visits some of them would start saying that I really didn't have pain but my body wanted the iv meds so my brain just told me I had pain or as others said I was drug seeking. It got very upsetting because some, not all, of the doctors would give me a hard time and my parents & I had to argue with dr. I used to have to get notes from my pain doctor stating that I was allowed to receive pain meds from the ER. I beat the cancer which was easy compared to the pain I go through.

I had been told by my recent pain doctor that he thinks it's nerve damage, that someone hit a nerve while putting in my ileostomy bag, since that is the area of my pain. It's a throbbing, squeezing, & stabbing type of pain. I am wondering if anyone else has or had this type of problem after having an ileostomy bag. I'm also looking for any ideas on treatment and what pain medication work for you. I'm currently on Kadian 100mg twice a day & Neurontin 600mg three times a day. I also take MSIR, which is a slow release morphine. Please if anyone has ANY ideas I would love to hear them, because 5 years is long enough of living with pain and not having a life. Looking foward to hearing and chatting with you.

Rectal Caner
26 years old
Diagnosed Aug 2006
Chemo & Radiation 8/06-11/06
Surgery & Ileostomy 12/06
Chemo 1/07-2/07
Ileostomy Take Down 3/07
Still Cancer Free

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Re: Chronic Pain

Postby keepcalmcarryon » Sun Mar 04, 2012 10:13 pm

Try methadone. It's the only narcotic known to specifically treat nerve pain. It was amazing changing from morphine to methadone. My pain scale on morphine was 5 or 6 on an average day. Now it's 1 to 2 most days.
Good luck!
9/07 t3 n2
exc. biop, Xelox, Rad
06/08 NED
03/09 PET-pelvic LN
06/09 rad tx
10/09 exp.lap; can't find LN
05/10 Stage IV, lung nodes
04/10 Xeliri, Avastin
06/10 PET-lung ok
11/ 10 failed surg ln
02/11 Proton tx
7/11 failed clin. Trial
10/11- xelox

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Re: Chronic Pain

Postby SkiFletch » Sun Mar 04, 2012 10:25 pm

Welcome Samantha. Sorry you have to come here on such literally painful circumstances. Assuming you've tried the other common nervous system drugs like Lyrica, I agree that Methadone might work for you. At the risk of throwing her fully under the bus, helen08 has had success using it for neuropathy-induced pain after struggling for years trying other options. Another possible thought, have you tried (or are you able to try in your state) medical marijuana? Just brainstorming. Finally, have you considered seeing another pain specialist for a second opinion?
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Re: Chronic Pain

Postby eitter » Mon Mar 05, 2012 12:49 am

I am Stage III Rectal and have Chronic pain, I also have an ostomy, had 1 year Temp Ileo and then past 5 years Colostomy. My pain is mostly from my rectum area and scar tissue in the rectum from radiation damage, I also have to have kidney stent surgery every three months and have issues with clotting and lymphdema. I see a pain management doctor every month who monitors my pain and meds. I have taken Kadian but I was told that is mostly a bridge. I take oxycodone that works well for me. I am so sorry you are in so much pain!
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy

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Joined: Sun Apr 29, 2012 12:12 pm
Facebook Username: Julie

Re: Chronic Pain

Postby Julieanna » Sun Apr 29, 2012 2:47 pm

Wow. I just found this website. I have been searching for months for someone who still has pain.
I was diagnosed in October 2003. Had chemo and radiation in December 30 days total. March of 2004 I had surgery. They built me a j-pouch. Had the bag on for 3 months. Then reversed in June. Now at the time my husbands testicular came back with a vengeance. In August he fell down and passed away in December of 04. I always have wondered if all the stress so early on had or has something to do with my pain.
The first couple of years, I would have 10-15 bm's a day. With pain. Now it's the opposite. I take fiber but it doesn't help. I may go 8-10 days before a bm. Which I rarely let happen. It takes lactulose to get it going. But I have what I call labor pains. It hurts so bad. I end up in the er sometimes. Try to avoid because they admit for a week. I also throw up when I have bm sometimes. I have been blocked up severe and know the difference now.
Where the bag was I have constant, stabbing, pain. Somedays it is very swollen. My drs tell me I just have to live with it.
Tell that to a pain mgt dr. I had one who said I had drug seeking behavior. I said, have you gone you thru chemo, radiation, surgeries and still have pain! They never have an answer. I know it's not in my head now because I am finding people who have the same symptoms. There are days when I just can't take it. I sit on the toilet, cry and throw up.
I had to quit my job last August after leaving work to go to er.
I have tried food exercise yoga meditating guided imagery....
I am grateful that Samanta posted. It is for me also the lower right area where this nerve damage. Pills to block nerve damage have not worked.
Also, the radiation ruined my female organs. So being with my new husband is impossible. That's a whole other set of pain problems.
Does anyone's area where they reconnected lay flat. I have seen some of my friends stomach's after surgery and there scar looks great and lies flat. Mine as a big bulge. I can't wear shirts that are fitted. It looks awful. There are days when it looks like a roll. I am not overweight. I weigh 118. When I sit for long periods of time or am in a bent over position the stabbing and throbbing are unbearable.
I just wish I knew which pain meds would work. I have a new pain mgt dr. They are great and open to suggestions and ideas. My last dr fired me because I missed appointments. I explained to him on first visit that I never know from day to day what my bowels are going to do. So if I wake up and can't get out of the bathroom I have to call and reschedule. I would call early and leave message with service. I also said I would pay for the visits I miss or missed because its only fair.
Anyway, it's nice to find others with similar issues. We're not alone.

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Re: Chronic Pain

Postby jeanette57 » Sun Apr 29, 2012 11:26 pm

Today saw a super nutritionist, so will have to wait a while when I get through the material. She is an intestines (sp) and mucas lining specialist. There are things you need to move your BM's. My radiation ripped all the lining so I have little protien intake, plus can only get down 500 cals. I am going to drink predigested protiens for a week to heal.

I have to ask the on doc about digestion pills to rebuild the correct flora and to slow down my bms. I will let you know more when I get some where through this material. As for pain, my girlfriend juices the leaves (fresh from the MJ plant) to help her with MS. The medical mj in CO is great for helping people. I was told I will be on fentynal patches after surgery. My kidney doctor has my cancer docs on their toes. She makes a drill srg look like an angel when it comes to protect me..god what a blessing. I wish all my doctors could be like her. calls at home, sends a card, called up on/rad with "you will not use xyz on my patient"/ will see me at the hospital. oh well.

get well.
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Re: Chronic Pain

Postby jerun » Mon Apr 30, 2012 10:29 am

I agree try Methodone. It worked well for me for my horrible nerve pain. It didn't make me feel as loopy as the nortryptiline did and worked much better for the pain.
I hope you find some relief soon.
2/09 dx CRC
3/09 SIGMOID Resect (Stage 1)
2/12 Mets Sacrum/lung .. Rad to sacrum/FOLFOX/Avastin
2/13 PET: new 4.5 x 6 cm tumor in sacral vertebrae
3/13 3 Wks RAD/Sacrum

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