Has anyone had the pain last this long?

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TMac52
TMac52 Member Posts: 352
edited March 2014 in Colorectal Cancer #1
APR w/ perm colostomy surgery on Sept 22nd (4 months ago) Still in substantial amount of butt pain however the stiffness in my hips,lower back, thighs, groin and hamstrings is getting to be unbearable. Really tough to tie my boots.
I get up in the morning feeling like im 90 yrs old. Drive to work in Boston (1-15 min drive)when I get out of the car I can hardly walk. I loosen up the more I walk but that wears me out quickly as im now doing my mop-up chemo of 5fu and oxy. Is it the chemo or the healing from surgery???? I finally sent an email This morning to my Nurse Practitioner that has handled my case from the surgery aspect To see if this is normal. Is there anyone out there that can shed some light on my situation? I appreciate any feedback.
Tom
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  • khl8
    khl8 Member Posts: 807
    #2
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    i had my last 5fu treatment
    i had my last 5fu treatment in August of 09, I still have the stiffness and the body aches, and I too look and feel like a 90 year old when I have been imobile for awhile. I also suffer from Neuropathy in my feet, it used to be in my hands too but that has been getting better.

    Kathy
  • coloCan
    coloCan Member Posts: 1,944 Member
    #3
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    At this point in my experience, I was still hurting too
    Had mine 9/2/09 and at this point in my experience akin to yours (Jan 10 to your Jan 11)I was still hurting from surgery and getting creamed from FOLFOX, each dose hitting me heavier than the previous one. Pain from op subsided slower than others here experienced and I used Fentanyl pain patch towards the end; had relied on percocets....Had difficulty walking, sitting, moving from one position to another; still have difficulty bending over, especially tieing left shoe, side of stoma; could not drive as could not sit for too long......As chemo neared its end, pain from colostomy eased tremendously......It does get better; for me, not as soon as I had hoped but life did get back to living .......steve
  • TMac52
    TMac52 Member Posts: 352
    #4
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    coloCan said:

    At this point in my experience, I was still hurting too
    Had mine 9/2/09 and at this point in my experience akin to yours (Jan 10 to your Jan 11)I was still hurting from surgery and getting creamed from FOLFOX, each dose hitting me heavier than the previous one. Pain from op subsided slower than others here experienced and I used Fentanyl pain patch towards the end; had relied on percocets....Had difficulty walking, sitting, moving from one position to another; still have difficulty bending over, especially tieing left shoe, side of stoma; could not drive as could not sit for too long......As chemo neared its end, pain from colostomy eased tremendously......It does get better; for me, not as soon as I had hoped but life did get back to living .......steve

    Thank You!
    Thank you Kathy and Steve for your feedback so I guess the chemo is just adding to the stiffness that I already felt from surgery?? It nice to know that I will get better eventually.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
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    Yes
    My surgery was in March, 2009 and my relief really never came until 1 1/2 years later. Because of the extensive radiation, my bottom was burned pretty bad. My doctor told me it would take that long for the pain to get to a level where it wouldn't really bother me all the time. Never sat for over a year for any length of time. Hope you feel better soon. Oh and the chemo - that can make you feel bad all over, including your hair.

    Kim
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #6
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    PT
    Hi Tom
    I got my doctor to refer me to physical therapy, and learned very specific low impact exercise techniques to help with my problem areas, and also they taught me scar massage technique to keep the scar tissue supple which decreased the likelihood of hernia and tearing of the weaker scar tissue. This helped me a lot. Give it a try.
    Pam
  • Kerry S
    Kerry S Member Posts: 606 Member
    #7
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    I bounce back from surgery real fast
    Tom

    I bounce back from surgery real fast. Like I am always up to smoke the next day when in the hospital after surgery. My docs always are amazed at how fast my old body heals. Hell, I will be 68 soon. Never had any surgery before this crap hit me. I must have a lot of healing stuff left in me. The other thing you must remember is they put the fu after the 5 for a reason.

    Wish you did not live so damn far away. I could use some help cutting firewood. Going to get into that next week. I am behind by 2 cords. That is 8 or 9 Kubota loads.

    My advice would be to keep moving and take good old percocet.

    Hang in there no mater what, it always gets better with time

    Kerry
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #8
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    Hi Tom
    Wondering if you had the radiation/chemo? I was told the radiation can cause pain to all of those areas. I have painful and stiff hips, legs, lower back and all the areas you describes also. It was during that radiation treatment that I felt my very worst and almost told them to stop.

    plh to you, Gail
  • TMac52
    TMac52 Member Posts: 352
    #9
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    Annabelle41415 said:

    Yes
    My surgery was in March, 2009 and my relief really never came until 1 1/2 years later. Because of the extensive radiation, my bottom was burned pretty bad. My doctor told me it would take that long for the pain to get to a level where it wouldn't really bother me all the time. Never sat for over a year for any length of time. Hope you feel better soon. Oh and the chemo - that can make you feel bad all over, including your hair.

    Kim

    Thanks Kim The pre op
    Thanks Kim The pre op radiation did a number on me as well but I thought I would be a little better by now.
  • TMac52
    TMac52 Member Posts: 352
    #10
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    PamPam2 said:

    PT
    Hi Tom
    I got my doctor to refer me to physical therapy, and learned very specific low impact exercise techniques to help with my problem areas, and also they taught me scar massage technique to keep the scar tissue supple which decreased the likelihood of hernia and tearing of the weaker scar tissue. This helped me a lot. Give it a try.
    Pam

    Hi Pam funny you should
    Hi Pam funny you should mention PT I sent my pre op nurse a request for that today.
  • TMac52
    TMac52 Member Posts: 352
    #11
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    Kerry S said:

    I bounce back from surgery real fast
    Tom

    I bounce back from surgery real fast. Like I am always up to smoke the next day when in the hospital after surgery. My docs always are amazed at how fast my old body heals. Hell, I will be 68 soon. Never had any surgery before this crap hit me. I must have a lot of healing stuff left in me. The other thing you must remember is they put the fu after the 5 for a reason.

    Wish you did not live so damn far away. I could use some help cutting firewood. Going to get into that next week. I am behind by 2 cords. That is 8 or 9 Kubota loads.

    My advice would be to keep moving and take good old percocet.

    Hang in there no mater what, it always gets better with time

    Kerry

    Kerry I forgot when did u
    Kerry I forgot when did u have your surgery? I am much like u I have to move or I'll go krazy but I am so damn stiff and hate taking those perc's too often.
  • TMac52
    TMac52 Member Posts: 352
    #12
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    plh4gail said:

    Hi Tom
    Wondering if you had the radiation/chemo? I was told the radiation can cause pain to all of those areas. I have painful and stiff hips, legs, lower back and all the areas you describes also. It was during that radiation treatment that I felt my very worst and almost told them to stop.

    plh to you, Gail

    Hi Gail,
    I had the pre-op chemo/rad also that was the absolute worst thing I have endured. I was scheduled to do 28 rad treatments I was so badly burned they stopped at 24. I could hardly walk after. They said it affected me worst than most but the more people I talk to on here the more I realize It affects alot of people that way. I was supposed to have sugery 8 weeks after radiation but had to wait 13 weeks before I was healed enough.

    I have a few friends that had prostate cancer and the radiation they got 30-40 treatments didnt do a fraction of the damage that rectal does.

    So I guess the cumulative affect of everything is causing the stiffness, Like kerry says we got to just keep moving. I have to get a treadmill because walking out in the cold after chemo treatments isnt workin for me. too damn cold in Boston.
  • Kerry S
    Kerry S Member Posts: 606 Member
    #13
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    TMac52 said:

    Kerry I forgot when did u
    Kerry I forgot when did u have your surgery? I am much like u I have to move or I'll go krazy but I am so damn stiff and hate taking those perc's too often.

    3rd of last month
    Tom

    My last surgery was the 3rd of last month. Last chemo/rad was 8/08

    The radiation burns the nerves big time. When mixed with the freaking 5FU you will get pain. This is pain you can work out of you. I walked with a limp for 2 months. My rad onc called it nerve damage.

    Kerry
  • maglets
    maglets Member Posts: 2,576 Member
    #14
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    TMac52 said:

    Hi Gail,
    I had the pre-op chemo/rad also that was the absolute worst thing I have endured. I was scheduled to do 28 rad treatments I was so badly burned they stopped at 24. I could hardly walk after. They said it affected me worst than most but the more people I talk to on here the more I realize It affects alot of people that way. I was supposed to have sugery 8 weeks after radiation but had to wait 13 weeks before I was healed enough.

    I have a few friends that had prostate cancer and the radiation they got 30-40 treatments didnt do a fraction of the damage that rectal does.

    So I guess the cumulative affect of everything is causing the stiffness, Like kerry says we got to just keep moving. I have to get a treadmill because walking out in the cold after chemo treatments isnt workin for me. too damn cold in Boston.

    Tom
    ahhhh tom it breaks my heart to hear you are such pain....ain't it just the way

    I have never had radiation but tonight as I sit here....year and half out of oxy and 2 years out of second liver resection....I think gosh golly....I hurt

    neck hurts, head hurts teeth hurt hips hurt entire right side hurts...blah blah

    I cannot do pain killers....the perc kills the stomach and constipates....so sometimes I just go to bed and try to drift....think about a beach.....hello **** and Kath....most nights it takes 3 or 4 hours to get through the pain and drift away to sleep....

    wow aren't we a fun group....point being yes it all hurts and does not stop hurting and I wish you feeling better....I wish we were all feeling better.....

    you just come to Canada tonight my dear boy....it is tooooo damned cold...

    sincere hugs and wishes

    mags
  • taraHK
    taraHK Member Posts: 1,952 Member
    #15
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    so sorry
    So sorry to hear this. I had similar (presurgical radiation followed by APR). The effects of the radiation are the most painful thing I experienced in my 8 years since diagnosis. My recovery from the surgery seems was a little faster, easier than you describe. I did a lot of walking, which ??might have helped. (Of course memory dims a bit) But also my post-surgical chemo didn't include folfox (too many years ago!) so I guess that could be a contributing factor. I've been on folfox since. Didn't get leg/hip stiffness -- just some peripheral neuropathy (hands and feet) which eventually all went away. But we are all different....

    You are doing the right thing by contacting the nurse practitioner. If you are experiencing this much pain at this stage, you should certainly talk to someone about it -- they need to be aware, and you need some relief.

    One other thought about the stiffness -- walking (treadmill) may help but how about some stretching -- even yoga exercises. Maybe the physio will be able to give some guidance on this.

    Good luck!

    Tara
  • maglets
    maglets Member Posts: 2,576 Member
    #16
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    taraHK said:

    so sorry
    So sorry to hear this. I had similar (presurgical radiation followed by APR). The effects of the radiation are the most painful thing I experienced in my 8 years since diagnosis. My recovery from the surgery seems was a little faster, easier than you describe. I did a lot of walking, which ??might have helped. (Of course memory dims a bit) But also my post-surgical chemo didn't include folfox (too many years ago!) so I guess that could be a contributing factor. I've been on folfox since. Didn't get leg/hip stiffness -- just some peripheral neuropathy (hands and feet) which eventually all went away. But we are all different....

    You are doing the right thing by contacting the nurse practitioner. If you are experiencing this much pain at this stage, you should certainly talk to someone about it -- they need to be aware, and you need some relief.

    One other thought about the stiffness -- walking (treadmill) may help but how about some stretching -- even yoga exercises. Maybe the physio will be able to give some guidance on this.

    Good luck!

    Tara

    tara
    good idea Tara.....when I do yoga...that I love.....it feels like stretching an old tight elastic band....Yes Tom I think stretching could help

    mags
  • TMac52
    TMac52 Member Posts: 352
    #17
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    maglets said:

    tara
    good idea Tara.....when I do yoga...that I love.....it feels like stretching an old tight elastic band....Yes Tom I think stretching could help

    mags

    Sretch ouch!!
    When I stretch I feel like I am going to actually rip my Butt open. Just tieing my shoes is tough. I feel the stretch when I bend and its not a good feeling. Do you all have your butts sewed up like me??Not Easy to stretch.
  • TMac52
    TMac52 Member Posts: 352
    #18
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    maglets said:

    Tom
    ahhhh tom it breaks my heart to hear you are such pain....ain't it just the way

    I have never had radiation but tonight as I sit here....year and half out of oxy and 2 years out of second liver resection....I think gosh golly....I hurt

    neck hurts, head hurts teeth hurt hips hurt entire right side hurts...blah blah

    I cannot do pain killers....the perc kills the stomach and constipates....so sometimes I just go to bed and try to drift....think about a beach.....hello **** and Kath....most nights it takes 3 or 4 hours to get through the pain and drift away to sleep....

    wow aren't we a fun group....point being yes it all hurts and does not stop hurting and I wish you feeling better....I wish we were all feeling better.....

    you just come to Canada tonight my dear boy....it is tooooo damned cold...

    sincere hugs and wishes

    mags

    Hi Mags.
    I dont think I could take Canada on this chemo......Boston is cold enough for me.
    What part Mags? I have a hunting trip to Alberta planned for Oct 2011 next season.
    My Grand parents are from PEI never been there im told it's beautiful.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #19
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    TMac
    I'm on FOLFOX (FU and oxi) and I can tell you I have the same syptoms. I feel like I've been hit by a truck. It feels like kind of what the flu does to my body. The aches and pains are heck. I usually rest then do some walking when I'm a couple days after infusion. It seems to help me get back up to par. I totally relate to the feeling like you're 90 years old only I usually say 180 years old. It slowly goes away for me (the aches) but I'm left with the fatigue long after the aches are gone. I know it's chemo for me because I had 5 months between my surgery and starting chemo and I was recuperated from surgery without the aches and pains.

    I don't know if you had any radiation. I do know that that will really set off the aches and pains.
  • TMac52
    TMac52 Member Posts: 352
    #20
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    Lori-S said:

    TMac
    I'm on FOLFOX (FU and oxi) and I can tell you I have the same syptoms. I feel like I've been hit by a truck. It feels like kind of what the flu does to my body. The aches and pains are heck. I usually rest then do some walking when I'm a couple days after infusion. It seems to help me get back up to par. I totally relate to the feeling like you're 90 years old only I usually say 180 years old. It slowly goes away for me (the aches) but I'm left with the fatigue long after the aches are gone. I know it's chemo for me because I had 5 months between my surgery and starting chemo and I was recuperated from surgery without the aches and pains.

    I don't know if you had any radiation. I do know that that will really set off the aches and pains.

    Thanks Lori
    It all seems to point to te new chemo treatments affecting previously damaged muscle and tissue from radiation. Didnt know that was going to happen. When I saw my onc on Monday I asked him if it could be the chemo and he said no???? Go figure right??
    Why should it be any different everything I have been through since dx has been a surprise my team hasnt told me half of what I was in for. And they say Boston has some of the best hospitals/doctors in the world.
    I learn a hell of of lot more on here with you guys than with my own cancer team.
    Thanks Lori :)
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #21
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    TMac52 said:

    Hi Mags.
    I dont think I could take Canada on this chemo......Boston is cold enough for me.
    What part Mags? I have a hunting trip to Alberta planned for Oct 2011 next season.
    My Grand parents are from PEI never been there im told it's beautiful.

    PEI is absolutely gorgeous!

    PEI is absolutely gorgeous!

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