No Diag. As of yet

Karmar
Karmar Member Posts: 42
edited March 2014 in Colorectal Cancer #1
Hi all,
I am very new to the site. I have not gotton results back from my biopsy as of yet. Have been fighting extreme stomach pain with anemia for over a month. Having a colonoscopy set up in the coming months. And surgery to remove female organs. My Father passed away from colon cancer as well as 2 of his sisters and now my cousin at 42 has ben diagnosed. My sister and son have chrons dieses. I know it is a battle i can win but am so furstrated at not knowing exactly what is wrong. They have me on pain meds,Iron and a protonix. None of witch is helping much. I fight everyday to do mundane chores. ANd cry alot because of the frustration.I read alot of the post and each one gives me hope and Ideas. Thank you for letting me vent
Karen

Comments

  • Sandi1
    Sandi1 Member Posts: 277
    #2
    Hello, you are not alone
    Hello Karen,

    My name is Sandi, I am caregiver to my husband - he is stage 4 colon cancer with mets to the liver and lungs. There are many people on this discussion panel that will beable to answer any and all questions that you might have. I would never assume to know what you are going through, I do know that you are probably feeling very much alone right now even though you may have lots of family around. The waiting is the hardest part, when my husband was diagnosed on 8/18/08 it was a full two weeks before we got into see the surgeon and then another week before we saw the oncologist - those were the worst 3 weeks of my life. Having watched my father, 2 of my uncles and then my mother die of cancer, I immediately thought the worst - but cancer research has come so far in the last few years that I was and still am continually amazed at what they can accomplish and the medicines they have to offer to control and/or kill the cancer cells. I would suggest that if the meds they gave you to control your pain is not working that you go back to the doctor and tell them - it may faciliate them to move you colonscopy up.

    From the first day that I joined this discussion panel, I have been blessed with kind thoughts and prayers from everyone on here. All the advise that was given to me was right on the money. It took me a while to just trust what I was being told and to just do what they were saying. It all worked out. My husband has had his surgery, and has completed 3 of 12 rounds of chemo. He is tolerating it well, just the normal stuff - his worse side effect is fatigue but that only lasts 2 days and then he is back to normal.

    That's all I really have to say about the situation other than - you are your own advocate - speak up - the doctors are not mind readers, they do have meds to help just about everything and there is no reason for you to be in any kind of pain. Email me if you want to talk more, I am thinking and praying for you that things are not as bad and you think they are.
    Sandi
  • Karmar
    Karmar Member Posts: 42
    #3
    Sandi1 said:

    Hello, you are not alone
    Hello Karen,

    My name is Sandi, I am caregiver to my husband - he is stage 4 colon cancer with mets to the liver and lungs. There are many people on this discussion panel that will beable to answer any and all questions that you might have. I would never assume to know what you are going through, I do know that you are probably feeling very much alone right now even though you may have lots of family around. The waiting is the hardest part, when my husband was diagnosed on 8/18/08 it was a full two weeks before we got into see the surgeon and then another week before we saw the oncologist - those were the worst 3 weeks of my life. Having watched my father, 2 of my uncles and then my mother die of cancer, I immediately thought the worst - but cancer research has come so far in the last few years that I was and still am continually amazed at what they can accomplish and the medicines they have to offer to control and/or kill the cancer cells. I would suggest that if the meds they gave you to control your pain is not working that you go back to the doctor and tell them - it may faciliate them to move you colonscopy up.

    From the first day that I joined this discussion panel, I have been blessed with kind thoughts and prayers from everyone on here. All the advise that was given to me was right on the money. It took me a while to just trust what I was being told and to just do what they were saying. It all worked out. My husband has had his surgery, and has completed 3 of 12 rounds of chemo. He is tolerating it well, just the normal stuff - his worse side effect is fatigue but that only lasts 2 days and then he is back to normal.

    That's all I really have to say about the situation other than - you are your own advocate - speak up - the doctors are not mind readers, they do have meds to help just about everything and there is no reason for you to be in any kind of pain. Email me if you want to talk more, I am thinking and praying for you that things are not as bad and you think they are.
    Sandi

    Thank You
    Dear Sandi,

    Three weeks would be great but i am one month 3 so far. Stomach Biopseys show chronic Inflamation. Thats wonderfull and something I can live with.

    Saw GP today ad he is sure i have 3 things going on right now. One is arthritis acting up severley, My upcoming Hystroectami,and something with the bowels witch I will be going to see the GAstro doc the 4th. My only concern at this point is becoming addicted to the Pain meds. I hate pills but in order to be able to even walk in my home i need them. So he is helping a great deal. Part of me wishes it is Colon cancer because I know it will get better. The not knowing what is causing this is the hardest part. There have been times I have thought they wont find out untill I am dead.But I ahve great faith. ANd know someday I will feel like my old self,and be able to do all the things I took for granted.
    Again thanks for writting
    Karen
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #4
    Karmar said:

    Thank You
    Dear Sandi,

    Three weeks would be great but i am one month 3 so far. Stomach Biopseys show chronic Inflamation. Thats wonderfull and something I can live with.

    Saw GP today ad he is sure i have 3 things going on right now. One is arthritis acting up severley, My upcoming Hystroectami,and something with the bowels witch I will be going to see the GAstro doc the 4th. My only concern at this point is becoming addicted to the Pain meds. I hate pills but in order to be able to even walk in my home i need them. So he is helping a great deal. Part of me wishes it is Colon cancer because I know it will get better. The not knowing what is causing this is the hardest part. There have been times I have thought they wont find out untill I am dead.But I ahve great faith. ANd know someday I will feel like my old self,and be able to do all the things I took for granted.
    Again thanks for writting
    Karen

    Hey Karen
    No, no, no, you don't really wish that it was colon cancer... trust me from one who has been there and this isn't something you want to wish on yourself or anyone else. BUT if it turns out that it is, then yes there are lots of treatments, options, etc. Waiting is probably the worst thing and if it is cancer, you will be in for oodles of waiting... waiting to see when to start a treatment, waiting to see what that treatment is, waiting for results... it's a game of waiting.

    I'm sorry you are in so much pain but if there are any pain meds out there that will help manage that pain, then take them. And don't worry about getting addicted to them... when you need them, that is what they are there for and what their purpose is. I think the risk of you getting addicted to them is very, very low... and once they have fixed your problem(s), then the need for the pain meds won't be there.

    I was on Oxycontin, Dilodaud, Tylenol #3 with codiene and another one that has slipped my mind. In other words, I was pumped up to the gills with pain meds, 3 of which were considered highly addictive. My GP was concerned that I would become addicted to the Oxycontin so would have to add "addiction withdrawal" to my problems and he didn't want me to get into that. I knew I was not popping the pills just for the fun of it and although I needed them and needed them up to 3 times or more/day, I knew I was not addicted. Sure enough, once the surgery happened, and I was over that pain, I could stop them and I didn't even miss them. I was concerned that I would have to wean myself off of them... but nope, there was no pain, and I didn't need the pain meds. But don't try and take them away from me when I DO have pain :)

    So use whatever he prescribes and use it as it has been directed. Right now, while you are in the waiting pattern, you do need to have that pain under control!

    Hugggggs,

    Cheryl
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    CherylHutch said:

    Hey Karen
    No, no, no, you don't really wish that it was colon cancer... trust me from one who has been there and this isn't something you want to wish on yourself or anyone else. BUT if it turns out that it is, then yes there are lots of treatments, options, etc. Waiting is probably the worst thing and if it is cancer, you will be in for oodles of waiting... waiting to see when to start a treatment, waiting to see what that treatment is, waiting for results... it's a game of waiting.

    I'm sorry you are in so much pain but if there are any pain meds out there that will help manage that pain, then take them. And don't worry about getting addicted to them... when you need them, that is what they are there for and what their purpose is. I think the risk of you getting addicted to them is very, very low... and once they have fixed your problem(s), then the need for the pain meds won't be there.

    I was on Oxycontin, Dilodaud, Tylenol #3 with codiene and another one that has slipped my mind. In other words, I was pumped up to the gills with pain meds, 3 of which were considered highly addictive. My GP was concerned that I would become addicted to the Oxycontin so would have to add "addiction withdrawal" to my problems and he didn't want me to get into that. I knew I was not popping the pills just for the fun of it and although I needed them and needed them up to 3 times or more/day, I knew I was not addicted. Sure enough, once the surgery happened, and I was over that pain, I could stop them and I didn't even miss them. I was concerned that I would have to wean myself off of them... but nope, there was no pain, and I didn't need the pain meds. But don't try and take them away from me when I DO have pain :)

    So use whatever he prescribes and use it as it has been directed. Right now, while you are in the waiting pattern, you do need to have that pain under control!

    Hugggggs,

    Cheryl

    I agree with Cheryl....don't be a pain hero!
    I don't think anyone would really want cancer, but I also know that it's terrible not to have an answer.

    I took Vicodin for the pain. I had a tumor pressing against my tailbone. At first, frightened that I would become an addict, I only took Vicodin at night so that I could sleep. During the day, I stuck with Tylenol...and the pain that didn't go away. Finally, I said "Addiction be hanged, I can't function!" and switched to Vicodin all the time.

    My experience was the same as Cheryl's. When the pain went, so did the painkillers. No problem. I have had 9 subsequent bowel obstructions...I take the pain meds for this...pain is sort of like 'pulling your lower lip up over your head' to quote a famous commedian...rofl!

    Hang in there!

    BIG hugs, Kathi
  • Kanort
    Kanort Member Posts: 1,272 Member
    #6
    Answers!
    Hi Karen,

    I hope you get answers soon to your situation. Waiting is frustrating. Please keep us posted on your biopsy results.

    Hugs,

    Kay
  • Karmar
    Karmar Member Posts: 42
    #7
    Kanort said:

    Answers!
    Hi Karen,

    I hope you get answers soon to your situation. Waiting is frustrating. Please keep us posted on your biopsy results.

    Hugs,

    Kay

    Some answeres
    Thanks everyone. I keep telling myself that I need these pills to be able to do mundane tasks. Better than just sitting and doing nothing. I sawe my GP yesterday and told him my concern. He is worried on what may be wrong. So if nothing gets better by the 11th he is going for a MRI. As far as it being cancer I come from 7 brothers and sisters. We know our history. Many of us have already had pre cancerous polyps removed. The C word does not scare me. The hardest part is waiting. And The saddness. I got excitedcause I was able to put my tree up. Christmas to us is a 100 hours of decorating inside and 50 hours outside. We do it Big. And by thanksgiving I have it all done. This year I am setting the goal of December 15th. And if its not done oh well. My tree is up and almost finished with the lights. And this time next year I will have my life back.
    Any advice on how to cope with the blues? I always get tear an hour after my neds.
    Karen
  • Madre
    Madre Member Posts: 123
    #8
    I wasn't symptomatic - stage 3
    Karen, I wasn't having any major problems other than gas and bloating that got better with increase in fiber. I had a routine physical and I was iron deficient and low blood counts (which I had a history of since my hysterctomy in 2004). All the test at the GI office came back negative - couldn't find the bleeding or cause. They did a CT of my abdomin and found 1 1/2 inch tumor in my colon. Quickly did a colonoscopy, confirmed tumor and cancer and surgery a week later. I just finished 6 months of chemo and have gotten back to work. Good luck to you and don't stop asking questions and demanding answers. The sooner you find the problem the sooner you can have it fixed. Good luck to you.
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #9
    Fear of the Unknown
    Hi Karen. Welcome. We all know how frustrating it is not to have answers and sometimes the fear of the unknown is greater than the fear of the known. Hopefully, you will have answers soon and can formulate a plan of action if you need one. God Bless . Keep us posted.
    Diane
  • pamness
    pamness Member Posts: 524 Member
    #10
    Don't worry about the pain meds
    There is a lot of research that shows how the body reacts to pain medication when you are in pain versus the "high" people get who them for other reasons. I have been on pain meds a few times during surgery and bowel obstructions. Stopping them when the pain goes away, has never been a a problem.

    I hope that when you find out what is really going on things will improve significantly.

    Pam
  • Karmar
    Karmar Member Posts: 42
    #11
    pamness said:

    Don't worry about the pain meds
    There is a lot of research that shows how the body reacts to pain medication when you are in pain versus the "high" people get who them for other reasons. I have been on pain meds a few times during surgery and bowel obstructions. Stopping them when the pain goes away, has never been a a problem.

    I hope that when you find out what is really going on things will improve significantly.

    Pam

    Thank you
    I enjoy reading all the comments. I am taking the pain meds and today is such a bad day. My kids call and I am so sick that I have not called them back yet. All I want to do is cry. On a lighter note I am able to do a few projects for my annual Kids christmas party for the post. Every year for the last 7 years i have done it all. This year I had to delegate and am even unable to shop for the gifts. That was as hard as giving up my part time job. Its hard to work when you cant even get out of a chair without help.

    Heres another question-I am going to see a gyno on the first to set a date for a hysterectomy- But all of a sudden I am scared and do not want to go through it till they find out what is wrong-We know through cat scans that it has nothing to do with the fibroids that I ahve all my life-So the surgery was just a selfish thing to make my life a little easier once a month.But today I am dreding it afraid for the first time ever in my life-I am not new to surgery I have had6 in my life time. But not knowing what is causing the pain in my stomach and back-Am I wrong to want to wait till we figure out what else is going on inside?
    Or am I just being paranoid?
    Karen
  • KathiM
    KathiM Member Posts: 8,028 Member
    #12
    Karmar said:

    Thank you
    I enjoy reading all the comments. I am taking the pain meds and today is such a bad day. My kids call and I am so sick that I have not called them back yet. All I want to do is cry. On a lighter note I am able to do a few projects for my annual Kids christmas party for the post. Every year for the last 7 years i have done it all. This year I had to delegate and am even unable to shop for the gifts. That was as hard as giving up my part time job. Its hard to work when you cant even get out of a chair without help.

    Heres another question-I am going to see a gyno on the first to set a date for a hysterectomy- But all of a sudden I am scared and do not want to go through it till they find out what is wrong-We know through cat scans that it has nothing to do with the fibroids that I ahve all my life-So the surgery was just a selfish thing to make my life a little easier once a month.But today I am dreding it afraid for the first time ever in my life-I am not new to surgery I have had6 in my life time. But not knowing what is causing the pain in my stomach and back-Am I wrong to want to wait till we figure out what else is going on inside?
    Or am I just being paranoid?
    Karen

    I was the same...even before the beast...
    At 32, I was finished with childbearing, and couldn't see why I needed to have a monthly time of discomfort. Naturally, my GYN wouldn't give me what I wanted, a hysterectomy, mainly because he wouldn't get paid for it...lol!

    When I was diagnosed with the rectal cancer (17 years later), my surgeon asked if I would be terribly upset about also losing my 'female parts' as well as my colon parts. My response (which made him laugh, BTW) was 'Where have you BEEN all of my life?????'.

    My point is, if you are not comfortable with it, maybe you should talk to your GYN. Ask what you just asked us. "In for a penny, in for a pound", there WILL be some side effects to this procedure...and they were easier for me to take because I was OK with the removal.

    I am sending warm, comforting hugs to you....They WILL find what is wrong...I HATE that you have to deal with the uncertainty as well as the pain!

    Hugs, Kathi

    Are they doing bone scans? Could you have a misaligned backbone? Bone pain (I had it with my tumor) is the WORST!!! Also, will they let you go to an accupuncturist? Many have found relief with this. Or a chiropractor?
  • Karmar
    Karmar Member Posts: 42
    #13
    KathiM said:

    I was the same...even before the beast...
    At 32, I was finished with childbearing, and couldn't see why I needed to have a monthly time of discomfort. Naturally, my GYN wouldn't give me what I wanted, a hysterectomy, mainly because he wouldn't get paid for it...lol!

    When I was diagnosed with the rectal cancer (17 years later), my surgeon asked if I would be terribly upset about also losing my 'female parts' as well as my colon parts. My response (which made him laugh, BTW) was 'Where have you BEEN all of my life?????'.

    My point is, if you are not comfortable with it, maybe you should talk to your GYN. Ask what you just asked us. "In for a penny, in for a pound", there WILL be some side effects to this procedure...and they were easier for me to take because I was OK with the removal.

    I am sending warm, comforting hugs to you....They WILL find what is wrong...I HATE that you have to deal with the uncertainty as well as the pain!

    Hugs, Kathi

    Are they doing bone scans? Could you have a misaligned backbone? Bone pain (I had it with my tumor) is the WORST!!! Also, will they let you go to an accupuncturist? Many have found relief with this. Or a chiropractor?

    See the doc monday
    Dear KAthiM

    I see the GYN Monday to discuss all this with him. No bone scan as of yet-Doc GP did bring up the fact that the pain in my leg may be a pinched nerve and is going to set up a mri-since cat scan only showed an enlrged spleen. Gastro doc called me today to let me know no cnacer in esophagas or stomach-but chronic Inflamation so I am and have been on protonix twice daily-dont help the nause or diareah tho-Lets me eat at night tho-He called back a second time to tell me I need a colomoscopy and told them I am coming in the 4th. My thoughts are now that it is very possable that it may be chrohns even tho I am way past the age for a flair up-Looking back with all my diegestive problems-and having a sister and son with it-It seems to be making sense to me right now-The colonoscopy will show that. Just a waiting game at this time.As far as seeing an accupuncter or Chrio-I dont have back pain per say-It is mainly in the right kidney that shoots down the leg-BAck xrays show no misallingment-the pain killers help take the edge of tho-I just dont understand what could make me so Sick for so long and no answeres. Thia all started september 1st. And after finding a new doctor we seem to be finally doing something right. So that I kept going on-Just days it feels like i am slipping further away and dont know how to stop it.
    KAren
  • KathiM
    KathiM Member Posts: 8,028 Member
    #14
    Karmar said:

    See the doc monday
    Dear KAthiM

    I see the GYN Monday to discuss all this with him. No bone scan as of yet-Doc GP did bring up the fact that the pain in my leg may be a pinched nerve and is going to set up a mri-since cat scan only showed an enlrged spleen. Gastro doc called me today to let me know no cnacer in esophagas or stomach-but chronic Inflamation so I am and have been on protonix twice daily-dont help the nause or diareah tho-Lets me eat at night tho-He called back a second time to tell me I need a colomoscopy and told them I am coming in the 4th. My thoughts are now that it is very possable that it may be chrohns even tho I am way past the age for a flair up-Looking back with all my diegestive problems-and having a sister and son with it-It seems to be making sense to me right now-The colonoscopy will show that. Just a waiting game at this time.As far as seeing an accupuncter or Chrio-I dont have back pain per say-It is mainly in the right kidney that shoots down the leg-BAck xrays show no misallingment-the pain killers help take the edge of tho-I just dont understand what could make me so Sick for so long and no answeres. Thia all started september 1st. And after finding a new doctor we seem to be finally doing something right. So that I kept going on-Just days it feels like i am slipping further away and dont know how to stop it.
    KAren

    I know, dearheart...the pain makes you weary....
    I was there, too. I DID have a tumor, pressing against my tailbone (that I had broken earlier on in my life).

    Among your questions on Monday...ask about a Pain Management referral. My accupuncture was not for bone/back pain...it helped. And my chiro was special...something called non-force...no popping or cracking...

    Could you try an IBS diet? You can google it online. I got immense relief, cutting dairy and most red meat out of my diet. Post-treatment, I follow this diet closely...no more pain, and only small bouts with diarrhea. When it hits, I switch to BRAT diet for a day or so...(Banannas, Rice, Applesause, and Tea). This works well. Also, I eat 4-6 small meals a day instead of 3 medium ones all of the time now.

    Now, I must say, if you don't know my history, I had surgery for rectal cancer that removed my rectum and sigmoid colon completely, and a J-pouch procedure, where they fashioned a 'new' rectum for me out of descending colon. I will live with this for the rest of my life, but I've used these things I just mentioned to make it so it's something I can live with and enjoy life again. I was inspired by a cousin of my beau's, who, because of inflamatory colitis lost all of his colon. He travels to China, Vietnam, and just returned from South Africa...he lets NOTHING stand in his way!!! (He had a J-pouch made from small intestine, when they were forced to remove the large one completely).

    The most important thing now is to lasso this pain!!!! Ask them on Monday for something that will do more than just 'take the edge off'.

    I am folding my arms around you, Karen.

    Hugs, Kathi

Discussion Boards