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    Old 08-25-2006, 08:48 PM   #1
    musicmork
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    Hi all..I am back on the boards after having been absent for about a year. Does anyone remember me?
    I know a few people were kind enough to inquire about me after I left these boards. The only reason I left is that since I am HIGHLY vulnerable to suggestion...well some of the "doomy-gloomy" responses got the best of me and I began to worry even more. I kind of promised my girlfriend that I would stay away from the internet. So..now I am back and in need of support outside of my friends and family.
    I guess we are ALL here for those reasons huh?
    Just to refresh your memory if you knew me back then or if you are new...
    My basic gastrointestinal history:
    I am a 52 (almost 53) year old male.
    I am about 5'8 averaging 192-195 pounds.
    1998... Had blood in stool...got a sigmoid from my first doctor...he saw red blotches and he called it proctitis.
    1998....Got a second opinion from his partner (my current gastro doc) Was dx from sigmoidoscopy with distal (left sided) ulcerative colitis
    1998- Current -Never had a colonoscopy.(I have done four preps in the past but chickened out).this is further explained below. I do have one scheduled for September 6th that I plan to do.
    1998-2006 -Symptoms over the last 8 years have been various.
    I have had bleeding with bowel movements,thin stools,distended abdomen with tenderness of stiffness,fecal urgencies etc.
    I list my CURRENT symptoms below. Current meds are.., Asacol 400mg 12 tablets a day (4x3) Rowasa enemas, Analpram cream (as needed) Inderal 20mg 4x daily, Xanax .5 mg 4x daily
    I am reaching out for support as I am emotionally and spiritually defeated in the wake of my condition(s). I feel total despair.
    I have never felt so depressed in my life as I have been the last few months. I have pain and discomfort almost everytime I use the bathroom and I have MOST of the symptoms of colo-rectal cancer. Certain symtoms that I have are almost always found with cancer.(according to many websites)

    As I stated above..I have had a colon disease for at least eight years now. My first doctor ..we'll just call him Dr. S...diagnosed me with proctitis after doing an "on the spot "sigmoidoscopy .After that, I changed doctors ( for a second opinion) and went to his partner at the time... Dr. L (my current doctor). Dr. L. performed a sigmoidoscopy and he diagnosed me with Left sided distal ulcerative colitis. That was also eight years ago. I had never had a colonoscopy and in recent months my symptoms have changed a bit and I even got a couple of new ones. I have been nothing short of obsessed and depressed about how I feel and I have a colonoscopy to undergo in less than two weeks. This has always been a two part fear. The first is about the whole anticipation anxiety deal and more so with the sedation. Dr. L wants me to have an anesthesiologist give me IV Propofol and I will be totally put out ...which I have always had major issues with. (this goes way back to a horrifying experienced I had as a youngster when I was given Ether as an anesthesia to remove a piece of metal in my eye). I have never been put out since then. I'd PREFER to be high on some good drugs..but my doctor adamamently wants me OUT. Okay ...next is the fear ( now the BIGGER FEAR) that the news will only be bad....and I won't be able to handle it. I just can't see ANY way that my symptoms could be from something else....even though my doctor has speculated that it's from UC. My doctor USED to tell me that he thinks I still have UC and not CC. Because I have had so many symptoms for so long and my weight is about the same..he thinks that if I had CC I'd have been gone a long time ago.
    Nowadays he says he is through speculating and won't say much until he scopes me.
    So...here I am again online doing some research and came across the information below. I copied and pasted it from a website. Remember...I have been diagnosed with LEFT sided colitis ( which is consistent with the pencil thin stools). I also have the incomplete emptying of the rectum and pain. My rectal pain is more associated with every bowel movement and not ALWAYS there so...I dunno. It can't be good. Pain is never good and serves as a warning. And like the medical information says...when there is pain involved it is in the later stages. The other symptoms I have are...small amount of blood in stool (not always),distended abdomen, gas, difficulty in passing stool and the feeling of not completely "emptying", mild-moderate rectal pain (worse with bowel movements),and sometimes taking naps not long after waking up.(this may be due to my medications or depression or worse), I have copied and pasted some information below that will possibly explain why I have been so worried and consumed by my illness for quite a while now.
    Bottom line here is..something is I feel that something is partially blocking my colon and or rectum. On a good note, I seem to be maintaining my weight and my last blood tests results (May23rd) were normal.(no anemia). My appetite is generally good, I do not have nausea or vomiting.

    Here is a paragraph from the website I referred to above.....

    Changes in the stool are often seen. These are chronic diarrhea in many right-sided colon cancers, and pencil-thin stools in left sided or rectal cancer. A feeling of incomplete emptying of the rectum, called "tenesmus" is frequent with rectal cancer.Pain usually occurs only later in the disease, usually due to painful spasms of the intestine, and invasion of the cancer into nerves. If a cancer grows large enough, it can completely block the bowel, causing "bowel obstruction." Symptoms of total bowel obstruction include no appetite, no bowel movements, abdominal pain, bloating, vomiting. This is an emergency and must be treated with surgery. Every colo-rectal surgeon has had the experience of first detecting cancer at the time of this emergency surgery. Other common later ymptoms include abdominal masses as the tumor grows, weight loss, liver enlargement and bone pain with spread to those organs. Nearly all untreated colon cancer will eventually spread to the liver, since this follows the course of the draining (venous) blood from the colon . The liver provides an ideal spongy, blood-rich area for cancer "seeds" to implant and grow. Less than 10% of colon cancers spread to the brain, but a change in motor skills, judgement, memory or sensation is occasionally the first sign noted. Sometimes, the first sign is spread of the cancer to another body area, and the original tumor cannot even be found (but may have been from the digestive tract). This "cancer of unknown origin" is a well described clinical entity, and a different topic.

    In summation.....let me just say that my life is soooooo messed up. I have been living like a condemned man. It's insane I know..but to me it's all too very real. Everytime I watch the TV and see someone who has passed away I think to myself that I will be joining them. I reminisce about the past a lot. I try to run away from myself but can't. My sleep patterns are awful. I have cancelled so many gigs( I am a professional musician/comedian/entertainer) that I am going broke. I am at home most of the time..and only going out for food (with my girlfriend) or to get my meds or see a doctor.I can't stand or help my thinking anymore. Everytime I eat or go to the bathroom I am reminded of my illness. It seems that every day for me is full of despair and hopelessness. I rarely joke or play music anymore. I have been crying a lot. My psychiatrist said that she is more worried about my mind than my body.
    Thanks for reading all of this.Please don't judge me or feel sorry for me.I already know I am a lot of work and stubborn minded. Also please don't lecture me on how I should have had the colonoscopy. I already know I screwed up by waiting and I have heard a zillion stories about how simple the test is.
    I just needed to reach out and vent....and maybe I will find some sanity left in me to cope.
    Of course...if anyone has something that they want to say that will help me break out of this hell..and not worry me further please do so...I am all for the support of my online friends.
    Can anyone shed some light on my darkest times so far?

     
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    Old 08-25-2006, 11:33 PM   #2
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    Dude, your psychiatrist is right... this is a musician who also plays/teaches/tours full time talking to you. The only difference is.....I HAVE STAGE IV RECTAL CANCER WITH METASTISIS TO THE LIVER AND ABDOMEN!!!!!!... and you probably don't...BUT YOU'LL NEVER KNOW UNTIL YOU GET A COLONOSCOPY!!!

    It may sound cold blooded, but if you follow my and the therapist's advice, I just did you a favor, no matter what the prognosis is.

    Deal with it, and bless your heart. Next...

    Last edited by bossan; 08-25-2006 at 11:37 PM.

     
    Old 08-25-2006, 11:35 PM   #3
    musicmork
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    FIRST OF ALL I AM NOT GOING TO MISS THE COLONOSCOPY. IN FACT I MIGHT TRY TO GET IN EARLIER>>>CAUSE I AM SCARED.

    I'm going nuts right now. tell you why. Okay it gets a bit graphic. Here goes.
    I've just been on about thirty more websites. Unfortunately, I keep matching too many symptoms of "later stage" colon cancer symptoms. For many years I have had bleeding,bloat,some narrowing, some diarhea...but for about 4 months now I have had moderate rectal pain. It usually gets worse from passing stool..but I can still feel it. I always feel the remaining stool in my rectum and I have to wipe a lot. then I feel discomfort and pain when I contract my rectum. My stools are always thin or tiny stools..no more than a half inch wide and often flat...or ribbony.And I have trouble getting it all out.
    I have had blood in my stool for many years..and I still see it in my stool often enough...and if that wasn't enough..my belly is usually distended ...well...I guess that's enough for now.
    Right now I FEAR the bad news more than the procedure at this point.
    After ALL the reading on the web..noy only do I believe I have CC but I believe it will be a late stage thing.
    I am so depressed to read that rectal pain is a later stage symptom and blood is an early stage symptom.
    So...here I am again predicting my own demise...but what ELSE could my symptoms possibly be?

     
    Old 08-25-2006, 11:41 PM   #4
    musicmork
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    Quote:
    Originally Posted by bossan
    Dude, your psychiatrist is right... this is a musician who also plays/teaches/tours full time talking to you. The only difference is.....I HAVE STAGE IV RECTAL CANCER WITH METASTISIS TO THE LIVER AND ABDOMEN!!!!!!... and you probably don't...BUT YOU'LL NEVER KNOW UNTIL YOU GET A COLONOSCOPY!!!

    It may sound cold blooded, but if you follow my and the therapist's advice, I just did you a favor, no matter what the prognosis is.

    Deal with it, and bless your heart. Next...

    BOSSON...I went to read some of your older posts. How in the world are you beating this thing? You MUST be one super positive person.
    Off the subject...What do you play? sing?

     
    Old 08-26-2006, 02:03 AM   #5
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    Read on. You seem to need it. I play guitar, write produce etc.... it played a big part in healing. Its moot, get checked first, then join the club if you need it. Hopefully you won't, really! We'll be here.

     
    Old 08-26-2006, 10:21 AM   #6
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    Bossan is so right...he is our champion here! You will only know what is going on when you have the colonoscopy, so it is too early for you to be so convinced you have colo-rectal cancer. Chances are you do not, but even if you do, along with bossan there are lots of survivors here.

    One of your concerns is how you will accept the diagnosis if it were to be colo-rectal cancer. You would probably surprise yourself. My experience, personal and with others, is that not knowing is far worse than knowing. Once you get a diagnosis, you can plan, make decisions etc. Not knowing can be paralytic. Your other concern is the sedation. I am not sure what I was given recently on two occasions but all I know is that I fell immediately into this wonderful sleep and woke feeling great! Sedation is not what it used to be...it is more sophisticated and easier on the system now.

    DO have the colonoscopy...I have a feeling you will be so relieved when it is done and you can get any treatment you may need to alleviate your problems.

    Take care,

     
    Old 08-26-2006, 12:20 PM   #7
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    Alison and the Boss are SO right... propofol is great... works for only the amount of time the GI needs, which is a few minutes. Then they can give you more to keep you asleep or you wake up quickly when it's over and are NOT groggy. I have had it twice now and can tell you it is NOTHING. The big part is the prep, and you have gone through it multiple times!

    The Boss is right... we will be here for you, but GET IT DONE FIRST.

    On another note, why hasn't your psychiatrist put you on an anti-depressant yet? And talk to your psych about changing to Xanax XR. This will help to relieve some of the anxiety you are feeling at a more consistent level. Xanax is a VERY fast acting drug and often makes you feel MORE anxious due to how fast it leaves your body. I think you would do MUCH better with something longer acting-- such as Xanax XR or Klonopin, and see about getting on an anti-depressant ASAP. You may have had them before and had side effects, but there are much better ones now.

    IF you care about your girlfriend and yourself, you will do what's best to help your mind and body. Get the test. Ask your psych to change your meds. HELP YOURSELF. Then come back to us with the results.

    Good luck,
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    Old 08-26-2006, 01:55 PM   #8
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    Quote:
    Originally Posted by CancerDad
    Alison and the Boss are SO right... propofol is great... works for only the amount of time the GI needs, which is a few minutes. Then they can give you more to keep you asleep or you wake up quickly when it's over and are NOT groggy. I have had it twice now and can tell you it is NOTHING. The big part is the prep, and you have gone through it multiple times!

    The Boss is right... we will be here for you, but GET IT DONE FIRST.

    On another note, why hasn't your psychiatrist put you on an anti-depressant yet? And talk to your psych about changing to Xanax XR. This will help to relieve some of the anxiety you are feeling at a more consistent level. Xanax is a VERY fast acting drug and often makes you feel MORE anxious due to how fast it leaves your body. I think you would do MUCH better with something longer acting-- such as Xanax XR or Klonopin, and see about getting on an anti-depressant ASAP. You may have had them before and had side effects, but there are much better ones now.

    IF you care about your girlfriend and yourself, you will do what's best to help your mind and body. Get the test. Ask your psych to change your meds. HELP YOURSELF. Then come back to us with the results.

    Good luck,
    CancerDad

    Hi...Thanks for the suggestions and the info on Propofol. Now ...about the Xanax....Lemme see...I was on Valium for 28 years before I was switched to Xanax about 7 years ago and it REALLY has helped my panic disorder bigtime. Valium was never NEARLY as effective even though it has a longer half life. I have responded very well with Xanax and am maintaining on the SAME dosage as when I started. I WILL however mention the meds you listed above to her next Friday when I see her....but far as antidepressents...my shrink offered a few choices but at THIS particular time I prefer to try some cognitve therapy instead.

    Thanks again,
    Mark

     
    Old 08-26-2006, 03:08 PM   #9
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    Hi Mark:
    How about both? Antidepressants work best when used with cognitive therapy, so you're right on track with that. They don't have the stigma they once did, and the newer ones do not have the side effects-- sexual, etc-- either. Also, the newer drugs have anxiolytic properties, so they can help to reduce some of the anxiety you experience too. So using the drug with therapy are ideal...especially with what you could be facing. Just a suggestion; why not give both a try?

    I am glad you will consider speaking to your psych about switching to something for anxiety that will provide a more steady state of relief for you. As far as Valium goes, many consider it to be an ANCIENT drug, with much better choices available today. And also, it's not NEARLY as strong as the newer drugs available. While it is true, considering half-lives of the drugs (the time taken for the blood concentration to fall to half its initial value after a single dose) Valium and its metabolites have a long half life, the dose required to equal what most people take in Xanax would be considered very high for Valium. Plus some studies suggest patients do experience a greater reduction in anxiety with many of the newer drugs available. Some studies have have also demonstrated that the fast, high spikes of Xanax often lead to a feeling of increased anxiety, and sometimes a need for dosage adjustment. Hence, the reason the manufacturer came out with a sustained release version. Might also be worth a try.

    Good Luck, and please keep us posted after your colonoscopy.

    ~Cancerdad
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    Old 08-27-2006, 09:47 AM   #10
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    Quote:
    Originally Posted by musicmork
    For many years I have had bleeding,bloat,some narrowing, some diarhea...but for about 4 months now I have had moderate rectal pain. It usually gets worse from passing stool..but I can still feel it. I always feel the remaining stool in my rectum and I have to wipe a lot. then I feel discomfort and pain when I contract my rectum. My stools are always thin or tiny stools..no more than a half inch wide and often flat...or ribbony.And I have trouble getting it all out.
    I have had blood in my stool for many years..and I still see it in my stool often enough...and if that wasn't enough..my belly is usually distended ...well...I guess that's enough for now.
    Right now I FEAR the bad news more than the procedure at this point.
    After ALL the reading on the web..noy only do I believe I have CC but I believe it will be a late stage thing.
    I am so depressed to read that rectal pain is a later stage symptom and blood is an early stage symptom.
    So...here I am again predicting my own demise...but what ELSE could my symptoms possibly be?
    Hey I have the exact same symptoms. I'm having them investigated too. If you find out anything, be sure to report back okay. Good luck!

    Last edited by visionquest; 08-27-2006 at 09:48 AM.

     
    Old 08-27-2006, 01:07 PM   #11
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    I am scared. I have lost weight over the last couple of months. My girlfriend keeps telling me that it's from not eating much. I feel that I may have slowed my snacking a bit but other than that ...still have been basically eating the same..she thinks differently. I have been keeping a log of my weight (always taken after first bowel movement of the day and on the same scale). Some days are missing but most are recorded. About half the days I recorded my food intake as well .
    Here's my weight log ...keep in mind that I do NOT have "D"( only twice) and usually go 1-2 times a day on average.

    Date Weight

    July 5th 197
    July 6th 195
    July 8th 194.5
    July 11th 193.5
    July 13th 191.7
    July 14th 192.2
    July 18th 193.8
    July 21st 194.4
    July 25th 193.6
    July 27th 193
    Aug 1st 193.8
    Aug 3rd 193.8
    Aug 4th 193.8
    Aug 8th 194.4
    Aug 9th 194.4
    Aug 11th 194.6
    Aug 15th 193.6
    Aug 16th 194.4
    Aug 18th 194.2
    Aug 20th 194
    Aug 21st 191.7
    Aug 22d 192.6
    Aug 23rd 191.7
    Aug 24th 192.4
    Aug 27th 189.7 (I lost 3 pounds in 3 days....and 10 pounds in 7 weeks)

    Now...along with afternoon tiredness and naps (not sleeping well at night)...and ALL the other symptoms I have posted..how could I NOT be seriously ill.

    Is this the beginning of the end?

    I'm freaking out again!!!

     
    Old 08-27-2006, 01:42 PM   #12
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    weight loss in summer is common. and sounds like you are worrying yourself to death, so I believe you're not eating as well as before. Your symptoms do not sound like colon cancer. Yes, you have a few symptoms, but I know when you come out of that office after your colonoscopy, you are going to be smiling. You need to get on your knees and get rid of this worry. See if I am not right after your test!!!! I feel really strongly about your worry. Worry can cause so many symptoms.............relax!!!!
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    Old 08-27-2006, 02:07 PM   #13
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    Dear Flintrock,

    First off, I was reading many posts about your aunt and I'm sorry.
    How long did your Aunt maintain after her dx? You stated that it was 3 years that she waited...but your first post about her dx was from 2004. Can you clarify?
    At least she is living to 80 years old. Most people don't live that long. I don't believe I have much time left.
    I guess I am in the opposite of denial. I have sentenced myself before offically getting dx....but ALL the symptoms are with me. I am so scared.
    I have a lot of experience around seniors...assisted living independent living and nursing homes.I have performed in tons of senior residences and nursing homes for over 6 years now...and I know what's happening to whom. I have become close to many and then one day...they are gone.

    Okay back to me for a minute.
    You stated that my symptoms are only some of the cc symptoms.
    Did you look at the symptoms I am having? Or are you responding to few I listed above with my weight?

    If you go to page 1 of this thread (my long post) you will see I listed ALL my symptoms and my history.

    I just wanted to clarify.

    Thanks,
    Mark

    Last edited by musicmork; 08-27-2006 at 02:15 PM.

     
    Old 08-27-2006, 06:12 PM   #14
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    Musicmork, it is so easy for others to tell you not to worry-we all know it just doesn't work that way. Keep promising us that you will do the colonoscopy. I can tell you, I am far from the bravest person, and the anticipation was MUCH worse than the procedure. I was awake for both of mine, and they really were not bad. You may not think you can handle the results if they are bad-you can. You will be amazed how much inner strength you have. There is also a whole community here pulling for you. Please keep posting and we will keep supporting you.

     
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