Why I Can’t Wait for My Colonoscopy

Photo Credit: abcnews.go.com

Photo Credit: abcnews.go.com

You’re probably wondering what’s wrong with me.  Why would anyone in their right mind look forward to a colonoscopy?

It’s simple.  I can’t wait for the “prep” to be over.  But it may not be for the reason you are thinking…

Of course the prep itself is rotten.  It has been three days since a morsel of food has crossed my lips.  And drinking this God-awful stuff that wrenches your insides and makes you feel as though you are tethered to toilet is no picnic.  And because Palliative Care (see Palliative Care at 30-Something: What Does it Mean? Part I and Part II) has me on around-the-clock opiates, I was required to do the “Extended Preparation” which includes “extra” days of not eating and of a clear liquid diet, a few different types of unpleasant liquid solutions that make you “go” with extreme urgency, pills that also make you “go,” and enemas.  Did I mention I’ve gone 3 days without eating any food and have been consuming only clear liquids?**  Can you tell this one is getting to me

Photo Credit:  pregnancy.lovetoknow.com

Photo Credit: pregnancy.lovetoknow.com

Right now I’m trying to drink the last 4 liters of yucky stuff from the pharmacy in the prescribed 3 hours, but I can’t keep it down.  I have been vomiting so much that I’m not sure there is anymore liquid to throw up — until I throw up again.  I stop drinking entirely this afternoon.  And then I have to give myself 2 enemas in the 2 hours before the procedure, holding the contents of the enema bottles “in” for 15 minutes per bottle before I can go to the bathroom.

If you’ve ever had a colonoscopy, you are probably nodding your head now.  You know how rotten the prequel to this procedure can be.  Or maybe you’ve blocked it out of your mind and forgotten?  If so, I’m sorry for reminding you.

I must admit that I had forgotten.  Tucked the memories of my last “clean out” neatly away in my brain.

Okay, really what happened was that they were replaced by much more traumatic scenes. The last time I did this it wasn’t for a colonoscopy — I honestly can’t recall my last one, let alone the prep.  I just remember waking up shocked that I was dressed and asking who had put my underwear back on.  The answer was “me,” but I was so out of it from the anesthesia that I had no recollection of the day’s events.  Sounds like spring break gone bad!

No the last “prep” of this kind that I am talking about was for my hysterectomy and salpingo-oopherectomy last year.

It’s no wonder the prep is not what I recall about the events leading up to this surgery.  I had complex pelvic masses.  One was so large that you could feel it when you touched my belly.

I needed to have my right ovary removed the day after Halloween two years ago thanks to the side effects of Tamoxifen* [see below].   The ovary was filled with a crap-ton (urbandictionary.com defines a crap-ton as “4 shit loads”) of septated cysts.

And here I was facing the prospect of losing my remaining ovary and my uterus.  At the age of 35.

A part of me wanted to be sure of what they were seeing before I went under the knife again.  This was the part that didn’t want to have to go through another major surgery and recovery.  And this was the part that was still holding on to the hope of giving birth to a little girl, the daughter I had dreamed of having from the time I was a little girl myself.  It was also the part that wanted to be absolutely sure of what they were seeing before I let them cut into me again.  And this was the part of me that was just tired of all of the cancer crap.

And then there was the part of me that wanted to shake some sense into the aforementioned part.  This was the part of me that, after each scan or exam, grew more and more fearful that what I might be dealing with was ovarian cancer [breast cancer increases this risk], or ovarian mets (metastasis) from the breast cancer to the ovaries.  I was also dealing with the concern that I could have a new primary cancer in my uterus.  I say a new primary rather than a metastasis in this case because Tamoxifen upped my risk of developing uterine cancer.  “Tamoxifen acts as an anti-estrogen in breast tissue, but it acts like an estrogen in the uterus. It can cause the uterine lining to grow, which increases the risk of endometrial cancer.” [Source: cancer.org]

In a short period of time I had multiple gyn exams, transvaginal and abdominal ultrasounds, an MRI, and a CAT scan.  Each of these tests confirmed the presence of these complex masses.  And they were growing.

At my last ultrasound appointment, the technician asked me to stay on the exam table while she went for the doctor.  When they came into the room together, my doctor told me that I needed to go to the hospital immediately, and she sent me to the emergency room.  I remember scrambling because it was a Tuesday afternoon and I didn’t know how long I would be in the hospital, but I knew it would be long enough that I would need to find somebody to pick my boys up from elementary school.

Another CAT scan was performed in the Emergency Room.  It didn’t look good.  The thought that these masses could be ovarian mets or ovarian cancer scared the hell out of me.  And there wasn’t really a decision to be made.

After meeting with the leading GYN oncologist in our area, my surgery was scheduled for the next week.

But a part of me wondered if there was any way out of this.

And then I began hemorrhaging just before my surgery.  There was so much blood.  I remember trying to get into the shower before an appointment.  It was just a few steps from where I disrobed to the shower, and just with those few steps, I managed to cover the floor with a large pool of blood.  I was as pale as a ghost.  And I felt like I was a stone’s throw from becoming one.

When I went in to see my regular gyn, she was clearly concerned that this was further evidence that I might have uterine cancer.  She did a biopsy that day and prescribed drugs that would help to lessen the bleeding until my surgery.  They didn’t really help, so I was almost “thankful” that my hysterectomy was just around the corner.

My gyn oncologist removed everything that was left of my female parts, with the exception of the one that starts with a “V,” but even “it” did not come out unscathed.   Since he took my cervix, the surgeon had to use the top of the vagina to create what’s known as a “vaginal cuff.”

Though I had signed all of the consents prior to my surgery, including the special one you have to sign when you are of childbearing age (indicating that you understand that you are undergoing surgical sterilization), I was still shocked to wake up to find that everything was gone.  Everything.

I spent 4 days in the hospital after the surgery.  It was a difficult 4 days, emotionally and physically.  I required blood.  I needed enemas and catheterization.

I could barely get out of the hospital bed, let alone make it down the hall — for days.  {The blood transfusions helped with this, thankfully.}

And I had a massive migraine.  As a chronic migraine sufferer, I am no stranger to headaches.  But this was worse than any headache I had ever experienced.  The consensus was that the cause was linked to the fact that my estrogen levels had soared in the year before my surgery, and then, suddenly, plummeted as a result of the surgery.  And nothing would alleviate the pain.  Not the morphine drip, not the oxicodone or the oxycontin, not the dilaudid.  Nothing.  I needed my hormones back.

A normally positive person who tries to see the good in everything, I lay in that bed, broken and empty, as I awaited the pathology report.  I felt as though I was a shadow of my pre-cancer self.  I pictured Hansel and Gretel walking on that path through they woods, leaving bits of bread behind so they could find their way back home.  I had been leaving bits and pieces of myself behind on the long and winding road since my diagnosis.  But I knew I would never find my way back home.

So doing this “colon prep” has been especially difficult.  Not just because it’s physically rough, but because it has made the memories of my hysterectomy flood back through gates I had sealed shut soon after the surgery.  As the old saying goes, “Denial (The Nile) ain’t just a river in Egypt.”

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There is more to this story.  But I will have to save the remainder until I am feeling better.  Thank you for reading…

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*Tamoxifen is an antagonist of the estrogen receptor in breast tissue via its activemetabolite, hydroxytamoxifen. In other tissues such as the endometrium, it behaves as anagonist, and thus may be characterized as a mixed agonist/antagonist. Tamoxifen is the usual endocrine (anti-estrogen) therapy for hormone receptor-positive breast cancer in pre-menopausal women, and is also a standard in post-menopausal women althougharomatase inhibitors are also frequently used in that setting.[1]

Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor.

[Thank you, Wikipedia, for this Tamoxifen info!]

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**In case you are interested, here’s the list of approved clear liquids:  water, Sprite, apple or white cranberry juice, clear or yellow Gatorade/Powerade, chicken broth (nothing in it — NO beef broth), black coffee/tea (no milk or cream), Jell-O (yellow, orange, green only), or popsicles (not red or purple).

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P.S.  As much as I’ve struggled with the prep, I know it’s worth it.  IWith symptoms like pain and rectal bleeding (and with my cancer history), I know it’s better to do this than risk the alternative.  Please don’t let my post deter you from having a colonoscopy.  The “extended prep” is usually not necessary, and the procedure and the prep are over before you know it (and I think my reaction to it is rare?).  They are also far easier than dealing with cancer would be.  So please follow the recommended screening guidelines and do this important test (generally beginning at age 50).  In some cases (like mine), a colonoscopy may be necessary before you turn 50 (or in between the recommended 10 year gap from screening to screening).  If you have a family history of colon cancer or if, like me, you are experiencing issues (i.e. rectal bleeding or a change in bowel habits), please consult your doctor to see if you are in need of a colonoscopy.

“Almost all colorectal cancers begin as a small polyp. If a polyp is found during colonoscopy, it will be removed and this prevents the polyp from every turning into cancer. But if you don’t have your colonoscopy in the first place, then you are throwing away the chance to detect polyps when they are easily treated.” [http://www.columbiasurgery.net/five-reasons-not-to-get-colonoscopy]

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50 thoughts on “Why I Can’t Wait for My Colonoscopy

  1. I wish I could say something helpful. It’s strange, for me, to want to wrap my arms around a total stranger. I’m not a hugger. 🙂
    Cancer is cruel but nothing is more cruel than losing your childhood dream to it. I’m so utterly sorry.
    The only way I can handle not getting to have children in this life is that I pray that I will in my next life. I feel like less, incomplete, and I long for the child I miscarried so long ago. It just never goes anywhere, does it?
    I’m holding you in the light today.

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    • thank you. i’m so sorry for your loss and for what you are going through. thanks so much for your message. i hope that you can one day — in this life or another — have the child you so long for.
      sending you my warmest thoughts…

      Like

  2. oh. I’m so sorry. I think my MIL has had a colonoscopy done and whilst I remember a whole list of guidelines on the prep, I do not remember having to go on a liquid diet. I believe she could eat some vegan (fruit or veg) but don’t take my word for it…and I live in Israel.
    My father has had cancer twice (Testicle when he was 50 Prostate when he was 69) but has never had a colonoscopy, whilst I believe the oncologist used to ask him if he wanted one, he would always decline. Since he was about 70 yo his GP started giving him to do Poop smear tests…the diet is a little restricted and than you need to supply 3 small stool samples that go to the lab and look for hidden blood. so far so good, but I keep urging him to go after a colonscopy…
    I must ask, did you do the BRCA genetic test, as this did happen to you at a relatively young age.
    I also understand from your post that the pathology after your last surgery was good news, right?
    (I mean that it wasn’t cancer)
    Regarding your vomiting, be sure you aren’t dehydrated.
    Good luck with your colonscopy!

    I hope this is PC to tell you. I don’t want to offend, please forgive me if I have. Before I was married I used to wonder if I would have a daughter because I have 3 brothers and I thought this might be my “luck” that I would only have boys…so I thought to my self, if I can afford it maybe I should adopt a girl if I don’t have one of my own, and these days you can also hire a surrogate and get an egg donor. Anyway, I digress. The most important this right now is YOU, your health so that you can be and enjoy time with your family.

    btw, have you watched this documentary? it’s powerful.
    http://ucca.org.cn/en/program/my-two-breasts-a-diary-of-healing/

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    • thank you for your message, orli. i’m sorry for your father’s cancer diagnoses and hope he is managing okay. it’s good that he does the poop smear tests, but i’m sure it’s frustrating for you that he doesn’t want the colonoscopy.
      i think your MIL’s experience is more the norm, though fruits & veggies were the first things i had to cut from my diet to prepare. but i don’t recall having to do the liquid diet very long for my last one. i hope no one is scared off by my experience with this one!
      i haven’t watched the documentary, but i will take a look.
      thanks so much for taking the time to comment. i wish you and your dad all the best!

      Like

      • I must apologies again, I forget to be “sympathetic”, I do feel and agree with a lot of what the others have commented, I just don’t always realize in time that I should stop being “practical, logical, me” and I should walk in someone else shoes.
        I’ve read some of the comments by the other people and I’m like they are so true…you are brave and strong and magnificent.
        As for my father, I guess poop smears is at least something. He’s 75 now, so I guess we are doing something right. He’s doing okay. Oncology follow up visits are down to once a year with twice a year a blood test for PSA.
        Fingers crossed for good results for you!

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  3. It is so you, that although you had finished your post beautifully, you took time to remind everyone that the normal prep and procedure, although not fun, are over quickly and important prevention. Believe it or not, one of my sisters in her 50’s still drags her feet getting her annual mammogram, even with considerable family history of cancer, and my own experience at her age. Your cautionary tale, and insistence on showing the unvarnished truth of your circumstances, have great potential to change things for others. You are remarkably selfless and brave, and I continue to admire your persistence in posting and sharing, no matter how lousy you feel yourself. We continue to pray for you and your family, and for a positive outcome to the procedure at hand. Much love,
    XOXOXO

    Like

    • Thank you so much for such a kind comment. I am deeply touched by everything you wrote and, though we only know one another through our writing/blogging, I feel fortunate to count you as a friend.

      I am grateful that you always take the time to read my posts, let alone leave such lovely and eloquent responses.
      I’m sorry to hear that your sister drags her feet when it comes to mammograms. I’m sure it’s difficult for you to accept this given what you have been through. I know I’m easily frustrated when I’m encouraging loved ones to keep up with screenings or to get concerns evaluated. We only want the best for them and want them to avoid the pain we’ve endured. It’s a shame they sometimes make it so difficult! 😉 I hope she one day reconsiders her reluctance, and I’m glad she has a sister like you to encourage her to take care of herself in this way.

      Thank you so, so much for such a moving comment and for your continued prayers. xoxoxoxoxoxo

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  4. Girl, I am so with you right now. It’s been 7 years since my breast cancer – and it was time to swap out my implants (for reasons such as my own hysterectomy & a PET scan this year, I’d met my out of pocket & it was fiscally convenient to get this implant swap out out of the way this year) you’d think “New Boobies! Yay!” And that’s what I thought it would be for me. But the stitches, the drains, the trouble rolling over, the inability to look at myself in the mirror because of my Frankenboobies has brought back such painful memories of my cancer too. It’s like a soldiers PTSD flashbacks. It wakes me up at night and I’ve been in a sinking, swirling depression since.

    Cancer: the gift that keeps on giving, huh?
    Good luck with the proceedure. All good results, Sista! God bless.

    Like

    • Oh Wendi, I’m so sorry for what you are going through! And I’m sure a soldier’s PTSD flashbacks are a fitting comparison. I’ve was actually just reading about cancer-related PTSD. This is from the Mayo Clinic website:
      “Research has shown that post-traumatic stress disorder (PTSD) can occur with cancer survivors — especially since you’re dealing with a life-threatening medical diagnosis. This is particularly true of childhood cancer survivors, survivors of aggressive cancers and cancers that require intense treatments.”
      And I’m sure this is one of the “side effects” of cancer / cancer treatment that most people would be surprised to hear about. But I know you are not alone.

      I was especially shell-shocked after the hysterectomy & with the hospital-acquired infection I developed during that surgery’s hospital stay. It was scary and took so many months and so much intense treatment to recover from. I didn’t think I’d survive it. Now when I check into the hospital, on top of having flashbacks from the surgeries/recoveries, I’m a complete germophobe because I’m simply terrified of having an infection almost take me out again. I think you are so right about cancer being the gift that keeps on giving.

      I’m so sorry you are going through this and wish there was something I could do to help. You’ll be in my thoughts & prayers. Please stop back and let me know how you are doing — and how your surgery recovery is going.
      Gentle hugs and my warmest wishes…
      Leisha

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  5. So, so, so sorry that you have to go through this! As someone above said, I also wish we could all come there and surround you in person and give you hugs and strength. I wish you the very best and I hope that you receive good news. Please keep us posted. Sending you hugs, love and strength, praying for you!! XOXO

    Like

  6. Thank you for sharing your journey and your fight. Sending you and your family my ❤. I’ve watched my mom fight triple negative breast cancer, and its asshole. I’m hoping your colonoscopy goes well and you are feeling better quickly.

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  7. So sorry you have to do this, please do an “after” post when you feel able so we can know you are alright.. I have had this procedure done with out the extended prep.. Not nearly as bad as the prep you are doing.. Hope the procedure is quick and uneventful for you..xo (good luck keeping “it” in for 15 minutes”)

    Like

    • Thank you so much, Dragana… I am not familiar with the diet you mentioned, but just googled it to learn more. I try to eat as many fruits and vegetables as I can, but with our finances being so tight, I have to be so choosy, especially when it comes to organic produce so I’m afraid I couldn’t even manage to meet the requirements of the diet… But your message is a good reminder to keep trying keep trying to incorporate more fresh foods into my diet.
      Thanks so much for taking the time to read my whole blog and for your kind words…

      Like

  8. Just a brief note to add my virtual {{{hug}}}. I’ve been reading your blog just recently, since a dear friend received a scary diagnosis, and at the same time, saw a link to your FB posts for the first time. Please know that you are touching and encouraging many! God be with you. ❤

    Like

  9. I have just read your entire blog. My heart goes out to you. It is baffling that someone so obviously loving, kind and sweet would have so much suffering. To say life is not fair doesn’t even begin to cover it. Stay strong. And thank you.

    Like

  10. I adore you for encouraging everyone to get their recommended screenings even though they make you so misearble! I also adore you for reminding me how little I have to complain about after my recent accident! I’ll think of you every time I want to whine.
    Finally, as one who orders the tests, refers to the surgeons, and the GI docs, it is helpfull to read your words. I do like to think of myself as compassionate, but we never really can be empathetic unless we’ve been there too. So glad I started following your blog!

    Like

    • Thank you, Laurie. I’m glad you are following my blog, too!
      I feel badly about your accident and your pain! (and I think you have every right to feel bad!)
      And thank you for sharing your perspective as a medical professional. I appreciate your feedback and your kind words so much…
      And I am thinking about you and sending healing thoughts your way… xoxo

      Like

  11. Pingback: Daily Prompt: My Little Characters | cancerinmythirties

  12. I’ve got the special “V” cuff down below too. Didn’t have as many complications as you. I admit though, I feel like a cat at the vet every time I have to go in for a procedure. I just want to hiss and maybe bite someone. I have refrained so far from doing so. Glad to hear you got good news!

    Like

    • I’m sorry to hear about your surgery and that you also have a “V” cuff, Mae.
      I love your description of a cat at the vet. That’s perfect! I didn’t realize that I felt like a cornered cat at the vet too, but I do. I really do. I guess that might explain my recent affinity for tuna. Hmmm… Glad I’m not alone, but sorry you are in this club, too.
      Thanks so much, Mae…

      Like

  13. Thank you for linking to our article “Five Reasons NOT to Get a Colonoscopy”. I hope you and others find it helpful. If you have any other suggestions (“Five MORE Reasons Not to Get a Colonoscopy”) we would be more than happy to add your contributions.

    I applaud your efforts in blogging about your experiences. I know it maybe difficult at times, at others a creative release. Yet, I am sure that others find comfort in reading your thoughts as well as sharing their experiences with you. It’s amazing how blogging can create communities you may not find in every day life. I’m learning how these experiences are helpful to many.

    if you ever have any specific questions about cancer for our doctors, please feel free to email me at bwj3@columbia.edu and I will have someone contact you.

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