Friday, September 30, 2016

Scared of my colon

It is incredible how much of your body and life is managed by your colon.  I truly didn't know this, up until the fateful day that my colon tried to kill me.  It was Thanksgiving a few years ago that I got C-Diff which got into my bloodstream and caused a life-threatening sepsis.  Afterwards,  I had severe pseudomembranous pancolitis that took months to recover from, and it left me irreversibly scarred. Mentally scarred, for certain, but possibly physically as well.

It's the mental that gets me - I can see clear as day the handsome long-haired doctor sitting on the counter,, swinging his legs, jauntily telling me that they were going to remove all my colon - just clean it out like a whistle, he said, as if he was talking about waxing his Porsche.  After losing my breast, half my liver, my hair, and someday my life, I was also going to live it by shitting in a bag, and he was practically salivating at the idea.

I can also see the pretty blonde female surgeon, who, while I was crapping uncontrollably in the bed, c-diff fumes filling the room, looked down at me with sympathy and said not to worry, they were used to it, and trust me, they didn't want to operate because it had an 80% death rate - but it might be the only way to save my life.

I've been scared of my colon ever since.

I've been scared of hospitals ever since.  There have been several occasions that regular people would have gone to the ER - but I wouldn't.  I might be the only metastatic cancer patient who has been that ill who has not visited hospitals.   It is because of c-diff.

Last weekend is one of them.

Now, here is your warning:  this post has a lot of TMI goodies, which always come along with a cancer diagnosis, so I'm warning you now: put down your drink, finish up you lunch.  I'm a very genteel woman who hates talking about her lady-bits and the assholey things next to them, but if I want to tell this story, it's unavoidable.  So you have had your warning.

I've been rather lucky, colon-wise, all my life.  "Going to the bathroom" was nothing I had to think about, or take books with me to do, or make a big fuss over.  15 minutes after waking up: Sit, plop, done. 15 seconds, tops.

After the c-diff mess, it did take me months to recover, perhaps a full year. C-diff, if you didn't know, is a diarrheal disease, like dysentery and every bit as horrible as you have imagined it, assuming you have imagined dysentery.  It's not like when you get the flu and have the runs, it's like when you get a big cut and bleed.  You are leaking continuous foul-smelling watery shit out your ass and you can't stop it, don't know when it's coming or done.  Just as you can't control when you bleed out of a cut, you can't control this.  There is no "holding it" at least to run to the bathroom, it surprises you.  However, when you had it like I did, it never stops.  It was like somebody turned on the shit spigot and left it on.    (I lost 13 pounds of waterey shit), which wouldn't sound so bad except I was under a hundred when I went in

So, the day the diapers came off (months after I got out of the hospital) was a day to celebrate.  (Quietly). Actually, you step it down, first it's diapers, then it's maxi-pads, then it's light-days pads, then you take the leap of faith.

(Off topic:  Do you know they don't make adult diapers for somebody as small as me?  I hope I never need to know about this again but really, not everybody has an ass the size of a flotation device. And no, toddler ones do fit because the leg holes are too small. Make a small size please.  Thin discrimination!)

Despite the odds, and the longest hospital stay I've had to date, recover I did. The only thing that remained was my horrible diet.  I was told by a nutritionist to eat highly processed junk food so that my colon wouldn't have to work, exactly the opposite of what I like to eat and have eaten all my life.  I did that for a long time, and then the cancer took over again and I could barely eat anything and lost all appetite.  A piece of candy now and then was all I needed, so I never got back into healthy eating. Over past year I've been on this new chemo, I've been improving although my diet has not.  So C-Diff left me bad diet as a gift.  With all the chemo and pain meds you'd think constipation would be a problem I'd have but it hasn't been true. Healed from C-diff,  I've been regular again.

Until about three months ago.  I got constipated.  I don't know what to blame.  My pain meds have not changed.  I've been on this chemo since last October.  I still eat the same crap although a bit more of it.  I eat easy-on-the-colon and am a water nut.   No reason for having constipation.

I didn't notice at first.  After a week or so, I realized......"hmmmmm.... ain't nunthin happen down there,"  so I tried some senekot.  Now I wasn't uncomfortable or feeling bad, it was merely time that made me notice.

The senekot didn't work.   I tried it every day, and then twice a day.   Nope.  A month later, (yes, it had been a month between "tuffetts" as my mom used to call them)  I was starting to feel bloated  (and my husband pointed out that I looked pregnant) but otherwise I felt okay.  I wasn't missing it and I didn't feel like I actually needed to go. Perhaps my body had evolved into a superior being that no longer needs to defecate.

Still, at my oncology appointment, my doctor asked about my bathroom stylings as always, and I told him about my issue.   He said because of my C-Diff, he'd rather have me a bit constipated then loose, (he is also scarred by that)  and I agreed with him. So he suggested  Milk of Magnesia as easier on the colon than Metamucil.

No matter, the milk of magnesia worked.  Gave me heartburn, but worked.  In two days, I felt better.  And bonus!  Two days later, it happened again.

Now, I'm legally blind without my contacts, and so I am not wont to inspect the bowl to see what's in there.  Like you, I live on the internet, and I know that there are people who check in daily as a sign of health and there is even a chart out there that deciphers shapes and colors for you - but that is a bit much for me.

I did, however, see blood, bright red blood.

"Shit", I said to my shit.

Well, maybe it's natural after a long period of constipation, right?  So I'll keep track so I can tell my doctor if it keeps up. I figured I'd grab my glasses before I next went in there, (omg, what a pain this is going to be!!)

I'd also decided to change my eating habits and that was the day I decided to eat better.  I had a bran muffin for breakfast (instead of a donut) and a peach for lunch (instead of taffy).   Dinner I had sweet potato, a pork chop and spinach salad.

Instantly after dinner, I felt sick.  I felt like I'd eaten way, way too much and it was going to overflow if I moved. It was a horrible feeling, I do not know how obese people who eat after satiety can do it.   Full to me is not a good feeling, it is true misery.  Not only full, but nauseated, shivers, just generally feeling like that delicious meal had been a horrible idea.  So I went to sit next to my husband to watch some TV and wait to digest, stomach jostling, me feeling like I was holding back Niagra Falls.   As time passed that discomfort turned to actual pain, and I wasn't digesting anything.  Around my belly button area, I was feeling strong cramps, like somebody had tied a garrote around my waist and was pulling, and they were getting more and more powerful by the minute.  And I felt so full of food and gas I couldn't move.  Soon, the cramps got too bad and I went to bed to try to curl in a ball.  And, of course, my cat who had been ignoring me for a week decided that was the time for lovin' so she's rubbing around me trying to get me to pet her just as I'm trying not to scream in pain or puke on her..

I am fortunate to have some powerful painkillers, so even though I had finished my daily maintenance dose,  I took one, which relieved the pain enough so I could get in bed and let the cat near me and keep somewhat still.   But it started up again almost immediately.  MY husband was looking at my white face and hearing my groans and saying "Are you sure you don't want to go to the ER?"  and I said, powerfully, "Yes."

My husband should have overridden me but he never will.

Because I'm a moron, that's why I didn't go.  But I have had enough hospital experience and it's awful. I'd rather die at home then in the hospital.  I hate hospitals.   Hospitals have bright lights, there are people who accuse you of wanting drugs, people who want to stick tubes up your butt and make you put size 20 clothes on a size 0 body. They are all really pissed you are there ruining their night.  If you cry and complain you are treated with condescension and if you are stoic and quiet they treat you like nothing is wrong with you and move to the loud people. If you want your pain meds on time you are a drug seeker and if you don't, they will never come to your room.  And a lot of time, you go and they tell you it's nothing and send you home, but not before putting tubes in god-awful places or putting you in one machine or the other, and not to mention them refusing to use my port because it's in my arm rather than my chest and that's too confusing to figure out.

And besides, I hadn't shaved my legs in a couple days.

The worst my house has is a cat who wants to sleep under the covers with me. And a lot of dust bunnies.

My google searches showed I could have a blockage which is a MEDICAL EMERGENCY, or it could be a diverticulitis disease flaring up (or, cancer intruding on an organ, which is the most likely of those).  However, given the choices Dr. Google gave me, and since I know I have diverticulitis from previous scans, I picked that as my diagnosis. I decided I had that because there is nothing to do for it but stay comfortable.  The blockage requires emergency surgery and TUBES up the BUTT and down the NOSE, and I cannot have that.  I really cannot, how would I get my every six hours Afrin spray in? The second one also allows me, in fact encourages me,  to continue my candy/donut diet.  Best of all, nobody would have to remove any of my intestines or colon.

So decision made, there I lay in bed, so full I couldn't lie down, as everything would slide up the back of my throat, burps flying out, with cramps rending my body in two. I'd get up and sit on the toilet, hoping that end would have some relief but it was closed tight.   Finally, six hours after I'd eaten, I threw up, just a little, and it was full bites of what I'd had for dinner, including whole pieces of spinach. (Remind me never to become bulimic).  Nothing had digested even after all that time, and it tasted horrifying, really bulemics, stop, it's just nasty.

But, I felt better for a few minutes, as one always does after puking.  I wish I could do like those bulemics do, and really let it fly.  I bet if I could have gotten it all out, my night would have been much better.  Clearly, my body was rejecting this food and didn't want to digest it.  But throwing up for me is something I fight against tooth and nail, and so once that piece of meat and slimy spinich came out, I gulped and swallowed and stopped myself from doing more.

Of course, the pain started again.

I told my husband, "When it's morning, we are going to have to go to the ER."  Even I know you don't go to the ER with belly pain and no fever (or appendix) on a Friday night with the gunshot victims and Jack Daniels heart attacks, unless you are okay sleeping in plastic chairs in the waiting room.  (Although to be honest, metastatic cancer probably gets you in quicker, but believe it or not, I haven't tested that yet.).  I also just couldn't see a 30 minute drive over bumpy California roads.  So many reasons not to go.

Every 2 hours I took one medicine and every 2 hours I took the other, all night long.  It didn't keep me comfortable, I was a 9-10 on the stupid pain scale, and when the pills/spray kicked in I was down to maybe a 7 until it started building up again after about an hour.   But it kept me home.  And it probably saved my insurance company 50k-100k (or more) on tubes and tests and doctors and nurses and scans.  And I doubt they'd have done a better job in the hospital, as I remember never having a nurse check on me unless I asked her to.*

At 7:00, am, the pain started easing up.  It was also the day my new iPhone arrived.  (That, my friends, is the REAL reason I didn't want to go to the hospital, now you know the worst about me.  I like my toys.)  I drifted off to sleep after 7:00 and woke up at 1:00, doing better.  I decided if I could make it through a night like that, I could make it through a weekend, and if it was bad on Monday, I'd go to my doctor and he would know what to do.  I gave my colon a day off and ate nothing and set my phone up.  Tuesday, I had some soup.  Wednesday, I began to eat normally and all is well by now.

Well, it's Friday as I write and I haven't gone to the doctor.  I am not 100% well but am recovering. I have slept a lot this week.   I decided to get "regular", so I take senekot every night and usually am productive the next day.   (If what I experienced had to do with constipation, I don't want to do that again).

And I have a lot of pain (again) on the right side especially when I breathe in.   My stomach is back to feeling like it did a few months back - constantly full. I had gotten to 97 pounds, goal weight 100. We'll see if I can keep it up but I once again have no desire to eat.  I am intensely fatigued all the time, but am still recovering.  My energy gains are gone.  But I have a new iPhone 7+and I didn't go to the ER, saving my insurance thousands..

You are welcome, Anthem Blue Cross.

Each time I get slapped down, I get up.  But I admit, I get up slower each time.  How much is the fact that I'm aging and how much is cancer and all the treatment I've had?  It's hard to say isn't it?  I'll never know what it feels like to be in my 50s and healthy.  MY husband, however, is 69 and much healthier than I am.

Last September, one year ago, I had 2 weeks of incredible pain, which stopped INSIDE a scan machine! Because it stopped I thought I had kidney stones, or something else.  Unfortunately, that turned out to be mets growing, farther than it had before.  I have been on this chemo a year, and maybe it's done all it can do.  So I'll tell my doctor when it's time to see him in five weeks, and see if he'll do another scan, although I had to fight the insurance company for the last.  If they won't, then we'll see.

My insurance company is doing a  medical "review" to decide whether I can keep getting the pain drugs I was taking so cross your fingers they say yes.  Otherwise, there will be more hospitalizations, as I can't take pain like that without chemical help.  It would be stupid to say no but hey....they have said no to PET scans.  Need I say more?

This is the life of a metastatic cancer patient.  I had such a long period of feeling good, I decided to start a little business, make some money for Christmas, and then BAM.  Something like this happens. A healthy woman could recover in 24 hours.  It takes me a couple of weeks.  And it reminds me I'm never too far from it being all over.  It reminds me that starting a business is risky for me, risky for everybody, as one day I could suddenly not fulfill orders and nobody around me could finish.  It's like cancer wants me to just sit down and watch YouTube videos all day.

Well, I'm doing ok now.  This could have ended quite differently - it may still. One thing for sure, I'll let you know.


I am asking you to check back in October as I will be doing some important posts, starting tomorrow, and I also am going to have a guest post with a surprise topic.  I also will be giving away a very cool item that has a LOT of the proceeds going to a REAL charity (not 5% to a nothing charity) and despite it being pink, it is something I use and you will want. /hint

Please start your amazon purchases from my page - that would really be nice.  If you start from the search box on my page and then shop, anything you put in your cart and check out will give me a small percentage.  Unfortunately, you have to be on my full page and not mobile to see the search box - I'll figure out how to get it to view on mobile one of these days.  That money really helps around Christmas. No I am not poor but I'm not Mark Zuckerberg either.  I work hard to keep the blog going and this Amazon thing is how I get paid.  I am solidly lower middle class, paying for a kid in college, for those who haven't figured it out yet.


If I seem hard on hospitals, read this post.   I have been hospitalized after this, as had my dad.  I had some amazing nurses which I wrote about - the ones in ICU in Mercy San Juan and all the ones in UCSF and my wonderful student nurse, Dana, whom I'll never forget. I hope that she hasn't become jaded by now either as she was so loving when I was so terrified.   But there have been a lot of misses in the wards, and Clementine stands out for me, but she's not alone.  Plus, what my dad experienced with nurses when he was sick ( and died) would make a horrible, unfunny sitcom.  They actually refused to come over to an old lady who had fallen out of bed, right in a room in front of the nurses station because she yelled "help" instead of hitting the the call button (which she couldn't reach)  and I was told that flat out by the staff.  "We don't come if a patient is screaming, they have to use the button."   I would rather die than ever go to a hospital in Carson City, Nevada, although the outcome would be exactly the same from what I saw that day (and my father did die).  Anyway, hospitals are not good places under the best of conditions and I intend to stay home as much as I can.  A good nurse, and you will have one, can make your day.   But a bad one, and you may have one, will ruin your entire thought about hospitals.

Unless I'm running a fever, mere pain won't send me in.


  1. Wow. Glad you're OK. Why not send a note to your doctor via the Patient Portal - s/he will at least be able to be better prepared for your visit 5 weeks from now.

    1. Patient I have that? I'm not sure I ever heard of it.

    2. The hospital system I use has a patient portal where I can log in to see my records including medical test results. I can also report issues to my doctor our team of doctors. They will see the message and be alerted off its presence. It also becomes a part of my medical notes. Kristy Williams

  2. My best friend is a box of activated charcoal capsules. Just finished six rounds of please just kill me chemo. Food became poisonous concoctions of bacteria but the charcoal saved me many times. About hospitals...don't get me started, but you really have to hire a body guard to keep you alive. Night nurses are ninjas.

  3. Ann your stomach gut flora accormodate to your diet. This happened to me after eating a hamburger after 30 years of no red meat. If you want to eat healthy go slow, one bite of spinach, one bite of pork chop etc. The gut flora can't digest the food and you had probably done in your gastrocolonic reflex with your constipation meds. The extra pain meds gummed you up too but I did the same thing after the burger. That kind of pain is horrific. I am so sorry. If you want to change your diet go slow. Your body will definately tell you when it can't handle it so you kind of have to sneak up on it. The good news is that gradually working up to some good food will get your gut to produce the good bacteria needed to digest it without going through hell. I can have bacon now, not a lot because I still rarely eat red meat but it a piece or two is wonderful. This may not be what happened to you but it is worth a think. Glad you got through it. Omg!

  4. Hugs Ann. I had diarrhea as my worst side effect from chemo. Well, I thought it was the worst. My doctors thought the worst was the heart block and the kidney failure. But what the heck do they know. I am 4 years plus out of chemo and diapers are still handy. If im lucky i get time to make it to the bathroom. If not, oh well, thats why diapers and washing machines. Im still stage 2, but was anle only to get half of the herceptin and it was before perjeta. So keeping my fingers crossed whenever my innards act up. Family history is very scary, but i have 2 choices, go on, or not. Im standing by the tracks you're on, and you can see the train, that I only hear coming. So you do whatever you need to.

  5. Wow Ann....What a thing to happen on top of everything you have been through. I hope you get better and pray this doesn't happen again.

  6. The hospitals in your area sound absolutely vile. I have had very different experiences. I have had complicated surgeries the last several years (DIEP reconstruction, back surgery, bilateral knee replacements with 2 weeks in-hospital rehab) and I have been taken care of thoughtfully and respectfully. I have gone to the ER with cellulitis and a high fever and MRSA and I had to take my husband to the ER after he hit his head hard enough to lose consciousness. I have had nurses who clung like me to white on rice. Pain meds were administered on a closely monitored schedule. It is true that pain meds are restricted much more than they were before but when I had my knees replaced, the nurses would come in and remind me to take the meds before the pain got out of hand. I see the hospital as my safe place but clearly you do not have a trustworthy facility.

  7. Ann, you have been through such hell. I am so sorry you have to suffer so much. I look forward to your posts in October. And, by the way, I can't stand the subpar care one gets at the hospital.

  8. What you described sounded like a bowel obstruction. I have had those several times and ended up with the dreaded ng tube down my nose for days at a time. The obstructions are very painful. If that's what you had, it is important to let your bowel rest and build back up fiber slowly. You will be tender and tired from it for several weeks to come. The last time I had one (last fourth of July), it took over a month to recover. Just a few bites of food at a time. Simple soups in small amounts with everything well cooked are good. I am sorry you are dealing with this.

  9. I always read your writings with such vigor and laughter and I can hear your voice in each one! Even a horrible experience you can find humor in, and make it more palatable �� Though, not funny at all, I am so sorry you had this happen to you and I seriously hope it's just as Caroline said...
    Shame on any nurse who treats a patient with such distain as you have witnessed. And shame on any insurance company review board who withholds what you need. It's just unconscionable. If I come to visit soon I promise we won't go out for salad. Maybe just cake!

  10. Ann, thank you so much for putting into words the back-and-forth with hospitals. I have bone mets.... went to the at 2:30 in the morning absolutely bent over with pain. They triaged me then stuck me alone in a room in the back for 2 1/2 hours. Absolutely NO ONE came in to check on me. They thought I was seeking drugs. I ended up limping out of there and somehow made it home. Figured if I had to continue to suffer I'd do it at home and not incur a charge from the hospital. I felt such shame and despair that night. Thank you for letting me know I'm not the only one who has gone through this.

  11. Your description of C diff. fumes cracked me up. I was hospitalized for C diff. during my first round of chemo. It's a great way of clearing a room of people you don't feel like talking to.

  12. Thank you so much for sharing with the world you journey of cries, laughter and challenges. You are inspiration to others including myself. So proud to share your journey with others on a journey with breast cancer.


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