It’s Just A Jump To The Left And Then A Step To The Right

Whenever I think about my bowel issues because of this stupid cancer it always makes me think of the song from the “Rocky Horror Picture Show”, “Time Warp”. 😀  You know how it goes….
It’s just a jump to the left
And then a step to the right
Put your hands on your hips
You bring your knees in tight
But it’s the pelvic thrust
That really drives you insane.
Let’s do the time-warp again. Let’s do the bowel warp again.
Let’s do the time-warp again. Let’s do the bowel warp again.  (Now, that’s gonna be stuck in your head)

Yes I did change the words but, if you put up with my silliness for another minute I will explain. 😀  While most people deal with carcinoid syndrome it seems that I do not have they typical syndrome. If you haven’t figured this out yet, nothing about me is typical. 😀

After a trip to the Rocky Mountain Cancer Center, Dr. Liu explained that I have some “sort” of syndrome but not the typical syndrome associated with Net / Carcinoid Cancer. I don’t have the typical flushing and diarrhea associated with carcinoid syndrome but, instead, my bowels swing back and forth between diarrhea and constipation. I was part of a discussion on Facebook about a week ago that dealt with this exact issue and I thought I would share what Dr. Liu suggested to me to help resolve some of my misery.

I Have A Syndrome

I had always heard that you either have carcinoid syndrome or you don’t. The medical terms are functional and nonfunctional. Dr. Liu basically said that this wasn’t really true. As we chatted in his office, and snacked on M&Ms, he explained that although the flushing and diarrhea is typical for carcinoid syndrome that I obviously had some sort of atypical syndrome associated with my cancer. As we chatted more he noted that I hadn’t had any of these symptoms before my diagnosis and they have only gotten worse as time has continued and the cancer has spread. He explained that there are many people who have a similar syndrome as me and it is also a result of having carcinoid / Net cancer. (Net Cancer is the abbreviation for Neuroendocrine Cancer). If you are  not familiar with the symptoms for carcinoid cancer, here’s a quick quote on that from Sandostatin.com

Nonfunctioning tumors may present with either no signs of the disease or only vague symptoms. This makes it difficult to diagnose NET at an early stage, and patients are often initially misdiagnosed with other gastrointestinal disorders, such as irritable bowel syndrome. Correct diagnosis is typically delayed by several years.

and here’s a bit more on functioning tumors from the same web site.

The distinct set of symptoms caused by the secretions of functional gastrointestinal and pancreatic NET—the most common type of NET—is referred to as carcinoid syndrome. Patients with midgut gastrointestinal and pancreatic NET may present with carcinoid syndrome.

Finally, here’s a quick graph of the symptoms typically associated with carcinoid syndrome It’s again from the same web site.

No, I do not have the typical carcinoid syndrome but I definitely have some kind of atypical carcinoid syndrome. This makes perfect sense to me.

It’s Just A Jump To The Left And Then A Step To The Right

So, now that we’ve figured out what’s wrong is there a remedy? How do I stop the swings in my bowels and find relief. The good news is that I found quite a bit of relief in his advice….bad news, it’s only as good as you are at observing your body. Since I have been in the hospital on more than one occasion with bowels that were basically “solid”, I monitor everything like I’m the guy with his finger on the nuclear button! I am ever vigilant. I’m sorry if I’m joking too much. I tend to use humor to deflect pain… and this was quite a bit of pain. Helping others also makes me feel better which is why I’m putting this out there for you all to read. 🙂

His advice was pretty simple. Get the biggest tub of Miralax that I could buy and to take it every day but to keep adjusting the “dose” I was taking until I found a “balance” that allowed me to use the toilet and made me most comfortable.  He suggested that he would rather have my bowels on the “wet” side rather than the “dry” side to reduce the stress on my system. I have to say, this was very simple but the best advice I’ve gotten in a long time.

Here’s What I Do With That Advice

Here’s my routine. As I said before, my bowel habits swing quite a bit so I adjust my dose of Miralax constantly. I did mention, but will mention again, that I take Miralax every day. I start with half of the suggested dose on the bottle. Often, that is enough for me to feel somewhat normal but if I am too loose then I reduce it to 1/4 of a dose and sometimes I will even stop taking Miralax altogether if I have diarrhea for more than 1 day. If I am swinging toward constipation then I increase my dose to a full dose and will do that for more than one day if I am still constipated. As long as I am vigilant then this will usually do the trick.

My Stay Out Of The Hospital Trick

So, as you will note…this is really just what works for me and I guess you will have to kind of find something that works for you but, I’m sharing because maybe this WILL work for you!!! 😀 Here’s my “Stay Out Of The Hospital Trick”! As, I noted before, I have been in the hospital with bowels that had become basically “solid” because of constipation and my ignorance. I cannot tell you how painful this is and so, I am sharing my little trick. It’s Milk of Magnesia.

Oh the joys of Milk of Magnesia. It comes in cherry and mint and maybe other flavors but there is just no way to hide the horrific tasted! 😀 Still, when Miralax isn’t working a full dose of this gets me moving in about 4 hours. Be prepared though. It is a very strong medicine and you will spend quite a bit of time on your commode. I will say, this has kept me from ending up in the hospital so many times so…. I will endure the taste and the extreme reaction my body has to it.

I hoped this helps somebody! I know it has helped me,

Ed

 

19 Comments

  1. Great post Ed! And helpful too. So glad to see your healthy dose of helpfulness tempered with your humor about our situation.Thank you!

    • I don’t because that is for people with the typical carcinoid syndrome with diarrhea and flushing …my bowels swing from that to constipation without notice 🙂

  2. Ed, good to see you using humor. Its helped me through a lot, even my recent head injury.

    “Be prepared though. It is a very strong medicine and you will spend quite a bit of time on your commode.”

    Well at least that is one performance you don’t have to miss when you need to get up to use the bathroom.

      • Long story short, at night, was throwing a box into the back of my SUV and used the pull strap to close it. That pull strap is a bit further in than it should be, so you always have to duck so the door doesn’t hit you. Well I was rushing and forgot to duck and I yanked it down hard and whacked myself in the head. Somehow I did manage to close it because I got knocked to the ground. Never lost consciousness, never got dizzy. Went to the ER and had 7 internal stitches and 17 external stitches. Lacerated my forehead, I could even feel my skull. Lost over a pint of blood through the entire process.

  3. Good post Ed… MOM (milk of magnesia) is kind of a wonder drug if you ask me. After I had liver surgery to remove the largest NETs and they removed my gall bladder, I had the swings you describe between constipation and diarrhea. I used loperimide (Immodium) for the diarrhea and docusate (Colace is best known brand name) stool softener for constipation. Over time, the surgery must have worked well, because the diarrhea has almost disappeared and I can handle the constipation with high doses of probiotic and lots of water most of the time. Patients like us have to investigate all available options.

    • Hey, Cy… sorry I fell out of touch with you 🙂 I keep thinking to myself about what kind of fish you might be catching right now. 🙂 Any how, yeah… MOM is a wonder drug! – LOL – My oncologist and me were joking about it in his office. So, probiotics work for you ? Somebody gave me a pack but I didn’t understand them so, they’re still on my kitchen counter. 🙂 Yes, I think patients like us don’t know others are out there because there is a big focus on patients with carcinoid syndrome. So, I think we slip through the cracks a bit. Hopefully, less of us now 🙂

      • I told a physician’s assistant in my oncologist’s office that I had started eating yogurt because it was supposed to help constipation. She said that a helping a yogurt did not contain nearly enough probiotic. She told me that I needed to take capsules with 30 to 40 billion organisms. After a month with retail capsules from a drug store, which would cost about $35 per month, it worked. I now buy them from a vendor on Ebay for about $15 for two months and they work.

  4. What a great explanation of the varying degrees of Syndrome, that NO one else has answered for me! I don’t flush, and the other “classics” I only lightly manifest (more on that in a sec) — so I’m told I don’t have it, although I know I do. (You know, how we Know…) The ONE symptom I “oblige” with is chronic diarrhea — until I decide to be constipated. Which is a no-no of a scenario. I thought about Milk of Mag, my mom’s old standby — the thought of the taste kept me from walking that aisle. Your share has helped me realize — you gotta Doo what you gotta Doo. (Sorry. I had to.)

    • You know, that’s why I decided to post this. We were all chatting on Facebook and I realized that I had valuable information that I wanted to pass along. 🙂 Yes, Milk of Magnesia’s taste will definitely make you skip that isle!! 😀 BUT, it really works good so…. you gotta Doo what you gotta Doo! – LOL

  5. I like how you wrote this. All sounds like me in many ways. The conversations among NET patients can become very interesting. We all need to talk & share. I have learned lots from others with this. Thanks for writing this blog.

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