BALANCING THE BOWELS

The next chapter in colorectal cancer recovery is: Balancing the Bowels.

salad-high-residue-diet-livestrong

Not OK on low residue diet

cupcake_low_residue_livestrong

OK on the low residue diet

I wish I could say recovery has gone well, but it has been quite bumpy. I’m frankly getting worn down to the wick and frustrated. The biggest problem is that I’m too healthy! Yeah! My bowels aren’t tolerating my healthy diet!

At first it helped. High fiber foods, basically what Matt & I keep in the kitchen, are whole grains, fresh vegetables, etc. These were helping my system loosen up, but now it’s a curse and I need more refined foods,  like white bread, white rice, bakery foods, etc. All stuff we stay away from as a rule. On top of the diet is the medication – antibiotics, pain relievers and supplements, which all throw a monkey wrench into the machinery.

And I still need more rest. I am trying to take on some simple chores, such as grocery shopping, but afterward I am punished with debilitating cramping and fatigue.

This is a phase that I ‘just have to get through’; part of the healing. Matt is trying to adapt to my ever-changing needs, and is an amazingly compassionate and attentive partner, but at some point the caretaker, as the patient, gets worn down. Matt & I are looking forward to moving on to the ‘next phase’ of our lives, and to our trip north.

Currently, I have a couple of great books, and plenty of time to sit still and read them – such a rarity for a ‘well person’!

When the bowels are balanced, we will be enjoying friends again. Until then, it’s rest and relaxation!

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STITCH INFECTION

From a gastrointestinal hold-up to… a stitch infection?

By Friday I was on the phone with the doctor again, the skin had turned red with a burning soreness from which I could not escape. She said the stitches need to come out. My next appointment with her wasn’t for five more days, so she called in a prescription for antibiotics, and said, if it doesn’t get better, she will meet me over the weekend to remove the stitches. At that moment, all I wanted was pain relief, so I began the antibiotics… along with more Ibuprofen.

By the next day I felt somewhat relieved, so Saturday was just a regular day at home; resting, reading, cooking, chores… By evening Matt and I were preparing dinner, and we were working out a disagreement. Matt was feeling I have been inattentive recently toward him, and I pointed out that I have not expressed to him how much pain and discomfort I have been tolerating, nor my secret concerns that my health would get worse before getting better.

Matt suddenly looked at my stomach intently and asked, “What’s that wet spot on your shirt?” Immediately I thought, Oh no, what now? I lifted my shirt and from the reddened skin and stitches oozed a mucous substance.

Oh my poor body!

As with so many times before, I had no idea what to make of this. Both Matt and I have been feeling worn out from these mysterious and worrisome episodes. Matt’s expression had softened and now showed severe concern. He got up and wetted a tissue with alcohol and rubbed the fluid away from my stitches. I vowed to call Dr. Childs the next morning.

After communicating the symptoms over the phone, Dr. Childs gave two options, I could drive in and have the stitches removed immediately (she was already at the office on a Sunday morning), or since it was not an emergency, I could wait and drive in Monday morning. I said, “I’ll come in now,” thank you. Yeah, let’s get this dun!

The good news is, Dr. Childs confirmed that the fluid was draining “as it should”, this happens, not to everybody, but is very common with soft tissue surgeries. The seroma, as it is termed, will have to drain and heal on it’s own time.

Whew! Stitches out, seroma relieved. Now I have a patch on my belly that absorbs seroma fluid. Because gauze pads are expensive, the doctor recommended feminine mini-pads will work just as well at a lower price. So be it, a mini-pad on my abdomen and daily flushing with a syringe of water (yuck!) will do just fine.

Today: Relief = comfort = concentration = happy Michelle = happy Matt!

mini-pad-feminine

WEEK 1 – POST TAKE DOWN

One week post take down, still waiting to exhale.

Well, it has been 1 1/2 weeks since the last surgery, the ileostomy take down. The relief of knowing that I am finished with treatments and surgeries indefinitely is blissful, on one level. Here and now, and I wish I could say differently, it ain’t so smooth.

Stuffed_Sausage_feeling

mmm… sausage…

Beginning from hospital discharge (a week ago Friday), my health was powering on better than expectation, and my optimism showed it. Later that night, my bowels slowed, then stopped. For days I did not have a bowel movement. So I was in pain from the surgery, pain from stubborn muscle spasms in my back, and my digestive tract was filling up like a stuffed sausage.

I consulted some online forums, and evaluated the home treatment options (remember I am sick a 40 minute drive from any pharmacy), and did everything that I thought would give me relief; extra fluids, walking, moving, stretching… I thought, “Maybe this is a blockage!”. When inflammation or scar tissue constricts the passage of waste in the digestive tract, then I go back to Day 3 Post-Op and everything I take in comes back up. So now my stomach is distended, I’m cramping all over, and I am anxious, too.

I called my doctor Monday morning wondering what to do next. Her suggestions: Milk of Magnesia, anything with Magnesium citrate, lots of fluids, eat high-residue foods (Really? Eat more?), move around. The next day, I wasn’t feeling any better, and she agreed to fit in an appointment Tuesday.

Tuesday, I can’t go into detail here to spare some gruesome details, also to block the memories from my mind. Essentially, I got an exam and a mini flush of the colon. And my bowels began to let loose. Whew! Hoping for the best, I hauled my tired a** home with Matt and a bottle of Milk of Magnesia (ick).

And so the pendulum swings in the other direction.

Now the stools were water. Lots and lots of water.

After about a day and a half, that behavior halted. I felt relief inside.

Then my stitches began feeling sore. This takes me back to the earlier blog “What Next?

WAS THE J-POUCH SURGERY SUCCESSFUL?

Yes! Successful J-Pouch Surgery!

Matt & I are celebrating many things:

– Successful j-pouch surgery!

– Successful bowel movements!

– Shedding of all bags and tubes!

– Early discharge from the hospital!

I am outta here!

Good bye $500 per night room (which we got bumped to for free).

Good bye all-white hospital meals (which you look forward to when you’re hungry and weak).

Good bye lovely nurses who take vitals every 6 hours.

Good bye beds that heave and machines that go beep during the night.

Hospital-food-white

White hospital food

My blessings to all who continue to fight for their lives and are forever entrenched in the medical system. At the hospital I met and saw many, and am familiar with lonely and dreary days when you don’t know when you will go home.

Upon leaving the building, I will be on track to an active, low-stress lifestyle.

TWO BAGS DOWN, ONE TO GO

Two bags down:

Ileostomy bag – removed at surgery. Urine bag came with the surgery – removed this morning. One last bag, the IV, should be gone by Saturday. J-pouch (new rectum) – soon to come online.

I’m here at the hospital and recovering in peace and comfort. I was upgraded to a first class suite because the oncology ward was full. Nicer colors, nicer art, quiet and peaceful. The liquid diet so far is settling, and I should expect my lower bowels to be working by later today or tomorrow. The only question with that happening is if a blockage develops in the intestines at the new seam. So far, no sign. Yippee!

creamy_mush_liquid_diet

Creamy mush

Much better than last time, this procedure was far less invasive, only dealing with turning the ileostomy back in and reattaching it to the lower intestine, all done laparoscopically (through a little tiny hole in the abdomen). The whole procedure went smoothly. There were a few bouts of nausea and some pain until the medications were balanced, and now feel quite energetic. I’m on to “full liquids”, meaning creamy stuff and mush.

What do they put in this stuff? It’s not the creamy mush my mom used to make.

Back pain of the previous few days has subsided, yet turned into back discomfort from lying in bed for too long. I’ll take it, the discomfort is better than the pain was! Compression socks inflate around my legs every few seconds to keep my blood vessels from clotting, and I exercise my lungs with one of these:

spirometer_inhale_exercises

Spirometer

The incentive spirometer is assigned to exercise the lungs after a patient wakes up from anesthesia. The lungs have a tendency to fill with fluid, then develop bacteria which causes pneumonia if they are not exercised. I use this crazy-looking device every hour by inhaling air from the tube.

So, the update for the first day is: doing good!!!

Looking forward to shedding the last ‘bag’ (IV) and to using the new ‘j-pouch’ (new rectum)!

post_op_recovery

Hello everybody!

UNPLANNED EXAM: WHAT NEXT?

Dashed into town today for an unplanned exam: What Next?

Yes, the surgery is on.

kidney-back-pain

Kidneys

Since Friday after my enema contrast exam, I had been suffering from some pretty severe back pains. They would come and go, but when the pain came on, it was miserable, nearly to the crying point. Last night I had a bad feeling that these pains were actually in my kidney, because it wasn’t my back that was hurting, but just to the left at the edge of the rib cage, right where one would place a kidney.

So at 11 at night, I was online looking up kidney ailments and causes for kidney ailments. Could it have been the contrast enema on Friday? The multitudinous daily supplements? All the electrolyte water I’m drinking? PMS? A pinched nerve? I thought I must be alright, but I couldn’t be sure, and I have surgery scheduled early Wednesday morning.

I called the doctor this morning to tell her of my suspicions, and she felt it best to get a scan done to make sure I’m ready for the surgery tomorrow. She got me in at the imaging center this afternoon, so I drove in alone and had a CT of my abdomen and pelvis, and all results came back clear. It must be a muscle spasm, but I sure wanted to be well going in to surgery. So now I know, and I know that I am ready for the next surgery, very ready!

All chemicals are being banished from my body now. Rather than the happy hour with Audrey & Roxanne that I had planned, I’m just going to rest.

I’ve read other peoples’ horror stories about unplanned and unwanted events, and to tell you the truth,

I’m glad I have my problems rather than some of those others. But what next?

POOP SACK

What to do with an old poop sack (ie. ostomy bag)

In the morning, I get out of bed and start a few early chores, putting away dried dishes, getting bananas for Matt & I, taking supplement pills… Usually, I have a 1/2 full ostomy bag dangling from my abdomen (see earlier post, Energetically Challenged).

This morning I came back to bed chuckling about a poop story I had to tell to Matt:

Years ago, I was hiking with my good friend Dan. It was a beautiful day at Oregon Coast’s Saddle Mountain, and we were just heading down hill from the summit when a dog (don’t ask me what kind, kind of medium-sized), came trotting merrily up the path toward us. As he got closer, Dan and I noticed that around its neck was a sack of its own poop. Neither of us said anything, but stared as it trotted by completely oblivious to us. I think we were both thinking, “Huh, that seems kind of cruel”. The next moment, we saw the dog’s owner hiking up the path toward us and as he passed, he said,

“Don’t tell him, he doesn’t know.”

Dan and I busted up laughing the entire way down the hill. And that’s what the feeling of my bag’s fullness reminds me of, that happy pooch trotting up the path to the summit.

Well, I don’t feel happy with a full bag, but I guess that’s because *I KNOW*.

Early on, I went through a lot of ostomy bags. There’s a bit of a learning curve to get the ‘appliance exchange’ just right, plus I had a complication which caused the bags to unstick prematurely and need frequent replacement. Matt was doing all the changes. Bless him. He insisted that he wanted to be the nurse. Right away, I began noticing empty ostomy bags laying out in the dirt, baking in the sun.

I’ve got an unusual guy.

…Matt? What are my old bags doing in the dirt, baking in the sun? (I’ve known Matt long enough, I already knew the answer). Explanation: The sun kills everything, so the UV rays will sterilize any residue in the bag, and then we’ll just throw it in the trash.

Still, after a week or two, seeing a garden of these sun-baking poop bags in the dirt made me smile over my Nurse Matt.

EXAM: J-POUCH FITNESS

Next test to pass: J-pouch Fitness

Matt & I left this morning for an imaging appointment at the hospital. Today we anticipated a test of the fitness of my j-pouch, ie, newly created rectum, over one month since surgery. Assuming all goes well, the surgery on Wednesday will reverse my ileostomy and reconnect my lower plumbing.

j-pouch-drawing

j-pouch, new rectum

I began fasting after dinner last night. I was a little frustrated at the tardy message on my cell phone this morning from the imaging office telling me that I must fast AND do a “prep kit” — was I told about any prep kit? No, no instruction on that! Fortunately, when I called the office they permitted the exam anyway. Thank goodness, because Matt & I had already driven half way there. (Later, I learned that this prep kit was only an at-home enema – and what’s that going to do? I haven’t been using that part of my body for six weeks. There’s nothing in there. Note: do your homework, people, when it comes to medical care some things asked of you are just unnecessary. And sometimes not enough, so a patient has to really be ‘on’.)

I digress… I checked in at the hospital for the the X ray. Results for this contrast exam will tell me how I healed from the last surgery, specifically how the j-pouch healed, whether there are leaks or breaches.

gastrografin-contrast-xray

Contrast X ray

This one is an enema of  gastrografin, a solution that gets injected into my rectum through a tube with a balloon at the end of it. The balloon keeps the tube in place, and the solution floods my GI system, and shows any leaks or breaches in the surgical seams.

The good news came as I was watching real-time my skeleton and intestines/colon on a TV screen. The imaging tech said, “Nope, no leaks. Everything looks fine”. The assistant tech, named Fabio (I kid you not) began undoing the tubes.

“Ok,” Fabio said, “Here are some fresh robes, a stack of towels and your clothes. When you get up, some people drip down their legs, so use these towels when you walk over to the restroom.” (I had my own private bathroom for an hour).

“How long does it take for this stuff to come out?” I asked, wondering how long I would be sitting on the toilet.

“Oh it varies for people,” he replied. Of course it does. “You can stay in the restroom if you want, or go into the dressing room”. Ok…

What he didn’t tell me, that I didn’t know, is that it doesn’t all come out right away. When it stops draining, there will be more. I got as much out as I thought I could, got dressed, and said goodbye to Fabio. I walked out to the lobby and called Matt to pick me up.

THEN the cramping started. I knew there was a restroom near the lobby. I ran in there, thank goodness no line!! Some more draining. I finished and moved back to the lobby. More cramping… back to the restroom, no line. Again, back to the lobby. Cramping, restroom – this time I couldn’t make it and leaked in my pants. I cursed Fabio the whole time for not educating me… Argh! By the time Matt got there with the car, I was crying from frustration, discomfort and concern that I would leak in the car. But the urgency had dissipated. Still I was evacuating liquid all day, although less and less.

With the news of the healed surgery, I will soon exchange a bag for a pouch, or an ostomy for a j-pouch.

And with that, a mix of relief and anxiety over how the j-pouch, ie. brand new rectum, will work for me.

fabio

Fabio

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