Untoward Exits

Hello!
A friend, Tammy Schuman, who blogs from the perspective of living with Spinocerebellar Ataxia (SCA), graciously allowed me to reblog her post. With Ataxia, a person may have problems with coordination because parts of the nervous system that control movement and balance are affected.

Through her blog, Tammy shares her experiences and observations about her condition. What I like about this post is Tammy’s description of the day-to-day challenges of managing simple bodily functions with Ataxia. During the most painful and uncomfortable days of my cancer treatments, I had many of the same thoughts, panics and frustrations that she describes.

This is my first attempt at re-blogging someone else’s post, I hope it works!

Update – a few minutes later:

Well, it didn’t work, and it should have,  and I’m not sure why, and it’s late. Here is a link to Tammy’s post.

Untoward Exits

Whether it’s poop, pee, gas, snot or saliva––I’d like to choose when, in whose presence, and where it exits. Ah well…such is the life of an Ataxian. Fortunately, I have understanding family and friends. Another reason I love Skeeter–she doesn’t care how gross I am.

I watched a movie the other night (of course). Harry Belafonte’s character and Anthony Hopkin’s character were having a drink and trading barbs about the effects of aging.

Harry Belafonte: “At least I don’t have to get up three times a night to pee.”

Anthony Hopkins: “At least I get up.”

I’m not quite that bad, but I’ve come to look at the bowel and bladder more globally, like the nose and throat–increased sensitivity. I haven’t had major issues yet, but I sense they are coming. Perhaps it’s advancing age or the Ataxia, but I’ve noticed increased bladder sensitivity and decreased capacity. I’ve always had a capacity less than many people, particularly males. Like I needed to get worse? Lying awake at 2 am, trying to convince myself to just go back to sleep, is a waste of time. Get up, don’t fall and just do it, Tam (don’t think this is what Nike had in mind).

Consequent to the increased sensitivity, I (probably most people already know this):

–Avoid large volumes of fluid from early evening on (tea, caffeine, and wine are big offenders). I do have to get my wine in though.

–Go to the bathroom before bed (duh)

http://www.keepcalm-o-matic.co.uk/guide-to-keep-calm

–Get up during the night whether or not I feel the urge.

–Hit the bathroom before I need to; Not having the “not now” ability I used to, I don’t dawdle.

–Never pass up a bathroom (duh).

–Never get into a car without going to the bathroom (double duh)

Depends, Rely, Dignity, Sillhouette? Nice try at confidence branding (that ship has sailed). The various products out there make me much easier to rescue on a long scoot, should I underestimate my bladder capacity. One thing about Ataxians that indirectly affects “untoward exits”. First of all, hurrying puts us at greater risk for falling. Secondly, we just don’t move as skillfully as we used to. Consequently, we have to compensate using some anticipation, rather than shouting “Get out of my way!” Now THAT’S embarrassing.

I go before Earl occupies the bathroom, before the grandchildren wake up and come in our room, before guests arrive, before getting on a plane, before going out–before just about anything.

The lesson: Go to the bathroom, blow your nose, check your teeth–Just do it. And have understanding friends.

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WELLNESS WITH A POT BELLY

Wellness has arrived along with fall, however there is a pot belly bulging underneath my shirt that will need another surgery. Ugh!

Pot_Belly_Wellness

Really, it’s not what you think.

I arrived home in Portland, Oregon on Tuesday after 1-1/2 weeks of travel up the west coast touring small towns and visiting friends. As soon as we hit the Redwood Forest, it struck me how much I missed the Pacific Northwest. The trees climbed taller and grew denser, enclosing the road ahead of me. The sun peaked between the branches, shimmering like gold glitter. My heart met the scene with excitement and inspiration. I’ve been away too long.

I feel great. Everyone who knows me says I look better *now* than I ever have. In spite of nearly seven months of cancer treatments, I suppose being free from illness means feeling elation, enthusiasm, pride and gratitude reflects in my outward appearance. Truthfully, if you woke me from a nap right now, I’d say it never happened.

But I get reminders every once in a while. For example, when I overexert myself, I spend about two days with diarrhea, a product of post-surgical inflammation. Also, I have this pot belly that I’m told will not go away on its own. Right underneath all the scars, the pot belly sticks out about three inches from my musculature, making it conspicuous. It is tough, and about eight inches in diameter, my belly button centered perfectly. No pain, so I would not know that it’s there, unless I look at it. Some would say it looks as though I’m 3 months pregnant, that is not the case.

The doctor called it a diastasis. This is commonly associated with pregnancy as a side-effect. It means that the muscles (in my case, in the abdomen) have split apart, everything behind is pushing out between them. The surgery should be a simple, laparoscopic and cosmetic procedure where a mesh is inserted behind the abdominal muscles to hold back the protruding guts. These next few months will be spent healing from the most recent surgery, then the cosmetic surgery will be discussed and scheduled.

In the meantime, I will enjoy wellness and giggle when you poke me in the tummy.

pillsbury_doughboy

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!

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?

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?

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

ENERGETICALLY CHALLENGED

Nearly one month post-op, how energetically challenged am I?

Things continue to improve with my energy and aches. I’m down to one rest time per day, depending on the activity level of the day. Lately we have been busy, which has been good exercise for my energy. Typically, after a couple of hours of activity, I get tired, achy and cranky. If I can nap for 30 minutes, then I’m fine! But I’ve been tested lately:

Hiking the Malibu HILLS

First, Matt and I have been taking short hikes in the hills. Malibu has HILLS. These hills were previously a real pleasure, always a relaxing, calming, thoughtful time to spend in nature. Currently, these hills are taunting to me. I can only look at the ground in front of my feet and exhaustively move myself forward and long for home. Ha! What a change!

Company

didj-jam

The boys. Matt is leading with didjeridoo out of the frame.

Matt coordinated a dear friend to come for a long over-due overnighter at the property. Sunday, Father’s Day, Ted was to come visit. Between the day plans were made with Ted and Sunday, we suddenly had a group of five outrageous guys: two “old Jews”, an Irishman, a Canadian and a son-of-a-Jew. Altogether a loud and delightfully quirky bunch. I swore off assisting too much with this party. As any party entertainer knows how much effort it is to have a party. Add to that, a party with no house to entertain in. I just knew it would flatten me by evening’s end. I had already done a short morning hike with Matt and a volunteer trip to the grocery store for some odds and ends.

The party arrived. This is where Matt excels, working the crowd, keeping everyone good and entertained all evening. Naturally, I liked everybody and enjoyed the banter, yet found myself during conversations wishing there was a stool for me nearby.

Problem child: the Bag

ileostomy_bag

example ileostomy bag

The sun was down, and the boys were thinking about beginning to start the barbie, and what do you know… My ileostomy bag separates from my skin, and I’m leaking intestinal contents. BAAAH! Nice timing! Holding my bag against my belly to contain contents, I signalled Matt (who was joyfully inebriated by now) to tell him that I needed to disappear for a while to get my new bag in place, and not to worry. He insists on helping me with this every time, so fine. My routine is to:

1) Empty bag into toilet
2) Strip from skin
3) Throw bag on shower floor
4) Step in shower and hose off…

The stoma will NOT STOP POOPING! Unbelievable. Every single time the bag comes off, the stoma celebrates its liberation. Poop, poop, poop. So finally I get out of the shower with a tissue over the stoma, lay down among my towels and all supplies, and wait for Matt to fashion the stoma hole in the adhesive patch and press it, not gently, onto my surgery site. He compassionately took this time out to do this for me, and then rested his head tenderly over my lap for a few moments after it was all done. Back to the party.

After dinner was done our Jew and Irishman friends went home. A good time was had by all! But, I was FINISHED, and could hardly see straight from fatigue. I did some cursory clean up, putting food away, then said good night to Ted and Matt. They agreed to clean the dishes to discourage any wild animals from poking about during the night. And then I was out.

Three hours later, Matt comes in. He and Ted had continued their rowdy-boy festivities (but I did hear them wash the dishes, yippee!). The next morning, I was thankful to have had only two beers early the night before and feel rested and whole! Matt’s Monday morning started out slowly and painfully, and could not account for how many beers he had imbibed! He tied one on!

Lesson: occasionally endure discomfort to allow your partner play-therapy.

Visiting the Daughter

Then, Matt’s daughter Chloe called. This was to be the day she flies to Australia with her fiance for an indefinite amount of time, and would we like to meet her in town to go shopping!

So, we saw Ted off and scrambled to get out the gate to meet Chloe in town. With Chloe we drove around town helping mark off her to-do list to prepare for the flight to Australia! After a full afternoon with Chloe, I still had to go to the pharmacy and the bank, which took an unimaginably long time before getting back home.

And Finally…

The following day, Tuesday, was another trip to town for a doctor appointment, grocery shopping and Matt’s business meeting. As usual, I started off charged, then quickly lost internal battery power. Now we finally have some days off! Matt and I have no place to be until Saturday, so until then, this is where you’ll find me!

A tentative surgery date is scheduled for Wednesday July 11, 8:00am. Until then, each day I will be less energetically challenged!

DAY 7 – STOMA REVISION

Stoma Revision: Fasting for the second operation, started at 2:00am.

I was now counting hours until the new procedure was to take place. The doctor came in to my room while Matt was getting coffee at the cafeteria. I had already hit the PCA (Dilaudid) button twice to relieve some discomfort and awoke from a deep nap, and in her frenetic pace, she began to overwhelm me with scenarios about solving the stoma problem, then laid out my risks and said she would have waivers for me to sign. I felt helpless because it seemed (in my drugged stupor) like a scattered conversation, and like a lot of information was coming at me that I couldn’t keep track of, yet still had to consent to. Then she was gone.

When Matt walked in, I broke down and told him I felt worried now. I recounted what I could remember about the hurried conversation, and questioned whether the doctor was feeling confident about operating on me. He firmly reassured me that the doctor was highly experienced with all things abdomen, and pointed out that I was not in the best condition to be receiving the information and he wished he had been there. I said I would feel better if I consulted with our family friend, a Portland surgeon, Earl.

Dr. Earl Schuman has been in on my story since diagnosis when my parents strongly recommended I consult his expertise. He was very forthcoming with advice and offered his support in any way. I was way more together when I explained the situation in detail, and ask his advice. He listened quietly, then assured me that the complication was very common, the doctor is very adept in her expertise, and everything that was happening was within good reason (he was more eloquent). Voila, 2nd opinion. That set my confidence.

Then, I was headed in…

Then I woke up…

The lights of the OR were garish and the staff flitted around the OR talking like chipmonks. I could barely make out what they were saying, trying to see straight, wanting to meet the strange creatures that swirled around the abyss behind my eyes. It was over.

It all went smoothly, of course. The operation lasted from 1:30-4:00pm. I had a new pain in my abdomen, but felt more in charge of my body than after the first surgery. The deed was done! Now it was on to waiting for the anesthesia to wear off, for the ‘plumbing’ to wake again and for sounds to come from the new stoma!

The rest of the day passed, and the next day I waited, then around dinner time, I heard a toot! I flipped up my hospital gown and looked down. Well, I’ll be.. I saw it move! My dinner was sitting there on the counter, untouched until then, so I grabbed a fork and took pecks of mashed potatoes, chicken, chowder, and chewed really well, then went back to bed to wait. An hour later, more noise, and the bag showed residue. Bingo! More dinner. I ate with glee! It had been 9 days since beginning my initial fast until I can finally EAT!

Hercules! This was recovery!

DAY 6 POST OP – ROLLER COASTER OF HEALING

Roller coaster of healing: I just did a loop de loop.

Let’s see, how much description is appropriate here in a blog with mixed audience… This gets pretty graphic.

The continued blockage from the stoma was making me extraordinarily uncomfortable. Matt came back from his routine evening walk, and decided to do something about it.

We put a call into the surgeon. The nurse reported, “Dr Childs said this is still not out of the realm of normal healing behavior”. Matt crumbled. “I want you to go back and get the doctor on the phone, I want to talk to her right now,” in angry bear tone. She did. The doctor was about to go into surgery on an emergency appendectomy, but she could come to my room in an hour.

The previous day

The doctor had come up with a method to avoid my nausea and vomiting until any swelling within the abdomen could go down, by manually draining the stoma. Using a clear surgical tubing (like that of an IV line) as a stint, Dr. Childs threaded the tubing through the stoma opening and 8 inches into the intestine to draw the fluid into the bag. When this method worked, she endowed Matt with the power to do this for me every time I felt ill. It was pretty gross, but it worked, with some effort. This allowed me to get some much needed protein into my body and some relief. I began taking in a low-residue, soft food diet. Ahhhhhh.

Then problems began. When the food I ingested came to the stoma, it would gum up the tube, then block things up again. Matt would have to remove the tube, clean it out, then reinsert it. (What a guy, SERIOUSLY goes above and beyond what any partner *should* have to do.)

Back to now

This tube was just too small to handle the texture of the fluid coming out, and would get clogged. So both of us losing patience and me in complete misery, Matt looked around to what else he could find to make a better tube to drain. He found some fatter packaged surgical tubing. I looked at this and a BIG question mark came up in my head – will that fit my intestine? Sure it will, he insisted, and began fashioning the perfect stoma drainage tube.

I looked away as he pushed the tube through the stoma, then increasingly through my intestine. Yep, that worked, and fluid came, and came, and came, but ooh, what was it doing to my little intestine!!

Satisfied with the results of the new and improved tube, but me still in major discomfort, the doctor appeared at the door (and a 1/2 hour early!).

That’s where the next adventure began!

Matt explained the events, and Dr. Childs knelt down to take a look at the student’s work. She said, yeah, ok, this isn’t the right tube to be using; let me get an anal catheter tube. She disappeared and emerged again with the exact tube, and did her own work on trimming it to size. Then out came Matt’s and in went Dr. Childs’.

I can’t begin to express my feelings, I am just biting my lip as a witness to all this happening to my body! So, that one didn’t work so well, and Matt’s was the wrong kind of tube. So much discomfort, the doctor advised to revert back to the small tube, and keep manually draining every few hours. She would schedule me for an operation the next day to go in and fix the issue.

That’s where this day ends, and the next adventure begins…

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