Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, December 28, 2012

Extended Hospital Stay

  ileus = blockage of the intestinal tract with absence of physical obstruction due to lack of propulsive action of the bowels  

Well here it is, sixteen days post-op, and I am still in the hospital.  There has been a lot of back and forth, but I think I am finally steadily headed in the right direction and will probably be going home soon.  Here is the scoop on the last week and a half since my last post...

After that bad episode with the ileus, they tried to put me on clear liquids and then full liquids again, and I had the same problem:  nothing passing through, excessive belching, bloated/distended belly, and eventually heartburn that turned into nausea that turned into spewing black-green digestive juices out both ends uncontrollably, easing up a bit by morning.  I think at that point I may have also been running a bit of a fever.  The vomiting was brief, but it was so violent (a LOT came out) that it strained my ab muscles, which caused me a significant amount of pain for the next couple days.  I was spent, sore, and starting to get into a "give up" mind-frame.  On Wednesday, the 19th, they did a chest X-ray (to check for chest infection) and a CT scan to try and figure out why my bowels were not functioning properly.

I had been resisting the NG tube this whole time because frankly, it just sounds awful: a tube up your nose, down your throat, and into your stomach.  And you can feel it there; it makes it difficult to talk or swallow.  The purpose of the NG tube, though, is to suck all the nasty digestive juices out of the stomach and upper small intestine that causes one to feel so sick and bring some relief and rest to the GI tract from having to try to pass and deal with all of it.  Other people on who have had it said that although the tube itself is unpleasant, it brought instant releif from the symptoms, and my surgeon said that it could help resolve this ileus issue.  So when I could tell it was starting to happen again the next night, I told them to put the NG tube in before I started vomiting again.

NG tube = no fun!!
I'm not going to go into excessive detail about my experience with the NG tube here because I believe I had a particularly bad experience that is very atypical, and I don't want to scare anyone off of using one themselves.  I think the main problem is that they chose a size of tube that was too big.  But basically it was extremely painful and traumatic going in (felt like it were breaking through some area of my nasal cavity that it shouldn't go - just felt wrong - but they busted through anyway); it was painful while it was in (couldn't talk or swallow, could feel it down my throat and in my belly all sore); and it was even more painful and traumatic coming out.  It got stuck in the same spot, and the nurse had to pull very hard (three times) to get it out my nose.  She is quite experienced with these things and says that NEVER happens - it usually just slides right out.  (In fact, I have heard from a few people who accidentally knocked them out or sneezed them out.)

I can tell you that there is not much that will take down my drive and positive attitude, but if anything could do it, it was my experience with the NG tube.  It broke my spirit.  Took the life out of me.  But it did its job and got the sickness out.  It was in and sucking nasty bile out of me for three days before it finally started running clear and was no longer needed.  It was removed at 2:00 AM on Sunday, so four and a half days ago.

My PICC line: an IV line that goes up my arm and into my
chest near my heart to most effectively deliver the multitude
of meds and nutrition I'm getting pumped into me.
I was very happy to have the tube out, but after that traumatic experience, my heart rate was elevated, and my body spiked a bit of a fever again (101.5), which had me feeling pretty awful, but it died down to 99.5 pretty quickly and stayed there for a day or so.  The following morning my white blood count was elevated, and the doctors noticed a build-up of fluid in my abdomen on my last CT scan.  So before I could progress with diet or anything else, they had to get to the root of what appeared to be an infection of some sort.  The solution for this was to insert a drainage tube into my abdomen to drain the excess fluid and start me on antibiotics.  The antibiotics I could care less about: sure, I have an infection - throw 'em in the mix.  The drianage tube, on the other hand, I was not at all looking forward to.  But it was unavoidable; they had to get the fluid out because it wasn't absorbing on its own.

The plethora of meds and nutrition running
 into me via the PICC line.  The number
of bags goes up and down throughout the day.
Because it was a holiday, they had to bring in an on-call team to do it, so by the time the team got here and ready it was 10:00 PM on Christmas eve.  Once I got down there, they told me I would actually be getting two drainage tubes in, one on each side.  Great - double the joy.  After they did another CT scan to find exactly where the abscess was, they marked the spots on my belly and got to work.  Now, normally when the hospital is fully staffed, they would sedate me with lots of drugs so I would be practically unconscious and not feeling much.  However, because they did not have the proper nurses to watch me closely afterwards in the recovery area before being wheeled back to my room (the only one there had to rush off to another on-call emergency), they were not able to sedate me.  They gave me a small amount of Fentonyl  (pain-killer) through my IV, but my tolerance for those types of pain-killers is pretty high by now, and I was fully awake and aware through all of it.  They did give me some local anesthetic, and I'm sure it would have been much worse without that, but I could still feel everything they did to me, and it hurt.  A lot.  There was one guy on each side of me working simultaneously on each drain.  They started by inserting long needles into my abdomen.  Then they ran wires in and retracted the needles, and then they shoved the tubing in around the wire and situated it were it was supposed to go before taking the wire out.  Finally, they stitched the tubes in place on my sides and applied the dressing.   They removed 200 mL of fluid from the left side and 100 mL from the right side (taking samples to send to the lab of course) before attaching the bulbs at the end of the tubes that would collect the fluid as they continued to drain.  All around, another pretty traumatic experience.

The next morning, I woke up in quite a bit of pain from the drain sites, and it felt like was back where I was after surgery one - unable to move or use my abs, needing a lot of assistance to get out of bed, etc.  What was coming out of my right drain looked pretty normal (yellowish-tinted clear fluid) and minimal, but what's been coming out of the left drain is nasty, stinky, milky/pussy fluid that is obviously coming from wherever the the infection must be, so it's a good thing we're getting it out of me.  Over the course of that day (Christmas) the pain from the drainage tubes slowly died down a bit, and with the use of my pain pump I was able to be pretty comfortable as long as I was laying in bed and would just feel pretty sore when I tried to get up or down.  Over the next few days it very slowly got less painful, and today I'm able to get in and out of bed without too much trouble.  I've been on antibiotics since then, and all of my vitals have returned to normal.  The last couple days I have actually been feeling pretty good.

Right after I had the drains inserted, I almost seemed to have a bit of a speed bump again with my GI tract on Christmas day: belching, a bit of nausea (which I still attribute to the high doses of Dilaudid I kept myself on that day), nothing (no gas or fluid) coming out down below, bloated/distended belly.  But with a little walking and some hot-packs, things started moving that evening, and by nightfall turned into a "mass exodus" with me farting up a storm for a couple hours and then draining everything out of me like a faucet (going to the bathroom non-stop).  There was a point in the night where I just plugged my IV cart into the outlet in the bathroom and hung out on the toilet for an hour or so because I was tired of going back and forth to the bed.  I didn't get any sleep that night.  But things slowed down as the morning progressed, and I was pretty comfortable yesterday.

Since all my vitals and GI tract function seemed to have returned to normal, yesterday they started me on clear fluids.  (I'd been on either "nothing by mouth" or just ice chips since well before the NG tube, so several days.)  I spent the day reading, walking laps (35 that day), napping, watching Netflix, and sipping on my fluids.  I was comfortable.  Today they progressed me to "full liquids" (soup, yogurt, pudding, etc), and I have felt even better, apparently tolerating and digesting the semi-food just fine.  This evening is when I finally started having BM's that look more like a BM (refried beans) than something an alien would spit out (neon green-black fluid).

My surgeon stopped by today and told me that the next step would be to take me down for another CT scan to see what was going on with the abscess (space where the fluid had been collecting) .  They would insert a little contrast fluid into the drainage tube that is there to see where it would go.  It would either show that the abscess was shrinking and contracting to close up on its own, or it could potentially show where the fluid had been coming from if it shows a path either to my j-pouch or the site where they sewed my stoma closed.  Either way would be useful bits of information, but of course we're hoping for the former so that I can hopefully go home soon.

At any rate, I have been feeling much better and seem to be out of the woods.  If all goes well, they may start me on solid food at some point tomorrow, and as long as the infection site continues to take care of itself and I'm digesting food okay, then I could possibly go home this weekend.  (Fingers crossed.)

Before I sign off, I want to be clear that through all of this - as far as we know - none of the complications I have been through have anything to do with the actual j-pouch.  They are all post-op issues that could come up after any type of major abdominal surgery.  The j-pouch hasn't even had a chance to really show its stuff yet since I haven't really had a chance to digest solid food yet.  So far it's been doing it's job just fine, easily passing whatever comes into it.

Anyway, the important thing now is that I have got my spirit back.  I'm looking forward to my future again - I can't wait to get home and finish my recovery, introduce my j-pouch to new foods, start walking and slowly getting back into my fitness goals.  I am still hopeful and optimistic.

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Sunday, December 16, 2012

Two Steps Back

Me and my dad walking the halls
of UCSF Medical Center.
Well, the takedown surgery itself as well as days one and two went great.  I got my hopes up and thought I would pass through the entire surgery two phase unscathed.  They tell you walk as much as possible to get those bowels to wake up from surgery, so I walked, walked, walked.  Since it was the only thing I had control over that I could help do to progress things forward, I walked every chance I could.  Every couple hours I'd get up and walk a set of laps, increasing over time.  
 "Full liquids" for breakfast.
A few days later, my dad helped calculate the distance of these laps around the hospital floor.  On day one I walked a total of fourteen laps (just over one mile), and days two and three I walked forty-five laps each (three and a half miles).  By the beginning of day three (Friday), bowel movements had just started to come easily and without the need to bear down (as they should), and I progressed from clear liquids to full liquids for breakfast, and to gentle solids by lunch.

However, by Friday evening, I hit trouble.  Big trouble.  I started not feeling well during that afternoon and did not eat my dinner, thinking it was just bad acid reflux from not having the proper dosage of my heartburn meds.  I also hadn't passed any gas since late the night before and was becoming bloated again, and none of my tricks to get things moving were working (rubbing, moving/walking, hot packs, Gas-X, knees-to-chest, etc.)  Well they treated the heartburn, but by late that night I realized it was more than just heartburn and was probably more of a bloating/blockage issue... the food I ate wasn't passing as it should, and neither was the gas.

Trying to sleep through some of the misery.
By the middle of the night I was vomiting green bile and had started what turned into one of the worst nights of my life.  The night nurse gave me something via IV for the nausea, but it didn't help at all.  On top of the vomiting, I have never felt so sick, ever. It was beyond nausea - I can't even explain what it felt like... just all bad, really, really BAD.  It felt like someone had literally dropped a ten-pound dumbbell into my stomach - and when I say "literally," I really mean that's exactly what it felt like; I'm not speaking figuratively.  And I mean DROPPED into my stomach, and it did NOT belong there - needed to come out NOW.  A few hours later after I vomited again, they also gave me something to help push things down and out, so on top of everything else, I had diarrhea of this clearish-greenish bile just spewing out of me... out of control, leaking all over myself and having to get up every couple minutes to hobble to the toilet.  I could get to a semi-tolerable state if I was laying down, but sitting or standing made me feel like I wanted to die... and as soon as I lay still for more than a couple minutes, I had to go to the bathroom again, unplugging and dragging the IV stand behind me each time.  Plus, I was afraid to fall asleep because as soon as I relaxed my muscles, I would leak bile all over myself, soaking the pad in my undies an the chucks pad I was laying on.  I was so miserable and out of it, I was barely responsive to the nurses who came in to try and help.

my bloated belly
The next morning things were somewhat more tolerable. I spent most of the morning sleeping and getting up to use the bathroom when I could.  Back to nothing through the mouth... just sipping on a bit of water here and there.  I was previously told I would be going home that day, but that obviously wasn't happening.  From then on out, it has just been a waiting game.  I spent the rest of the day in that semi-tolerable state with no change at all.  Well, I take that back.  The only change was that since my birth control pills weren't absorbing, I had started my period that day, which is, well.... just brilliant.  Later that night, I allowed them to give me some pain meds by mouth (Norco), and I applied a hot pack to my lower back, which was also starting to hurt.  Between the Norco, the hot pack, listening to some mellow music, and sucking on a hard candy (got the taste of bile out of my mouth without putting anything dangerous in my stomach), I started feeling more comfortable   By the end of day four I was able to rest comfortably and happily for the most part, and now at the end of day five, nothing has really changed since then.  

My stomach is still bloated and distended and feels like there is stuff in there that needs to come out (gas?  bile?), but I am no longer feeling so sick and am in much better spirits.  I'm not passing tons of bile anymore; in fact, bowel movements have slowed down almost to a stand-still.  I've gone twice today, and both times were too tiny to even count as the sample to give to the lab that the doctor requested this morning (but both accompanied by a bit of that hallmark, bright green fluid).  I'm not really in any pain, and I am able to get around and walk some laps when I can without much trouble.  Every time I move from the laying position to the sitting/standing position, I still get that awful shifting weighted feeling in my stomach for a few moments and have to take a minute to gather myself, but the Norco helps with that a bit, and once I'm up and moving, it's not too bad.  If my tummy or back start bothering me much, I can use a hot pack to make them feel better.  I started testing clear liquids earlier today and found I was able to handle them just fine.  In fact, when I drink fluids by mouth, my urine output increases, so I know that they are being at least partially absorbed, which is good.  So even though I am still getting hydration via IV, I have increased my fluid intake slowly throughout the day:  tea, apple juice, broth, jello.  I didn't really do any walking day four since I was so sick, but today I have completed 23 laps so far, which is around a mile and a half.  I might get up to walk one more time before I go to sleep.  

Other j-pouchers on have told me that they went through similar stories, and that what I experienced is paralytic ileus, or basically a blockage due to my intestines still being paralyzed from surgery, not having woken up properly and causing bile to pool up in my stomach and bowels causing the sickness and pain.  According to them, they all had to have an NG tube stuck up their nose, down their throats, and into their stomachs to suck out all the bile in order to make them feel better.  Fortunately, we were able to get things under control here without having to use the NG tube.  

The doctor who spoke with me during rounds this morning said that although this type of pattern is not typical, it is not uncommon. He says it happens one in every eight to ten cases and shouldn't take longer than a couple more days, tops, to resolve. These types of cases seem to make progress at first and then shut down again, and total hospital stay can last seven to eight days instead of the standard three to five.  (Lesson learned: don't progress to solid food until you are passing everything else easily and are absolutely sure you can handle it.)  He said either way they would keep me here until I was able to digest food confidently.  But there is nothing to do except wait for my body to wake up in it's own time.  That and try to still walk as much as I can to help get things going.

Walking more laps with Dad.
So still at the end of day five I am just waiting.  Walking and waiting, walking and waiting.  I'm thinking they will probably progress me to full liquids for breakfast tomorrow, but I'm still not passing gas, which is worrisome.  I don't think I'll feel confident eating any food until I'm passing more gas and/or fluid out my j-pouch and feeling less bloated.  But hey, in the past I have made most of my progress in the middle of the night and wee hours of the morning, so things could be very different five hours from now.  Plus I have heard both from nurses and other j-pouchers who have been through this that once you turn that corner, it's like breaking through a wall, and things are instantly better: passing gas and stool easily and able to digest food pretty much right away.  So who knows - maybe by tomorrow I will be digesting food happily and going home soon.  I will just have to wait and find out... and of course will keep you all posted!

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Wednesday, December 12, 2012

Rocking the Takedown!

  ileostomy = A surgical procedure in which a part of the lower small intestine (ileum) is brought through the abdominal wall and sewn in place on the tummy to create a stoma for the elimination of digested food waste into an external bag.  
  takedown = The surgical reversal of the ileostomy, in this case in order to hook up the newly created and healed j-pouch for use.  

The good thing about the preparation for this takedown surgery is that there is NO BOWEL PREP!  (I.e., a gallon of laxative to clean out your colon.)  Woo-hoo!  Since I only have a small intestine now and no colon, all I have to do is a 24-hour clear liquid diet.  So on Monday I sipped on organic apple-juice and free-range chicken broth.  I also had some blue jello.  They don't like you to eat anything red since it could be mistaken for unidentified bleeding during the surgery.  (Side note: my output that night was bright blue - literally the color you see there in the bowl in the photo to the right.)  My parents showed up that evening, and it was a happy reunion since I was full of health and excitement this time.   (Compared to last time they showed up to take me to the hospital when I was gaunt, sickly, dehydrated, malnourished, anemic, and in severe pain.)

 This is my "I'm gonna rawk this surgery" face.
I checked in to UCSF at 9:30, and since we'd just been through all this pre-op stuff ten weeks before, it was all old hat this time around.  I showed ID and insurance, signed paperwork, answered questions verifying my identity and what procedure I was having done, and was escorted to a pre-op room to change into the hospital gown, stylish blue hair net, and the standard tan-colored, rubber-soled booties.  After my IV was hooked up with just a saline drip to keep me hydrated, we proceeded to wait in the pre-op room for an hour and a half while I laid back on the gurney and my parents kept themselves busy with apps on their phones in between chats with me.

Eventually crews of people came in to introduce themselves: nurses, anesthesia team, residents, and finally my surgeon, who told us the procedure would take anywhere from forty-five minutes to an hour and a half.  Then I was given Versed through my IV as before to calm my nerves; I kissed my parents good-bye and was wheeled into the O.R. at just before noon.  This part was kind of hazy because of the Versed was kicking in, but I remember it taking a little longer than last time.  The nurses and surgical assistants took their time strapping the "seat belt" on me, putting electrodes on my shoulders and sides, putting the gas mask over my mouth and nose.... I remember hearing music on the radio before I blacked out.  Again, it was just like going to sleep.

Getting re-acquainted with
the dilaudid pump.  It was a
happy reunion.  :-)
The next thing I knew, I was waking up in the recovery area.  I looked at the clock on the wall in front of me, which said 2:30, about two and a half hours after my surgery had started.  Within a few minutes of waking up, I felt a localized pain growing bolder right around my incision where my stoma used to be.  When I told the nurse this, she gave me a booster shot of Dilaudid through my IV and showed me how to use the Dilaudid pump button like before, and the pain died down pretty quickly.  Since then it has stayed consistently between a zero and a two (on a scale of one to ten).  So then I just kind of relaxed as they kept an eye on me and checked my vitals occasionally.  I noticed there was no surgical drain coming out of me, no second IV in my other arm, and most importantly, no ileostomy bag!!  Fortunately, my foley catheter worked great from the start this time, so no trouble there - couldn't even really feel it.  From my last surgery I knew to expect this anesthesia recovery timeframe to be about an hour and a half, and when it took longer, they told me the reason was because they were waiting for a clean room.   (The hospital was at capacity.)  At this point I had one of the nurses grab my parents to come back and see me since I knew they'd be concerned by then.

We waited as one-by-one everyone else was wheeled out, and finally I was taken to my room around 5:30 PM.  I liked the room I ended up with better anyway, so I didn't mind waiting.  Last time I was right in front of the nurses' station which was super loud and busy all the time - at that point it was kind of good because a nurse would be in my room in under thirty seconds every time I pushed the call button, and back then when the surgery was way more invasive, I needed a lot more help.  But this surgery was such a breeze that I preferred the privacy of the room tucked way off in the corner, away from all the chaos.  Compared to the last surgery, this one was practically painless.  I haven't had any trouble moving around or reaching for things... just a tiny bit of ache around my incision, but that's to be expected, and it's easily controlled with the Dilaudid pump.  I felt well enough to walk that night and suggested it to the nurse, but it was time for a shift change; nurses were buttoning down for the night, and my mom was headed back to the hotel, so we decided to wait until the next morning for the walk.

I didn't get more than a couple of minutes of sleep at a time that first night because of the electronic leg wrap compressors.  (They are used to increase circulation and prevent blood clots when you're in the lying position for so long after general anesthesia.)  They go off every few minutes, so every time I'd start to drift off, they would turn on to squeeze my legs and wake me up.  So it looked like this: drift, sleep for two minutes, wake up.  Drift, sleep for two minutes, wake up.  What was odd is that every time I drifted off, I started a new dream, so I ended up having like twenty different dream fragments that night, LOL.  I knew to expect this though, and I was okay with it.  Even though I wasn't getting solid sleep, it was restful because the lights were out, my eyes were closed, and I was sedated with the Dilaudid.

All five incision scars are actually "visible" in this photo,
though the laproscopic ones are sort of hard to see,
and one is hiding inside my belly button.
Around five-thirty in the morning I decided to give up on sleep, and that's when the doctors happened to come through for their rounds.  The head doctor asked how I was doing and wanted to see my incision.  I really was feeling spectacularly well for just having had surgery, so I told him I was doing great, and he peeled back the bandage to have a look.

Frankenstitch close-up.  (R.I.P. Stella.)
This is the first time I caught a glimpse as well.  It was a cut about an inch-and-a-half to two inches long, and it was held together with five staples.  It looked kind of Frankenstein-ish.  I knew from my pre-op visit with my surgeon that this incision could not be sealed up with glue since it was not a sterile incision due to being the former location of a waste evacuation site (my stoma).  So aside from the staples holding the skin more or less in place, it needed to be able to drain and breathe.  He had the other doctor (assistant or resident) stay behind to cover it with a new bandage.  This is when I noticed a reaction in my abdomen similar to my last surgery: when certain locations were touched even very lightly around my incision, it would trigger an involuntary response.  Last time it felt like shooting nerve pain; this time it was just a muscle spasm around my incision site.  It didn't really hurt, but it was startling and uncomfortable when the muscles right around my cut clenched up like that uncontrollably, so we did what we could to avoid it by just placing the tape very gently.  I noticed the same reaction later in the day when the nurse pinched the side of my tummy for my heparin shot - it triggered an involuntary spasm on the other side of my belly by my incision.  Very strange.  But it had all just been cut and rearranged a bit, and maybe some wires had been crossed or confused in the process, so I wasn't worried.  I knew it would sort itself out within a day or two.  (Just FYI, this is definitely not a normal response/reaction to this type of surgery, so don't think or expect that it will happen with you if or when you ever get to this point.)

Right after the doctors left is when I started asking the nurses if I could start getting my walks in.   They like you to walk as much as possible to encourage blood flow, proper breathing, and GI motility, which all help in the recovery process.  However, when I brought it up the nurses were in the middle of a shift change, so I  had to wait for them to report out to the new nurses and then for the new nurses to make their rounds.  I would have gone on my own, but they insist that your first time standing up be supervised so they can watch your blood pressure and make sure you don't pass out.  So I didn't get to start walking until around 10:30.  But the good news is that my nurse took the catheter out before she had me stand up.  Yay!!  It is so nice to have that thing out once it's been in for a while.  After taking off the leg compressors, unplugging my IV stand from the wall, and untangling the IV lines from the bed, she supervised as I very slowly sat and stood (the pain meds can kind of rush to your head at this point making you feel dizzy if you're not careful), and then she walked with me for most of my first lap as I held on to my IV stand for extra support.  Once she was convinced I was fine on my own, which I was, she left to go change my bedclothes and set up the "hat" (plastic bowl with wings that sits down in the bowl of the toilet) to catch my urine.  They measure everything that comes out of you during your entire stay.  I walked two laps around the floor on my first time out.

A little bit later my Mom showed up with Christmas lights to tape around my bedside table, a little stuffed Santa and snowman to set up, and Christmas music coming out of her ipad.  It was very sweet, and all the nurses got a big kick out of it.  This will be the first time in a lot of years I won't be able to go visit family for Christmas since I'll be recovering from surgery, so she brought Christmas to me.  Plus, what better Christmas gift could I get than a functioning j-pouch?  After she showed up and finished decorating, we walked three more  laps together.  We did four laps later that afternoon, and finally five on my last round of the day when my father showed up.  (He had been working from his computer at the hotel.)  So I completed fourteen laps altogether on day one.  Walking was pretty comfortable from the beginning, and I was able to stand upright with no problem.  Other than that I spent most of the day relaxing, cruising Facebook, watching a little TV, chatting with my Mom, and dozing here and there.

Because the surgeon needed to shut down my GI tract in order to operate on my intestine, I knew that the first sign of my guts "waking up" after surgery would be passing gas.  That is what the nurses and doctors are always asking about is when you start farting.  This lets them know that the intestine has started functioning again and it is okay to start introducing fluids by mouth, otherwise before that it would just come right back up.  So during the first night after surgery, I was pleased to notice gurgling noises and sensations in my tummy, and at 6:30 AM, I had my first little toot.  This seemed promising, and I started thinking I might be able to eat solid food by the end of the day.

Day one stat board showing my diet as restricted to ice
chips only, and a check-off of all my walks that day.
Unfortunately, the next fart didn't come for another ten hours.  Around 4:00 I was able to pass a couple more little ones, but I could feel there was a lot more gas in my belly waiting to get out.  It was not painful, but it just felt a bit bloated.  So all of the first day I was only allowed to chew on ice, and nothing more.  Around 6:00 in the evening my nurse gave me a half of a cup of chicken broth, which seemed to move things around more in my belly and build the pressure a bit more, but still nothing came out.  By 9:00 it started getting a little uncomfortable, so I told the night nurse, and she brought me a heating pad, which seemed to help a bit.  Then around 10:00 she brought in a cup of chamomile tea I had requested, and that totally did the trick.  As soon as I started sipping it, I started tooting away, and I continued passing gas for the next few hours until all the bloating was gone.  In fact, I'm still passing little farts here and there as I write this at 12:30 AM.  This is a great sign - it means that tomorrow I will be able to eat.

Chillin in my room, checking emials and posting
 updates on HealingWell and
I have to say during the first day and night, this room was way less busy than the last time I had surgery.  During my last inpatient stay, it seemed like someone was coming through at least every hour to check vitals, empty drains, ask questions about pain and functioning, look at my incisions, check out my stoma and output, give me pills, give me shots, give me food, replace my IV bags, clean my room, etc.  This time it was relatively quiet and peaceful.  I still had my assigned nurses coming in every four hours or so to check on me and take vitals or empty my catheter, but not nearly as crowded as last time, which was nice.

So overall the takedown surgery and immediate recovery has gone SUPER smoothly and with flying colors.  No complications, plenty of mobility, and hardly any pain.  Now it is the end of day one.  Tomorrow I will be introduced to more clear liquids in the morning (apple juice, broth, jello), and most likely "full liquids" that evening (thicker soup, pudding, yogurt), and then gentle solids the next day.  So in a couple days I will post again to tell you how my j-pouch functions when it's required to pass something other than gas!  This is where it could go either way... so it's a tiny bit nerve-wracking, but since everything so far has been going so smoothly, I have confidence that this next phase will too.  I'm excited to see how it goes!

P.S. - Right after I published this post, I went to the bathroom to urinate and was surprised to find that I also passed my first itty bitty little poo!  (2:30 AM)  It must have been the half a cup of chicken broth since that's all I had aside from water on day one!?  Bizarre!  I almost wanted to take a photo since it was the first "product" of my brand new j-pouch, but figured that may be going a little too far, LOL!  I gently wiped with a baby wipe and applied some skin barrier ointment provided by the hospital in order to start the routine required to prevent the dreaded "butt burn".

P.P.S. - In the couple of days following this post, I ended up with some post-op complications which required me to stay in the hospital for a lot longer than expected.  None of them had anything to do with the j-pouch or its function; they were all just issues that could come up after any major abdominal surgery.  So my next two posts include some of the most difficult things I have been through yet.

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Saturday, December 8, 2012

The Pouchogram

  anastamosis = surgically attaching two parts together through either hand-sewn or stapling techniques
  loop ileostomy = when a loop of small intestine is brought through the abdominal wall to create a stoma for the elimination of waste
  takedown = surgical reversal of the ileostomy in order to hook up the j-pouch for use
  ileo = short for ileostomy  

Yesterday morning I had my pre-op appointments to examine whether my j-pouch is ready for takedown.  It's more of a precaution really.  Since I've had no sign or indication of any complication, we all assume everything has been healing up as it should, but they need to double check to make sure there are no leaks in the "new plumbing" before they "switch on the water main" so to speak, or I could end up with poo leaking into my abdominal cavity - no good!

My appointment with the surgeon was quick and easy.  She explained what the second surgery would entail: she would cut around the stoma, and if everything looks good and there's not too much scar tissue, she would just sew up that hole in my small intestine that was used to create the stoma.  However, if it looks like there is more scar tissue than is desirable, then she would simply snip off the part that was used for the stoma and staple the two remaining ends together.  Then she would poke it back into my abdomen and staple up the incision in my skin.  She explained that while they were able to use surgical glue on the other incisions because they were clean, sterile cuts, since this one had been used as a waste evacuation point and is very much not a sterile environment, they would not be able to seal it with the glue.  (Wounds that are considered "dirty" need to be able to breathe and drain in order to heal.)  So they will hold the incision closed with a few staples and then remove them later.

The next thing she did was to check to feel how the anastamosis holding the j-pouch to my anal canal/rectal cuff had healed.   If the passageway was too tight, that could present a bit of a problem.  So she had me pull down my pants just enough to reveal my bum, stuck her gloved and well-lubricated finger in, wiggled it around a bit (once you've had a camera five feet up there, a little finger action is a non-issue), and said, "Oh good.  It's all nice and loose."  Great.  I guess that means I shouldn't have too much trouble emptying my j-pouch after takedown.  She told me that she would look at the scans from my upcoming X-ray procedure that evening at the end of her workday.  Since she knew it would be a very busy time for her (end of business on a Friday), she would only call if something was wrong.  "So no news is good news," she said.

Next I was off to radiology for the actual pouchogram.  The idea is to fill the j-pouch with a fluid that shows up on X-rays and then take a scan to see if the fluid has gone anywhere it shouldn't.   Before my appointment I had a fleeting thought: "Wait, shouldn't I have fasted and emptied my bowels for an exam of my intestine?"  And then, "Oh yeah... This is the unused portion of my guts.  It's already empty!  Duh."  After changing into a hospital gown, I was brought back into the X-ray room, and the tech first positioned me and took a quick X-ray of my pelvis.  Then she prepared the materials needed while they waited for the doctor who would perform the procedure to arrive.  I lay there on the table and watched her fill what looked like a large IV bag with fluids: Gastrografin mixed with water.  A common misconception is that they use barium for the pouchogram (who knows - maybe some places do), but if they DO spot a leak this way, barium isn't very safe for your abdomen either, so Gastrografin serves the same purpose but is a safer medium if it does leak into your body.  As she filled and mixed the contents of the bag and hung it high on an IV stand with a long, large tube running down from it, I said, "Wow, that looks kinda scary."  She chuckled and said not to worry - that they wouldn't be using all of it.  It's just procedure to mix that amount in order to get the right ratio of fluids.

I have to pause here to say I really don't know why I was so nervous for this exam.  I mean, I've had literally thousands of enemas in my lifetime and eight colonoscopies - some of them while I was completely awake and sober - so logically I knew this would be a piece of cake.  But for some reason I was nervous.  I think it was because this is the first time my j-pouch would be expected to perform.  It would be filled to the brim and expected to retain fluid.  Here's how it actually went down...

The doctor finally arrived and showed me that only about two inches of the tube would be stuck up my patootie (thank goodness) and explained that a tiny balloon would inflate to help keep it in place as well as help to prevent all the fluid from leaking right back out.  As I lay on my left side, he inserted the tube and taped it in place along the back of my thigh so that it wouldn't slip out as they performed the exam.  I waited and braced myself for the feeling of fluid running into my j-pouch; I was expecting a feeling of cold or a building of pressure, but to be perfectly honest I didn't really feel a thing after he placed the tube.  I wasn't even sure the fluid was running into my j-pouch until I felt it start to dump into my ileostomy bag.

Diagram of a loop ileostomy
Okay, another pause to explain a common misconception about loop ileostomies.  A lot of people don't realize that when you have a loop ileostomy (as opposed to an end ileostomy), there are actually two holes in the stoma, even though you can't see them.  One goes up to the rest of the small intestine and the stomach - digested food flows out of this hole and into the bag.  The other hole leads down to the j-pouch (or in other cases, a colon or rectum).  Although rare, it is actually possible for digested food to flow back into this second hole and pass down through the j-pouch and out the anus before takedown.  If this happens we are told not to worry - it's perfectly normal.  So I knew before the exam started that the Gastrografin could potentially run all the way up into my ileostomy bag, and I even mentioned this to the lab tech as I was understanding how the procedure would work.

So when I felt my bag filling up with fluid, I told the doctor so he would know to stop the flow, otherwise I could risk ending up with a bag that was full to bursting.  When I've had enemas in the past, it is not comfortable: it creates a cold pressure inside that makes me feel like I have to go to the bathroom and sometimes even triggers cramping, but I have to hold it in.  So I was surprised that during this procedure I felt no pressure, no coldness, nothing.  Like I said, I didn't even know for sure that my j-pouch was filling up until it started dumping into my ileo bag.  To me, I took this as a good sign.  If I felt no pain or pressure for this procedure, chances were better that I would feel less pain and pressure when it was filled with digested food.

Pouchogram scan - not mine
(Image courtesy of University of Toronto,
labeled by yours truly.)
As he ran the fluid into me, he was taking "snapshots" with the large Xray machine hovering right above me.   He had a computer screen in front of him, right next to where I was laying (I could have seen the images myself if I wasn't on my left side) where he was looking at the images as he took them.  He had me roll back to a 45 degree angle for more images and then all the way flat on my back for a few more.  I could actually see the images on the screen by that point, though I couldn't tell what I was looking at - just looked like light and dark blobs to me.  Then when they were pretty much done, they had me roll back over on my left side as the tech brought the "IV bag" down towards the floor in order to drain as much of the fluid back out and into the bag as possible.  Once they got as much out as they could, they removed the tape and tube from my butt and let me get up to use the adjascent restroom in order to empty out anything else I could into the toilet (and my ileo bag while I was at it).  Then they had me hop back up on the table for one final scan.  All done!  I got dressed and headed home.

Through all of this my j-pouch seemed to function perfectly, retaining when it should, emptying when it should, and no uncomfortable sensations.  I left feeling a bit more confident that things would continue to go smoothly after takedown.  Since I never received a call from the surgeon, I assume the images looked good to her.  I'm still a little nervous about what might happen after this next surgery, but less so now.  The excitement and anticipation are starting to take over.  My surgery is in three days (!!!), so my next post will be all about how the takedown went!

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Sunday, December 2, 2012

Ready for Takedown

  BM = bowel movement          proctocolectomy = surgical removal of both the rectum and colon  
  ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  
  butt burn = the intense burning sensation of the skin around the anus resulting from the irritation that is caused by the high levels of digestive fluids and acidity of frequent bowel movements after j-pouch surgery.  

The "takedown".  It sounds like some epic move at the end of a climactic battle that will wipe out your enemy for good.  In the j-pouch world, though, it is not quite so dramatic; it's the reversal of the temporary ileostomy in order to hook up the now-healed j-pouch for use.  Even though this surgery is far less invasive, many patients are more afraid of this step than the first surgery (or surgeries) because of the wide variety of potential outcomes, and I am one of them.


At least with the first surgery, you know what to expect: you'll be living with an ostomy bag for a while, which is not fun, but it's manageable, and your health will return at an astounding rate, which is amazing.  Before surgery one, I was in so much pain and misery from my disease that I was counting down the days until my surgery, and all I could think about was getting relief.  This time around, I'm already healthy and feeling fine, especially since the drug withdrawals have finally died off, but the reversal of my ileostomy could possibly leave me tied to the toilet again with irritating and even painful symptoms.

Some patients come out of the takedown with hardly any negative effects; they start off going to the bathroom 4-8 times a day (which is the expected long-term outcome after j-pouch surgery), and their pouches function perfectly from day one.  I even read about one woman who returned to work within two weeks of her takedown.  Others, though, experience sometimes debilitating issues or complications that may include high BM frequency (10-15+ times per day), anal leakage, butt burn, painful gas, trouble emptying, painful cramping and spasms, constant urge to defecate, sexual dysfunction, diarrhea, pouchitis, fistulas, adhesions, fissures, blockages, strictures, and the list goes on.  Most people, however, are somewhere in the middle, with a few minimal effects that improve over time and eventually result in a healthy, functioning j-pouch.

The unused part of the intestine still produces mucous (usually used to lubricate as food passes through), which drains out of my j-pouch several times a day when I sit on the toilet.  (This is perfectly normal in between surgeries.)  Sometimes I feel urgency and the need to go, even when there is little or nothing there.  These sensations worry me a little because I wonder if it will be even worse after takedown when there is more passing through than just mucous.  However, when I start to feel nervous, I have to keep reminding myself that most j-pouch outcomes are very successful, and I mentally review some of the statistics from medical studies I've read.  (See my list of Clinical Studies.)  On the Frequently Asked Questions page of, the expert medical professional who has been in the "trenches" of this field for many years responded with the following quote when asked if anyone regrets j-pouch surgery:
Most patients having had this surgery are very satisfied. Almost all persons who chose this surgery would choose it again if given the choice. No more pills, no pain, no bloody diarrhea. Many people talk about "waiting for the other shoe to drop" (the next attack as it were) because they have gotten so used to living with the disappointments of chronic illness. As time passes you get past the feeling that disappointment is just around the corner. Forget it, it's out of here. This is your new life.
Up until two months ago, I had lived with ulcerative colitis for seventeen years.  So when I read those last two sentences, I wanted to cry.


It is true that one part of me is scared, but for the reason in that quote, the other part of me is excited.  Right after my proctocolectomy, I felt immediately better than before, and so my attitude toward any obstacles I had to overcome to regain my health was a positive one; I would tackle them with gusto and a smile on my face.  However, it has now been two months since that surgery gave me my health back.  Now that I have been enjoying some of the benefits that have come along with that regained health (social life, travel, increased energy, returned sex drive, etc), I feel like I'm ready to have my life back, and I want more.  It's like getting a taste of something delicious but not being allowed to finish off the full serving.  I'm starting to get ambitious and greedy, and I am becoming increasingly more annoyed by the little things that I still feel have been holding me back.  I'm impatient about being able to run and lift weights again.  About resuming my dating life without feeling self-conscious about an external bag that holds my bodily waste.  About eventually getting to a diet where I can eat whatever I want (i.e. salads, whole grains, fresh fruit, etc.) without worrying about blockages.  About looking down and seeing my tummy back to the way it was, maybe with a little scar, but without a piece of my insides sticking out of it.  About going for a walk or a hike without my stoma and appliance area becoming itchy and uncomfortable.... And I can't wait to be on the other side of this.  To finally feel like I really truly have my life and my body back.  All of these things that I have to look forward to after recovery from this next surgery makes me excited and full of anticipation.


After my first surgery, once the diseased part of my intestine was gone, I wanted to eat everything in sight, and I was pretty much stuffing my face with large amounts of comfort and junk food for about a month straight, but I didn't mind a bit of weight gain from my indulgences since my disease had been literally starving me before that.  Plus, I thought I kind of deserved a little gluttony after everything I'd been through.  Because of my post-op diet restrictions (which include no veggies or whole grains); my post-op exercise restrictions (ha, none allowed); my returned health; and the effects of the prednisone, I gained almost twenty pounds in the course of three or four weeks.  (Heh, that's a lot.)  On a frame of 5'7", my lowest weight - right after surgery - was 123 lbs., and now I weigh somewhere around 140 (give or take a pound depending on the day).

I am back to a healthy weight for my height, though a little flabbier than I'd like.  In order to stop gaining additional weight, I have reigned in my food intake and have been eating things like protein shakes, bananas, yogurt, Metamucil wafers, chicken, rice, tuna, eggs, Odwalla Superfood, peanut butter, applesauce... basically trying to eat healthy while still on somewhat of a low-residue diet.  Fortunately, the ravenous food cravings I was experiencing for that month seem to have pretty much disappeared.  I don't know if it's due to finally being off of the prednisone, or if my body just realizes it's no longer starving and doesn't need to eat everything in sight anymore, or even just having my fill of it all, but my appetite is back to normal.  Junk food is still tasty and a little tempting, but I don't feel like I HAVE to have it.  My weight has stabilized,and though it would be nice to even lose a pound or two, I'm really not too concerned with it since I know that the upcoming surgical process alone followed by the post-op diet restrictions will cause me to drop a few pounds.  I'll see where I end up before I worry about getting to any kind of goal weight.  Plus, I kind of feel like I want to enjoy my last few days of dietary freedom before it gets highly restricted again right after surgery.


I am just barely more than a week away from my takedown (wow- it's still hard to believe), and I have to say I thought I would have been more active during this last month.  With my returned health, I thought I would be walking, hiking, visiting local sites, going out to bars, maybe even throwing a little jogging or mild strength-training in.  But the whole drug withdrawal process kind of threw a monkey-wrench in that whole plan.

When you come off of this type of prescription drug dependency (prednisone and pain-killers), you have to do it slowly, tapering down by fractions of a dose each week.  Every time I decrease the dosage, my body feels the lack of chemical it needs to function properly before it starts increasing it's own production of them again, and I just feel really crummy: lethargic, weak, shaky, light-headed, and having trouble regulating my own body temperature, almost like I have the flu.  By the time I start feeling okay again, it's time to take another step down on the dosage.  Since this happens every week over the course of a month or two, I'm kind of down for the count that entire taper period.  If you combine that with the annoyance of the ileostomy bag, it just kind of takes the fun out of those adventures I thought I'd be having.  It has just been the last couple days that the last of the drug withdrawal effects have gone, and since I'm now only ten days away from step two, I've sort of become resigned to just waiting until after my takedown to really get back into the swing of things in regards to exercise and outdoor activities.

However, I have to say I have thoroughly enjoyed a few days of returned social life here before I check myself in to the hospital soon.  Last Thursday I had a few friends over for snacks and movie night, which was totally fun.  On Friday I went out on my first (and probably only) date while living with an ileostomy, got my drink on, and had a good time getting to know a new friend.  Then the next day, I visited with my cousin and her hubby: we played a board game, watched a little TV, got a manicure, and caught up on chit-chat.   (Okay, hubby didn't join in on the mani.)  I also have a couple more social things planned for this week before I'm laid up again in post-op recovery.


My pre-op exams are scheduled for this coming Friday, and then four days later will be my takedown surgery.  I am both nervous and excited.  Before the takedown, we still have the possibility that things will turn out great.  But once that final surgery happens, that's it - no more unknown factors - I'm stuck with the result, whatever it may be.  It's like the big reveal: will all this really give me my life back, or will it all have been for nothing?  But I know that all of the variables involved in my own surgical situation fall in my favor, and I really do have faith in my surgeon and high hopes for my outcome.  Either way, I will continue to chronicle my adventures, j-pouch and all.

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Thursday, November 22, 2012

About The Bag

  UC = ulcerative colitis        ileo = short for ileostomy        ostomate = a person who is living with an ostomy  
  ostomy = an artificial opening for the elimination of bodily wastes (includes ileostomy, colostomy, urostomy, jejunostomy, etc.)  
  tail = the skinnier, bottom part of the ostomy bag where the output drains from when emptying.  
  takedown = surgery in which the ileostomy is reversed and j-pouch is hooked up for use.  

I've spent a lot of time talking about the disease, the surgery, and the recovery, but I haven't really delved into what it's like to live with an ostomy bag day in and day out, so I figured I'd dedicate a post to listing off all the little things I've observed, noticed, and learned about living with an ostomy so that those who are going to go through it one day know what to expect.  I've only been living with my ileostomy for seven weeks now, so some other people who have been living with theirs for longer may be a better resource for all things bag-related, but here is what I've come up with so far... the good, the bad, and the ugly.

  • First and foremost is returned health; for many people an ostomy has given us our lives back and saved us from disease, which means no more cramping, pain, malnourishment, chronic dehydration, bleeding, running to the bathroom 15-20+ times a day, hardcore drugs, side-effects, risk of rectal/colon cancer, etc.
  • You have the freedom of emptying when it's convenient, which comes with the ability to leave the house, socialize, work, run errands, camp, hike, and do all sorts of other sporty activities without worrying about when you're going to use the loo.
  • It is possible to "go" without having to drop trou, which can come in handy during emergency-type bathroom situations (camping, kayaking, rock-climbing, stuck in traffic, broken toilet, porta-potty, bed-ridden, etc).  When it normally might be inconvenient to take down your pants and cop a squat, you can just empty into a ziplock or old yogurt container or whatever, or you can buy non-drainable pouches and just replace the whole pouch.
  • You have the freedom of eating almost anything.  (Just avoid foods that could cause blockages).
  • There is no urgency or cramping associated with bathroom use, and constipation is a non-issue.
  • Males retain the ability to urinate standing up, whereas previously with a disease or later after takedown while adjusting to a J-pouch, urination may trigger incontinence.
  • You are able to pass gas (out your stoma) without accidentally passing anything else (out your bum), which could happen both with disease or with a J-pouch.
  • Your "farts" don't smell... until you open the bag to empty it.
  • There are many supply/appliance options available so that if you are having trouble with the stoma site and bag itself, there are always other things to try until you find something that works.
  • No more colonoscopy bowel prep; just a 24-hour liquid diet for any scopes or procedures... though I believe this is true of any colostomy procedure and continues to be the case after takedown.  (See my link Dave Barry: A Journey Into My Colon under my "Just For Laughs" section to the right if you don't know what I'm talking about when I refer to bowel prep.)
  • Emptying the bag and cleaning the tail 4-8 times per day can be a hassle.  It can be time consuming as it takes several minutes in the bathroom each time, often getting a tiny bit of output on the hands in the process.
  • 1-2 of those times are at night, which interrupts sleep (though nighttime restroom use will also be an issue after takedown with a functioning J-pouch).
  • Changing the bag twice a week is a hassle.
  • Your bag can fill with air which can make it appear and feel more full, requiring you to either empty or "burp" the bag.
  • The risk of a blockage is terrifying since I've heard they are extremely painful and can last from hours to days.  (Fortunately, I have never experienced one myself.)
  • Finding the right individualized combination of supplies that work can be a complicated and frustrating trial-and-error process.
  • Irritation and ulceration (open sores) form around the stoma if output seeps or leaks under the wafer and comes in contact with the skin, which is very common and can be quite painful.  In fact, frustration over unsuccessful attempts to treat and prevent this has almost brought me to tears more than once.
  • Appearance and yuk factor can be difficult to get used to for both yourself and others, including during intimacy.
  • The feeling of air or output passing out of the stoma can be distracting (though I'm sure after enough time of living with an ostomy, one would stop even noticing this).
  • The little burps and fart noises the stoma makes can be distracting or embarrassing, especially when it happens at the most inopportune times.
  • Clothing/wardrobe can be a concern; certain clothes can be less comfortable or require more frequent bag-emptying, especially for women's tighter styles... not to even mention swimsuit season.
  • The feel of the bag hanging and flopping around and plastic of the bag on your skin all the time can be annoying.
  • Living with adhesive tape, appliances, and gummy adhesive residue on your tummy all day every day can get itchy, uncomfortable, and old.
  • The bag sometimes crinkles and makes noise when you walk or move around.
  • Emptying the bag can be quite stinky unless you use some preventative measure (oral pepto tabs once a day or either hydrogen peroxide or deodorizer drops in the bag at every change), which can be embarrassing if in a public restroom or a guest at someone's house.
  • There is always a fear/risk of a major leak or blowout, which would result in gross output everywhere.
  • When travelling I have to bring a whole extra bag of stuff to carry all the supplies I will need for bag maintenance while away.
  • The need to take a set of extra emergency supplies wherever you go just in case of a major leak can be a hassle.  (Personally, I just keep a set in the car and call it good.)
  • Ostomy supplies can be extremely expensive if not covered by insurance.  Fortunately, mine are 100% covered.  (Everything else surgery-related has been as well.  Go Blue Shield!)
  • The output sticks to the side of the toilet bowl (at least in my case) requiring me to clean the toilet frequently.  (Although a messy toilet was also the case with UC.)


  • After emptying your bag and then squeezing and swiping out the bulk of the output from the tail with a bit of toilet paper, you can use a baby wipe to swipe/clean out the tail the rest of the way.  It is quicker, more effective, and uses less TP.
  • After you empty your bag, if you want extra cleanliness you can use a small squirt bottle to squirt water into the bag, swish it around to rinse out the bag, and then let it drain out.  It is a safe way to clean out the bag and the stoma area between changes (though it is not really necessary) and can save on toilet paper from constantly wiping out the tail.
  • Showering can be done with or without the bag attached (like during bag changes), but if you go bagless and there is ulceration around the stoma, the water will sting like a bitch.
  • Nail polish remover can help get the adhesive residue off your skin more easily.
What ileostomy?
(6 weeks out)
Wearing It:
  • It's common to tuck the bag into your underwear so it's not hanging down and flopping around.
  • If your stoma is right at your pants-line, in the beginning it will be uncomfortable to wear jeans or tight pants, but eventually this will change.  Right around the six-week mark is the first time I found I could wear skinny jeans buttoned up and still be pretty comfortable.
  • A belly band (like what pregnant women wear over their pants) worn underneath clothing can help hide the look of the bag as well as provide an extra layer of support.  In the beginning when pants can be uncomfortable, you can wear a belly band over unbuttoned pants when going out in public (especially females), and it is not noticeable at all and looks just fine.
  • If you don't want to spend the money on special underwear, belts, or bands, simply wearing two layers of underwear can provide a layer of comfort between the bag and the skin while also providing a place to tuck the bag so it's not hanging down and flopping around.
Supplies & Maintenance:
  • Call all the main ostomy supply companies, talk to their on-staff stoma nurses to explain your specific situation, and have them send you samples they recommend so you can try out different combos that might work for you.
  • The Eakin ring is moldable and can
    fit around any stoma size
  • Moldable wafers can be beneficial while your stoma is shrinking since they can fit a variety of sizes, or for more stable stomas that stick out further.  However, since they are meant to hug your stoma, if you have a loop ileo that moves around and retracts flat against your tummy frequently, that can break the seal which can allow output to seep under and come in contact with your skin.  (Big NO-NO!)  

  • Eakin Seals used in combination with a convex-shaped pre-cut or cut-to-fit (or even moldable) wafer can keep a seal that stays in place better around moving, retracting stomas.  My ulceration was completely gone within two bag changes using an Eakin Seal.  Wearing an ostomy belt (just a thin white elastic band that attaches to the bag) can also help keep things in place if leaking or seepage is an issue or during more intensive activities.

Friar's = Magic?
Make sure the ingredients are correct.
  • There are many ostomates on the Healing Well website who say that this stuff called Friar's Balsam works like magic to both prevent and treat irritation and ulceration without having to use any other powders, wipes, or seals, but you have to get the right type.  However, it is only available online and can be very difficult to find.  I ordered some from this website, and it is the right stuff (see photos).  Unfortunately, it did not work like magic for me.  If I don't use an Eakin ring, the ulceration comes back from output seeping under the wafer, so now I still use the Friar's under the Eakin to help heal any ulceration and irritation.  I think my stoma is just finicky.
  • Many are fans of one-piece systems, but I use a two-piece system because I can get a close look at how close of a seal I've got between my wafer and stoma, making sure there is no skin exposed before I attach the bag.
  • Emptying the bag more frequently can be more comfortable (the fuller it gets, the heavier and bulkier it is) as well as pull less on the adhesive seal, helping to prevent leaks.
  • The more frequently you change your bag, the less irritation and ulceration will result.  I was told every 4-5 days is common, but I've found every 2-3 days to be more effective for me.  However, now that I have found the Eakin ring to help prevent ulceration, I may be able to go longer.
Fruit cups = a safe way to eat fruit
  • In order to prevent any blockages, make sure you avoid certain foods during the first six weeks after surgery and then *slowly* and *carefully* reintroduce them.  OR if you're like me and terrified of a blockage, you can just stay away from these foods until your takedown.  Foods to avoid: anything fibrous (veggies, fruit skins, pineapple, coconut, etc.); anything hard and difficult to break down and digest (nuts, seeds, etc.); anything with a visible husk or membrane (whole grains, whole oranges, etc.).  
  • Little fruit cups meant for children are a safe and easy way to eat fruit since they have no seeds, skin, membranes, etc.  I get the all-natural kind that are stored in their own juices (instead of high-fructose corn syrup).
  • Odwalla Superfood and/or V-8 can also help provide some of the fruit/veggie nutrition you miss from avoiding whole fruits and vegetables in the beginning.
  • Food comes out looking and smelling a lot more like how it started.  You can usually tell which meal it is you are emptying out of your bag.  For example, little spices and seasonings come out in-tact, and eating a box of Red Vines can make you think you're bleeding to death before you remember that the bright red stuff coming out is just the candy coloring.  Applesauce comes out looking EXACTLY as it did going in, only it more than triples in volume.
Handy Tips:
  • Eating a few tablespoons of peanut butter can stop output for two hours, about thirty-five minutes after you eat it.  (Handy for bag changes, swimming, or intimate encounters.)  I just eat a toaster waffle or piece of toast loaded with it.
  • When the bag starts filling with air, you can "burp" it: hold the tail higher than the stoma and squeeze the output down and away from the tail; then unclip the bag and carefully press the air out, and replace the clip.  There is a way to do it from the top if you have a two-piece system, but I'm always afraid this method is too risky and could cause a mess, so I've never tried it.
  • Pills are okay to take and will get absorbed just fine as long as they are not extended release or covered in a strong, protective coating.
  • Some people are too nervous to sleep in certain positions, worried about squashing their stoma or their body weight on the bag causing a leak, but I have slept in every position many times (even on my stomach) with absolutely no problem.  It does not interfere with the function of the stoma, and I've never had a leak.  (Just make sure you wear clothes over the bag, especially with a two-piece system, so that the bag doesn't get caught up as you toss and turn and change positions.)
  • Don't let a cat jump on your lap unless you are carefully guarding your bag, as cat claws seem to be perfect tools for puncturing the bag and causing leaks.

Although output can range from thin and runny to thick and bulky within the course of a day, the thin, runny output is not what we're aiming for.  In fact, it can be problematic for a few reasons.  It gets under the seal of the adhesive wafer more easily, which makes it more likely to cause seepage or leaking.  If it is too runny too often, it can also mean things are going through your system too fast, risking malnourishment and/or dehydration.  So here are a few ways to thicken output:
Bread, banana, and applesauce:
three components of the BRAT diet.
  • Eat thickening foods (they call it the "BRAT" diet): banana, rice, applesauce, toast (or bread).  I found that my morning whey protein shakes run right through me as liquid, which means it may not be absorbing properly.  If I add a full banana, it thickens things up, slows down digestion, and keeps me feeling fuller for longer.  Hard cheese and peanut butter can also slow things down.
  • Avoid foods that can cause thin, runny output or speed up motility, like sugar, caffeine, and alcohol.
  • Don't drink much water during your meal.  It is important to hydrate, but space the majority of your fluids out twenty minutes before or after your meal.  (Although the first week or two after surgery while things are still very swollen, it is a good idea to sip lots of water with your food in order to keep things easier to digest and flowing smoothly.)
  • Add soluble fiber supplements to your diet; some prefer Metamucil while others prefer Benefiber.  These will gel up and come out as a thick, cohesive output that slides right out of the bag and is easy to clean.  The Metamucil wafers are tasty and easy to take with you as a snack.  Just make sure to time it at least two hours from any medications since it can affect absorption.

Gas is not dangerous at all, but it can be uncomfortable, noisy, and can fill your bag with air, and during the first two or three weeks while swelling is still high, it can be very painful.  So keep in mind that the same things that produce gas before an ostomy will likely still cause gas.  If you're trying to reduce gas production, here are a few suggestions:
  • Avoid foods that can cause gas, like cauliflower, cabbage, beans, sprouts, broccoli, beer, and other carbonated beverages.  
  • Eat yogurt or take probiotic supplements.
  • Don't chew gum or drink through straws.
  • Take Bean-O with meals to prevent gas, and/or take Gas-X once you have gas to help it pass more quickly.  (These work better for some people than others.)

Unfortunately, since I have not been approved for exercise during the time between my two surgeries, I cannot comment on how it is to work out or play sports with a bag.  However, I hear people do this all the time just fine; I imagine it would just take a little extra planning.  What I have noticed is that when I move around too much (like fast walking), my appliances can sometimes get a little itchy or uncomfortable, but I suppose one would get used to this over time.

Although many people are very happy living with their ostomies, and some ostomates might even feel offended by my saying this, in my opinion living with an ostomy is honestly quite a hassle.  However, like I have said before, I greatly appreciate it for what it's done for me, because it has given me my life back; it is surely better than living with the advanced stage of the disease I had, and having it in place while my "new pluming" heals is giving me a better chance at a successful J-pouch.  I definitely wouldn't WANT to live with an ostomy forever, but it is certainly doable if I didn't have much of a choice.

P.S. - Everything listed above is just what I've noticed myself or learned from online message boards.  Any people who are more experienced ostomates are welcome to chime in on the comments section of this blog to correct or add to these lists!  

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