Melvin & Me, Part 21: Crohn's Disease 101

It has occurred to me that while I have had some extensive conversation on my blog about life with an ostomy, I have not dedicated nearly as much time to the condition that required it in the first place, namely my experience with Crohn’s Disease.  It’s time to talk about that.

I think one of these is warranted here, too.

What up, my Crohnies?

So, I don’t know if anyone else uses that term aside from myself, but it makes me smile.  This isn’t to purposefully exclude those with other Inflammatory Bowel Disease (IBD) such as Ulcerative Colitis (UC), but to recognize that specific camaraderie, that set of shared experiences that persons with this disease have as a collective.  As a general disclaimer, the following pieces are elements that I have cobbled together from my own reading, consultations, and experiences.  If anyone needs further references, I would be happy to help you find them, but for the most part they will not be listed out here.  

ANYWAY, let’s start at the actual beginning:  What is Crohn’s Disease?

Great question.  I’m glad you asked. 

Crohn’s Disease is an autoimmune condition, where the body’s natural responses to pathogens (a bacteria, virus, etc. that can cause disease) is skewed in some capacity to perceive the body itself as a threat.  “Auto” in “Autoimmune” means “self,” so literally it means an immunological response to oneself.  This means that the normal immunological response of eliminating a dangerous/foreign substance and all of the potential firepower that your body has to complete that action is now aimed against the body that it was designed to protect.  Pretty messed up, right?  For example, my body  particularly targets my large intestine in the intent of protecting itself from some perceived threat.

Let’s compare it to a more normalized condition:  allergies.  When you are having an allergic reaction to something, your body has identified a foreign substance, something flagged as “doesn’t belong to the body.”  Logically, you could recognize that the pollen is, in fact, NOT harmful to your body.  But your immune system is trained to react, not to be logical.  So it closes off orifices to keep more of that substance from coming in, such as your eyes and throat; you are compelled to sneeze and/or cough to expel the allergen or even tear up uncontrollably; your body is responding to a threat as best as it knows how.  In short, anaphylaxis is a bit like burning down your home because you found a spider in it.  Again, the immune system is doing the best it can do within its genetic programming and with the data it has. 

Most autoimmune diseases, then, have the same principle ideas but are specific to different parts of the body.  Hashimoto’s is when your immune system has “decided” the thyroid and its byproducts are a threat and begins to attack there.  Rheumatoid arthritis is when your body thinks your joints are awfully shady.  In the case of Crohn’s, my entire digestive tract—from mouth to anus—is flagged as suspicious.  I have had sores in my mouth, ulcers in my large intestine, and a few issues with my rectum that have made sitting a difficult activity. 

So how does the body undertake this immune response?  One of the big signs/symptoms is inflammation; there will be an increase in certain white blood cells as the body gathers its metaphorical army; and it will be awfully difficult for the afflicted body part to continue its normal function while under constant assault.  How are you supposed to do your "normal" functions when you're under fire?  Another of the major symptoms as a result (and understandably so) is fatigue.  Fever is there, too, as a common weapon in the body's arsenal against infection.

What are some other common symptoms of Crohn's Disease?  

Let's start with the more obvious list, mostly things related to the digestive tract:  nausea, diarrhea, indigestion (dyspepsia), constipation, lack of appetite, pain (the kind and duration of pain depending on what areas are chiefly under friendly fire), blood in stool/poop, increased frequency in pooping, increased urgency in pooping, gas/bloating, sensitivity to certain foods and alcohol, sudden weight loss (no, this is EMPHATICALLY NOT a blessing in disguise), and along with some general infection points of fever/chills and night sweats.  

Here are some of the less obvious:   that idea of feeling better after having a big poop?  I haven't felt that in years.  I have a bevy of experiences and situations where knowing that I might need a bathroom suddenly and urgently has led to a great deal of anxiety--I still reflexively will estimate or make note of where the bathrooms are when I go to a place we plan on being for any considerable duration.  Constant pain from those seriously afflicted parts wears you down in more ways that one.  Too much blood in the stool (and not absorbing iron as well in the large intestine) has made me anemic more than once, meaning that since I had less iron in my blood (and overall less blood) I was not as efficient as I could have been in respiration and thus felt even more tired.  I have such a weird relationship with food:  when things are bad, I know that I need to eat, but I might A) have no appetite and B) be fully aware that eating at this time might hurt the whole way through; forcing yourself to eat is a pretty messed-up emotional nightmare in those times.  My skin has had some intersting breakdown points--if I'm not absorbing vitamins, they're not getting anywhere else that needs them either.  Pain near the rectum makes sex much more difficult and sometimes impossible. Depression.  Additional anxiety about finances, given how messed up our insurance/medical system is.  Organs that have been under constant assault from your own body not only decrease in their functionality, but they might become so scarred that they no longer work at all, for all are part of the tissue.  

Now, some of these signs/symptoms might not be happening ALL the time--when I am experiencing a flare up, where the body is on "red alert," so to say, that's when I'll be much more symptomatic, meaning that I'm experiencing a high amount and/or severe level of those symptoms.  With some aggressive tactics and time, I can be brought out of the flare-up and back into remission, a truce instated within my body once more as all parts begin to pick up the pieces once more.  

I went to a Crohn's Colitis Foundation (CCF) conference some years back and I still remember one talking point that went something like this:  there are approximately 168 genes that are tied to Crohn's and Ulcerative Colitis.  110 are shared between them.  There are twenty to thirty that are Crohn's specific and the rest are UC specific.  What does this mean?  It means that Crohn's and UC can have a lot of variation, that one patient might be able to have a glass of wine, another one could find that triggers flare-ups for them.  In fact, there are a few instances of Crohn's where the immune system isn't overzealous but rather is underperforming:  a complete restructure of thinking about the disease!  What I mean to say with this is that my experience is not specifically going to be the same as anyone else.  There will be a great deal of commonality between my Crohn's and someone else's, perhaps, but their own unique body chemistry and their particular situation might be very different.  

I have known folks who have had a less aggressive version of Crohn's--please don't assume that Crohn's equates to an eventual ostomy or even surgery.  In my case, it was the best path forward.  Other people are quickly tidied up with a round of steroids.  

But we'll get more into treatment in another post.  

A "Shary Bobbins" Day

The last few weeks have been balls-to-the-wall for me at work.  If you're not familiar with that particular phrase, I'll offer the alternative of "hella busy."  Two weeks in a row were back-to-back recording days for me, where I was teaching content of the software to a group of people.  That in itself is not too bad, but what made these particularly exhausting was that in recording them, I was instructed not to take questions from folks as we went along, taking questions at the breaks through a buddy I had proctoring them or at the end of the day instead.  In other words, I was literally talking to myself in a closed room for six hours.  The result was a complete mental tap-out by the end of the day, and then turning around and doing it the next day.  Two weeks of that, and then a week-long onsite.  

This has left me in a particular state of mind post work, which involves the following symptoms:  increased forgetfulness, difficulty in making mundane decisions, inability to think out past a certain time frame (as in, I could only think about a week ahead at most), and a certain state of punchiness, where mundane or even mildly amusing things were just freakin' hilarious.

Sometimes we call it "Skyward brain," meaning that particular state of mental exhaustion from the work that we do, the kind of strain of being "on" all day.  I also like to make up little songs about having a "puddin' brain" or a "mushy brain."  But the Roy side of the family has another shorthand for this particular state:  a Shary Bobbins day.

Every now and again, I'll get a text from Mother, informing me that it's a Sherry Bobbins day (yes, spelling can vary)--this tends to then trigger a small flurry of texts of silly words, which may or may not frequently include "testicles," knowing on the other end that it is potentially sending her into a fit of giggles.  

This term was coined from one particular day, perhaps about twenty years ago, by this point.  Mother had had a LONG shift, where she was called out in the middle of the night or possibly had not actually been to bed that night--keeping regular hours as a surgical nurse on the heart team wasn't always easy.  Sleep deprived and ready for a good long sit, she came home from work, where the rest of us were already home, the three kids around the TV watching the Simpsons just as she came through the door.  The episode happened to be the Shary Bobbins episode, where the Simpsons did a spoof of Mary Poppins.  Mother was starting to tell us a bit about her day as the episode was beginning.  As Shary floated down from the sky on her umbrella, said umbrella hooks on a phone line and she flips around it with a "woo-woo-woo-woo!" before continuing her graceful decent.  Mother started laughing, the particular kind of sleep-deprived, exhausted, "that is the funniest shit I've seen in my life!" kind of laugh.  And it kept going and going, almost tears kind of cackling.

We watched the rest of the episode together, but mostly we watched my mother watch the episode, as every joke or gesture was amplified to her in that moment--we were cracking up watching her being cracked up.  It was a couple of years later before this became a standard term, with the kind of "It's a Sherry Bobbins kind of day" texts.  It pulls us all back to that shared moment.  Andy was adopted into the meaning of the term initially without having heard the story, but fully understanding that when it was time to send her a flurry of texts, he was ready to send silly words, pictures, etc.  It's one of our family stories, the shared fable that we remember together that became its own adjective.  

For me, there'll be a number of these yet before the summer is over, but the fun tied to that memory makes it at least a little bit better.

Peterson Family Update #69801-C

There are a number of great and wonderful things that I want to talk about, to highlight what my adventures have been for the past while, but I also can't seem to pull them together into a coherent thought stream or otherwise form a coherent blog.  Time to deploy the bulleted list!

• Things are starting to settle a bit.  I'm impatiently waiting for some idea of what our utilities might actually end up being for the month, how we're going to budget any differently that we did previously, etc.  MovingMode! has some necessary additional flexibility in the budget, recognizing that there are always a lot of little unexpected expenditures that are going to crop up, everything from a new silverware organizer to shower curtains to a patch for the wall no one noticed needed it until now.  We have also blown our fast food budget twice over, with as many times we've just decided that making food was just that one piece too many for the day.  But now that flexibility is starting to scale back within normal parameters, as we're waiting to find out what some of that "normal" is going to be.  With our birthdays landing in the middle of this chaos, trying to decide what purchases can be absorbed by that house leniency and what counts as fun money (which birthday money goes into) has been interesting.  

An excerpt of our conversation at work the other day

• Austin was a great time!  I spent Easter weekend with some family that I think prior to that trip we had only traded a paragraph or so of conversation.  As suspected, we seemed like-minded in a lot of avenues, where we could happily talk about everything and nothing and enjoy each others' company. Thank you, Wendy and Jason!
• At my onsite, there was another Skywardian that was there at the same time (hi, Norma!).  We set up to meet for dinner one night, but ended up hanging up several times over the course of our mutual time there.  We caught a movie one night at the Alamo Drafthouse, famed for kicking loud people out of their theaters without a refund.  I did not want to test this policy.  It makes the week go much faster and more pleasantly to have a friendly face nearby but making a new friend is even better.
• Coming to the end of my medical terminology class.  I know that parts of it are paying off when someone mentions a nosebleed and my brain immediately fills in "epistaxis."  On the one hand, sometimes the technical term is unnecessary, a way to sound full of yourself.  It's also the difference between a twenty-four hour clock and a twelve hour clock--knowing the medical term is specific in ways that might not be necessary but could be in certain situations.  Even if the word doesn't necessarily make the situation clearer to a layperson, it does still frame the context of the situation, to a point.  
• Andy and I are still butting heads with our own strategies in getting the house settled--he wants to take intermittent breaks and I want to keep going until the job is done, finding a more complete rest afterwards.  It is slowly occurring to me that one of the traits of being a homeowner is that the work is never really done.  We've planned a prioritization meeting, getting to making the house roadmap, product management in the home style.  Andy introduced me to a program called Trello, where I can drag around the cards and color code them--I've enjoyed making labels like "Long Term," "Elbow Grease," and "Throw Money At It" to help flag priority and what kind of resources the project might need.

• Work has officially swung into the busy season--in fact, I've been in it at least a month and a half early, with how my onsites played out April and May.  I can only think a week at a time once we hit this part of the year or risk feeling immediately overwhelmed.  It's going to be a hard sprint to October, when things might finally calm down for a stretch.  If I keep saying that, maybe it won't be as bad, but for myself I can promise that the summer will go quickly regardless.  For this week, I'm in San Antonio again, but without all of the post-Lasik stuff that was going on last time.  Every onsite has its own challenges--it's just a matter of rolling with punches, kicks, and computer gremlins.  
• We have a new member of the family, with the birth of Keaton Adam Cross.  Both baby and mom are doing fine.  The existential question of "what does it mean to be an aunt?" has not hit yet either.  We will likely not have a chance to meet him until October as it stands, so there's time to figure things out.
• We've started meeting a few of our neighbors in the easiest way--we just took a Sunday afternoon walk and allowed for those little conversations to happen.  Found a few folks that seem like our people.  We also have a neighbor that moved in a week after us that was one of my compatriots at East Bay Camp.  I'm excited to rekindle that friendship.  
• We have had the first folks over in our home for a game night--that has made our home feel more like our home than most else has so far.
• The world keeps turning.  

Melvin & Me, Part 20: So you've Pooped your Shirt...

Part of the fun and circus of our move-in weekend involved catching a couple of plane flights from my onsites in Austin, TX, back to Bloomington, IL, by way of Atlanta, GA, because Delta almost always hubs at its homebase.  Mostly, I had the usual concerns of plane flight:  wanting to get there in plenty of time to get through the line, get through security, hit the bathroom before boarding, see what gate I might need to find at Atlanta (I think I've only landed in the correct terminal for my connecting flight ONCE in a dozen or so flights), calculating how much time I'd actually have between flights, deciding what I should have on hand vs what could be buried in my bag, filling up my water bottle, etc.

Once boarded on the first flight, I was zoning out pretty hard but not quite napping--I had been at the airport at four in the morning to make this six o'clock flight.  Melvin was burbling along pretty actively that morning.  I was hoping to be able to make it to the airport before needing to empty the bag, since we're in a confined space and emptying a bag full of farts isn't always the nicest thing I could do to those who happen to be next to the bathroom.  Eventually, though, the bag was FULL, painfully stretching against the Stealthbelt holding it to my side.  I finally got out and emptied it out completely in the bathroom, feeling much better about the situation as the panic deflated, too.  That went without incident.

Zoning out again, the flight continued.  I noticed that Melvin was filling up once more, the bag again as a source of pressure against my side and a strong pressure in my mind.  The food cart was between me and the bathroom.  I was hoping I could make it to the airport.  The cart finally moved far enough.  Maybe I could make it to the airport anyway?  The seatbelt sign was on--we started our descent.  Well, shit.  I felt trapped in that seat.  I didn't know if I could get up anyway, if I could vent the bag a bit from where I was at and become a permanent anecdote for my seatmates whenever air travel was brought up in conversation.  Paralyzed with those ideas, whether it was too late to get up anyway or if maybe I could just hold out, I felt the pressure lessen a bit at my side and caught a decided whiff of trouble.

Yep, I had just blown a bag.  On a plane.  Where I couldn't immediately change the bag and tend to it.  And I couldn't move from my seat.  I couldn't even get a good angle to lift my shirt to check the extent of the damage in my seat--what would be the point?  Leaking over more things?  Best to keep it contained under my shirt than to potentially leak onto my pants.  Could I call an attendant for some kind of help?  What kind of help could they be?  I was very quietly freaking the fuck out in my seat.

I opted to vent the bag a bit further, to minimize the possible extent of the damage by releasing additional pressure.  I watched the man in front of me pull his shirt over his nose and say something presumably to his neighbor about it.  I don't think he knew it was me--what average person would automatically assume the person fumbling with something on their stomach was the source of the epically bad fart smell?  I had many rude thoughts to that man, along the lines of "fuck you, it's not my fault.  Suck it up."  I was so furious with myself for being "nice" and not venting the bag from my seat earlier before the pressure reached the point of exploding out one side of its containment system.  I was also mortified.  I wondered again if I should call a flight attendant, ask if I could somehow be given priority disembarking privileges to take care of it immediately after we landed.  I didn't.  Wasn't even sure if it would be possible or how much I wanted to explain of the situation to the someone, in front of any seatmates still awake.  It sounded stupid to say "I didn't want to break the rules" as a reason for the predicament that I was now in--surely they would have understood if I had gotten up and then explained with "I have to check my medical appliance."

Once we got close to actually landing, I was checking my arrival and next departure gate per usual, so I had an idea of where I was heading next and how much time before that flight began boarding, but I was also plotting my fast escape.  As soon as the seatbelt sign went off, I had my backpack shouldered and ran forward about eight rows to speed up my departure from the plane.  I saw a couple people look up at me, projecting that they were wondering why I didn't wait my turn.  I bet for at least four of them I was right from the looks I got, thinking maybe at best they might assume that I was trying to make a short connection.  But I didn't owe them an explanation.  They could presume that I'm just an impatient jerk, if it pleased them; this was advocating for myself.  There was nothing else I needed collect at the end of the path or get out of the bins--I was ready to make my way to the nearest bathroom as fast as humanly possible.  I held one hand against my stomach, waited for the first twelve or so rows to clear out (unbearable slow, it seemed) as I held a hand against my ostomy bag.

Thankfully, a bathroom was in immediate view once I exited the gate.  I made a beeline, found a stall, and threw down my backpack, digging for my spare ostomy supplies.  Then, I could finally lift my shirt and survey the damage:  as blowouts go, this one was not bad, contained mostly to the plastic/fabric of the flange, but the seal was definitely broken.  But the real problem was more emotional:  my confidence was still shattered AND I still had to make my connecting flight.  After a deep breath, I started tucking my clothes out of the way and pulled the bag off, dropping it into the tiny trashcan in the stall for feminine hygiene products, sparing a short hope that there was some kind of lining in this one for whomsoever had to change that later, since I wasn't in a place to confirm it myself.  I cleaned it up as best I could with what I had in the stall, not wanting to venture out to a sink in this case, just keeping my few pieces together.  Putting my connecting flight temporarily out of my mind, I made short work of the bag change and was quickly dressed again.

A part of me was panicking--I had used my emergency supply and I only had one on me.  If something else happened, I was decidedly hosed.  I walked to my next gate instead, resting a hand protectively over the bag to use the warmth to help the bag bond better to my skin.  The panic subsided a bit, apart from the underlying anxiety about not having another backup.  At least the next destination would be home, where I had many, many options for resolving that kind of problem.

Again, not as catastrophic as it could have been, but it colored my day, this before getting into all of the moving stuff no less.  But this is a reality of my life, that I constantly carry the anxiety of a potential leak of my ostomy bag.  This is the first that I had had in months, but what made this one weird was the guilt that I felt in putting myself in that position, by trying to adhere to social niceties (not venting ostomy farts in my seat or adhering to the seatbelts sign).  I don't feel I can decide that rules don't apply to me in some situations, but this will be one worth considering.  Can I weigh my neighbor's potential discomfort against my mental and physical wellbeing?  Will it make matters worse for my flight if I disobey the signs?  I am aware that blowouts are always a possibility, that few things in this world are guaranteed.  What can I do or not do to prevent these or plan for them?  What other situations would I be confined to a spot where I'm not supposed to leave?  What's the right way to say "I'm special and have to bend that rule" to an authority figure?

I carried that secret shame and frustration through the airport, no one the wiser to the level of distress I was feeling, apart from some bad smells.  I had compassion for other ostomates in that moment who have been in similar binds--I cannot imagine trying to explain this to a teacher the first time in a classroom that has draconian bathroom policies.  It stemmed from the societal assumptions that we make, that everyone has a similar set of wants/needs/desires as you do--logically we know this isn't true, but we don't remember much of the potential reasons why someone cut us off in traffic while we're yelling at them for doing so.  This is a problem that a lot of people just don't have to deal with, that they have absolutely no context for.  I don't suspect people to understand it, but that's partly why I'm doing blogs like these.  For those who understand this life and all of its weird little quirks, we have reasons that we seem like inconsiderate assholes.  We don't owe an explanation, but I want to bridge the gap where I can, all the same.  I have a solid mix of not wanting to inconvenience others and not caring what they think about the situation.  It isn't necessarily consistent these two facets, shame vs not, flow into each other in interesting ways, where I cannot always predict what reactions will invoke shame or which won't affect me at all.  I feel that I need to start leaning more toward the "zero fucks given" camp of things, that advocating myself means that I am one of the persons I take into consideration when weighing needs more frequently than I do.  Instances like these will continue to foster more of that growth, where I can also hopefully advocate for others in similar places.

Holy Crow, we are Homeowners!

Oh, the mayhem.  Oh, the humanity. Things have been a flavor of hectic the last while, here, as we are now officially homeowners and all of the logistical insanity that it means (hence missing my normal post date last week--sorry about that!).

After all of the packing and all of the prep, my day started two Fridays ago at 0330, rolling out of bed at Wendy and Jason's pad in Austin, Texas.  I had a lovely time connecting with family that I hadn't had much of a chance to really get to know until that trip, and Wendy had graciously offered to cart my butt to the airport at 0400--I had returned the rental car the night before to have one less thing to do that morning.  Remembering the adage that "Travel is nature's way of making you look like your passport photo," I was definitely feeling it as I rolled into Bloomington airport at around 1100.  We immediately went to sign the last of the paperwork, then I went to the office to fill out the last of my work paperwork, and we went to unload the kinds of items we didn't want the movers to move (stemware, the TVs, fragile artwork, etc.) into our new place.

Does it look any different after we've signed the papers, put our car in the

garage, and set a unicorn in the window?

Andy had since that morning already moved a few boxes into the garage of our new home, but we walked through the front door together for that first "official" trip.  ...and I felt nothing except the weight of the work we needed to do that weekend.  But I can't say I'm surprised--act first, feel later is my pattern (whether "later" is ever well-defined is another story).  We made movements from our old townhouse to our new house a couple times over, stopping for an early dinner eventually:  we can walk to Destihl from our house in about ten minutes.  My request at that point was to have something that had both coffee and alcohol, because I could already feel the punchiness setting in.  I did, after all, laugh for about twenty minutes solid when I said "Vitamin D batteries" instead of "D Cell batteries."  We slept on an air mattress in our new home the first night, on principle and happily cocooned in our own blanket.

Movers started at around 0715 the next morning and made swift, cheerful work of it.  Thankfully the rain held off until the end.  My folks came up and the four of us set to cleaning up the last of the dregs and things we wanted to move ourselves while the movers were managing all of the heavy lifting.  We managed to clear EVERYTHING out of the townhouse by the beginning of the afternoon.  My folks left; Andy's folks came in and took us on a Lowe's run for all those weird things like rakes, paint samples, and other goodies to get us started.  That night, we plopped into our own bed in its new space.

Tulips out our bedroom window!

Day three, Andy and I woke up and started managing the remainder of the pieces we needed to make waffles and prep for the unpacking party.  Filling our home with friends made it feel more like home than almost anything else had to that point.  We had a lot of hardworking help, which included two dedicated bodies cleaning the entire kitchen and unpacking it, assemblers, organizers, painters, sleuths of the great cord mystery, and all-around schleppers of things.  Thank you all for helping us tackle a number of projects and speed up so much of the unpacking progress.  We appreciate all of you for being present and for those that were present in spirit.

Kick-ass claw-foot recliner

Monday and Tuesday, I had all kinds of ideas for what I wanted to tackle and get done--ultimately, my body gave me a firm "you need to sit down before I make you" at a couple of intervals, which led to more than one nap under protest.  At least on Monday we were able to let in Merry Maids to do the final cleaning of the townhouse for us--very glad we budgeted in that expense, for sure. It definitely helped not to have to worry about that one more step.

Feelings so far include first and foremost gratitude for all of the support we've received.  I cannot thank you all enough for your presence, your hands, and your kindness.  Other than that, I'm finding weariness from the work we've done, a bit of relief in checking things off of the list, an itchy feeling surrounding the components left to do, some excitement over a small piece here or there (those glimpses of "what will be" shining out), and an acknowledgement that a lot of this is going to hit hard later, once there has been enough time to process what the hell has happened and what it actually means.

ThunderPix says "...hi"