I could also have called this section "Crapbag's Perspective on Medical Procedures," but I just finished watching Fight Club for the bazillionith time and the mention of raging bile ducts and colons seemed appropriate to this endeavour. First off, I should admit that I am very much a "do as I say and not as I do" person -- pretty much every bit of advice I received about dealing with life threatening/chronic illness I have ignored or dismissed as irrelevant. In the ignore category (at my own peril), went advice such as: avoiding the internet, NOT looking up mortality statistics for my various ailments, attempting to find descriptions of medical procedures/tests/surgeries that I am scheduled to undergo, and continuing to eat strawberries and hamburger buns despite the fact that they are boobytrapped by little insidious seeds that could cause an obstruction or fell me at any moment. In the dismissed category (probably also to my own detriment) go more healthy and constructive bits of advice, such as: avoiding strawberries (after all, what can one little strawberry really do to me?), talking to a counsellor (the hospital tried and I helpfully stonewalled), and ceding the ownership/responsibility of my disease to a higher power and accepting that I cannot change the outcome (I've never been very good with faith in general, or ceding control to anything or anyone. You know that saying "There are no atheists in foxholes?" Well, I think I have been in a foxhole or two and, yup, still a heathen.)
My point for this page, in particular, is to state that I have never found looking up medical procedures or tests particularly helpful. The descriptions I always managed to unearth were usually worst case scenarios and did absolutely nothing to reassure me. However, if you, dear readers, are undergoing any of the tests that I have gone through (or are into S&M and merely curious), I wanted to be able to speak to my experiences. Several things to get out of the way: first, these are my experiences. As I have said elsewhere, this blog is not in any way scientific or medically useful. I make no promises or assurances about your experiences and can only relate what they were like from my perspective. For your convenience, I have linked to the trusty Mayo Clinic where possible so you can get a more medical and unbiased (one might say clinical) perspective. I am not suggesting the Mayo Clinic is infallible, but I have found that they are no- nonsense and relate the information in a clear and concise way. Also, they diagnosed several of my conditions (with the help of my roommate at the time), so I feel like I owe the website a debt of gratitude. The second thing I want to make clear is that I am a giant wuss, particularly when it comes to needles. Please take what I say with a grain of salt and assure yourselves that you will inevitably survive the tests with more grace and aplomb than I did. And the third thing? These tests generally range from mildly unpleasant to things you wouldn't wish on your worst enemy. But, I have survived them. And will survive them again. Keep that in mind...you will get through it, too. I promise.
1. Colonoscopy
I have had this delightful procedure five or six times now, with many more on my horizon to look forward to. This is one of the more commonplace tests that I have undergone, and my experiences have been vastly different. The first time I had one I was relatively healthy and pretty out of it. The next three were preformed while I was hospitalized at my most ill, and they were worse because my colon was so enflamed. The last few haven't been so bad, but that is probably because my rectum hasn't been attached to anything so the scope could only go in a tiny bit (one of the few advantages to the ileostomy and having no colon). But, the general idea goes like this: You get into a gown, get an IV (easier said than done), and then curl up on a hospital bed in a procedure room. You have to lie on your side and hug your knees to your stomach - then you get injected with stuff that makes you float and/or pass out. They insert a tube with a camera at the end into your bum and then snake it through your colon trying to get a clear picture of what's going on, whether through pictures or biopsies. I can tell you that this test is much more pleasant when your colon is not enflamed and narrowed with massive strictures that have essentially closed off your bowel. The thing I remember most about my really sick colonoscopies is the feeling when the tube was stuck on the strictures and the doctor attempted to push past it. The upshot is that when you groan/moan/scream (I am more of a moaner myself), they generally up your IV meds so you float again. I definitely recommend floating.
Upside/Downside: The upside is that the test really is valuable. It probably saved my life, proving to my doctors that regular therapies and medications were going to have little or no effect on my particular case. The downside would have to be Oral Fleet. The day before or the morning of the colonoscopy you are instructed to stop eating and drink possibly the worst tasting liquid ever. It is vile, it is horrific, and it will make you want to throw up. I caution against smelling it first. It is designed to evacuate your bowel, and, well, it's good at its job. I always diluted it with Sprite or Ginger Ale, held my nose, and drank it as fast as I could. Afterwards, shallow breathing helped as deep breaths threatened to bring it all back up again. I also recommend breathing through an open window - fresh air helped me.
2. Endoscopy
To be fair, I have only had this procedure twice. Also to be fair, I found it much easier than an ERCP which I'll get to later. So, similar steps to a colonoscopy (my first one was actually done directly following my first colonoscopy...that really was a banner of a day!): gown, IV and procedure room. However, you don't lie down right away because they spray the back of your throat with a numbing agent. It tastes bad and your throat will constrict in distaste. Once you get beyond the after taste (I remember describing it as what I would imagine rat poison tastes like), your throat goes blissfully numb and kind of kills your gag reflex, which is the point. They put you on your side, and then thread a tube/camera down your throat, asking you to swallow the whole time and try not to fight it. Once it is down, it's not so bad because your throat kind of gets used to swallowing around it. Breathe out when they tell you to and it comes back up pretty easily. Your throat will be numb for a while afterwards and I constantly thought I was drooling on myself. (I was assured by family that this was not the case. But, to be fair, they could have lied to me to increase their own amusement at my predicament). My throat ached for a couple of hours afterward, depending on how much I fought the tube, and I found the popsicles and freezies were a nice balm until the throat calmed back down.
Upside/Downside: Upside is that the test is pretty necessary and they have made it as non-invasive as they can. If you listen to the doctor and the nurses, it will make it easier. The downside is that it's a tube down your throat and in a perfect world it wouldn't be necessary.
(No Mayo Clinic entry for this; I have linked to a rather cool/disturbing video and a fact sheet instead).
ERCP's came into my life following my hospital admittance with the yellows (it's like the "blues", but only for people with jaundice...get it?). They did an ultrasound, suspected I had gallstones blocking my bile ducts and sent me to a different hospital/specialist to perform an ERCP (or, as I understood it at the time, “a-gallstone-removal-procedure”). It is different than an Endoscopy although I am not medically clear on the precise differences. I know it's the same set up: gown, IV sedation, procedure room, numbing spray, and positioned on your side. Then it gets a bit fuzzy from there on out: I remember them inserting a mouth guard so I didn't bite poor Dr. May's fingers off, which I suppose I can understand. He inserted a tube with a camera and biopsy retrieval somethingorother down my throat and somehow got to my pancreas/liver/gallbladder area. Tough luck for me that there were no gallstones and this was my first test to confirm that there was something really wrong with my bile ducts (aka PSC). They ended up putting a stent into the duct to open up the stricture they found there, a by-product of the PSC's scarring. They did this two or three more times until the stricture had healed/calmed enough to stay partially open by itself. I do not currently have any stents in my ducts, but more ERCPs are likely on my horizon as the PSC progresses. (See post made on November 4th, 2010).
They also did an Endoscopic Ultrasound during my second ERCP, but I can't really say I felt the difference. It involved the same tube, some kind of internal ultrasound and more IV sedation then for a normal ERCP itself. So, all in all, good times.
Upside/Downside: For the patient, the upside is if you have gotten through an endoscopy, you should be fine with an ERCP. The downside is that bile duct problems are pains in the ass and an ERCP indicates that you might have a problem with them. But, remember: for people who aren't me: that's a possible problem. Take your doctor's advice this time and try not to sweat it until you have something concrete to sweat about. And then email me and we'll have a mutually destructive pity party.
4. Pouchogram
To me, this was probably the procedure that made me sit back and question whether or not someone in Admitting was simply pulling my chain by making up an almost medical-sounding medical procedure. Joke’s on me, I suppose, because it is real. Pouchogram's, when all is said and done, are relatively easy to navigate. Show up, get gown, sit in procedure room, turn on your side and put your ass toward the radiologist. She will take pictures/x rays of your internal pouch or JPouch. They start by contorting you on the table to get different angles, and then you move to your side and curl up while they inject water up your rear. This is intended to test the integrity of the pouch, to ensure that it has healed and to make sure that there are no leaks. You contort for more pictures, hold the water as long as you can and then go to the bathroom and expel it. No IV's and no needles make this a painless, if undignified, procedure.
Upside/Downside: Upside: didn't you hear me? No needles! Huzzah! Downside: you feel very exposed in that glaringly white procedure room while the bright, bright lights are exposing your rearend to the radiologist, the technician and the two med students watching from the window. But, honestly, with GI and liver problems, dignity is the first casualty. They are not diseases given to modesty, pretty tests or tasty fluids.
MRI's are relatively painless as well, besides the dreaded needle fumbling and tricky IV insertion. You get naked, aside from your underwear, and put on a gown. You are instructed to take off any jewellery or anything else that could be magnetic. They also tell you to keep an eye on any tattoos that you have because if they start to heat up, there could be lead in the tattoo ink that is literally tearing out of your skin to connect with the magnet (or something less dramatic that I don't really understand). So, anyway, you lie in a giant tube and become paranoid about your tattoos heating up (even when they don't) while you are told to breathe and hold your breath; breathe and hold your breath. The machine is very close to your face and it makes a lot of bangs and shimmies, but otherwise you just kind of lie there and breathe when and how they tell you to. The worst part for me is the moment when they inject the dye, in case they floated the IV needle into my arm and not a vein - it burns and stings and otherwise makes your eyes cross until the technician takes your "there's something wrong with my arm" complaint seriously. But, learn from my mistake and speak up! If something feels wrong, tell someone. Don't be afraid to ask questions (this advice holds true for all procedures, but I will offer that coherently complaining while heavily sedated or with a tube down your throat is not altogether easy).
Upside/Downside: Upside? Unless you're claustrophobic, the MRI is pretty much a breeze. But, if you are claustrophobic, tell your doctor and they will give you something designed to mellow you out and will make the whole thing easier to bear. (I personally recommend Ativan for anxiety and “I have an invasive and dangerous surgery tomorrow” sleep issues). Downside: Don't ignore the whole "did you ever work with metals and get them in your eye?" part of the questionnaire. I am not a hugely creative person, but I can imagine that metal shards being pulled from your eye sockets toward a giant magnet would not feel great. Just sayin'.... Oh, and particularly in Canada, MRI times are relatively dear so I often get terrible times when doctor's force the scheduler's to "fit me in". I think my times were like 8pm on a Saturday and 5 am on a Tuesday. The third one was a breeze (time wise), but I had to get to a downtown hospital in Toronto rush hour: The 45-60 minute commute took closer to three hours.
6. CT Scan
Less invasive than MRI's (in my humble opinion), CT Scans are pretty much a breeze. Same gown (without the threats of metal and lead inks), similar procedure room, with the same fumbling for IVs. Your head is not enclosed like with an MRI, so it's usually easier for those of you who are small-space challenged. (Point of fact, I have only had abdominal and upper chest CT's, so I do not know the protocol or procedure involved for other types of CT Scans. I recommend asking your doctor/ the CT technician prior to the procedure if you have any questions or concerns). You lie there, and they take pictures. I think I recall breathing and holding my breath in some instances (similar to an MRI), but I don't think I had to do it as routinely or diligently. At some point, they inject dye for contrast to illuminate areas of concern and/or to see how fast the dye is metabolized.
Upside/Downside: The upside is that this test is pretty pleasant from a GI patient's perspective. Downside: Those damn needles...
I love ultrasounds. Honestly, from my point of view, they are a relatively lovely and pain-free way to get at medical answers. You start with a gown, blow past the IV stage (no need!), and then lie down to have some kind of cold vaseline/gel on your abdomen/chest while somebody runs a metal probe thing over your skin, taking pictures. Sure, sometimes it's cold and it can be a bit uncomfortable when they get you to breathe and contort to get certain images (especially if you have pancreatitis at the time). But, no needles, no scary, banging machinery and no tubes going up or down where no one wants tubes going up or down. All in all, a test I can get on board with.
Upside/Downside: The upside is pretty much everything; the downside is that the gel that they use is literally everywhere afterwards and is impossible to completely get off of your skin without showering. All in all, though, I'll take it.
(Mayo Clinic AND a video. Very cool.)
Oh, the Peripherally Inserted Central Catheter. What a joy you are for me. What a colossal pain in the ass. As you can see, I have a love/hate relationship with PICC lines, largely stemming from my hate/hate relationship with IVs and needles. For as long as I can remember, I have always had decent veins. Not great but as someone with circulatory problems and Raynauds, they really were better than I had a reason to hope. That all changed when my Colitis reared its head in 2008 and literally kicked my ass. It seemed that so many of the things that I had taken for granted with regard to my body were no longer true: the way I went to the bathroom, what I was allowed to eat and drink, my energy levels, my skin colour and pigment, my pain-free body, my hair*, and even my veins. My veins didn't react well to my new status as "frightfully ill girl" and chose to shut down and turtle rather than help me out. Whenever someone wanted to get blood or set up an IV, my veins would disappear or collapse and/or move once the needle was inserted. There was a lot of crying and screaming due to needles in 2008 hospital stays: nurses tried to float needles into my veins (didn't work), they tried to cap my IVs off to take blood and then reopen them (the IVs collapsed), they tried to bleed my fingertips to take blood (the readings were skewed), they contemplated using the veins in my feet for IV/blood access (but because of the Raynauds the veins there were even worse than the ones in my arms), and they had an Anesthesiologist come down and tap the artery in my groin to get 12 vials of blood for testing once (ouch. cock. shit. really, really ouch.). All of this combined to hone my single greatest hospital fear: the needle. I used to be okay with them; I am not any longer. I confessed to my sister once that instead of all of the IV and needle stuff making me tougher, it seemed to be doing the opposite: in fact, now it seems like IVs and needles have made me very, very fragile.
But, all of this led to the object of my love/hate: the PICC. You see, for people with terrible veins or for patients who need constant, reliable access to their veins (such as in cancer patients and chemotherapy), the PICC is kinda great. You go to radiology, they numb you (with a needle that hurts quite a bit in and of itself, but hey), and then they insert a catheter into your upper arm. Through the use of the radiology equipment, they guide the catheter and insert it into a central vein closer to your heart. On the outside of your arm, you have two, sometimes three ports for IV access. For me, they were used for pain meds, TPN (liquid nutrition when I couldn't eat), blood tests when needed and/or running saline and antibiotics. I still had to have another regular IV put into my opposite arm after surgery when I had to have several blood transfusions, so the PICC line should not be considered infallible or able to do everything required. But, finally having reliable access to my veins did calm much of my hospital-related anxiety.
Some additional things to consider, though: I have never had PICCs outside of the hospital and I know they can be a pain in the ass when home care nurses have to come every day to clean them. You also can't shower with them or get them wet. The other thing to consider is their removal: it's a bit more dramatic than having a regular IV taken out. The tape tears the shit out of your arm skin/hair when it comes off and then the nurse tells you to take a deep breath and expel it when they tell you to. Do what they say (and not just because if you don't, you risk tearing the veins near your heart and killing yourself), and you'll be fine. Take it from me, a girl who has had three PICCs over the last three years: it does not hurt when it comes out. I swear, you can't feel it. Just turn your head away (I recommend having someone there who you either love or like very much to facilitate head bury-age, so you can pretend it isn't happening) and breathe when they tell you to. It is over before you know it. Oh, and also: the PICC line holes permanently scar: I have three on my left upper arm. But, really, compared to all of my other scars, these are like pinpricks, so I don’t worry about it over much.
Upside/Downside: The upside is obvious: no more needle sticks (or relatively few). The downside: it aches. A lot. I assume that that is to be expected when something foreign is forced through your veins and into your chest, but whatever. Ice helps calm the ache and nurses are really good about cleaning it and helping you take care of it.
Upside/Downside: The upside is obvious: no more needle sticks (or relatively few). The downside: it aches. A lot. I assume that that is to be expected when something foreign is forced through your veins and into your chest, but whatever. Ice helps calm the ache and nurses are really good about cleaning it and helping you take care of it.
To be fair, I know little to nothing about these next three procedures because I am blissfully out of it for the really gruesome parts. I am sure if you want to see them, you can find a plethora of videos and images on the internet, but I am way too chicken to look into it on my own. Er, okay...on to the Colectomy. Mine was necessary to save my life (or if I ever wanted to leave the hospital again), so I viewed it kind of like a necessary evil. At the time, my diagnosis was Crohn’s, so I understood that my colon would be removed, my rectum stapled up to my abdominal wall (to be removed at a later date through a different surgery), and a permanent ileostomy made in the right lower area of my abdomen. You get wheeled into a giant, cold room with a lot of people bustling around. I already had my IVs, so I got up and moved onto the table that looks like a giant crucifix (and the jokes about an atheist on a cross begin...). Nice nurses talked to me and tried to distract me; I remember that really well. Then my surgeon, the ultimate people person Dr. Helen MacRae, entered the room all scrubbed up. I was hoping for a Grey's Anatomy moment where she would take my hand, listen to my fears and assure me that everything was going to be alright (with very chill Kate Havnevik soundtrack music playing in the background to increase the drama of our words). Instead, our exchange, went like this:
Her - "How are you Andrea?"
Me - "Scared."
Her - "I know."
And then someone injected the good stuff and put the mask over my face and I was out.
I know the after part is more frightening to many people facing surgeries, so I will summarize my experience really briefly. I woke up in recovery, in significant pain, and they quickly taught me how to use my Demerol gun/dispenser (LOVED IT). Back to sleep and woke up when they were trying to get me to "squooch" my body from the gurney to my hospital bed (ow). Got settled and drifted in and out for the day, definitely amusing (if not alienating) visiting family. I was freaked out by a stuffed monkey that was hanging from the top of my bed and I felt like I was being watched and/or stalked by it for most of my stay at the hospital. In retrospect, I would not recommend hanging animals as hospital pick-me-ups. I do, however, recommend small jungle-themed stuffed animals to tote around during hospital visits as needed (for example, a giraffe named “Tip Top.”)
In a display of shockingly bad manners, I would apparently fall asleep mid-sentence, wake up half an hour later and continue the same sentence as if I had only blinked rather than napped. I made best friends for life with my Demerol machine. I tried not to hate my nurses when they came to take out both my anal and bladder catheters (for the record, my rear catheter made me feel as if I was sitting on a substantial and very splintery tree. I do not recommend them, at all, ever. Also, for the record, having them removed was nowhere near as painful as I feared it would be and the relief to finally "dismount the tree" was indescribable). I did hate my nurses when they browbeat me into sitting up, swinging my legs over the side and getting up for the first time. But, they were right and I absolutely recommend listening to them - they are not fascists; they are simply trying to do what's best for you and your health in the long run without caring that it will hurt you in the short term. So, suck it up and do the walking. Allll of the walking. The endless walking. I felt like I, and others in the GI wing, should have been given numbers and colours for our IV poles and hospital gowns (a la Nascar) for people to comment on: "Aaaand #2 in the green overtakes #35 in purple who has been dragging ass all day due to a naso-gastric tube. Still has nothing on #14 who has been doing laps incessantly for 90 minutes in an effort to avoid having a sponge bath by Nurse Hilda...." (and so it goes).
In a display of shockingly bad manners, I would apparently fall asleep mid-sentence, wake up half an hour later and continue the same sentence as if I had only blinked rather than napped. I made best friends for life with my Demerol machine. I tried not to hate my nurses when they came to take out both my anal and bladder catheters (for the record, my rear catheter made me feel as if I was sitting on a substantial and very splintery tree. I do not recommend them, at all, ever. Also, for the record, having them removed was nowhere near as painful as I feared it would be and the relief to finally "dismount the tree" was indescribable). I did hate my nurses when they browbeat me into sitting up, swinging my legs over the side and getting up for the first time. But, they were right and I absolutely recommend listening to them - they are not fascists; they are simply trying to do what's best for you and your health in the long run without caring that it will hurt you in the short term. So, suck it up and do the walking. Allll of the walking. The endless walking. I felt like I, and others in the GI wing, should have been given numbers and colours for our IV poles and hospital gowns (a la Nascar) for people to comment on: "Aaaand #2 in the green overtakes #35 in purple who has been dragging ass all day due to a naso-gastric tube. Still has nothing on #14 who has been doing laps incessantly for 90 minutes in an effort to avoid having a sponge bath by Nurse Hilda...." (and so it goes).
I was in the hospital for two weeks following surgery, mostly because my Ileo was sluggish to start working and I had to walk (A LOT) to get my bowels to wake up and work in a new, unfamiliar way. I do not recommend throwing up - it hurts more than you can imagine when you heave and contort uncontrollably, pulling at your stitches/staples. I do not recommend eating a roast beef dinner as your first post-surgery meal. I do not recommend looking at your new abdominal topography until you're a bit more stable - the shock of the staples and the newly exposed intestine, despite how prepared I thought I was prior to the surgery, remains a vivid picture to this day that haunts me. I do, however, recommend following the ET nurse's advice and doing changes with your ostomy equipment over and over again until your skin doesn't tear/burn and until you feel comfortable with it. It will be an unavoidable part of your life for EVER and the sooner you come to terms with it, the better off you'll be.
In the months that followed, the pathology from my surgery came back and it turned out that I did not have Crohn's but very, very severe Ulcerative Colitis (like top 1% bad Colitis). This allowed me to foster the dream of one day getting my ileostomy reversed and having the internal pouch created. This dream was delayed indefinitely by the PSC prognosis because they weren’t sure if surgical intervention would be necessary in my bile ducts (and if the small intestine would be needed for that instead of for the creation of my JPouch).
Upside/Downside: Upside would be leaving the hospital. Downside, if I’m honest, was my disappointing heart-to-heart with Dr. MacRae.
10. JPouch/Temporary Ileostomy Creation
This surgery was, at once, easier and more difficult than the first. It was easier because I decided to undertake it as opposed to virtually being forced into it by medical circumstance. It was more difficult because the surgery was really a stepping stone to the good one, where I’d actually get rid of my ostomy and be able to be almost normal again. But, I really, really (really) wanted to dump the ostomy, so I tried to concentrate on the prize at the end of the tunnel. I showed up at the hospital the morning of the surgery (nice change of pace, really) and got gowned, IV’d (but not really because the poor guy couldn’t find a vein and they decided to wait until I was in the OR) and sent into the terribly cold, and bright room. I, once again, got on the cross and got settled in. There were a few tears during the “we can’t possibly find a vein so what are we going to do?” portion of the pre-game show and all I wished was that I was already asleep and oblivious. Then Dr. MacRae came in (attempt #2 at our Grey’s moment was even less of a success than the first) and was angry became the operating table didn’t work. So, I got off the cross and switched to a different one that actually moved up and down (or something else it was supposed to be doing). They gave me the gas mask before they found a vein and I think I was pretty much out of it while they finally found an IV (hallelujah!). Oblivion.
More pain when I awoke this time, whether in reaction to the 35 staples dissecting my abdomen or simply in response to my (legal and prescribed) narcotic use for pain management, I don’t know. But, more pain there definitely was. They ended up giving me oxycodone this time when the Demerol didn’t cut it, which I was very much on board with. But, there were other things I was better with the second time around. I got yet another jungle-themed and tote-able stuffed animal (this time an elephant named “Winks”). I got up and walking the second day under my own steam without (as much) browbeating from the nursing staff. I was more comfortable with my ostomy (because it was my second one) and the sight of my staples didn’t send me into (as much of) a tailspin this time around. Although, honestly, it was still quite a metaphorical sucker punch. I had to get another PICC line, but I suppose all things being equal, it wasn’t such a terrible thing to get my hat trick there. The ostomy didn’t take as long to start working so the marathon walking wasn’t as necessary. All in all, eight days in the hospital prior to going home seemed like victory to me.
However, two incisional infections at home, problems with antibiotics due to liver disease, and the new ostomy being a literal and figurative pain to manage diminished my shine somewhat...
Upside/Downside: The upside to this is obvious: one step closer. The downside would have to be that it seemed like a lot of pain for not a lot of gain. But, I suppose that four hours of work on my innards is a lot of gain but to my untrained, non-medical eye it didn’t seem like much. Aside from the fact that my incision is epic. And I can’t decide if it’s horrifyingly grotesque or supremely badass. I’ll keep you posted…
11. Takedown
The first couple of days in the hospital were pretty fantastic. There was no real incision except for where the stoma was stitched back inside, so there wasn't much pain when I moved. I was up and walking the same day and enjoying SO MUCH the fact that my abdomen was mine again... nothing foreign on it (besides a giant bandage, but I was too pleased to be pissy about that). I also completed my jungle trifecta: the piece de resistance was a stuffed monkey named "Dangles." However, once I switched from a liquid diet to a low residue one, I was pretty miserable. (See entry dated 3 March 2011 for elaboration on this point). Christmas was trying because I was uncomfortable and still felt pretty rough - not much energy, no desire to sit up (let alone stand up and mingle with family and friends over holiday punch) and in a lot of pain with no real access to any of my doctors because of the holidays. I honestly would have stopped eating all together if Dr. MacRae's warning hadn't been ringing in my ear: "The more you eat, the faster your body will adjust and the better you will feel in the end." So, I ate even when I didn't want to.
Now, three months out, things have gotten a bit better. I even had one fantastic week where I felt amazing and had energy to spare. This was fueled by the identification of the cause of much of my pain (a stricture that had formed where the J Pouch was sewn to the rectum), the breaking up of said stricture and scar tissue (Dear dilation: I absolutely loathe you. No love, Ang.***), going on a fantastic ostomy-free trip with Garbage Name, AND going swimming in a public place (the hotel pool, but still) for the first time since the Colectomy in 2008. GO ME! I have had the stricture dilated twice thus far and am now on my second course of antiobiotics to clear up the inflammation in my pouch (I am assuming this is "pouchitis", but MacRae has not actually referred to it as such). Anyway, having the ostomy gone is both better and worse than I had ever dreamt it would be: it is AH-MAZ-ING to wear whatever I want and not be stressed about someone noticing the bag under my clothes, or fearing a leak, or dreading setting off security sensors at the airport, etc, etc, etc... However, there has been a bit more of a harsh reality over the last three months than I had really anticipated, characterized by 12-15 bathroom trips a day, the evil, dreaded "butt burn" (the bane of my existence), re-learning my diet do's and don'ts, and losing more weight to the point where pretty much nothing fits properly. But, knowing everything I know now and experiencing everything that I have experienced, I would still have the surgery. Because it allows me to say things like this: I have to go because I am off to hang out in a hot tub with some
Upside/Downside: The upside cannot be overstated: no.more.ostomy.bag! (And, unlike Mandy Moore's character in Grey's, I woke up from the anesthesia, which I suppose cannot be overstated.) Downside would have to be the infections, inflammation, pain and dilations that I did not really have an appropriate appreciation for prior to them happening to me. But, if this is the cost of having the bag gone, I am willing to pay it... (thus far...stay tuned.)
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| Introducing... TipTop... |
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| ...Winks... |
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| ...and Dangles! |
*The hair thing, while seemingly trite in comparison to other hurdles faced, was probably the straw that broke the camel’s (aka my) back. I had great hair prior to being sick. Over the last few of my healthy years, I had finally come to grips with the notion that my giant face was not compatible with short, pixie like hair. Following my hospital stays, a combination of things happened: much of my long, lucious locks fell out, it thinned out drastically, and parts had to be cut out due to outrageously bad bed hair/knots. The final blow came when my hair finally started to grow back in excruciatingly slow increments and came back curly. Not wavy, but crazy tight spiral ringlet curly. Cute curly, really, but the problem is that I am not a cute person. So, on top of suffering medical indignities that I felt acted like a beacon and pulsed to the public “she’s different. she’s sick. she’s fragile,” I now had thin, cute, curly hair that I despised.
Like other things, however this tide seems to be turning in my favour. My hair is finally a decent length and can be straightened when I want without fear of it all falling out again. I also have my hair weight and density back so that I can dry it naturally without my head exploding into tight, girly, cute ringlets. Thankfully some things really are starting to look up; I mean, the ostomies, colonoscopies, endoscopies, ERCPs, MRIs, CT Scans, PICC lines, Pouchograms, Ultrasounds and surgeries are one thing, but don't mess with the hair.
** Don't worry EC: we didn't play "Sitting by the Fire" because you weren't there to enjoy it. Maybe next time.
*** See 3 March 2011 entry "Joy and Misery" for more on this as well.
