Q: What is this jargon you keep tossing around: ostomy, stoma, JPouch, bag, colon, bowel, intestine? What does it all mean, Basil?*
A: In short, here is what they all mean: A stoma is the literal, actual piece of intestine that comes through the skin. (I have tried to name mine several times, but most of the time ironic, punny names worked best for me and my warped sense of humour. For example: shithead. Sophisticated? Not in the least. Amusing...you bet! Oh, and Bob stuck around for a while, but when you really want to curse and rail at the fates, Bob isn't as cathartic as other words. So, Bob died a quiet death and was replaced by "Sonofabitchmotherfucker.")
An ostomy is the term for any artificially created surgical opening for the express purpose of the elimination of bodily waste. A JPouch is the term given to the pouch surgically created through the relocation and moulding of the small intestine. The purpose of this artificial pouch is to mimic the functionality of the colon, by storing waste materials until they are expelled from the body through the rectum and anus. Not coincidentally, the pouch is shaped like a "J". Bag, for the typical purposes of this blog, is used to indicate the external pouch or bag that the stoma empties into. The colon and large intestine are the same thing and they comprise the bowel with the small intestine. Small intestine/small bowel; large intestine/large bowel -- they mean the same thing. The large bowel (in a sick twist of medical jargon) is actually smaller than the small intestine; the large intestine is approximately 5 feet long in an adult male, while the small intestine typically ranges between 20-23 feet. The small intestine is subdivided into the duodenum, jejunum and the ileum (see next question) and the large intestine is subdivided into the cecum and the colon.
 |
The diagram above clearly illustrates the differences in size and terminology for the intestine (both large and small). In my case, imagine that picture without the large intestine (both cecum and colon) and the appendix. The entire inverted "u" has been surgically removed and the small intestine manipulated to create my internal Jpouch (see below). |
Q: What is the difference between an Ileostomy, a Colostomy and a Urostomy?
A: The more common of the "ostomy" family is the colostomy, which is made so because it is a surgical option for people with different types of GI cancers as well as for patients with specific presentations of IBD. The ostomy portion that comes through the abdominal wall (i.e. the intestinal piece where stool is evacuated) is part of the colon. Typically in these cases, part of the large bowel remain healthy, so portions of it continue to function for the patient. The colostomy ouput or dicharge is much more formed (or solidifed) because the portion of large bowel that remains absorbs some of the water before it passes out to the bag. Typically, colostomy patients have one-piece bags (which I will address later on in the FAQs) that they change everytime the bag gets filled to a certain point (usually once a day, I believe).
A urostomy (of which I am the least familiar) occurs following a surgical opening through the urinary system. This is usually due to problems in the urethra and/or bladder with regard to long-term drainage. The bags used for urostomies, I believe, are larger and longer than either colostomy or ileostomy bags because of the nature of the discharge, which is entirely liquid. From what little I have looked into this matter, I can tell you that many people have the urostomy bags partially run down their inner thigh and oftentimes the bags are secured in place through the use of fabric belts.
I have had two ileostomies in my life. When I had my first surgery in May 2008, I was told that I had Crohn's and that I was getting a permanent stoma. This meant that they pulled an end piece of my ileum (the final section of the small intestine, approximately 5-7 feet long in itself) out to my abdominal wall to create the stoma. It was approximately 22-25mm in diameter and was located just under my belly button on the right side of my stomach, protruding about 5-10mm from the surface. Following my second surgery in August 2010, they took down my permanent stoma and replaced it with a temporary "loop ileostomy". If you examine the diagram above, you will see both the "temporary ileostomy" and "JPouch" indicated. The loop of bowel is in approximately the same position as the first stoma, and is approximately 18-20 mm in diameter. The loop is essentially a kink in the small intestinal tubing to allow the JPouch to heal before asking (demanding) that it work more normally. I tend to think of it as a kink in the garden hose; once they open me up again in a few weeks, they will unkink it and the JPouch will begin to function in much the same way as your colon does. (I really, really hope.)
Q: What is the downside to having no colon?
A: Well, aside from having to either have an internal (J) or external (ostomy) pouch to eliminate waste products, I suppose from a medical standpoint it is not such a big deal. The colon is responsible for absorbing potassium, sodium and water. Water is the key here, for several reasons. In addition to having to consume between 2-3 litres of water a day to avoid dehydration, the lack of water absorption is what makes ileostomy and Jpouch output less formed than "normal" stool -- because it is the colon that absorbs water from your waste materials and compacts them prior to them passing through your rectum and anus. The potassium one is not generally a big deal; they do have to monitor the levels with routine blood work, but if it's down it's not usually a big deal to eat a banana or two to get the levels back up. (ANG EL COMPLICATORO ALERT: Except in my case because I am allergic to bananas and cannot get my potassium this way.) The sodium thing I actually enjoy quite a bit because it provides me with an excuse to eat salt and lots of it. While family and friends try to regulate their sodium intake, I get to put additional salt on my fries (mmm, "salt salt salt, I love salt"). While everyone else is eating those high-fibre dried fruit probiotic no soy or wheat gluten calorie-reduced social tea biscuits, I consume full-fat potato chip deliciousness on doctor's orders. (a girl's got to have some upside in life after all :).
Q: Is Inflammatory Bowel Disease Curable?
A: I suppose the most clear and concise answer would be to say yes and no. With regard to Ulcerative Colitis patients, the "cure" comes when the colon, or source of inflammation, is removed from the body. UC patients do not see inflammation outside of the colon, so once the diseased organ is removed, they are typically left with no more flare-ups. This is not to say, however, that life is peachy keen perfect, as I have discussed above. Also, in my case, my original diagnosis (back in 2006) had been prompted by blood in my stools caused by Ulcerative Proctitis - which is disease limited to the proctol region of the rectum. They have removed my colon, but I still have my rectum so a small portion of my disease still remains. However, this has largely been controlled through the use of mesalazine suppositories and, when necessary, a stern talking to for my bum that generally sounds like this: "there is nothing wrong with you. you will be fine. you will work. you are fine."
CD patients, on the other hand, are in it for life. The reason I originally thought my ileostomy was permanent was because my case presented as Crohn's disease and not Colitis. From what I understand, these two are difficult to distinguish sometimes, particularly if the UC is severe enough to present with stricturing around the bowel (something present in only 1% of Colitis patients). So, with it being CD originally (they thought) there would be no point in reversing the external pouch to an internal one because CD can present anywhere in the GI tract, from the mouth all the way to the anus. This means that the esophagus, stomach, small intestine, rectum, anus (and all the fun bits in between) can be involved in flare ups and other terrible stuff. Thus, there would be no point in reversing an ostomy procedure if the doctors could not guarantee that the small intestine used in the creation of the pouch would not be the next thing inflamed and requiring surgical intervention. Two important people in my life (we'll call them Bear and Alien) are struggling with CD right now and, while it does not often happen, I find myself grateful that (with regard to my IBD anyway) I got diagnosed with the lesser of two evils...
Q: What are your dietary restrictions?**
A: Well, I categorize things into four basic groups: the "never nevers", the "should nevers", the "if you musts" and the "colitis happy time diet." In the "never nevers" category are a smorgasbord of deliciousness that tempt and taunt me without respite. One of the cogs of ang's holy trinity of deliciousness (smartfood, diet coke and sangria) is very much in the "never nevers" category: cheesy, white delicious, flavourful, delicious, un-nutritional, delicious popcorn (aka Smartfood). Along with that goes the following: no popcorn, no corn, no nuts, no seeds, no dried fruits, no spicy food and no celery or any other particularly stringy vegetables. For the most part, the "never nevers" are comprised of foods that could potentially prove life-threatening if they cause an obstruction. The hole, or tubing, leading to the opening of my stoma is much smaller than the openings provided to normal GI-tracters, so things that do not break down (nuts, corn and seeds) and things that become stringy and could potentially cause a blockage (celery, asparagus, snow and snap peas, etc) threaten to obstruct or block the small intestine. Were this to happen, the usual course of action is more surgery, which I am hoping to avoid at this point. I figure I have enough necessary or required surgery that I don't need to go looking for elective surgery, despite how much I LOOOOOOOOOVE Smartfood, almonds, pistachios and cashews. (*sigh...okay, fit of pique over).
The "should nevers" are largely things that technically are in the "never nevers", but I barter with some of the grey area in this world and negotiate small, tiny tastes. To the more rule-stringent of the world, I suppose you would label it cheating. Sometimes I eat strawberries, despite the seeds, especially if they are coated in chocolate deliciousness. I also often find myself cheating on the seed front with regard to hamburger buns -- I am powerless before a BBQ. When I'm really, really low you may sometimes find my head shoved into an empty Smartfood bag or an empty almond package, licking the salt and/or white cheesy content off the inside of the bag...don't judge me too harshly.
The "if you musts" comprise the majority of the food of this world that is either good for human digestion and general health, or tastes remotely edible. For example, most vegetables and fruits fall into this category because I can't eat much of them in one meal, nor can I simply eat a salad and nothing else. Pretty much anything with sugar content or is dairy-based also goes into this grouping, because I cannot simply eat sugary stuff without balancing it with the contents of our last category, the "colitis happy time diet." In this category you find the bread and butter (if you'll pardon the pun) of my diet: white carbs, more carbs and some meat. Potatoes, white pasta and white bread are absolutely clutch; with potato chips and non-fibre crackers batting clean up. Ang wants an apple (aka something from "if you must"), and it has to be balanced with two parts of "colitis happy time." Don't feel like that much food? Oh well, you're going to have to drop the apple then and just eat the carbs.***
In closing I will say this: you heard it hear first folks, scour your newspapers and I'm sure that you'll find a small story below the fold about the first case of scurvy in North America in a decade or something. That will be Crapbag, providing entertainment for the masses once more...
Q: How do you, ya' know, go?
A: Well, it took some getting used to at first, but I am so used to it after three years that I forget some people may not understand the mechanics of it. First off, let me clear up a few things: I only have bowel movements through the stoma; I still go pee the way normal people do. So, next time I drink a 2L bottle of water and say I have to go the bathroom, don't wonder why... Secondably, the reason I have to wear the appliance all the time is because there are no nerves involved in the stoma. That means that I cannot feel it when I go to the bathroom and I have no idea when it is happening. Colostomy patients have a bit more control because their food sits in the remaining portion of the colon, having water, sodium and potassium extracted. This additional process essentially means that colostomy patients go to the bathroom approximately once or twice a day. Ileostomy peeps are blessed with a pretty continuous stop/start/trickle routine that makes it impossible to do what colostomy people can do: wear smaller appliances that are easier to conceal under clothes, wear a stoma cap (a small top piece for the overall ostomy appliance that does not have bag - it's like a lid on a pot when the stoma is quiet), or teach your body to only go once a day when you want.
So, I suppose the answer is: I go all the time, without my knowledge. Think of it like this: your body is constantly and continuously contracting and moving food and waste products through your GI tract - through the esophagus to the stomach, to the small intestine (all 20 feet of it), into the colon (if you still have one), then to the rectum and anus. It is there in the rectum and anus that you begin to feel pressure and the urge to go. Well, in my case, you bypass the colon, rectum and anus because I am missing a colon and the anus and rectum are no longer connected to the small intestine. So, the contractions of the intestine are constantly moving waste products, only they exit my body directly from the small intestine and do not travel the rest of the way like in a healthy person. As such, I have no idea when I am going or when it is happening. For ileo patients, though, you eventually notice that the bag is getting heavier, fuller, or out of habit you simply go the bathroom every couple of hours to empty it. It is not uncommon for ileo patients to empty their pouches 6, 8, 10 times a day. But, as many UC sufferers will attest: that beats the snot out of being afraid to leave your house for fear of not being able to find a bathroom in time. I cannot speak for people who lived like that for years because my onset was so sudden and so debilitating. But, I can tell you that schlepping to a hospital washroom 15 times a day with a backless gown that your ass is hanging out of and tripping over duelling IV poles... those were some good times. (my sarcasm comes across, right?)
Q: What does an ostomy appliance look like?
A: With regard to what the stoma actually looks like, I will demur and direct you to many of the image searches available on the internet. While this blog is intended to be both empowering and emancipatory for me, I am still not at the point where I want to be putting pictures of my intestine online. I am just not that big of a person. So, search for "stoma", "ileostomy", "jpouch", etc. and you'll get a pretty clear (if not gruesome) picture of what it all looks like.
With regards to the ostomy appliance itself, I suppose the easiest way to speak about it is to take you, step-by-step, through the "change" process. For ileo patients there are a plethora of products available, as is the case with many personal hygiene products (think about the sheer variety of maxi pad/tampon/panty liner products there are out there for women). As is the case with women and what they choose to use for their “monthlies”, what an ostomy patient uses is a pretty personal decision that is based on a lot of trial and error in the first months they have one. I, along with many ileostomy patients, decided on a two-piece system. A one-piece system is designed so that the part that actually adheres to the skin (the flange) and the portion that collects the output (the bag) are one continuous piece of material; you cannot just change the bag or the flange, you must change it all at one time. Also, with many one-piece appliances, there is no mechanism for emptying waste from the bottom of the bag; thus, when it becomes full you have to change everything. For ileostomy patients, that would invariably involve changing the entire appliance 6-10 times a day. Which would not only prove tedious (each change takes me between 15-45 minutes depending on various factors such as where I am, how active the stoma is, and how aggravated the skin surrounding my appliance is) but also be ridiculously expensive (each pack of 10 bags is approx. $50 and each pack of 5 flanges is $55…I’ll let you do the math because as I’ve said, I suck at it.)
So, I use a two-piece system and proceed through the following mental check list:
1. Measure the stoma. The size fluctuates for approximately 4-8 weeks following surgery due to swelling.
2. Cut a hole in the centre of the flange to fit your stoma size. You can buy them pre-cut; however, I have found that they are much more expensive this way.
3. Peel the sticky, adhesive plastic off of the flange and apply paste. I tend to use a paste ring, which you can simply mold by hand to fit the stoma hole you have cut. I have found that this is the easiest way to ensure that the depth and density of the paste is uniform around the entire opening.
4. Apply the flange, sticky side down, to your abdomen. Ensure that there is a bit of space around the entire flange opening so that when the stoma expands and contracts it will have room to do so. (Common sense alert! Exposed intestines are pretty friable (aka fragile). If you apply too much pressure with the gauze while you clean it, or if the stoma expands and is too close to the edge of the flange, it will bleed and bleed a lot. Remember: exposed intestine.)
5. Visually inspect the bag (the second piece) for any damage (no sense going through all of this trouble only to have it leak due to manufacturer error). Close the bottom of the pouch as per the instructions (fold it up, Velcro down and then Velcro the sides). This is the opening that you use to empty the pouch as needed without doing an entire change of the appliance.
6. I apply 6-8 drops of ostomy deodorant into the bag, and try to do so most of the time when I empty the bag. (Common sense alert! I cannot imagine a scenario where this would occur, but I’m the guy random stupid stuff happens to, so here’s a head’s up: do not ingest (aka drink) the deodorant or in any way put it in or close to your eyes. From what I understand this stuff is highly poisonous, could cause blindness and has many of the same chemical properties as anti-freeze.)
7. Clip the bag to the flange and run your hands around the entire circle to hear a second snap as the plastic catches. (Common sense alert! Make sure you lock the bag into place, if the appliance that you are using has such a feature.)
8. I hold the entire system with my hand for about 5 minutes afterward to try and ensure that the flange gets a good seal to the skin.
So, that’s how I would describe the ostomy and what it looks like. Here are some images to help clarify what I’ve discussed above.
 |
| Here is what two-piece appliances look like. The one on the right is a drainable pouch (typically used for ileostomies), whereas the one on the left has a closed bottom, used for colostomy patients. As you can clearly see, the flange has a hole in the centre that you cut to size, you peel back the blue tab to adhere it to the skin and then the white plastic clip on the bag fits to the opposite side of the flange. The large white tab pointing to 4-5 o'clock is the locking mechanism. |
 |
| The drainable bag for a two-piece system. |
 |
| A trio of flanges. Note the white hook/holes at 3 and 9 o'clock; they are what the ostomy belt loops into. |
 |
| A one-piece system. As you can see, the bag and flange are attached and cannot be separated. Thus, the bag cannot be changed while the flange remains adhered to the skin. Also, it is a closed bottom appliance, so when the bag is full, the entire appliance has to be changed. (Typically used in colostomy patients). |
 |
| A stoma cap. Used at times when the user wants the ostomy to be more discreet, such as swimming, sun-bathing, etc. It clips to the flange in much the same way as the bag does and then locks into place. |
Q: What is the difference between loop and end ileostomies?
A: I was originally diagnosed with Crohn's because my colon had massive strictures in it. Strictures are not evident in 99% of UC patients, so they assumed that I would be part of the majority and, on that basis, diagnosed me with CD. As such, I was given a permanent ileostomy. This is also known as an "end ileostomy" because the stoma is created out of the end of the small intestine (specifically the ileum). The second surgery occurred once they had confirmed that I have severe UC and not CD. They created the JPouch using part of my small intestine and, partly because they needed to manipulate the ileum to create the J, they also collapsed my permanent ileostomy and constructed a temporary (or loop) ileo instead.
The loop ileostomy is vastly different than the end; something that I did not fully appreciate prior to the surgery. It has two holes instead of one because it has both an upstream and a downstream flow (see image below). It also sits closer to the skin because it is constantly sinking back into the stomach. (When I woke up in the hospital after surgery #2, there were two rods underneath the stoma to try and keep it above the surface of the skin. FYI: the removal did not particularly hurt when it was done a few days later. However, I have noticed that this stoma fluctuates in size and height much more drastically than my first one.)
 |
| The image is better understood if you visually rotate 90 degrees. On the left you can see the loop ileostomy, with both upstream and downstream "flows" attached. Imagine it like a kinked garden hose; the upstream flow comes from the mouth and stomach and, as such, this is the hole that waste materials are eliminated from. The second, or lower, hole does not pass waste materials but the mucus that is generated by the constant contraction of the intestine. To understand it a different way, when I had my pouchogram, the water they inserted up my rear to check the pouch overflowed the Jpouch and some of it came out the second (mucus) hole. In other words, water came up the downstream. My next surgery will "un-kink" the stoma and the upstream and downstream flows will merge into one cohesive intestinal tract. |
A: I suppose that would depend on who you ask. According to my "living with an Ostomy" promotional/propaganda materials, there is nothing that we ostomates can't do. Have kids, go swimming, do tae-kwon-do, run for President (and, no, before that rumor starts and begins to haunt President Obama: he does not, to my knowledge, have a secret ostomy), play football, sing opera, become professional chefs, etc, etc. We can rule the world!
In my experience, however, there are finite limits to what I felt comfortable doing with my ileostomy. My big thing at the beginning was my debilitating fear that people would somehow know; that the stoma was literally a beacon pulsating to the tune of "look at me, look at me, look at me." To be honest (and with three very long years worth of perspective), I have come to the conclusion that the decision to tell people or not tell people is pretty much entirely in yours hands. To help me feel more comfortable with "my secret", I began to dress with a nod to the activity I was undertaking. For example, if I knew I was going to see a 3-hour movie, I would make sure that my pants had a bit of give to them so that the bag could expand on its own. In so doing, I would consciously ensure that I was wearing a looser top/long scarf/big, comfy sweater to help me feel more confident and comfortable when leaving the theatre. In other circumstances, I switched to empire waisted dresses for formal occasions and learned that some materials were really good at producing/encouraging leaks.**** Oh, and at parties where I knew I would be eating more risque stuff (fajitas, vegetables, unknowns), I tended to trend towards dresses. Thankfully, during my ostomy years, the boho/baggy look was in fashion. Otherwise, I think I would have simply worn a burlap sack, a top hat and a fake mustache and gone outside only when absolutely necessary (for example: running out of eggs during my 'roids ragers, if the house caught fire, to see Harry Potter...).
With regards to other activities though, the big one for me was swimming. Over time, I got more comfortable with my circumstances and was able to get into the water (most of the time with help from my bodyguards TBagg and Snat) and float on inflatable rafts. If I knew I was close to having to do a change, I would sometimes get up the courage to tape down the appliance and go for a quick swim. But, I found that swimming loosened the appliance and I was too nervous/anxious to ever swim in public. I know that the majority of ostomates are comfortable with swimming, with wearing bathing suits, public sunbathing, etc. But, this is simply one area, among many, where I failed to live up to the courage of other ostomates. Aside from swimming, I pretty much got back to doing most of my activities. The only things I really had to think about were driving (particularly the seat belt issue: is it okay to sit across your stoma? will it be damaged? By the way, the answers are yes, it can sit across your stoma and no, it won't damage it), going to the gym (under very limited circumstances because I am extrrrrrremely lazy), and diet (everyone has to figure that one out on their own). Other things, besides swimming, that I have pretty much taken a pass on include tubing (I lovvve tubing, but I quaked at the thought of what flying off of the tube at high speeds would do to my flange adhesion), and riding roller coasters (the restraints tend to precisely land on my stoma and the jerkiness of sudden stops, starts, turns and loops do absolutely nothing to soothe my pancreatitis).
However, let me be clear. These answers apply to me, and me alone. I am sure that other ostomates will be far more courageous than I was. Er...so, here's my motivational message for all of you to get out there. Please choose all that apply: Go for it! (Connect Four); Keep fit and have fun! (Participaction); Only you can prevent forest fires! (Smokey the Bear); and Don't Drink and Drive (MADD, Crapbag and anyone else who is not an idiot).
Q: What meds did you try? What about Remicade?
A: Please go to my home screen and look for entries regarding the superhero Enormo Face. That should explain what you want to know. If not, send me an email and I'll expand on the details that you are looking for.
More to follow; watch this channel. In the meantime, if you have any questions you want addressed, or desire more information about something contained within the blog, please feel free to visit my Contact Crapbag page for information on how to do it. Cheers!
*Austin Powers Reference
**These are at present and may change in the next months as I adjust to living with a Jpouch. If anything changes, I will update accordingly.
***Sure, sure...be jealous now of the carb-aholic diet. But, soon, you start to crave carrots and dip, apples with peanut butter, a hard boiled egg or (gasp!), a simple salad for lunch and you remember: no veggies for you! Folks, I want the veggies. I haven't had the veggies in three years. I must have the veggies soon. If not, I will go into pickle-withdrawal...and believe me when I say that no one wants to see that.
****In perhaps one of the most selfless acts I have ever witnessed, my
