“A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” -Eleanor Roosevelt
Recently I’ve had flashbacks to a memory that is more than 15 years old. I remember walking down the long carpeted corridor of my high school. I was in Junior high and my constipation had reached a concerning and medically urgent state. I remember that my doctor had presented the possibility of an ostomy bag if things didn’t improve quickly. Thankfully, the situation did not come to that, but as I leaned heavily against the front of my cold metal locker, I remember thinking that living with a bag permanently attached to me sounded like the most horrific solution possible.
It’s funny how time changes things. How becoming a wife and a mom made me aware of the toll that my nerve-related constipation issues were having on my personal relationships and overall quality of life. How the mental exhaustion of “psyching” myself up for my clean out nights could lead to overwhelming depression. How twenty years of suffering dehydration, debilitating cramping, vomiting, weakness, (and more) on a weekly basis, could transform a once horrific solution into a hopeful one.
This month, I will have been living with my ileostomy bag for six months. Recently I have had several people ask me how it is going and if I’m glad that I chose to have it placed. I’m finally ready to write about that and share much of what has happened to my body and heart in these past six months.
First, the answer to the above question, “Am I glad I chose to have the ileostomy bag put in?” is an overwhelming “YES!”. It’s been a process to be able to say that with as much confidence as I do, and my health is still far from perfect, but here are some of the highlights of being a “bag lady”;
*Improvement in my overall quality of life* I’ve gotten my Sundays back* We can spend time as a family instead of me spending 6-8 hours on the toilet* I no longer have to plan my week around which days I will be sick and exhausted* I can read to Promise at bedtime every night* I can eat healthy fibrous foods without worrying about vomiting them back up* I can follow-through with my commitments more consistently* I have more predictable energy* I rarely have mornings where I physically can’t get out of bed* The weak and “heavy” feeling in my arms has essentially disappeared* While I still have my bad days, overall my Chiari symptoms have improved (which was the theory behind doing this! This is such an answer to prayer)*
While those are the two highlights of having my ileostomy (so far), by no means has this been an easy transition for me. As I’ve been thinking and praying through what I’d like to accomplish through this blog post, one thing really sits at the forefront of my mind; I want this to be a post that people who are facing the possibility of getting an ostomy can have as a helpful resource. I want to provide the information that I wish I had known in the first eight weeks of having mine.
Two things have become apparent to me since openly talking about my ileostomy. First, many people either have or have had an ostomy (or know someone with an ostomy) and second, people really don’t understand the mechanics of how an ostomy works.
I’ve never been one to shy away from sharing the reality of how messy living with a disability can be. I’ve always posted photos of myself post-op, pre-op, etc. without much hesitation or reserve. This entry, however, actually caused me to pause and ask my most squeamish friends (and family) and also my most blunt friends what they thought of me posting photos of my ileostomy. I was assured on all ends that it wasn’t too disgusting and that it is different than just posting a picture of… well… my butt hole. I mean THINK about it for a second. This is now where I poop. So… you can see where the “appropriate” line started to get a little fuzzy in my mind
So, if you have a 3ish year old child hanging over your shoulder as you read this, you may want to come back to this part of this entry later (unless you want A LOT of questions). For everyone else, I hope this photo collage and it’s corresponding explanations help you understand how an ostomy works. (P.S. one very observant friend (who shall remain nameless) asked me if my stoma moves locations? The answer: umm… no. Some pictures were taken in a mirror:))
1. This is Stella, my stoma. A stoma is an “artificial opening made into a hollow organ”. The first picture shows my stoma fresh out of the shower, all clean, no bag, and thankfully nothing coming out of it. Since the small intestine functions involuntarily, it can be a little tricky to get a bag back on before waste starts coming out again. Especially when you’re first learning to put a bag on. Oh and yes, we named mine. Just be glad we went with Stella. Promise’s first suggestion was Roseblood (*cringe*). She’s… umm… creative? I figured it was appropriate to give my stoma a name because A.) I feel like it could someday evolve into a witty Children’s book title… “The Story of Stella the Stoma” B.) It made the whole process a little more fun for Promise and C.) Since “she” is made up of my intestinal wall, she moves involuntarily at all times. It’s kind of like having a small sea urchin living on my stomach. Fun, right?! Stella wasn’t always as tiny as she is in the picture. When I woke up from surgery she was about 3x her current size (which was a little shocking). Stomas shrink in size over the course of the 8 week healing process. Now she’s about 1″ in diameter. The intestinal wall does not have feeling, so it doesn’t hurt if I accidentally bump up against something, etc. This is really good because the majority of my time standing is spent leaning my core against furniture, due to my weak legs and balance. Stella’s kind of slimy all the time. If you flip your bottom lip down… that’s pretty much what a stoma feels like. She was created by making a small incision into my belly button (which still hurts a little every now and then) and another incision at the stoma site. The end of my small intestine was then disconnected from my large intestine (also known as my colon…. did you know they are the SAME thing? I DIDN’T until this surgery) and brought through the opening. Then it is flipped back (think like you’re rolling up a hem of a sleeve cuff) and stitched to my stomach. The technical name for what I had is an End Loop Ileostomy. This is different from a colostomy. A colostomy is placed in the large intestine (very common for colon cancer) and a urostomy is placed in the bladder. Another major difference between an ileostomy and a colostomy is how everything comes out. Since my body now gets rid of everything directly from my small intestine, it hasn’t yet had a chance to go through my large intestine (where the water would be taken out) so it’s still in a liquid form when it goes into my bag. Dependent on what I eat, it can range from very watery to a pudding substance.
2. Alright, moving right along (no pun intended). In this second picture, you’ll see the first step in applying the bag. I’ve placed something called an Eakin Seal around my stoma. It’s packaged in a donut shape and is very moldable (kind of like sticky dough).
I stretch the middle hole of the Eakin Seal to be big enough to fit around my stoma but not too big, or else skin on my stomach will be exposed. It’s important to have a tight seal around the stoma because as the waste processes through the small intestine, there are still active digestive enzymes in it. If these enzymes get onto my skin and sit there, they can actually eat away my flesh on my stomach. I had this issue the week before Christmas (so about 3 weeks after my surgery). It was horrible. It burns and stings and makes it really hard to keep a bag on because it’s like trying to put a sticker on wet flesh. If this DOES happen, you have to do something called cresting. Cresting is where you try to create a fake layer of skin to stick the bag on by sprinkling a powder on the open flesh, then spraying a medicinal spray adhesive onto that, then another layer of powder, etc. in that order until a good barrier is built up. However, it’s so important not to get the powder on the other parts of your skin, or then the bag won’t stick to that part. This gets tricky when the open flesh wound is about the size of a pea. Then, to make matters worse, we discovered that I am allergic to the spray adhesives. If you encounter this, you can order an ostomy belt from a medical supplier and wear the belt extremely tight around your waist to hold your bag on. However (again) because of all of my lower back surgeries, wearing a tight belt like this could be dangerous to my nerves and spinal fluid flow. Let me pause and say that at this point in my recovery I was OVERWHELMED. (I will be doing a follow up blog, after this blog, simply on the HOW and WHAT to order when it comes to supplies. It is simply too much to fit into this blog. That being said, if you are reading this and do have an ostomy that seems overwhelming, DON’T GIVE UP. If I could sort through all of these complications, you can too, and it will be worth it!)
3a. Ok, this is the giant sticker step. I use a 2 piece bagging system, so this part is called the wafer. I prefer to call it a giant sticker. I use the Convatec moldable wafer. (again, a supply blog will be coming because this is just ONE of the MANY options out there). The center of the wafer (where the hole is) is made of a moldable sticky substance. I roll the edges of the inner hole back until the hole is about 1″ in diameter.
Then I remove the plastic from the sticky side and stick it right on top of the Eakin seal, making sure my stoma is centered in the hole. I then rub around the edges because the warmth of my body and fingers helps it mold and stick to my stomach. After doing that, I remove the outer edges of paper and stick the rest of the wafer onto my skin, making sure there are no wrinkles or bubbles. I’ve found it helps to place it as a diamond instead of a square because then the adhesive doesn’t cover my belly button (which can be uncomfortable and tug on my incision).
3b. I wanted to take a photo from this angle so you’re able to see how far my stoma extends out from my stomach. It’s about an inch. Many people have asked me if it can get infected since my internal organs are just “hanging out” outside my body all the time. The answer is no. The skin around it can, but God’s made our bodies so incredible that the intestinal wall is used to handling some pretty hardcore bacteria.
4a. & b. This is the same step, just from two different angles. This is the last step in the 2 part bagging system. I like to call it “snapping the tupperware” because that’s really what it feels like. The wafer has a plastic ring that snaps into a concave plastic ring that is on the bag. I literally have to hear it snap together to know it’s on. Some people prefer to snap it together before sticking the wafer onto their stomach, but with the solid bag, I find it’s hard to know if I’m getting it centered over my stoma. If you’re using a transparent bag (which you should for the first 6-8 weeks post op) then definitely snap it prior to sticking the wafer on. As you can probably imagine, it kind of hurts pressing down around the edges of this ring to get it snapped securely. Once the bag is snapped on, you take the opposite end of the bag (called the tail) and roll it up and Velcro it closed.
5. And Voila! My bag is on and ready to go. I’ll keep this bag on for 3-4 days and then do this whole process over again. To empty my bag (which is different than changing my bag) I un-velcro the tale end, while sitting on the toilet, and then it all just empties into the toilet. I have a little squirt bottle that I rinse the tail off with and then wipe it clean with toilet paper, roll it back up, and re-Velcro it. I don’t even have to pull my pants down if I don’t want to!:) This takes about 2 min compared to the 6-8 HOURS I would spend sitting on the toilet after over-dosing on laxatives. Plus I’m not throwing up, never feel bloated, not experiencing cramping, and I’m not blacking out. Yes, I have an itchy and sometimes annoying giant sticker on me and yes, there are still things that are hard about it, but overall it’s definitely been the right choice. I feel healthier, too, and I KNOW it’s healthier for my body.
It’s been a learning curve to figure out the new digestion and absorption process that my body is now going through. I have had to switch from extended release medications (that are supposed to sit in your colon) to immediate release medications. I have a pretty intense electric juicer so Promise, Chris, and I juice raw fruits and veggies at least once a day. My body is able to absorb the nutrients much quicker this way, plus there is no risk of intestinal blockage happening. I also drink a lot more water, now that my colon is never given the chance to absorb it. (*Quick side note. If you ever juice a purple beet, don’t freak out when you empty your bag and it’s fuscia pink! And I don’t suggest juicing beets before going on an airpline…not that I know from experience or anything…*)
Swimming has also been a little bit of a curveball. Thankfully, I live in WI and don’t really have to worry about the temperature going over 70 degrees anytime between September – June (blah). And for those rare times that I do find myself in a pool, I’ll wear a one piece or a cute high wasted 50’s vibe two piece that showed up in my mailbox one day (thank goodness for friends who have listened to my insecurities, post surgery, and decided to just order and ship me this cute suit:)).
I don’t feel like I’ve had to change my clothing too much, which is good because I generally like my clothes but is unfortunate because I also like shopping.
Probably one of the most annoying things about the bag is when it fills up with gas. (yes, you could say that I now fart out of my stomach… which is a little weird). When too much gas gets trapped in the bag, it gets puffy like a balloon. In that case, I just have to move to an area with good ventilation or the bathroom to “release my gas”. If Chris is ever being too annoying, I now use it as a threat against him (“Don’t make me release my gas by you!”). Promise will occasionally refer to my bag as Baymax, the puffy marshmallow robot from the Disney movie “Big Hero Six”. There is a scene in the movie where Baymax is too puffy to fit through a tiny window so he says in a robotic voice, “please wait while I deflate some air”. Promise has picked up on this and will occasionally leave me notes on the toilet that say, “You are like Baymax, Mommy. Please wait while I deflate my bag”. Smarty pants.
It gets especially puffy at night while I’m sleeping, so my sleep has become a little more restless. Occasionally, I won’t achieve a tight seal on my bag and it will leak. This has happened while I’m driving, in a faculty meeting at the University where I teach, chalk drawing with Promise on the sidewalk, and even in the airport security line (again… back to the beets). During those first 8 weeks of my recovery this was so frustrating and discouraging. Now it doesn’t happen as often, but still will on occasion, so in addition to carrying my catheters around with me, I now also carry additional ostomy supplies. This is why I have such large purses.
One thing I wish that I would’ve known to do differently is take more time off from work for the recovery. I teach Fashion Illustration and Portfolio at a local Milwaukee University and I only gave myself one weekend between the Thursday morning that I had my surgery and then the next Tuesday when my class met. I should have allowed myself at least 6 weeks off because it’s such a huge life change. I also had home nurses who visited me for the first week home from the hospital, so it’s important to be resting and learning how to take care of your stoma.
This surgery was just as much (if not more) a mental battle as it was a physical battle. Immediately after surgery I would have people say to me “but aren’t you SO thankful you don’t have to take senekot anymore?!” in response to my frustrations with the new appearance and function of my body. This was really hard and discouraging because of course I was thankful to not be going through that anymore, but I was still working through the grief process of having my body once again, physically altered. Neither situation is ideal. It was a matter of “picking the lesser evil” and coming to terms with the harsh reality that “normal” will never be in the game plan for me.
If you know someone who has or is currently going through a change that affects their physical function or appearance (not by choice), give them time to grieve, process, and mourn the loss of the body they had gotten used to. It’s not that they’re not thankful that this might improve their quality of life, it’s just that they might be sad for a while (and periodically forever) that their function might never be fully restored. I am a very “half glass full” type of personality, but this was really hard for me to process and still is on some days. And I’ve learned to just tell myself that that’s OK.
Again, this body is not my final home, Praise God!
More to come in a later post…
Revelation 21: 1-5
“Then I saw “a new heaven and a new earth,” for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away. He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true”