I had a great experience being interviewed by U.S. News & World Report for an article on pregnancy with a chronic illness. I hope I did the IBD & ostomy world proud! Here’s a link to the article.
Over the weekend, I officially moved past the second trimester into the third trimester. It’s crazy to think that we’re already in the final stretch of this pregnancy and waiting for our little one to come in less than three months! Things are getting real and I am definitely feeling the pressure of everything that we need to get done and all of the decisions that need to be made. It is a lot to take in and can be quite overwhelming, but we are excited and trying to not get ourselves too stressed out. Just being the planner than I am, it’s hard being in a position where I have no idea what to expect and there’s not a whole lot that I can do to truly prepare myself, since I know that each pregnancy, birth and child is different. But I wanted to talk about some of the things I have experienced over the past three months and what I have learned during the second trimester.
What I have experienced so far:
- I have been pleasantly surprised to be able to keep my ostomy bag on for a fairly normal period of time. Even with my stomach growing and stretching, I don’t feel like I’m having to change the bag constantly. I definitely have to pay a little closer attention to it, but I’m thankful that I’m not having to change it every other day.
- I’m also glad that my ostomy is a little higher on my stomach (just a little lower than my belly button) because that has made it easier for changing the bag. If it was lower, I could see it being on the underneath of my belly, which would make changing the bag more complicated.
- Maternity pants are awesome! Like seriously, I had never thought about pregnancy pants for someone with an ostomy before, but it’s a great idea. They have the built-in panel, they don’t restrict the flow of output in the bag and they are really comfortable. (I’m planning on doing a little more about what to wear during pregnancy soon.)
- Regardless of what I wear, my ostomy is more visible through my clothing than it is normally. This is due in part to it protruding farther forward, but also because most maternity clothes are fairly tight-fitting. It doesn’t bother me too much, but I’ve had a couple of comments so far of people noticing it and thinking it’s something baby-related.
- I have been incredibly blessed to not have dealt with sickness and nausea during this pregnancy. I have still been tired, but not nearly to the extent that I was during the first few months.
- I am ceasing to be comfortable a lot of the time. Whether it’s sitting at work or sleeping at night, it’s a struggle. I have one of those awesome pregnancy pillows which has helped tremendously at night, but laying on my right side is a little awkward with my bag sometimes.
- This kid has been kicking up a storm, which is so crazy! I can’t describe what a strange feeling it is having something moving around and kicking inside of you.
- I have an anterior placenta (meaning the placenta is attached at the front of the uterus, rather than the back, which is more typical) so this usually makes it a little harder to feel the kicks, at first. But what’s interesting, is that I’m pretty sure it’s right where my ostomy is, which I think has kept the baby from kicking right at my stoma spot. Just recently have I gotten a couple of quick jabs right at the ostomy. Thankfully nothing too bad yet, but I can see that becoming a bit more uncomfortable in the future.
- My stoma has definitely changed shape and is a bit prolapsed (or pushing out farther). It’s close to 8mm larger than it was prior to pregnancy, so it’s good that I’m using cut-to-fit wafers for now, especially since the size keeps changing.
Things I am nervous about in the future:
- I have been pretty worried about people touching my belly and therefore my ostomy bag. Since I know people have some odd desire to go touching pregnant women’s bellies, I would really prefer people to not go feeling on my bag, but I’m afraid it might be inevitable at some point. Thankfully, no random people have grabbed my belly yet! (Although I’ve had some family who has and has gotten confused about my bag…)
- As my stomach gets bigger, I’m unsure what it’s going to be like having to empty my ostomy bag. So far, it has been find and I don’t feel like my big stomach is making it too difficult, but I can imagine that as I move into these final weeks that logistics could get tricky.
- I know that blockages can become an issue later on in pregnancy, as the belly gets bigger and the part of the intestine that forms the ostomy opening can get pinched or restricted in some way. I am trying to be extra cautious about what I eat and making sure that I chew really well and drink lots of water, but it’s hard to think about that all of the time.
- I’m hoping my stoma doesn’t prolapse more than it already is. I’m not entirely sure what to do if it continues to push forward.
Things I am excited about in the future:
- I’m excited about these final months and everything starts coming together. I’m looking forward to getting the nursery set up and ready and having some time to celebrate our new little one in the coming weeks!
- I’m not sure there’s a whole lot to “look forward to” in the third trimester (you know, other than backaches and swelling and contractions), since the fun stuff like getting to find out the gender and feeling the baby kick for the first time is already past. I do enjoying feeling the movement, so I’ll continue to be excited about that, but more than anything I’m just excited about getting to meet the little one! I feel like these final 12 or so weeks are simply about making all of the final preparations and then waiting for the little one to arrive.
For any other mamas out there who have been through/are going through pregnancy with an ostomy, what was your experience like? For those who have not, what are some of your concerns if you decide to do so?
I know there are many out there for whom an ostomy bag is only a temporary stop of the journey. That’s why I’m so glad Lindsey is willing to share her story about living with an ostomy bag and now having her colon reconnected.
I will never forget the day that my doctor looked at me and said, “Lindsey, I think it is time that you consider getting a colostomy bag”. At the time, I had been diagnosed with Crohn’s Disease for 13 years. Sure I had flares, it comes with the territory. But never had I flared this badly. After trying a last-ditch effort with more steroids and other medications, I was sent to a consultation appointment with an Ostomy nurse. That day was a game changer for me. I saw my first stoma and it began to set in with my “practice bag” that part of my insides would soon be on the outside of me. My mental health was spiraling downward with my physical health.
I was literally devastated at the scheduling of surgery and I had no idea how to process what was going to happen to me. I was not involved with any support groups and didn’t know a soul with any sort of diversion bag. Feeling very much alone, coming to the decision to get my ostomy bag was one of the biggest battles with myself to date. I had full support from my husband, family and friends but I just couldn’t shake the thought, “Who would ever elect to poop out of their belly?” I felt that no matter what my decision was – bag or no bag – I would have always wondered what would have been if I had chosen the other choice.
But for me, I eventually got the other choice. On February 9th of this year, I had my ostomy bag reversed. What was the one thing that I was most excited about you ask? Well, farting of course! I actually asked my doctor after surgery when I will be able to trust a fart again. He laughed and reassured me that in time, it will come. In a way, I underestimated the reversal surgery. My rectum was very malnourished from not using it for almost two years. Some of the symptoms that I experienced were rectal spasms, urgency, multiple trips to the bathroom, anxiety over leaving the house and pain at my incision sites.
By the time I had my reversal surgery, I had three major abdominal surgeries under my belt with not a single complication. This time was different. One of my incisions became infected and it resulted in a trip to the trusty ER. They had to re-open parts of the incision site which resulted in two open wounds. Both open wounds needed to be packed with gauze twice a day. It by far was not my favorite thing in the world, but slow and steady wins the race. Although we were seeing progress with the infection and healing of the surgical sites, I continued to lose a lot of blood and my persistent symptoms didn’t let up.
Confused as to whether to get my GI back in the game… or stick with my surgeon’s advice, that all of these symptoms were normal… I went with my gut. All it took was one phone call to my favorite nurse and an honest conversation about what I was experiencing. My doctor at the University of Michigan got me a record-breaking colonoscopy date within a week. Sadly, he found ulcers and a narrowing in the intestine, and also discovered that the last 25 cm of my rectum/colon are severely inflamed with active Crohn’s. I began to go all the way back through the grieving process. This reversal surgery was supposed to be a good thing and we were all convinced that I was healthy enough to go through with this. No one could have ever predicted what cards were dealt next. Now my Crohn’s is back full force and I am trying to navigate my way through this winding journey. I don’t know what the future holds for me or my bowels but I do know that if one day I end up with my colostomy bag back, it won’t be nearly as hard as the first time. In fact, I might actually welcome that trusty bag!
Looking back on my nearly two years with my ostomy, I wouldn’t have changed it. Although it was a literally a life changer, I was able to meet some of the best people who are currently in my life. Having my ostomy opened doors and allowed me to grow as a person in ways that I would have never dreamed of. My desire to help others, especially those with IBD is so strong that I can feel it in my bones. My husband and I started a Facebook page to help patients and their caregivers who deal with IBD. We believe that education is power and that this silent disease deserves a voice!
Always know that no matter what hand life deals you, you will come out the other end stronger and wiser for have lived through it. I look forward to seeing where life takes me next!
You can find Lindsey on her new Facebook support page: A Semi Colon Life.
“Leak” is a 4-letter word
I get it. Leaks are scary. They are perhaps the scariest part of having to get an ostomy for many people. And the worst part? Leaks happen.
If you have an ostomy that’s not temporary, I don’t care how careful you are or how often you check and/or change your bag, sooner or later you are going to have to deal with a bag leak. But the good news is, it doesn’t have to be a big deal.
I got my first leak about a month after getting my ostomy. It was one of those where I could smell it a little and I was close to home and able to quickly change it. Since then, I go through long periods of no leaks at all and then suddenly I end up with a leak every day for 3 days straight. Then it’ll go back to a long period of no leaks. I can never find any real reason for it, but I’m aware that it’ll happen from time to time.
I’ve mentioned before that most of my leaks, at least bad leaks, happen when I’m sleeping. Other than that, I tend to get a pretty good heads up that one is coming. The area around the stoma will often start either itching or burning. However, even then, it’s hard to know how bad it is or how quickly you need to change the bag. I am not the type to rush and change it right away, especially if I just recently put on the bag. This is mostly because my skin gets irritated when putting on and taking off a bag too often, and it’s just my personal preference to wait and see for a little while if it’ll actually turn into a leak or if it’s just right there at the stoma. However, I must add that even if it doesn’t form into a full blown leak, leaving output around the stoma can still really irritate the skin. This is something that you’ll have to figure out what works best for you.
In my experience, there are 2 main types of leaks: those that start at the stoma and move out, and those that start at the edges and move in. Most often for me, it starts at the stoma. Now, this next part is going to depend a lot on your output. My output is very thick, so it can get under the wafer and start pushing through. I rarely deal with liquid output, so I don’t have much experience with those types of leaks. But with the thick output, you can often feel the wafer sort of pulling away from your skin. It’s at this point that I know I need to change the bag as soon as I am able to, but I don’t necessarily need to do it that instant. I usually can see the output underneath the wafer, but not at the edge just yet.
But sometimes you don’t get this heads up and you only realize you have a leak once it has made its way to the outside and it’s running down your stomach. Thankfully, with my thick output, this only rarely happens out in public, but this is what happens when I’m sleeping.
I do have some tricks that may help with this, like wearing some sort of wrap. I don’t do this on an every day basis, but there have been times that I have had a leak and the wrap kept it more confined. Also, keeping ostomy supplies with you can bring some peace of mind, but it is sometimes difficult to do this. I don’t prefer to carry them around in my purse (and of course that won’t work for the guys), but leaving them in the car can ruin the wafers if it gets too hot. You can keep some stashed away at work or a family member’s house that you visit often, but otherwise, I tend to only bring things with me if I know I won’t be able to run home easily. Another hack I have found is using a large square bandaid or medical-type tape to close up the leak area. You can keep something like this with you to help out in a pinch and give you more time to get to where your supplies are.
And then there will be times that the edges of the bag start pulling up and it’ll move in towards the stoma. These tend to be easier leaks to deal with because it usually takes time to pull up all the way towards the middle. But it has happened to me before where I wasn’t able to change before it got that far. This does usually only happen at the top of the bag, so it’s not actually leaking out. Patching it up with some tape or a bandaid usually gives me enough time to get it changed.
I do realize that leaks don’t always happen like this and there may be times that someone will have a much bigger leak and, unfortunately, a much bigger mess. This is where I again recommend having a stash of supplies (whether a new bag or something to patch it up) that you can use, at least to get you by until you can get home. And I don’t do this personally, but if it makes you feel more confident, keep an extra shirt in your car.
So the bottom line is this: Leaks are a part of living with an ostomy. But with a little preparation and keeping a level head, it doesn’t have to be something to live in fear of happening. Listen to your body, pay attention to how your stomach and surrounding area feels and you’ll learn when things don’t quite feel right. And of course, there will be times it may still sneak up on you, but that’s when not panicking becomes helpful.
How do you prepare for and avoid leaks? For those with more liquid output, how has your experience been different? Any tips for handling leaks when you’re not home?
I recently passed two important days in my life, not the most important, but important nonetheless. One was on November 14th. That was my birthday. I turned 39 and the countdown to 40 has officially begun. The other was October 4th, which was the day I had what was essentially life-saving surgery that forever changed my life in so many ways.
I was diagnosed with Crohn’s Disease in middle school. I fought off-and-on battles with the disease throughout middle school with many different medication, treatments, etc., with not-so-nice side effects. In high school, I was fairly fortunate because the disease went into remission and I was able to enjoy most of my high school years free from any major flare-ups.
That was definitely the calm before the storm. Shortly after graduating from high school, the disease came back with a vengeance. The Crohn’s began manifesting itself in ways that are not very appropriate to be detailed about. Over the next two years, my physical pain and malnutrition had increased to the point where my life was confined to a bathroom or a bed. I had lost close to 50 pounds in the span of about six months. I was dying.
I would have died had it not been for God’s kindness to me in giving me a mother who refused to bury her son and a doctor who pointed us in the right direction. Long story short, the only way to save my life was to remove all of the organs that the disease had ravaged. Therefore, on Friday, October 4, 1996, I had all of my large intestine removed (along with a few other things) and woke up from an eight-hour surgery with a permanent ileostomy. Although things didn’t get immediately better because I was so sick going into the surgery.
I stayed in somewhat of a remission for the next 10 years. Then in 2007, the disease returned and I had a second surgery to resect a small part of my small intestine and relocate my stoma. By God’s grace, I have been in remission since then.
As October 4th came around a few months ago, I realized that in two years I will have lived as long with an ostomy as I lived without one. That realization led to me thinking about the past 18 years with an ostomy and my battle with Crohn’s. And somehow I stumbled upon the #ostomy and #crohns hashtags of social media. You have to remember that eighteen years ago there were no Facebook or Twitter or Instagram. As I searched #ostomy and #crohns, I found this world of people of which I am a part. I think seeing their statuses and pictures gave me the courage to post one of my own. So, I posted this picture on Instagram with the following: “My every-four-day routine for the past 18 years. Hard to believe that in only two years I will have lived life with an ostomy for as long as I lived without one. It has been a blessing of eternal proportions. It has been God’s kindness to me.” I believe every word of that post.