Second trimester of pregnancy with an ostomy

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! pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimest 27 weeksThings 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.
  • pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimesterMaternity 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:pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimester

  • 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?

Here’s a little more about my experience getting pregnant with an ostomy and my first trimester with an ostomy.

Journey to getting an ostomy and back

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.

Lindsey’s story

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.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colon

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.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonBy 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!

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonLooking 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


My ostomy became my blessing

Philip’s story

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.

Philip Blinson crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonAs 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.
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Out of the Bag: Body & weight changes

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyWhen you have surgery to remove your colon and to get an ostomy, your body sometimes reacts in unexpected ways. I can’t explain why it does what it does, but when you majorly alter your body’s normal functions, then it is going to impact other things, as well. I’m sure it reacts in different ways for different people, but there’s a good chance your body will undergo some big changes, one way or another. This was something I wasn’t quite ready for prior to my surgery.

I have debated talking about this because it does not always seem acceptable for a thin person to talk about weight issues. You usually get dismissed as either being ridiculous for worrying about your weight or as bragging about how skinny you are. That’s not my intention here. I think this is an important topic and something that changed for me over the past few years that I did not necessarily expect when I first decided to have this surgery.

Simply put, I’m just kind of a small person. I was before my surgery and I still am afterwards. I am only 5’2″ (and 3/4″!) and for most of my adult life, I have weighed between 100-110 lbs. Of course there are a few outliers in there and to be even more specific, my range was really between 103-108 lbs and would fluctuate between those fairly often. That was my sweet spot. And I knew that if I got below 103 lbs that I was losing too much weight and needed to put a little more on, and if I got over 108 lbs I would start noticing it (in my face mostly) and would do what I needed to drop a pound or two. Even once I got up to 109 or 110, without weighing myself, I would know that I was a little higher than I liked to be.

But after my surgery, things started to change pretty quickly. Within just a few months, I started to notice my weight going up. The funny thing, though, is that I didn’t feel like I was gaining weight. I didn’t notice it when I looked in the mirror or think that I should lose a few pounds. (Although, I do have a couple of pairs of skinny jeans from prior to surgery that I still am unable to get on.) I finally settled in around 111-115 lbs. And that’s where I’ve remained for the past couple of years.

body weight change ostomy surgery colectomy colon stephanie hughes stolen colon inflammatory bowel disease ibd crohn's disease ulcerative colitis ileostomy colostomy urostomy blog Continue reading

Double trouble

profileI am so excited to have the fabulous Thaila Skye as a guest poster for OstoMYstory! Thaila is an amazing advocate for ostomates. She had surgery in 2010 and later started blogging and has a very active YouTube channel with tons videos on living with an ostomy, reviews of products, as well as talking about health and fitness. Her OstoMonday series is great! (Links to everything below.) So thank you, Thaila, for sharing your story on The Stolen Colon!

Thaila’s story

Having a stoma can be difficult at times. But having two stomas? Yep, that’s definitely twice as complicated.

I remember when the stoma nurse visited me before my operation, where they prepare you for what’s going to come. “You might wake up with one bag, you might wake up with two, we just don’t know yet.” Great, that’s exactly what a 24-year-old woman wants to hear. She marked X on my right-hand side, and then another X on the left-hand side. Y’know, just in case.

I woke up in the recovery section of the colorectal surgery ward. It wasn’t just one bag. It wasn’t even just two bags. When I looked down under the sheet for the first time, it was like I was hooked up to the Matrix.

thaila ostomy bagsI had:

  • an ileostomy bag
  • a colostomy bag, just for the mucous in my remaining colon (known as a mucous fistula – how very glamorous!)
  • a huge dressing covering the 16cm laparotomy wound
  • a drain for where my colon had perforated (the reason for my surgery in the first place)
  • an indwelling catheter
  • a morphine drip (temporarily the love of my life)
  • an oxygen tube down my throat

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