Category Archives: Out of the Bag

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy
All of your ostomy questions answered: What is an ostomy? How do you shower with one? How is a colostomy different from an ileostomy? What about sex with an ostomy?

Everything you wanted to know about living with an ostomy, we’re letting it all out of the bag!

My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.
Continue reading

Third trimester of pregnancy with an ostomy

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 third trimesterFor anyone who followed along with my pregnancy, you’ll know that the third trimester was not particularly kind to me. I had 4 separate hospital stays during weeks 32-35 for bowel obstructions (which you can read more about here and here), the last of which resulted in an induction and the birth of my son at just shy of 36 weeks.

Thankfully we were mostly done with all of the things that needed to be taken care of before baby’s arrival, but when the doctors first started discussing me delivering early, we jumped into high gear on wrapping up everything that was left to do. Here’s a little of what the final 3 months of my pregnancy were like.

  • I am happy to report that I did not have any major issues with my ostomy bags. They stayed put for about the same amount of time that they did previously without me really changing much in my routine. However, I’m sure this might be very different for other women, depending on how their stomach grows.
  • My stoma got huge! Seriously, it was kind of crazy how big it was. It was at least 20 mm bigger than it was prior to my pregnancy, so this is what changed most in my ostomy routine. I had to order larger size bags, because the wafers I normally use were not big enough. Cut-to-fit has definitely been the way to go, since I never knew quite how big it was going to be, and I just measured it every time before cutting.
  • Even though the stoma was a lot bigger, it was less prolapsed than it had previously been. During the 2nd trimester, I felt that my stoma was hanging out a little far. During the 3rd trimester is was still out far, but more rounded and looked basically like my stoma did previously, just twice the size.
  • Bowel obstructions are no joke. I definitely know now to pay more attention to what I eat during those final weeks, when baby and your intestines are running out of room. In any future pregnancies, I will probably restrict myself to a liquid diet starting much earlier.
  • Eating becomes a lot more complicated when you’re pregnant, because you have to consider not just what you’re eating, but what you’re feeding your child. This becomes even trickier when moving to a liquid diet. It’s difficult to get enough calories, while making sure you are consuming healthy calories, protein, calcium and all of the vitamins that you need. I had to start getting creative with the foods that I ate.
  • Hydration is so important!! I can’t stress this enough. I know I’ve had hydration issues for a long time, which were then compounded by getting an ostomy and have increased further since getting pregnant. It is so hard to stay fully hydrated, and I’m sure dehydration played a role in my bowel obstructions.
  • nst baby ostomyI started getting a bunch more tests done once I started getting bowel obstructions. I had a number of what’s called a non-stress test, which monitors the baby for an extended period of time, making sure the heart rate stays where it should. They have to wrap these straps around you, and almost all of the nurses were concerned about bothering my bag, but it really didn’t cause any issue for me at all.
  • The bag remained easy to empty. I was worried about the logistics of trying to empty it into the toilet, but found that it was really not any different from before. I just had to sit a little farther back on the toilet seat.
  • I mentioned previously that my ostomy became more visible through my clothes, and that definitely remained the case. Thankfully, there are lots of options to help keep it less visible, such as wearing flowier tops or wearing a maternity band.
  • Sleeping was not easy, no matter what you do. Pillows help, but my bag did get in the way sometimes, especially since you’re supposed to lay on your side and it can get squished. However, I did not have any actual incidents with it leaking because I was laying on it or anything like that.
  • I did NOT have a ton of people touch my belly. (Hallelujah!) And no strangers felt the need to do so. Not really a big fan of people touching my stomach at any time, pregnant or not.
  • Thankfully, my pregnancy did not really bother my stoma site. On occasion I got a kick over in that direction, but nothing too bad. Again, I assume this could be very different based on the baby’s position, but I’m glad to not have had to deal with it during this pregnancy.
  • Of course I did end up giving birth 4 weeks early, but thankfully the delivery went smoothly and my son was born perfectly healthy. I’ll share more on his birth in the future.

For any other mommas 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 and second trimester with an ostomy. 

Intestinal blockages during pregnancy

I have known all along with this pregnancy that I could have some complications because of my ostomy. I even mentioned in my post on the second trimester that I was concerned about the possibility of blockages as things progressed. Turns out, it was a valid concern.

Sorry if this is a little long, but I’ll try to tell this story as succinctly as possible. It started last Monday evening. I started feeling a little funny at work and by the time I got home, I was having a decent amount of pain around my stoma. I also realized that I really hadn’t emptied my bag much at all that day. I tried to take it easy that evening, drinking a lot of fluids and staying away from solid food, putting a warm compress around the area, massaging it the best I could and eventually taking a warm bath, all of the old standbys for dealing with a blockage. But this all becomes a little more complicated when you’re pregnant, since you have to be careful about heating your body up too much, plus it’s just hard to submerge a big belly in a bathtub. But hospital ERafter the bath, I was feeling a lot better. I tried to sleep it off and told myself that if things weren’t better in the morning then I would go to the ER. Well, in the morning I was feeling better, but still was having very little output. I decided to go to the ER out of an abundance of caution since I’m also responsible for another life now.

At the ER, they checked everything out and decided it would be best to admit me in order to give me some IV fluids since I was dehydrated and to keep an eye on my output. Normally when someone has an intestinal blockage, the doctor can sort of thump on the belly to listen for certain sounds, and they will usually do an X-ray or a CT scan to find out if a blockage actually exists and where it is. But none these are options when you’re pregnant. The belly thumping is pointless and the X-ray and CT scan can be potentially harmful to the baby because of the radiation, so really all I could do was wait. Not eat anything and wait.

I ended up staying for 2 days, getting lots of fluids and keeping a close eye on the baby during that time. By then my output was getting back on track and I was able to eat solid foods again. So home I went on Thursday.

We had a family wedding going on that weekend, so it was very busy. I felt fine all day on Friday and even when I woke up Saturday morning, my output was completely normal. But about noon, I started feeling blocked up again. At the wedding, I was in a decent amount of pain, but this time it was not focused around the stoma, but rather right between my uterus and my ribs, which is where your small intestine gets smushed up when you’re pregnant. I was also very nauseous. I tried to stick it out as long as I could, but I couldn’t touch any of the food there and was honestly concerned I was going to vomit at any moment. I couldn’t even get water down at this point. I left the wedding early to go home and go to bed.

I felt better being in bed, but when I woke up Sunday morning, I was still in a lot of pain, I hadn’t had any output for close to 24 hours, and I was still nauseous. I knew I needed to go back to the hospital, no matter how much I didn’t want to. This time, as soon as I arrived they took me straight to Labor & Delivery. They checked for any signs of early labor, but the baby was stephanie hughes hospital blockageperfectly content to stay put. While thankfully everything looked great with the little one, I was in pretty excruciating pain. I was literally scared that I could get a perforated bowel that could put both me and baby at a huge risk. I got some more IV fluids which really seemed to help at first, but then the pain and nausea came back just as strong. This time, I did actually throw up some horribly vile looking stuff, which is the first time I’ve actually thrown up from a blockage. I was again admitted to the hospital.

By now I hadn’t eaten anything in over 30 hours, yet I was burping repeatedly, but thankfully did not throw up again. Since I was still having at least a minimal amount of output and I wasn’t throwing up anymore, the doctors figured it wasn’t a complete obstruction, but likely a partial one due to a kink or something like that in my small intestine.

I was still in pain the next day, even after 2 days of not eating and lots of fluid, but it eventually started to subside. They put me on a clear liquid diet and by day 3 I was getting more output, and the cramping was down to a minimum. Still causing a little discomfort, but nothing as frequent or intense.

stephanie hughes pregnant bellyOne upside was I went down for an ultrasound that morning to check on the little one, who seemed to be completely unfazed this entire time, which helped me to relax. It was difficult not knowing what was going on with the baby this whole time. I was on a prenatal floor the entire time, so I was glad knowing we were in good hands and that they were keeping an extra close eye on both of us.

I was able to go home by day 4, feeling a lot better, even though a little worn down. All of this to say that blockages are a real concern when you’re pregnant. And I assume even more so when you’re short like me and there’s just not a lot of room for all of the baby and uterus and bowel and everything else. I would think this would be true for anyone who has had bowel surgery, whether you have an ostomy or not. My surgeon told me that the baby itself is rarely the cause of a blockage and it’s usually due to scar tissue. So I take that to mean that it’s most likely an area of my intestine that has scar tissue that also got jammed up because of my growing belly and the lack of available space.

After spending 7 of the last 10 days in the hospital, I think I’ve decided that I need to stick to a low-residue, mostly liquid diet for the remainder of this pregnancy. (I do not recommend doing this unless you speak with your doctor or nutritionist first!) Both my OB doctor and the dietician said that it should be fine for me and for baby, especially since I’m as far along as I am, but I need to make sure that I am getting enough protein and enough good calories, not empty ones from sugar and such. I know it will be hard, but thankfully it’s only for a limited number of weeks. We will see how it actually goes in practice because I really love food! But I also really love not being in the hospital.

Have you dealt with intestinal blockages while pregnant? Are there any tips you have found for avoiding them? Or for helping them to pass once one starts?

Out of the Bag: Dealing with ostomy leaks

“Leak” is a 4-letter word

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy

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 for any real length of time, 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.

leaks leak output 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 urostomyIn 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 set of clothes 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?