Tag Archives: ostomy blog

My ostomy testimony

6 years.

stephanie hughes stolen colon ostomy anniversary inflammatory bowel disease crohn's ulcerative colitis ileostomy ibdThat’s how long it has been since I have been living with an ostomy. That’s close to 20% of my life. Now after spending more than half a decade without a colon, where does that leave me? How do I feel about the new life I have? My outlook last year was fairly grim, after I had just spent a week in the hospital due to an intestinal blockage during my pregnancy. But things are different this year.

Even though I have dealt with a few issues since my surgery in 2012—inflammation in my eyes, having the rectal stump removed due to lingering inflammation, intestinal blockages during both of my pregnancies—I have not had any true recurrence of IBD since my surgery and have not taken any IBD medications since that time. Do I love my ostomy? Nope. My goal here is not to shout out, “Having an ostomy is the best thing ever!” Because it’s not. But last week I had an ileoscopy (think colonoscopy without the colon), and afterwards I received the best news that anyone with IBD can get—no signs of disease activity! And that, my friends, is what makes me want to shout from the rooftops.stolen colon inflammatory bowel disease crohn's

It has not always been an easy road with my ostomy and I still have a love-hate relationship as I continue to grapple with feeling self-conscious or concerned about leaks or worried how others will react to it, but ultimately those pale in comparison to the memory of needing to use a walker to get myself to the bathroom many, many times during the day and spending more nights than I want to count in a hospital bed. I still don’t recommend surgery as a first choice in treatment, since I think most people need time and the opportunity to explore other options before committing to this one. I know I did.

stolen colon sedimentation rate graph ostomy inflammatory bowel disease crohnsBut when my lab results look like this (Sedimentation rate is a marker of active disease. That crazy outlier is from one month before my surgery.) and can keep me off meds and out of the hospital (at least for the most part), I’m going to say that it was the right decision for me. That’s how I have been able to embrace this new life, even with all of difficult parts that come with it. And looking back now, 6 years later, I do not regret it for a second.

A QUICK NOTE ABOUT HAVING AN ILEOSCOPY: This is my second scope since my surgery in 2012. I had one in 2014 and now in 2018. I also had an upper endoscopy performed this time. I have had these done as a preventative measure. We know that if symptoms start to arise, the faster we can start treatment the better your odds of getting back to remission. And often, signs will be seen in blood work or through a scope before they manifest into physical symptoms. So I decided to try my best to stay on top of things and not give any inflammation or disease recurrence the chance to sneak up on me. My GI and I have a plan for annual appointments and blood work and doing a scope every 3-5 years. Thankfully an ileoscopy is a simpler process than a colonoscopy since the prep is not required!

 

 

 

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Learn how to change your ostomy bag in under 2 minutes

This video is meant to show in under 2 minutes how to change an ostomy bag and the speed of the video has been changed to allow that. The timer in the corner shows the actual time of the bag change, which was just under 5 minutes. Please note that I have had an ostomy for 6 years and that may not be a realistic time for someone just starting out. There are some great videos out there that go into a lot of detail on how to change the bag and going step-by-step, but some of us may not have the time (or patience!) to sit through a 10-20 minute tutorial. The hope here is simply to provide a quick guide for getting started.

The process of changing a bag will vary depending on the type of bag you use (such as a one-piece or a two-piece that snaps together or a pre-cut flange) and the types of accessories you like. The accessories shown here are the ones that I have found that work well for me, but they are not necessary and there are plenty of other options out there that may fit better with what you need.

I do not recommend specific products since I believe that different products work for different people and situations, but for your reference, these are the products used in the video:

  • Coloplast SenSura Mio 2-piece flex flange and pouch
  • Hollister Adapt skin barrier paste
  • ConvaTec AllKare protective barrier wipes

There’s a new girl in town

Everything anyone ever told me about having two kids is true. The past few weeks since the birth of my daughter have been exhausting. They’ve been amazing, but exhausting, too. I have been wanting to share the news for a while, but had a difficult time finding the time (or energy) to sit down and actually do it. So I am woefully behind on this, but here goes…

chandler birth labor delivery mom baby ostomy blockage obstruction pregnancy ibd crohn's disease ileostomy stolen colon stephanie hughesOn July 11, we welcomed a wonderful new addition to our family: Chandler Marie. She was born at 38 weeks and 5 days gestation, nearly a full three weeks further along than my son. Her birth was the result of my body naturally going into labor, and not due to an induction because of a persistent bowel blockage, as I dealt with last time. (You can read the entire story of my first delivery here.)

The abbreviated version of this story is that I started having mild contractions the evening before around 10:00 p.m. I went to sleep and they woke me up a few hours later and we ventured over to the hospital around 3:00 a.m. to find that I was already 5 cm dilated. After 8 hours of labor, I was no further dilated, but then BAM, in the next hour and a half I went from 5 to 10 cm dilated. I started pushing at 1:01 p.m. and she officially entered the world at 1:07 p.m. (Trust me, it was not the same story with my first.) She weighed 7 lbs. 9 oz. at birth.

There were no complications with my ostomy during the actual labor and delivery process. It was essentially a non-factor during that time. And thankfully, as was the case with my first, my body seemed to get back to normal as soon as she was born. I was able to start eating the same foods I had prior to pregnancy with no blockage issues! It’s taken a few weeks, but my stoma is getting back to normal. It was still fairly large for the first couple of weeks and I was concerned that it might not return to its normal size, but at 9 weeks postpartum it seems to be pretty close to the size it was originally and not prolapsed like it had been during my pregnancy.

chandler birth labor delivery mom baby ostomy blockage obstruction pregnancy ibd crohn's disease ileostomy stolen colon stephanie hughesChandler has been doing great, as well. We were able to come home just 24 hours after her birth. She’s been growing like a champ and getting more personality by the day.

I’ll be sure to share a little more about the final weeks of my pregnancy with an ostomy and attempting to avoid another blockage but know I am so thankful that I was able to avoid any further complications with my ostomy and any more hospitalizations. I wanted so much to be able to deliver as a result of spontaneous labor and I was able to achieve that goal, but it definitely wasn’t easy.

These past few weeks have been a big adjustment as I’m now living with a high-energy 2-year-old and an infant. I hope as we get more settled that I can get back into a good routine of sharing information and keeping in contact with all of you. I apologize to anyone that I have not responded to recently and I hope to be in touch soon. Thank you for all of your support and well wishes!

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Bowel obstruction during pregnancy, earlier than expected

Just a few days shy of being 28 weeks pregnant I got a bowel obstruction. Intestinal blockages are something I dealt with during my first pregnancy which resulting in my son being born at almost 36 weeks. (You can read more about my experience with blockages and my son’s birth story.) This time, the issue came up a full month before it had my previous pregnancy, which really threw me off. I had prepared for the possibility of a blockage and had determined to switch up my diet at 30 weeks, in hopes of preventing one from occurring, but obviously this one did not wait that long.

I woke up in the morning feeling horrible and I called my mom to pick up my son because I knew I would not be able to take care of him. I was hopeful that with some bowel rest, physical rest and hydrating that things might start to clear up. I was actually a little unsure as to whether or not it was a bowel obstruction because of where the pain was. With my first pregnancy, the obstruction was just a few inches from my stoma, so the pain was concentrated in the lower right portion of my stomach. This time, it was across the top of my stomach. I ended up spending the entire day in bed, but things only felt worse as the day went on. I was in pain, throwing up, and could hardly stand up. I actually ended up calling an ambulance to take me to the hospital, which was the first time I’d had to do that since my surgery. I had hoped that by traveling in an ambulance that I would get checked right into the ER, but that was not the case and it ended up being a much bigger deal because they did not want to transfer me to the Women’s Hospital at this point, which is where I went with any issues during my first pregnancy. But I won’t bore you with all of the details of finally getting admitted to the right place for both me and the baby.

ng tube hospital intestinal blockage bowel obstruction ileostomy ostomy crohn's disease ulcerative colitis ibd inflammatory bowel disease Once I did admitted to the Women’s Hospital, the first order of business was getting fluids and a fabulous NG tube. (I’ve written about getting an NG tube previously, so I’ll refer you back there for more on that experience, because this one was pretty much the same.) There were lots of tests those first few days, which included a couple of X-rays and a CT scan. As a pregnant woman, this is a difficult decision to make on how to handle the need for radiation, as it can be harmful to the baby. Thankfully, I was already in the 3rd trimester at this point, which means the baby’s internal organs are formed and the radiation poses much less of a risk. I still did not like having to go through that, but I also know that I have to be healthy in order to provide what my baby needs. The CT scan showed just how blocked up I was. The doctor showed me the pictures and my entire small intestine looked like fat sausages (that’s the best way I can think of to describe it). I have no idea what a healthy intestine looks like on a CT scan, but even I could see that this was not what it was supposed to look like. And that explained why I was having pain across the top of my stomach, because that’s how far the blockage extended.

I do not remember a whole lot from the first days, but I know by my fourth day there they tried inserting a catheter into my stoma, which is what they ended up doing with my previous pregnancy. This helped incredibly and I finally started getting some output from my stoma and some relief from the pain. The next day they were able to remove the NG tube and I started being able to consume some liquids and eventually some very bland hospital food. Thankfully, things continued to improve over the next couple of days, and even though I was still in a lot of pain, I was able to function.

Of course during this whole time they were monitoring my baby closely, but thankfully there were no complications in that capacity. I was dealing with some mild contractions while I was there, which is likely due, at least in part, to dehydration and just to the stress of the situation. It was not anything that turned into an actual issue. Honestly, the baby seemed very unfazed by the whole ordeal.

ng tube hospital intestinal blockage bowel obstruction ileostomy ostomy crohn's disease ulcerative colitis ibd inflammatory bowel disease son family pregnancyI ended up spending 7 days in the hospital with this blockage. It is actually pretty amazing that I was able to avoid surgery considering how blocked up my small intestine was. I am so thankful that it was able to pass due to the NG tube and the catheter without having to go through a surgical procedure, especially at 7 months pregnant. Probably the most difficult part was being without my son for that time. I stay home with during the week, so it’s usually just me and him, and it felt horrible not being able to be there for him during this time. He finally was able to come visit me once I started feeling better. I’m grateful to my amazing family who stepped up and made sure he was taken care of during this time. In the end, I left with a new low fiber diet plan and a catheter sutured to my stomach, but more on that later.

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