Tag Archives: surgery

3 tips to prepare you for ostomy surgery

Regardless of whether you have been talking about surgery for a long time, putting it off for just as long, or it may have just recently come up, but there comes a time where you know it’s inevitable. At least that’s how it was for me. I went through weeks and months of hoping for another option, but ultimately, I knew what I had to do. (You can look back at some of my very early posts to hear a little more about it.) But once I officially knew it was happening and had about 2 weeks until the surgery, I didn’t really know what to do during that time. Having been through it now and looking back, these are the things that helped me prepare before surgery or that I did after surgery and wish I had done sooner.

Find someone to talk to.

So so important! I can’t tell you what a difference it made just talking to someone else who had been through the surgery. I was blessed to be connected with a friend-of-a-friend…of-a-friend… who had an ostomy and had gone through surgery at about the same age that I was. (You can read about my initial meeting with her.) She had lived with it for a while, had kids, and done many other things that I had hoped to be able to do. It was so comforting to hear from her and to see that she did not look any different from any other person.

There are UOAA groups that help to connect individuals who live in the same area and you can also speak with the nurses who are helping you prepare for surgery about trying to find another person to speak with about living with an ostomy. However, not everyone is able to get connected in person with someone else in a similar position face-to-face, but there are many great options for talking to people online. I do, however, advise caution in looking online, because while there are great positive resources out there, there can also be a lot of negative ones, as well. And if you need someone, I always try to be that person to others whenever I can.
ostomy supplies brands coloplast convatec hollister prepare for surgery

Order supplies.

If you know surgery is coming, order some supplies now! All of the major ostomy suppliers have programs where you can sign up to receive free samples of their products. (Links to their request pages: Hollister, Coloplast, ConvaTec) This was great for a number of reasons. First of all, I have said before that everyone is different and the supplies that work for me may not work for you, and vice versa. I think it’s best to try out the many different options and figure out what fits best into your life and what feels the most comfortable. Plus, each of the samples came with a kit and a lot of good information. The companies followed up with me to answer questions and send additional supplies, when needed. When I came home from the hospital, I had a very large, transparent bag on and I felt so uncomfortable. Once I switched it out for an opaque bag I felt much more confident. It was a little change, but it made a big difference and I was so glad that I had the option once I got home. Finally, getting the supplies will last you for several weeks after surgery, so it’s nice to not have to place a large order right away.

Break the tension.

I was terrified before my surgery. I was hopeful, because I had to be since I had run out of other options, but I was still terrified. I booked my surgery for as quickly as possible because I was afraid I wouldn’t go through with it if I thought about it for longer. (I even asked my surgeon how much of a heads up would be appropriate if I changed my mind! I assured him I wouldn’t, but it made me feel better to know that I could.) But the night before my surgery, I was laying in bed with my husband and looking for ideas for what to wear under my clothes with the ostomy. Thankfully today there are some really great and sexy underwear options out there, but a few years back, that was not really the case. I found some really hideous options and I showed them to my husband and we started laughing hysterically. It was one of those moments where if you don’t laugh, you’ll cry, and I really needed to not cry. I realized that I had to break the tension and not focus on everything I was afraid of happening. I encourage you to try to find something like that to help you get through those difficult times.

Going through surgery is not easy, no matter what situation you are in or what your health is like prior. But hopefully, these tips can help you to prepare the best that you can. I know there are things that others have done that can help, too. What is something that helped you prepare for surgery? Or that you wish you had done beforehand?

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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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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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A new meaning for World IBD Day

May 19 may be World IBD day, but that is no longer the significance that this day holds for me. It was this day in 2015 that I was first admitted to the hospital with an intestinal blockage during the third trimester of my pregnancy. It was the beginning of the end of my pregnancy.

world ibd day inflammatory bowel disease crohn's ulcerative colitis ileostomy stephanie hughes anniversary pregnancyTwo days before, I had sent out a tweet about feeling a little blocked up. Honestly, at the time I didn’t think it was that big of a deal. It felt like the number of other times I had a mild blockage that would clear on its own if I drank a lot of water and stayed away from fibrous foods. Even when I went to the ER that day, I really only went because I was pregnant. If I hadn’t been worried about my son, I seriously doubt I would have gone to the hospital. It was more about being extra cautious than actually thinking there was a problem. After about a day in the hospital, I already was feeling better. I remember my surgeon coming in to talk to me and telling him I felt great and didn’t see a reason I needed to stay any longer.

this is ibd postLittle did I know how much worse it would get over the coming days and weeks. Two days after being released from the hospital, I was in tears over the amount of pain I was in and would end up taking myself back to the hospital in the morning. And three weeks after that, my son would be here.

For me now, this day is a reminder of how much IBD can impact your life and the lives of the people around you. My pregnancy and my son’s birth did not go as I had planned. Thankfully, everything turned out well in the end, with a healthy baby and a healthy mom, but it could have gone another direction. I know if we decide to have more kids, I will go about things differently in the hopes of preventing another blockage.* But the truth is… with a disease like IBD, you never know what’s going to happen. And that’s why awareness is so important. So people have the information they need in order to make the best decisions. So others understand, even just a little bit, what it’s like to live with an unpredictable disease. And so one day a cure can save others from spending World IBD Day in the emergency room.

*This post was written before the birth of the second child and, as anticipated here, my experience was challenging and unpredictable. Although thankfully we ultimately had another healthy baby!