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.
Continue reading

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

First trimester of pregnancy with an ostomy

I am a few weeks past the first trimester now, but I wanted to go back to discuss some of what it was like for me those first 12 weeks (or 13 or 14 weeks, depending on who you ask) of pregnancy, some because of the ostomy, some just in general.

What I have experienced so far:

  • I’m sure you all are very aware of my hydration issues and they have only gotten worse since getting pregnant. I have had the hardest time with drinking enough and even when I do, I still feel pretty parched. I know it’s only going to matter more going forward as my skin stretches and I have lots of things my body needs to produce for the little one.
  • Thankfully, I have not had to deal with morning sickness! But I can only imagine that would make the hydration issue even more severe.
  • I have, however, been eating lots (and lots) of food. I’m to the point now where I’m pretty much hungry all of the time… Kind of reminds me of being on prednisone, when the only thing I could think about was food. Because of this, I am also emptying my bag a lot more often than usual.
  • It is difficult to find the right foods to eat. Fruits and veggies, fruits and veggies! That’s all you hear that you need to be eating more of and we all know how difficult that is for ostomates. I was eating a lot of apples for a while, but then I started getting very thick and firm (albeit fairly fragrant smelling) output that I was afraid of causing a bigger blockage.
  • Oh my gosh, I’ve been so tired! For a few weeks there, I could hardly make it through a whole day without needing a nap.  And I took quite a few. (Growing a human is hard work!) Now that I’m into the 2nd trimester I’ve gotten a bit of my energy back, but still not quite 100%.
  • 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 urostomyI’ve already had a few people feel the need to touch my belly (thankfully all family, so far) and make comments like, “I think I can see a little something.” Then I have to reply with, “Nope, that’s just my ostomy bag.” (Face in palm.)
  • I’ve noticed in the last few weeks of the first trimester that my ostomy bag had not been sticking as well as it usually does. I don’t think it was from my belly growing, because there hadn’t been much change in that area at that point. And this may be something that is totally unrelated to pregnancy, but I have to wonder if my skin has changed or something like that.
  • joy at getting to see the little peanut and hear his/her heart thumping away!

Things I am nervous about in the future:

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

Continue reading

Can you still get pregnant with an ostomy?

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

The short answer is yes. Yes, you can get pregnant after having surgery to get an ostomy …and I now can say this from personal experience.

If I haven’t already given it away: Yes, we are expecting! We’ve got a little peanut due July 2015.

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 urostomyIt has been a whirlwind the past few months of pregnancy tests, doctor’s appointment, telling our family and simply getting acclimated to the idea that there is a person growing inside of me… that I am going to be a mom in just a few months! Seriously, it’s mind-blowing.

It makes me very happy to say that it is still possible to get pregnant with an ostomy! However, at the same time, (and this is the long answer) I must stress that my experience is not necessarily typical and is not going to be the same as many others. I had been married for two years when I had my first surgery to removed my colon, so I knew that kids were something that my husband and I wanted in our future. I was scared of what having this surgery might mean for that. So of course, I discussed it at length with my surgeon both prior to and after my surgery. He told me that having the surgery should not affect my ability to carry a child, however, it could make it more difficult to conceive in the first place. I believe it has something to do with scar tissue from the surgery and also, just anytime you go moving things around in your stomach/gut-area it can affect the way your body functions. I was blessed to have had both of my surgeries done laparoscopically, so it was not nearly as invasive of a procedure as it is for many.

Now, I won’t get into the actual “getting pregnant” part, because I’m sure we’re all familiar with the process, but I did want to go over some of what it was like mentally trying to do so. I did my best to adhere to the advice that many of us have heard before: Hope for the best; plan for the worst.
Continue reading