Category Archives: Ostomy

Out of the Bag: Hot Yoga

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Ostomy ostomies out of the bag Stolen Colon crohn's blogIt has been such a long time since I have done an “Out of the Bag” post, so I figure it’s about time to crank one out.

Hot yoga is new to me. I took up the advice of my Team Challenge coach to try out some classes in order to help my sore muscles that have been preventing me from running. I tried out my first class on Monday and took my second class this evening. I can’t even express how intense they were. I thought I had an idea of what it would be like, but no, it was much more extreme than that.

yoga stretching hot poses downward facing dog rylie stephanie hughes stolen colon ostomy crohns blog

Rylie likes to do yoga with me, too.

But let me just start with yoga in general. I think it is a great option for ostomates and those with IBD. I actually don’t know why I haven’t done more yoga in the past. It has a lot of benefits like breathing techniques which can help with stress (which has always been a flare trigger for me); it’s a great stretch and workout while being low impact; and especially for those with ostomies, it has a lot of focus on core strength, but in ways that are easier on the stomach than crunches. Plus, you work on balance and flexibility which just leads to healthier living. I don’t think there is anything in yoga that would be an issue for someone with an ostomy. The only things I can think of would be some of the stretches where you arch your back, because this could potentially pull your bag off, but as long as you’re careful about that, I find it’s a great option.

Now hot yoga is a little different. The class I took Monday was your basic easy, stretching class. Today’s was a more advanced flow, vinyasa class (for the non-yoga people out there, this basically means you’re moving through a series of movements consistently, a bit more like choreography). I can honestly say that I’ve never sweat so much in my entire life. Both times I have left completely drenched.

But this is what makes doing hot yoga with an ostomy a bit more complicated. I found out the first time that I had sweat so much that my bag was loosened around the edges and I actually got a leak in the middle of the night last night. It may have just been coincidence, but I doubt it. I tried something different tonight. I have an ostomy belt from Pouchwear. I thought that it might help with absorbing some of the sweat and keeping the bag dry and it worked really well! This time, the edges of my bag stayed dry and weren’t pulling up. Yes, it’s a little uncomfortable to have an extra layer on, but in my opinion, totally worth it.

I do have to make sure I stay well hydrated while I’m doing this. I’ve downed about a liter of water both times during the hour class. Some of the poses are a little advanced for me, but I suppose I’ll pick them up eventually. Really, the only major issue I had tonight was the some of the poses required most of your pressure on your wrists and I found that my broken wrist is not 100% better. It’s pretty close and doesn’t bother me on a day-to-day basis, but it did hurt some tonight.

Even just two classes in, I can already see that it’s been helping. I’ve been able to stretch out my hips muscles that have been bothering me much better than when I’ve been stretching on my own. I have an unlimited pass for the next two weeks, so I’m hoping to keep it up as I get closer to the race – which is now just 10 days away!

But I’m also new to this, so I’d love to hear from you. Have any of you had any good or bad experience with yoga and/or hot yoga and an ostomy?

The plus side of not having a colon

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I am still 25 days away from my surgery, but I am already set to go for it. I mentioned the other day that I went to see my surgeon to have had my pre-op appointment. I had the appointment on Tuesday since it was the last weekday I will have off from work before the surgery. It was interesting being back at UNC Hospital on the one-year anniversary of my original surgery. I was already being sentimental that day and it just brought back even more memories.

The point of this appointment is just to go over the paperwork necessary for the surgery,unc hospital health care chapel hill surgery memorial stephanie hughes stolen colon crohn's ostomy blog to make sure that the patient has a full understanding of the procedure and to go over what the patient needs to do in the days leading up to the surgery and on the day you actually go in for it. I pretty much knew everything already, since I spoke to my surgeon about in back in March when I went in for the pain issues I was having around my stoma. I was already thinking about it at that point, but it was once my eye issue sprung up that I made to decision to go ahead and book the surgery.

I’ve been well aware of what this surgery consists of for a while. I knew right after my first surgery that it was something I was going to have to have done at some point; I also have a friend who went through the same surgery just about 6 months ago, so thankfully I had someone to talk to about what to expect. It was also nice to go through all of those details with the surgeon, as well.

The recovery is about the same as my last: approximately 5-7 days in the hospital, but probably only 4 weeks total to be back to normal. I did find out one new thing about the recovery this week. The reason they keep you for that long in the hospital is to make sure that my ostomy will start outputting again, even though they won’t actually be doing anything with that part of my body. I asked why and they told me it’s just from the trauma of surgery and also from the anesthesia that it’ll shut down for a bit, which sadly means that I’ll probably be stuck drinking chicken broth again (and honestly, “broth” is much too good of a word for it.)

I’m having this surgery 2 days after my half-marathon and just one day after making the trip home from the race. I’m so thankful to not have any real prep that I have to do for this surgery. The plus side of not having a colon is no more bowel cleansing! I should actually get a call that Friday, once I’m already in Virginia, to find out what time on Monday my surgery will be. I’m hoping for early so I can have it done with and start moving on.

My ostomy and me: 1 year

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This is an important day for me. It is a day that I will always remember as one that changed my life. On this very day, just one year ago, I was waking up in a hospital bed after a 4 hour surgery with a new addition (…and subtraction) on my body.

In honor of such a big day in my life, I took the opportunity to take today off from work, so I’ve enjoyed a fairly laid back day. I did start today back at UNC Hospital for my last appointment before my surgery last month just to go over all of the details and sign all of the paperwork (but more on that later.) I then treated myself to a little shopping and then a little errand running. Now I’m back home watching TV and I even got in a quick nap!

It’s been nice to have the day to myself and to have some time to think. I’ve been going through some of my posts from last year, just before and after my surgery, and it’s amazing to see the change in me. I was so scared at that time. I didn’t know what to expect, I wasn’t sure how to move forward with my life. But I see now how it has all come together.

stephanie hughes ileostomy ostomy anniversary one year crohn's disease blog stolen colonI wouldn’t give up this year for anything. I have learned so much about myself and finally remember what it’s like to really feel good. I am definitely not saying that it’s been easy, but I can confidently say that this was the right decision and I would make it over and over again. Being a part of this online ostomy/Crohn’s community has been a blessing, as well, and I look forward to continuing to build relationships with many others out there.

Just one year ago, the idea of having this second surgery would have been a difficult idea to accept. Now that I’ve had a year to realize this was the best decision for me and it doesn’t make any difference if it’s permanent, it doesn’t seem so scary.

Preparing for surgery #2

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I feel very blessed that I have had such a positive experience with having my colon removed and living with an ostomy. Especially compared to many of the others out there that I know with an ostomy, I really haven’t had any major issues arise. However, there have been a few things that have caused me to worry a little.

Let me start by explaining a little about my previous surgery. When I had my colon removed last May, the doctor left about six inches of my colon inside me. This part is tied off and is usually left to allow for the possibility of reconnection. Basically in some cases (usually if the patient has ulcerative colitis and not Crohn’s disease), the surgeon can reconnect the small intestine to what’s left of the colon and your digestion should function in a more normal way, eliminating the need for an ostomy. I talked about this with my surgeon at our follow-up appointment a few weeks after my surgery and wrote about it in one of my blog posts, Doing A-OK.

In my case, those few inches of my colon are still pretty diseased. I can tell: I still have that feeling of needing to go to the bathroom and I fairly often still have blood in that area. Plus, leaving that portion of your colon in for many years can increase the risk of cancer in the future. I have come to terms with the idea of having it removed and making my ileostomy officially permanent, but had planned to wait until after having kids to have another surgery.

But like I said, a few issues have come up recently. There’s the joint/muscle pain that I’ve been dealing with, that could be due, at least in part, to there still being inflammation in my body. Plus, I’ve had some irritation problems in that area since pretty much just after my surgery. The final straw for me was the inflammation in my eye. Having that come up made me worry about having active inflammation in my body and what else it could possibly cause.

The week that issue came up, I called my surgeon’s office and said, “It’s time to book the surgery and the sooner the better.” I also said that I had committed to this half-marathon and I wanted to wait until after that. So we booked for as soon after that as possible: 2 days after, in fact. Just one month from today, on June 3rd, I will go back in for my second surgery to have the rest of my colon completely removed.

The recovery should be fairly similar to my previous surgery. I should be in the hospital for 5-7 days and have another 2-3 weeks of recovery time after that. Having any surgery makes me a little nervous, but I’m just ready to have it done with. Honestly, I’m not even sure that this is the root issue, but if it is, then I just want it gone, but if it’s not, then at least I will know and can move forward from there.

365 days and 156 posts later

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stolen colon one year anniversary word cloud stephanie hughes crohns ostomy blogWow. Today marks exactly one year from the day I started The Stolen Colon. I started off with my first post The blog I didn’t want to write as an introduction and followed that with an update on my appointment with my doctor to schedule my surgery in The countdown begins.

What a difference a year makes. I was so scared at that time. I was just two weeks away from major, life-changing surgery and I had no idea what that would mean.

It has been quite a journey these past 12 months. I am proud of what The Stolen Colon has become, both for myself and for those who have become a part of my life because of it. But I’m looking forward even more to what the future holds. This is only the beginning. It has been an amazing experience being a part of this online community. I love the people I have met and the opportunities I have been given, and I’m looking forward to even more in the future.

Thank you all for your support over this past year. You all have meant so much to me and I wouldn’t be here without you… on this blog or in my day-to-day life, either. I look forward to continuing this conversation on Crohn’s disease and ostomies and being a part of the movement to remove the stigmas associated with these conditions and one day finding a cure.