Category Archives: Crohn’s Disease

Who do you support on World IBD Day?

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World IBD Day inflammatory bowel disease may 19 crohn colitis ostomy stephanie hughes stolen colon blogI recognize World IBD Day on May 19th because more than 5 million people worldwide are living with an inflammatory bowel disease, myself included. Around 1.4 million of those people live here in the US. Considering these numbers, I am always surprised at the lack of knowledge out there.

If find that most anytime I tell someone that I have Crohn’s disease, they more often than not answer with something like, “Oh, my ______ has that” (fill in the blank with cousin, friend, aunt, etc.), but they often don’t know much more than that. Chances are, you know someone who is affected with one of these diseases. I may be that person for a number of you out there.

IBD is one of the five most prevalent gastrointestinal disease burdens in the United States, with an overall health care cost of more than $1.7 billion. This chronic condition is without a medical cure and commonly requires a lifetime of care. Each year in the United States, IBD accounts for more than 700,000 physician visits, 100,000 hospitalizations, and disability in 119,000 patients. Over the long term, up to 75% of patients with Crohn’s disease and 25% of those with ulcerative colitis will require surgery. (from the CDC)

I am saddened to think of the many people out there who suffer in silence, with no one they can turn to who can understand. That was me for many years. I tried to live as normally as possible, but that’s a lot to shoulder all by your self. I feel very blessed to have such a great family of IBDers out there who I can turn to for advice, sympathy and always some good butt jokes.

Simply today, I want to remind you of those who deal with these diseases daily. Remember your grandmother, your uncle, your friend who have to live with the symptoms such as pain, diarrhea, fatigue, cramping and blood loss. Educate yourself and be a part of the push for a cure. These people need your support. Let them know that you are standing behind them. The Crohn’s and Colitis Foundation is a great resource to learn about the diseases and how you can get involved to help find a cure.

Who do you support on World IBD Day?

 

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.

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.

Take Steps, Be Heard

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It has been nearly 24 hours, but I am still exhausted from this weekend. It was so full of events and fundraisers and running and laughter and crying and meeting up with old friends. I am spent. And while I don’t have the time, or the energy, for that matter, to get into everything that happened this weekend, I did want to tell you all a little about the Take Steps for Crohn’s and Colitis event on Saturday. (And, no, I definitely did not take any pictures… I didn’t even have time to sit down! But thankfully, there are lots of pictures floating around.)

As you may know, I’ve been a part of the planning committee for this walk for about 6 months now. It has been a great experience, but it has also been a lot more work than I had originally anticipated. We have been meeting once a week for more than a month and prior to that it was still every other week. And there was a long list of things that needed to be done on the days in between.

But the event really came together this weekend. My wonderful husband and brother-in-law came out to help set up in the morning. I arrived a little bit later to join in. There was a lot going on, but I CCFA take steps walk crohn's colitis walkers stephanie hughes stolen colon ostomy blogfeel that we all coordinated really well to make sure that things ran smoothly. My parents also came out to help with the walk.

It turned out to be a beautiful day. I kept checking the weather in the days leading up to it and it wasn’t looking too good at one point, but it ended up being warm and sunny and the clouds rolled in just in time to provide some shade for the walk.

CCFA take steps walk crohn's colitis Renee Chou WRAL emcee stephanie hughes stolen colon ostomy blogMy main job for the day was coordinating the “talent.” This meant working with the emcees, speakers and band. I had worked previously to set up things for the emcee. We had the lovely Renee Chou of WRAL join us to kick off the festivities, and radio personality David Wilson to announce the top fundraisers following the walk. Both were wonderful to work with and did a great job. There were a few hiccups along the way, but thankfully, we were able to take care of everything in enough time that I don’t even think anyone else noticed. And let’s be honest, that’s really the goal of any event, no matter how well planned!

I didn’t stop the entire day. Not including everything I did prior in the day, which began at 6 a.m., I was at the walk from 12:30 until about 9:30 that evening. The event itself was wrapped up around 6:30 or so, but then the clean up and tear down begins! It was a lot of work. Events are always easier to put together than they are to tear apart. One-by-one, everyone soon dropped off. It ended up being just me and the local CCFA rep putting the last boxes away and making a final sweep of the area.

Looking back, I know there are things that we could have planned better to make the event go even smoother, but all in all, I think we pulled it off. We had nearly 700 participants who all seemed to have a great time and we raised close to $110,000 that will help fund research to find a cure for Crohn’s disease and ulcerative colitis and promote events for patients of these diseases.

I worked with such a great team on this project. Many of us were new to the event, so there was a bit of a learning curve, but I couldn’t be more pleased with the outcome. I met some wonderful people who I look forward to working with again in the future. But mostly, it feels good to have accomplished something so big that is going to make such an impact.

CCFA take steps walk cure crohn's stephanie hughes stolen colon ostomy blog

Just call me the Party Planner

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It’s been a busy week. It has been filled with events and fundraisers and lots of planning for those events. Last night, we held our “happy hour” event at Top of the Hill. (Many thanks to Top’o for generously allowing us to use their venue and offering us some great incentives.) We had some wonderful friends come join us for food and drinks. It wasn’t quite the event we were hoping for, mostly because, due to time constraints, we weren’t able to publicize it as much as we would have liked. But we still raised several hundred dollars for Team Challenge, so definitely a success in my opinion!

top of the hill eventI’m so mad at myself for not taking any pictures! I only took this one silly one of the table as you walked in and didn’t even think about grabbing any more during the event.

And now, it’s time for more events! I’m going to start tomorrow off at Belk for their Charity Day sale. Hopefully that will help bring in even more for my race. It’s only 5 weeks away and coming quick, and I still have a good ways to go to reach my goal.

Following the Belk sale, I will be heading out the Take Steps Walk on Centennial Campus. I’ve had a really good time working on the event for the past several months. But I’m not going to lie, it has been a lot more work that I hard originally imagined. I definitely had not planned on doing so much all at once. I had planned to join the walk committee and that was it. But then the opportunity with Team Challenge came up and I had already committed to the walk, by that time. I quickly found out that I had taken on too much for my own good, but I wanted to stick with it. It has been a very busy couple of months and all of it has hit an apex this week.

I am excited about the event tomorrow. I think it’s going to be a lot of fun for a good cause. But I am also looking forward to it being done. That means I will actually have some time to relax on focus on my half-marathon and everything else coming up. I would definitely be up for doing a committee like this again, but I need a bit of a break.

But I am ready to go out tomorrow and enjoy the day with a bunch of people who are all fighting for the same thing. And I’ll try to remember to take pictures this time!