Category Archives: IBD Research

This is IBD

I am spending this World IBD Day in the hospital. This was definitely not my plan for this day. But I suppose it’s kind of appropriate since those living with Crohn’s disease and ulcerative colitis never get a break and they can be fine one day and hooked up to a bunch of IVs at the hospital the next. And that’s pretty much what happened to me.

stephanie hughes hospital surgery colectomy stolen colon ostomy blog recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy blockage obstructionLet me say first of all, though, that I am not in the hospital for a Crohn’s flare. But I am in the hospital as a result of Crohn’s disease and the surgeries I’ve had because of it. I’ve been dealing with some bowel obstruction issues since Sunday and they got even worse last night. When I woke up this morning, I still was having very little output, so out of an abundance of caution, especially considering my pregnancy, I decided to go to the ER. It’s now 11 hours later and I’m still not having a lot of output, or at least not anything substantial.
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The hardest part of chronic illness

No matter what kind of disease or illness you are talking about, chronic disease is hard. And the hardest part is, well… the chronic part. The permanent part. The forever part.

I can’t tell you how many times I have wished just for one day to not have to deal with everything that comes along with it. Just one day completely disease/illness/condition free. Just one day where I could completely erase the words “Crohn’s” and “ostomy” from my mind.

stephanie hughes stoma ostomy ileostomy stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blogFor the first 13 years of living with Crohn’s before my surgery, I rarely got a break. I had a few years during high school where I would feel pretty normal most of the time, but would still deal with a difficult week every month or so. But since I went off to college in 2004, I don’t think I’ve had a day where it hasn’t been present in some form or another, or where I didn’t think about having to quickly find a bathroom or worry about smelling up the one in our dorm or think about the handful of medication I had to take. It was always there. Reminding me that my colon was not my friend.

Even now, I’m so thankful that I have spent the majority of the past several years free of symptoms from Crohn’s, but I will never again be a healthy human being with all of my bodily organs. I will always have to deal with the ramifications that come from not having a colon.

I wish just for one day that I didn’t have to push my poop out of a bag. I wish for one day I didn’t have to try to down 3+ liters of water and even then still feel dehydrated. I wish I didn’t have to think through every item I eat to consider whether or not it may give me an issue. I wish for one day I wouldn’t have to have a piece of adhesive stuck to my stomach, causing irritation and itching my skin. Hell, forget one day, just one hour would be nice! But I know that will never happen.

I’m stuck with it. For now and forever. Til death do us part. There will never be a Stephanie without an ostomy. And there will never be a Stephanie without Crohn’s disease. And I hate to say that, but I don’t see a cure coming in my lifetime. I know that sounds negative and I really I hope I am wrong. I think there are a lot of good things coming to be excited about–things to push us into remission and deal with the symptoms, but those aren’t cures. Those won’t do away with the permanent nature of Crohn’s disease and ulcerative colitis.

I was given the option of trading one chronic condition for another and I took it. I knew the decision I made was for keeps and that once I went through with it I would never be ale to go back. I don’t regret it for a minute, but there are those days… those days that I just wish I could take even a short break from the permanent.

I hate pictures of being sick

I really do hate them. And that’s why I don’t have any. There has been more than one occasion where I have dropped 25+ pounds and have looked more like a skeleton than a human being. I have written on here before how when I was 13, I said to my mom, “At least I won’t need a Halloween mask this year.” My hair has fallen out in clumps and grown back unevenly. I have been on steroids that made my face swell up like a chipmunk. My knees and ankles have grown to the size of grapefruit. I have gotten large, bruise-like welts up and down my legs. But I don’t have pictures of any of these things. I would never allow any to be taken.

stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy sick illness hospital diseaseLooking back now, there are times that I regret that. For one, it’s an important reminder of what I’ve been through. I may never be able to remember exactly what I was like to be at the lowest points in my life, and while it’s not something I would want to dwell on, it is something that is important not to forget. But even more so, I regret not having pictures on days like today… On World IBD Day. Today is a day for raising awareness and tell our stories, but I will never be able to tell the full extent of my story. No one else will ever see the ugliest side of Crohn’s and how deeply it has impacted me. No one may ever be able to understand how sick I was in those most difficult days.

My point is not at all to make anyone feel sorry for me or be a part of the “Who has it the hardest?” game. My point is show that Crohn’s disease and ulcerative colitis are so much more than most people think. It goes so much deeper and hurts so much harder and slowly steals from you so much more than the world around us thinks. And I find that really sad. I find it sad that so many people who have had it even harder than myself, have gone through multiple surgeries and hospitalizations and blood transfusions and poisonous medications, and the rest of world has brushed them aside as dealing with a “stomach-ache.”

In one way or another, Crohn’s disease has affected every single part of my body. It has swelled my joints, deprived my internal organs of blood flow, affected my skin, hair, eyes, mouth and, perhaps more than anything, my mind. It has brought me to depression and anxiety and tension. It has told me I am ugly and weak and disgusting and not good enough. It has tried to take everything from my, and at times, I thought it might succeed.

I consider myself very blessed to be living now without medication and without symptoms, but there are so many others out there who have not made it there. There are others who are dealing with these painful and embarrassing symptoms every single day, as we sit and wait for a cure; as we push for awareness and support to find that cure. These diseases are serious and deserve the respect that a chronic illness necessitates.

This is why I wish that I had not been concerned with how I looked and I had allowed those pictures to be taken… because only in showing the world how low Crohn’s disease and ulcerative colitis can take a person, can we ever hope to bring about understanding. While I hate to see more and more people being diagnosed with inflammatory bowel disease, I long for the day where IBD is known and understood, because with that knowledge and understanding will come the support necessary to find a cure.

Why I take part in Take Steps for Crohn’s & Colitis

Prior to my ostomy surgery 2 years ago, I was not very involved in the IBD world. Sure, I would donate to the CCFA every now and then, or I might attend some informational event about Crohn’s disease, but I usually kept my distance. I don’t know exactly what it was when I found out I was going to have surgery, but I suddenly had this need to be a part of something. I had to find other people who had been going through the same thing. I volunteered about two days before the Take Steps Walk in 2012, which was just a week before my surgery. I was so sick that I was hardly any help, but I liked being out there with that crowd.

Around that time, I started The Stolen Colon and started being an active part of the Crohn’s disease and ulcerative colitis community. At the end of that year, I signed on to be a part of the planning committee for the Take Steps Walk the following year. So just last week I participated in my second walk as a member of that committee. And let me tell you… It’s a lot of work!

Take steps walk triangle ccfa crohn's colitis foundation stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy fundraiser cureThere is so much that goes into an event like this. The walk here in North Carolina brings in about 700 people each year, and we have to make sure to entertain, feed and keep safe all of these people. At the same time, we’re working hard to get sponsors and donors to raise funds to help find a cure for IBD. Because that’s really what it’s all about.

It has been a rewarding experience being a part of the walk. I have met some really amazing and inspiring people and have made some good friends out of it. Plus, it feels really good to know that I am working hard to help in the fight against IBD. I appreciate the platform I have here to speak about Crohn’s disease and to raise awareness, but it’s so important to raise that money, too. So really great research is coming out of the CCFA and I am excited to see where it goes from here.

This year’s walk was on a beautiful Saturday this year. I’m thankful for the nice weather. We had a big crowd out there and it is nice to see so many faces, from so many different backgrounds, working together towards a common goal. I tend to manage the ‘run of show’ for the event, Take Steps walk planning committee Michelle Marsh WRAL emcee speaker ccfa crohn's colitis foundation stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy fundraiser eventmaking sure all of our speakers have what they need and are where they are supposed to be. Basically it means that I am running around like a crazy person all day long. I wish I had been tracking my mileage, because I bet I got in some distance that day just running from point to point. (And you can ask anyone, I was definitely running everywhere.)

There were weeks and months of planning put into the walk and, all in all, it turned out to be a great event. There were a few hiccups along the way, I don’t think anyone expects these sorts of things to go off without any hitch, but thankfully none of them were major or ruined the integrity of the day. In the end, we raised over $100,000 to help find a cure for Crohn’s disease and ulcerative colitis!

I hope to be able to continue to be a part of this group. It has been a great experience, even when the amount of work that needs to go into it keeps piling up, it’s always worth it in the end to see the faces of the people and kids living with IBD and seeing the money being raised and know that you helped make that happen. That’s a good feeling.