Tag Archives: medicine

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 two 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 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.

Inflammatory Bowel Disease: by the numbers

IBD Awareness Week

ibd inflammatory bowel disease awareness week crohn's disease ulcerative colitis ostomy stephanie hughes stolen colon blog

1,400,000: Americans living with IBD

70,000: New cases of IBD diagnosed in the U.S. each year

50,000: Children in the U.S. diagnosed with IBD

1932: Year Dr. Burrill B. Crohn first described the disease that would become known as Crohn’s disease

5: Types of Crohn’s disease (Ileocolitis, Ileitis, Gastroduodenal Crohn’s disease, Jejunoileitis, Crohn’s colitis – Here’s some more info on this)

70%: People with Crohn’s disease who will eventually require surgery

20%: People with ulcerative colitis who will also have a close relative with the disease

750,000: Annual physician visits by IBD patients

100,000: Hospitalizations every year of IBD patients

119,000: Patients on disability a year due to IBD

30%: Patients who have surgery for Crohn’s disease and will experience recurrence of their symptoms within three years (increases to 60% within 10 years)

90%: Ulcerative colitis patients who will have at least one relapse of active symptoms within 25 years of diagnosis

50%: Crohn’s disease patients who will experience complications within digestive tract (i.e. stricture) within 20 years of diagnosis

3,100,000: Approximate work-loss days per year in the U.S. due to IBD

$2,200,000,000: Annual direct / indirect cost of IBD in the U.S.

$8,265: Mean annual direct costs for Crohn’s disease per patient

$5,066: Mean annual direct costs for ulcerative colitis per patient

0: Cures for Crohn’s disease and ulcerative colitis*

*I realize that some specialists will say that removing the colon is a cure for ulcerative colitis, but I don’t think any disease that often still manifests in other ways after an organ has been removed should be considered cured. Just my opinion.