My Crohn's Disease Story

This is me.

Well this is the part of me that I share on this website. I once said that if there is a heaven and heaven is healthy, and hell was the hospital, I feel like I am stuck in purgatory right now. Purgatory, in terms of my health, has been much of my life. Stuck in the middle. Which way will I go, up or down? 

I Was Born in A Hospital, As Most of Us Are, and Came Back Only 10 Months Later

I sometimes miss innocence. I miss when ‘disease’ was a scary word. I miss when acronyms like PICC, TPN, NPO, CT, MRE, and IBD had no meaning. People can read about (or hear about, watch a story on, etc) life with severe illness, but you really have no idea unless you’ve lived it.

From that first hospitalization at 10 months old I had at least one hospital stay each year throughout my childhood. In addition to having Crohn’s disease I have a rare disease known as, Chronic Intestinal Pseudo Obstruction (CIPO). We have no way of knowing which illness I developed first because a lot of the symptoms I experienced could be attributed to either one and it took a long time to get either diagnosis. As a child my symptoms were primarily vomiting, nausea, distention, pain, dehydration, and alternating constipation and diarrhea. 

I didn’t really understand that it wasn’t normal to be in the hospital every year because it was just part of my life ever since I could remember. For some reason I have very few memories of those hospitalizations. I’m not sure why; maybe it’s a defense mechanism caused by trauma. The few memories I do have are not good ones, that’s for sure. As a child who is sick but has no power to make decisions about her health and what happens to her… well, that sucked. On top of that it felt violating to have adult strangers putting me through tests and procedures that were so uncomfortable and embarrasing to me. 

Laying on my mom's lap while she sits in a chair with her arms around me in the hospital. My hospital bed behind us. I was about age 4
One of many childhood hospitalizations. Edited to remove water damage. Hover to see original
From my baby book describing what led to my first hospitalization at 10 months old.
"You were so weak that when you crawled your arms would give out and you'd fall on your face. You wouldn't smile or play. You just stared."
More from my baby book

I've Been Sick Most of My Life. As You Can Imagine My Story is A Long One

Since I’ve lived with Crohn’s disease the majority of my life as you can probably imagine my story with it is quite a long one. For the sake of not boring you all to tears I will try to shorten this up as much as I can and get straight to the nitty gritty of it.

My Story

Here is a list of some things that have happened during my time with Crohn’s disease in case you don’t want to read this entire page:

Some Things that Have Happened During My Time with Crohn's Disease

  • I was originally diagnosed with ulcerative colitis (UC) during childhood but found out a few years after having my large intestine removed that I actually have had Crohn’s disease all along. It’s more common to get misdiagnosed with UC as a pediatric patient because IBD often presents itself like ulcerative colitis in children.
  • I’ve had my entire colon and rectum removed. A member of the Young and the Rectumless!
  • Staring at a toilet bowl full of blood and not much else over and over again is frightening, to say the least.
  • I’ve lost so much blood due to severe inflammation and ulceration that I have had to receive multiple blood transfusions.
  • I’ve survived sepsis 3 times. One of those times I had a 106 degree fever and don't remember anything from my time in the ICU.
  • I lived with a temporary ileostomy but now have a J-pouch.
  • I know the consequences of long-term steroid use.
  • My longest hospitalization was 6 months long.
  • All of my surgeries have been emergency surgeries.

It was chronic blood in my stool and severe pain that led to my diagnosis. Growing up with chronic illness wasn’t easy. I had a disease. A disease!  I couldn’t even say that word. It made me feel like I was damaged and gross inside and undeserving of love. The teen years are hard enough as it is and then having Crohn’s disease on top of it was a huge challenge for me. My mental health suffered a lot from it and I also struggled with delayed onset of puberty and getting my weight up to a normal weight. I didn’t even hit 100 pounds until 10th grade. Speaking of High School – I got extremely lucky because my health gave me the biggest break of my life and I felt better than I ever had. There were still challenges but for the most part I was active and rarely even thought of being sick. Woohoo! I continued my training in dance, became a dance teacher to national champion competitive students, worked at a grocery store, worked out, and had a very robust social life.

Kicked Out of the House in my Teens

Um, so… my childhood was crazy and I can’t really get into much detail about it but for the purposes of explaining this next chapter of my life I’ll let you know that I was kicked out of my home in my late teens. I didn’t do anything wrong; I was thrown out because apparently the bathroom was too messy and it set off ciaos. Sadly this was a milder day in my life at the time. I was at my boyfriend’s house and got a call at 11PM saying to come home immediately and pack all of my belongings because the locks would be changed in the morning. I drove home and packed my room up with my friend Steve (pictured with me on the right), his wife, and my boyfriend. I had been working at our local grocery store since the month before I turned 15. The store was in a union and so I was a union employee. This meant that after 6 months of employment I had a contract and part of that meant I had health insurance. I took care of my own health from that point on because I had to. I had also been working as a dance teacher. Anyway my point is that once I got kicked out I had to sign a bid for full time employment at the store and I ended up getting it in the bakery 

Me and my friend Steve on a boat in our bathing suits

department as the lead cake decorator. I got my own apartment and was working 2 jobs on top of going to school and working out often. I have always been a bit of a type A perfectionist and really struggled with that back then. I was completely independent at such a young age but my streak of luck came to an end and my health began to deteriorate yet again.

From my dancing days

My Luck Runs Out

The Flare up that Ended My Colon

thermometer displaying a fever
blood transfusion bag

No Health Insurance, No Support, No Idea What to Do

Skipping ahead a few years: I was now in college at Eastern Michigan University, living on campus, and I was no longer working at the grocery store so I didn’t have health insurance anymore. Without health insurance things went downhill fast. This was an extremely low point in life. My mental health nose dived once I had been kicked out of my house and I really had no support or resources in life to help me out. Everything that had been a constant in my life had changed so I felt lost. I wasn’t dancing anymore, I didn’t work at the place I had worked for several years, I got out of a long relationship, and I moved to a new place. My health kept getting worse but I didn’t know what to do.

At the time I didn’t have a doctor anymore and I did not seek any care which is an awful thing to do when you have a chronic illness but when you have no health insurance and you’re young what do you do? I was young, I wasn’t out of college so I didn’t have a degree that could lead me to a good career with health insurance. I did not have family support so I wasn’t on my parents health insurance like most young people. 

 I was too sick to work much but able to work some so I was caught in that place where you make too much money to receive help but don’t make even close to enough money to afford health insurance. 

On a stretcher in the recovery area of the hospital. I have an NG tube in and a PICC line
Blurry pic taken on 2008 cell phone

Pain, Blood Loss, Medications, and More

So here’s what happened: I was losing so much blood that I required multiple blood transfusions by the time I was hospitalized after avoiding the hospital for over a year because of my lack of insurance. The blood loss caused my body incredible fatigue because when your levels get that low you experience all the symptoms of severe anemia. I did my best to remain in school but even walking to my classes felt like running a marathon because of it. 

I was using the bathroom 15-30+ times per day. It wasn’t just going to the bathroom; it was going to the bathroom and losing a lot of blood while experiencing excruciating pain. Day after day I would stare at a toilet bowl full of blood every time I used the bathroom. I feared for my life wondering if today was going to be the day that my intestine would perforate, a reality that can happen because of Crohn’s disease. It felt like my insides were just shredding up inside of me because the pain was so intense that I was worried that I was about to die. It isn’t normal to be losing blood like that every day, so much that you require transfusions, and it’s not normal to experience that kind of pain. That pain is a pain so severe it’s difficult to describe. 

It was like a shark shredding up my insides or a large bird’s talons scratching down my intestinal lumen. I would use the bathroom and come back to my bed with a high heart rate and just convulse because the pain was so bad and my fevers had me feeling so cold. It was really scary. 

I had temperatures of 101-103F nearly every night; another sign my body was fighting a major battle. I’d wake up drenched as if someone had thrown a bucket of water over me and my bed 

because of the night sweats I’d get from the fevers. 

I was on high doses of steroids for over a year at that point which has very negative consequences. It certainly wasn’t the first time I had been put on a prolonged course of prednisone but the more it happens the greater the risk for problems.

So there I was in college trying to remain in school and keep my job but I couldn’t do either one. I became bedridden, only getting up for my many trips to and from the bathroom. I was down to 90 pounds at 5’5″ because of weight loss caused by malabsorption and diarrhea. One day I woke up and I couldn’t stand. One of the things that can come from having IBD is arthritis and for the last couple months before my surgeries it was affecting me a lot.

Addressing Misconceptions About Crohn's Disease

There is a common misconception about Crohn’s disease that it’s a “bathroom disease.” People assume it is similar to what having the flu is like or that it’s the same thing as IBS. Also, many people are under the assumption that it is caused by food and can be controlled and cured by diet as well. The truth is that Crohn’s disease is brutal and ugly. It can progress, cause cancer, and lead to complications, surgery, and disability if it is severe and not controlled. Inflammatory Bowel Disease (the two main types being Crohn’s disease and ulcerative colitis) is not the same thing as IBS – Irritable Bowel Syndrome

If you’re up for reading about what IBD can actually do to the body feel free to read through the accordion below. Most of these things are things I have been through. It can be greusome, embarrassing, and debilitating. Every patient is different though and does not experience the same things. There are those who get mild disease and those who get very severe disease and everywhere in-between. How the disease affects a person will also depend on the location of disease, severity, and length of time they have had it among several other things. 

I see this variations of this diagram used at every IBD conference I’ve attended. This slide comes from Dr. Anita Afzali who used it in her presentation, Assessing Disease Severity and Prognosis at the 2020 Crohn’s and Colitis Congress.

Left unmanaged IBD (Crohn’s disease and ulcerative colitis) progresses over time in most patients increasing potential for irreversible damage to the digestive tract, surgery, hospitalization, and disability.

In Crohn’s and UC chronic inflammation causes scar tissue/fibrosis in the intestine. A stricture is a narrow area in the intestine caused by fibrosis. Depending on how narrow the intestine has become where the stricture is located it can cause pain, nausea, vomiting, and make eating very difficult. It’s kind of like when pipes get clogged and then your sink does not drain well because stuff can’t run through it as well as it should. In a person with IBD the “clogged pipe” is the narrow area of the intestine. 

More than half of people with Crohn’s disease and around 5-10% of people with UC will experience fibrostenosis. This is one more reason treatment is necessary because the only areas of the digestive tract that get fibrosis are areas that had inflammation. Sometimes surgery is required to fix a stricture by either removing the section of the intestine where it is located or by doing a surgery called a stricturplasty. Dilation is also an option for some patients.

A fistula is a tunnel from one part of the body to another. This can occur in IBD because the sores in the intestine can penetrate so deep that they go all the way through the intestinal wall creating a small hole. This opening may result in a tunnel from the intestine to another area of the body like another part of intestine, the vagina, bladder, or skin. Fistulae are often difficult to heal. Sometimes patients need surgery to heal a fistula or they might have drains placed to help them heal. Having a drain coming out of your bottom can be very embarrassing for a patient and often affects body-image, self-esteem, and may cause depression and anxiety.

 

Slide from Dr. Edward Loftus used in his presentation, Diagnosing IBD at the 2020 Crohn’s and Colitis Congress.

Above is an example of 3 ways Crohn’s affects the bowel The fibrostenotic image is what I just described above in the Stricture section. Below that you see a fistula. In this case the tunnel leads from one part of the intestine to another but they can also start in the bowel and lead to the bladder, abdomen, perianal area, and more. 

Chronic inflammation and ulceration from IBD can weaken the bowel wall so much that it perforates. Another cause of perforation results when there is a narrow portion of the intestine causing pressure to build up behind it. The bowel can also rupture from toxic megacolon which occurs from extreme swelling and inflammation coupled with systemic toxicity.

When the bowel perforates it can spill the contents of the intestine into the body which is life threatening and requires immediate surgery.

Crohn’s disease and ulcerative colitis are known as systemic diseases which means they don’t just affect the digestive tract but they can affect nearly every organ system in the body.

Some  extraintestinal manifestations of IBD include: 

  • Peripheral arthritis types 1 and 2
  • Axial arthritis
  • Arthralgia
  • Uveitis
  • Episcleritis
  • Pyoderma Gangrenosum
  • Erythema Nodosum
  • Ankylosing Spondylitis
  • Primary Sclerosing Cholangitis

Surgery may be required to remove sections of the small bowel or part or total of the large bowel. Because of these surgeries a patient may end up with an ostomy or an ileal pouch (J pouch).

People with ulcerative colitis or Crohn’s disease that affects the colon have an increased risk of colorectal cancer compared to the general poplulation. 

Inflammatory bowel disease (IBD) can cause blood loss during bowel movements. Personally speaking this is the symptom that led to my diagnosis when I was young. At my worst I was looking at a toilet full of red water because of blood loss about 20+/day. My blood loss resulted in needing multiple blood transfusions. 

As you’re probably starting to see, IBD is very different from IBS which causes no damage to the bowel and only effects how it functions. It is also not even close to the flu, food poisoning, “tummy troubles,” and all the other misconceptions it receives. 

Yes, IBD is surrounded by the misconception that it’s nothing but a tummy ache and frequent use of the bathroom. Certainly those can be symptoms of Crohn’s and UC but it is the cause that differs so much from IBS or tummy troubles. IBD causes bleeding, ulceration, and inflammation that damages the tissue in the digestive tract and that is what leads to a poorly functioning bowel/diarrhea and urgency.

If you’re reading this and you do not have IBD it might be hard to understand this kind of urgency. This urgency is so bad you have a mere few seconds to get to the bathroom or you have an accident. What happens when you’re in a car? In a class at school? At your job? Shopping in a grocery store? The more this happens the more scared of being away from home you become.

Inflammation in the small intestine can decrease the ability to absorb nutrients and lead to weight loss and malnutrition. Surgery and chronic diarrhea are other risk factors. Poor nutritional status can cause iron deficiency anemia and bone loss among other things. 

Pediatric IBD patients may end up with delayed growth and onset of puberty due to malnutrition. Nutrition is extremely important for proper growth and onset of puberty.

 A cavity filled with pus and infection is called an abscess. Abscesses can occur in the intestinal wall or they could be visible abscesses, such as abscesses located around the anus. Abscesses look similar to boils and can be extremely painful. So much so that it is difficult to sit, walk, or sleep. Treatment often involves lancing the abscess to drain the infection. 

Here is a great article on IBD and hair loss. 

6 Months in the Hospital

There came a day where after taking several minutes just to stand up, with tears in my eyes, I tried walking down the stairs. I cried with each step, slowly forcing each foot down to the next stair facing the wall and holding onto the railing. The inflammation in my joints is an extraintestinal manifestion of my Crohn’s disease and my health had become so poor that not only was my digestive system in very bad condition but so were some of my joints. This was when I finally surrendered and agreed to go to the ER.

I expected that the visit to the ER would be short and that I would be back at home in a few hours. I was just so delusional about my situation and how sick I really was. I certainly had no idea that I wouldn’t be coming home until six months later after going through 2 emergency surgeries and several complications; some life threatening. After the lab results of my blood work came back everything changed. People were moving much faster and soon I was admitted and had undergone a lot more tests. I was put on an even higher dose of steroids and this time I was receiving them through an IV but my other medications remained the same.  I was also given a PCA pump for pain and was put on TPN (intravenous nutrition) to try and get my insides to heal and to help me gain weight and restore my nutrition. I had arrived at the hospital with a high fever, a high white blood cell count, and very low blood levels. All of my other lab results were very messed up, too.

Too Inflamed for A Colonoscopy

I had 3 blood transfusions right away to try and get my levels back to normal. I still to this day have no idea how I made it through that last semester of college and last month at home in the condition I was in. 

On day 2 at the hospital they tried to perform a colonoscopy on me to get a good look at my colon but they had to stop almost immediately after they started because the inflammation was so severe that they were afraid if they proceeded I would have ended up with a perforated bowel. This is when they told me a surgeon would be coming to talk to me. I met my surgeon and he went over my options for surgery. Since my diagnosis at that time was ulcerative colitis I chose to have J-Pouch surgeries because that was an option for me. I had a couple more blood transfusions before surgery because my numbers were still very low and it was risky going into surgery that way.

Laying in my hospital bed in a hospital gown and with an NG tube in after surgery
Cystic acne from over a year of steroids

Surgery #1: The Removal of my Colon and Rectum

On July 18th I had the first operation in the series of Ileal pouch anal anastomosis (IPAA) surgeries. I was told that I would feel so much better after removing my diseased organ but things only got worse and I had complication after complication. This was probably caused by how bad of shape I was in going into the surgeries. For best outcomes a patient should not be on steroids, they should be in good nutritional status, and their labs should be as close to normal as possible. The surgery should also be planned vs emergency. I couldn’t check any of those boxes. 

A poloroid camera spitting out a picture of a street at dusk with a space ship hovering in the sky and sucking a colon into it.
poloroid frame with alien heads on it. The picture in the frame is an abdomen with a surgery scar and surgery staples
An alien in a UFO wearing a colon around it's neck
A house at night with a space ship hovering over it driven by two aliens. The UFO is sucking a colon into it.

Surgery #2

Waking up with an ostomy bag didn’t feel real. A part of my small intestine was sticking out of my stomach through a surgically created hole and I had to wear a bag around it to catch my waste. I couldn’t believe that this had become my life. I had issues with my ostomy from the beginning but things came to a head when I started having billous vomit. I was throwing up large amounts of bile practically non-stop and I was in terrible pain. This led to my second operation becoming an emergency surgery because I had adhesions that were strangling my intestine creating a blockage. 

What is an Ostomy? Click image to see

Complications: Blood Infection, 106 degree fever, Intra-abdominal abscess, dysmotility, and more

One day I started convulsing in my hospital room and before I knew it people were rushing in and things moved really fast. I had a temperature of 106 degrees but felt like I was freezing. They were putting ice blankets on top of me and I couldn’t understand why because my teeth were chattering, I felt so cold. That is the only recollection I have of this experience. I spent several days in the ICU but have no memory of what happened there. What had happened was that I got a blood infection from my central line which resulted in sepsis. 

Then there was my J-pouch… which wasn’t working. This in itself is a long story but it was caused by my motility disease. I had to have a catheter inserted to drain it which was incredibly embarrassing and I couldn’t sit or lay on my back because of it’s location. When I would fall asleep I did have leakage from the pouch but I was so embarrassed about it that I didn’t tell the nurses or my doctors. 

Going Home: 82 Pounds and Atrophied Muscles

This hospital stay began in July and I finally came home for good a couple days before Christmas. After 6 months in the hospital I was 82 pounds at 5′5″ and it took a long time to recover. I had to wear size double zero jeans with a pair of pajama pants underneath them just to hold them up and also to keep me warm because I was always freezing. My hair was falling out in clumps while in the hospital and one of my teeth started decaying and broke apart. My skin was pale and dry and overall I looked awful. I slept about 16 hours most days and because I hadn’t used most of my muscles much from laying in a hospital bed for so long I couldn’t even walk up the stairs to make it to my room because my muscles had atrophied.

I was sent home with high calorie shakes to bring my weight up but I could hardly eat or drink anything without vomiting. For a long time I would throw up almost everything I consumed which is another thing caused by my rare disease, CIPO but I couldn’t remain on TPN because I didn’t have health insurance so it was stopped my last day at the hospital. My digestive system constantly looks and behaves as though it has a bowel obstruction.

So much of my life had changed in that year and I had just been through too many traumatic things that I didn’t know what to do with myself. I couldn’t go back to school yet because I was still recovering but I hated being home doing nothing. I started experiencing symptoms of PTSD and about 2 weeks after getting out of the hospital I was in a car accident that cut open my head but when EMS showed up I refused to be brought into the emergency department because I was afraid of having to stay. 

Eventually things began to turn around. I gained some strength back in my legs just by doing everyday things like grocery shopping or walking around the house. The vomiting and nausea decreased and I was able to gain weight again. About 3 months later I began looking for part time jobs because I wanted to be doing something if I wasn’t going back to school right away and that was when I found my job at the salon.  I met my best friends there and a few years later after doing an apprenticeship I became a licensed cosmetologist. 

A couple weeks after coming home. I had already gained some weight but still had a long way to go

Diagnosis Change from UC to Crohn's

My health never really was that great after my surgeries. I did manage a year out of the hospital but I was still having some very big problems that were once again interfering with my ability to work and live a quality life.

As time went on I was losing weight rapidly even though I was eating enough calories. I had to hold onto the walls to steady myself when I would walk down the hallway to the bathroom because my body was so weak. This put me in a situation I hate to be in, one where I look unreliable because I had to call in from work often. I told my doctor about how I had been doing and he wouldn’t 

even do blood work!

That whole situation with my doctor was terrible and lasted far too long. If you’d like to read about it more in-depth here it is: https://inflamedanduntamed.org/its-all-in-your-head/

Anyway, I ended up going to a new hospital and all it took was one scope, the scope in the image you see below, to prove what I had been trying to tell the doctors at the other hospital for a long time. I have the image blurred so that if you are squeamish and don’t like seeing pictures of diseased intestine you don’t have to see it. If you do want to see it just hover on the image to fix the opacity and click it to enlarge.

report from my endoscopy with 4 pictures of my jpouch and small bowel.
If you are uncomfortable looking at the insides of a diseased intestine do not hover or click on the picture

There it was, right before our eyes; Crohn’s Disease.

The report says: A diffuse area of mucosa in the entire examined ileum was severely erythematous, friable (with contact bleeding), granular, inflamed and ulcerated. Diffuse inflammation with ulceration of pouch and entire examined proximal small bowel proximal to pouch consistent with Crohn’s exacerbation. 

In my hospital bed making a muscle with my arm that has a PICC line in

From Then Until Now

That hospital stay lasted 6 weeks. I was put on IV steroids to help induce remission and went back on medication for maintenance. I was also put on TPN again for the weight that I had lost. Since then I’ve had to change biologics a couple times; once after getting serum sickness and once for losing response. 

I have not made it a single year since then without at least one hospitalization but none of them have been for Crohn’s disease; they have been caused by the rare disease that I have. 

Three years after my diagnosis changed I had another major emergency surgery because of a midgut volvulus. The surgery set off a series of complications including sepsis and worsening of my motility disease. I threw up feces in the hospital and would also vomit up the tube feeding formula I was on because contents of my digestive tract just wouldn’t move through me very much and so when I had a certain volume of food or liquid in my digestive tract it would just sit there and pool until I threw up. This resulted in going back on TPN yet again. In total that hospitalization lasted 3 months. 

Unfortunately since then I have had many other hospital stays and have gone through so much. A lot of it involves my other illness and you can read that story here

As far as my Crohn’s disease goes I was doing quite well and had maintained a long span of remission until 2019 (this part being updated in January 2020). I had a scope during the summer of 2019 that showed active disease in the entire extent of the endoscopy. Without Medicaid, which I lost when I moved to Illinois, I cannot afford the medication my GI prescribed for me. Instead I am trying to make some other meds work as I continue to fight to get that insurance back. 

Becoming an Advocate

I started Inflamed & Untamed on September 1, 2011 after the hospitalization where my diagnosis changed from UC to Crohn’s disease. I didn’t go into this with the intentions of becoming such a big voice in the community. Truthfully it all began because I didn’t know where my life was headed and I felt directionless. I had been in and out of the hospital for so long going through surgeries and complications so I felt like I didn’t have any stability in my life. I kept having to start over with school and work because my health always got in the way eventually.

On that September the 1st

I just opened my computer and turned on my webcam and started talking. I posted the video to YouTube and it got a really great response so I kept doing it and here we are almost a decade later.

My intention with Inflamed & Untamed was to create a space on the internet that I thought was lacking at the time. I was so tired of seeing the misinformation and pseudo science out there that was contributing to the misconceptions the people in my life had about Crohn’s disease. 

I wanted to provide patients with information they could trust;

information that was evidence based. I also wanted to create a site where people without IBD could come to read about what it really is and not be bombarded with misinformation that directly affects patients in a negative way.

I didn’t want this site to just be information based but I also wanted it to be a place where people could come and read my stories or watch my videos and feel a connection. It is so beneficial to have others out there who can relate to what you have been through and I wanted to provide that for others.

IBD and digestive disease super hero costume

This site and everything that has come out of it has completely changed my life in such a positive way. It also took away those feelings of being worthless, feeling directionless, and of having no purpose. I have had the honor of doing some incredible things and I’ve made my best friends along the way. 

Ok! I definitely did not keep this short. It’s hard to tell your entire history of an illness when you’ve lived with it for so long. In reality this was actually a very condensed version of all that I have lived through with Inflammatory Bowel Disease. Thank you for reading! 

Sara

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