Hey everyone, my name is Kaitlin and I am an 18 year old college student with UC. I have dealt with this disease for 4 years, and I’m about to get rid of it for good… hopefully
Colitis Symptoms Right Now:
Occasional Bloody Stool
Joint Pain (mainly in my knees)
Loss of Appetite
It all started when I was 14 years old. I began to have severe cramps, along with extreme diarrhea that was mostly blood. I was having close to 30 bowl movements a day and urgency. My parents took me to a local pediatric gastro doctor who gave me the drug Pentasa, and assured my family that all the bowl movements were “just a part of the disease”. He basically was telling me to accept the fact that I was going to live on a toilet and it was “normal” to have that many bloody bowel movements a day with UC.
Trusting the doctor, my family decided to go on our annual camping trip to the great mountains of New Mexico. My mom, wanting to help me, had purchased a portable toilet to take, knowing my urgency would need a place to expel even in the great outdoors. The activities of camping were taking a toll on my colon, and slowly I became more weak and less able to do much of anything. I laid in the camper alot and just rested. My mom kept calling this Dr throughout the weekend, concerned about me progressively getting worse. He kept assuring her I was ok and this was normal. We decided to go on a hike too, not realizing my sick body had lost more than half it’s blood. I had to be carried down the mountain by my dad, all 90 lbs of me.
Everyone started to notice I was beginning to look jaundice and yellow. We headed home and took me straight to the doctor once we got home (my family doctor, NOT the GI doctor that gave me the Pentasa).
Once at the doctor, they did a few blood tests and my family and I sat in the waiting room waiting for the results. My family doctor soon walks in, tears in his eyes, and tells us I had less than half of the blood in my body. He said he didn’t even know how I was able to stand up, let alone walk around.
I was immediately taken to the hospital. My mom headed straight to the blood center and started the process of giving blood, knowing she was my blood type. My parents fired the GI Dr that almost let me die. I was admitted to a room only to soon be moved me to ICU. All I remember from that first night in ICU was nurses constantly coming in and checking to make sure I was still alright, and my heart was ok. I didn’t find this out until much later that I was expected to die that first night in ICU, because my heart didn’t have enough blood to pump correctly. I had to receive almost 3 bags of blood! I spent 3 days in ICU, then 3 more days in a regular hospital room.
My family doctor recommended me not having dairy product as this would aggravate my colon. We went home and bought a juicer and stocked up on a ton of “non-dairy” products for me to eat. About a month later, I started flaring again in the night! I woke my parents, my mom called my pediatrician, and we were told to go straight to the hospital again… this time we went to a different hospital and a different gastroenterologist doctor at the recommendation of my pediatrician. I was in the hospital again for 7 days.
I got a new GI doctor and he changed my treatment plan and better explained this disease Ulcerative Colitis to us. I didn’t have a clue what this meant for my life ahead of me, nor did I know the complications I would come across with this dreaded disease. The doctor told us how to manage it, and I was given a new drug Asacol. It was working well and with it I was given a short dose of prednisone. I did end up going into remission, and stayed that way for a couple of years.
When I turned 16, I began to have more complications. Every now and then I would have diarrhea or bloody stools. This would always end up with me either taking a higher dose of Asocol, or Prednisone. It was always something interrupting my life with this sickness.
I hate prednisone by the way! I always end up swelling up like a cow, gaining a moon face on my already chubby cheeks, along with my patience going down the drain, weight gain, and irritance level shooting to the roof. It made normal teenage hormone problems even worse.
The summer before my senior year in highschool, I went to camp with my church. I started having bleeding and diarrhea at the end of camp. I came home and the Dr gave me Rowasa enemas, because I begged him not to put me on steroids again. I got better, but never got completely well. It all just seemed to drag on, but not bad enough to admit me to hospital, just to make my life miserable.
Then I got Strep throat before Christmas break. My pediatrician gave me a penicillin shot to try to keep antibiotics out of my colon hoping to prevent a flair. He is an incredible Dr who has helped me and supported me through this. The penicillin caused me to get CDiff. My GI Doctor didn’t realize I had CDiff because the first few CDiff tests came by negative. He thought it was a flair and treated it with steroid, which made it worse!
My parents and pediatrician thought my disease was getting out of control and helped my family get me into the Mayo Clinic in Minnesota in April. They figured out, after telling my history,I had CDiff and helped me recover from it.
Unfortunately, the damage from the CDiff was so bad that it caused another flair in July, just 6 weeks after I had started feeling better from CDiff.
I had to get on prednazone again and the doctors were very concerned about me dying from complications of steroids, because I had taken too much and my body was now “steroid dependent”. The doctors said I was either to have my colon removed or try Remicade. All oral meds have failed me, including Imuran. The doctors at the Mayo Clinic suggested that I try Rhemicade first, since removing my colon is permanent. I told my parents I did want to go ahead and try remicade, and last Wednesday was my first infusion. I was told I wouldn’t be able to see any changes in my body until after the 3rd infusion, and this has to be true, because I have not seen any positive results yet.
My old swim coach from my sophomore year in highschool is a Dr. Not my doctor, but a family friend. He called my dad after he went to a clinic with a Dr in town from UT Southwestern. This Dr was in town talking about probiotics (VSL#3) and a radical new procedure called a fecal transplant… yes… that’s what I said. Stool from a donor implanted into my colon to put “good” bacteria back in. My dad set up an appointment with this Dr and we traveled to this doctor, at UT Southwestern in Dallas this past weekend. We found out that majority of patients who have done this procedure and have UC have gone straight into remission, and one girl even was constipated for a few days… CONSTIPATED!:) I never thought I would hear that word again.
After meeting with this new Dr and finding out that this transplant may not work, because of the extensive damage my colon received from the untreated CDiff, I decided that I wanted to speak to a surgeon at UT Southwestern about the option of surgery. I spoke with the surgeon and I was given a “kit” to learn all about what my future after surgery might hold if I decided this option.
And that’s where I am today! We are going to try this fecal transplant in the next week or so. I am hoping and praying I’m in that large percentage of people it works in.
If it doesn’t work, I decided not to continue with Remicade. I struggle with upper respiratory sickness and want to travel and participate in missionary work and can’t go overseas with a compromised immune system. I’m also personally sick of being dependent on meds and don’t want to sit and get IVs every 6-8 weeks as a part of my life.
If the transplant is unsuccessful, and we will know that in 2 weeks, I have chosen surgery to get a j-pouch as the best option for me. I am ready to go ahead and have the surgery done, that way I can start to heal and be well enough to begin college in the spring. Unfortunately, I had to drop out since I due to my symptoms of UC and recent hospitalization.
I’m so ready to live a halfway normal life, instead of living on the toilet like I do as of now. I have to say that the Lord Jesus is the only way I have stayed halfway sane through out this whole thing and I have so many amazing friends and family who keep me in check and help keep my mind off of things.
I’ll keep you all updated about how this fecal transplant goes, it might be a new remedy to our situation! Stay strong guys, lets beat UC!
Where I’d like to be in 1 year:
UC free… and living the life of a normal 19 year old
Prednizone- works great, horrible side effects (weight gain, moon face, irritability, hair loss)
Asacol- worked for a period of time
Pentaza- Didn’t work
Rowasa enemas- worked for a period of time
Remicade- hasn’t worked
Fecal Transplant (in the form of an enema)- about to find out!
written by Kaitlin
submitted in the colitis venting area