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Crohn's Disease Forum » Your Story » Stewart's Introduction


04-21-2014, 07:39 PM   #1
Stew
 
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Stewart's Introduction

I first experienced stomach cramps, fatigue, and fevers in the fall of 2001, when I was 12 years old and in 7th grade. At that age I was unable to properly describe what I was feeling so I mistakenly described my pain as heartburn and I was misdiagnosed with acid reflux disease.

At that time I was still able to function; I would have cramps here and there but I never had to do more than sit down and take a minute to myself. Otherwise I was still able to go to school and do most things just fine. I was prescribed medication for acid reflux but the positive reaction may very well have just been an uplifted spirit and a lack of stress.

I was always thin for my age/height. When I was 14, in 2003, I was 5'9" and only weighed 120 lbs. Though that was the first time I experienced a major flare up and I fell to 100 lbs because my appetite was almost nonexistent, my stomach cramps increased to a more detrimental level, and my energy levels were almost nonexistent as well. My mother believes the only thing that got me through a school day was drinking gatorade at lunch.

This continued throughout the school year and into the summer of 2004. My mother eventually read up and found Crohn's disease and had my family doctor get a referral for a colonoscopy. My diagnosis followed soon after. I was put on prednisone, asacol, and mercaptopurine. Soon after being put on the medications I recovered from my flare up and rose to about 130-140 lbs.

When I was 16 I believe I was still on asacol and mercaptopurine and things were going well for me health-wise. I was starting my junior year of high school and I distinctly remember I had a math class. I've never been very good at math and it stresses me out a lot. The stress from the class hit me so hard I fell into another flare up. I ended up missing school and I imagine I lost a few pounds. My GI (of 2 years at this point) determined that my current medications were not doing the trick, so we moved me up to Remicade.

I instantly had a positive reaction with Remicade. My symptoms disappeared almost completely and I was no longer taking asacol and mercaptopurine. I've been on Remicade since October 15th, 2006 and am coming up on my 9 year anniversary on the medication. Because I have been there so long I am very familiar with the nursing staff and they have basically seen me grow up.

When I receive Remicade I take an advil and benedryl and receive a flush in my vein and then the infusion itself takes about 2 hours in total, the whole thing about 2 and a half hours with getting set up and discharged. The benadryl makes me very tired and I cannot drive myself home because I live an hour from the infusion clinic. I am required to receive a TB test once a year because I am more susceptible to it on Remicade.

After starting Remicade I went a long time without any complications. I would have a bad day of stomach cramps here and there, but nothing worth adjusting my medications for. I would see my GI about once or twice a year and things were going very well.

In 2009 I received a new symptom I had never experienced before: joint pain. I would have pain in a specific limb for a week or so at a time, and after that week it would jump to a new limb. It was very odd and concerning. I did not know this was a possible Crohn's symptom. I eventually was prescribed celebrex and took 2 ibuprofen to numb the pain. It lasted the summer months but after that went away and never returned.

In 2010 I turned 21 and up until that point I received all my medication and doctor visits and procedures free of charge to myself because of a special child's insurance provided by the state, due to my low income status. Because I turned 21 I was no longer eligible for this insurance. If you are unfamiliar with Remicade, it is very expensive, and my infusions cost around $10,000 each visit. Eventually I learned that Johnson and Johnson provide a financial aid program to cover the cost of the medication and the hospital I go to offers a program to cover the cost of the clinic visit and nursing staff.

Before I learned this though I felt such stress from the thought of losing the ability to get Remicade that I fell into my worst flare up ever. I fell from 180 lbs to 140 lbs in the span of 2 months. My stomach cramps were some of the worst I'd ever experienced. And I had no energy at all. I was naively hoping that my remicade alone would fix my flare up, but I needed more than that.

After waiting far too long to recover on my own I was hospitalized for 6 days and received my second colonoscopy. I was put on sulfasalazine as an alternative to asacol, because of its expense, and prednisone. My infusions were reduced from 8 weeks to 6. I was hospitalized in August and by the time March 2011 came around I was back to 8 week infusions, no longer on sulfasalazine or prednisone, and back in remission.

My remission remained steady until 2014. I was living on my own and attempting to find a job. I was hired by a temp agency to work in a greenhouse. The job was not overly physical, but I was on my feet all day and some days I would be there for 10-12, and on one occasion, 13 hours. The constant physical stress I endured pushed me into my latest flare up. It has been very mild compared to my other flare ups, but very persistent.

I visited my GI soon after my flare started and was put on Prednisone because of its low cost. This helped me for a little, but it is only a bandaid and my GI and myself do not like me to stay on it for very long.

I weighed around 190 lbs when my flare up began and I have only fallen to 160 lbs at my worst his flare up. I don't like to be at this weight, but it is not a concerning weight to be at for me. While I have been able to mostly function this flare up has cost me two jobs. I had to quit working at the greenhouse because the hours and responsibilities were too much for me, and as a result the temp agency dropped me. I found a job at a grocery store but requested a day off within my first 30 days and the policy there did not allow me to do so and keep my job.

I eventually found a job working third shift at an assisted living home, which allows me many hours of downtime and the job is not physical at all. So while I have been in a mild flare up working here, I am able to sit down while I am not feeling well.

I was able to get on my work's insurance policy, so I am finally able to afford asacol again and had my third colonoscopy last Friday. As of now I am doing alright, mild cramps here and there, an increased appetite, and normal energy levels.

I work very odd hours. 12 hour shifts, five days on, two days off, two days on, and five days off. So my responses may be sporadic.

I look forward to participating in many discussions and getting to know people here!
__________________
Diagnosis: Moderate Crohn's, 2001
Current Medications: Remicade every 6 weeks, Asacol 2 pills 3 times daily, Entocort 3 pills once daily
Currently: Recovering from a mild flareup
Main Symptoms: Stomach cramps, loss of appetite, constant weight fluctuations
04-21-2014, 07:48 PM   #2
Orchid
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Welcome Stew! I'm sorry you almost lost your ability to get Remicade, America is so insane about healthcare. What sort of greenhouse was it you worked at?
04-21-2014, 07:50 PM   #3
theOcean
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Welcome to the forum, Stew! Glad to finally get you on here.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-21-2014, 07:54 PM   #4
Stew
 
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Welcome Stew! I'm sorry you almost lost your ability to get Remicade, America is so insane about healthcare. What sort of greenhouse was it you worked at?
It was a distribution greenhouse, so I would make the flowers look presentable for store sales, get them ready to be shipped out, and make room for more to be able to grow/be watered.
04-21-2014, 08:01 PM   #5
Orchid
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Oh! So I guess you saw a lot of easy to raise sort of plants destined to death by Walmart.
04-21-2014, 08:06 PM   #6
Stew
 
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Oh! So I guess you saw a lot of easy to raise sort of plants destined to death by Walmart.
Yeah just a wide variety of flowers that went to various retail stores throughout the country. Nothing exciting, but I got to listen to my ipod all day, so that was nice.
04-21-2014, 08:27 PM   #7
Orchid
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May I ask what you'd listen to?
04-21-2014, 08:36 PM   #8
Stew
 
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When I wasn't listening to The Rooster Teeth Podcast or Welcome to Night Vale I would listen to Fall Out Boy, Red Hot Chili Peppers, Foo Fighters, Trocadero, not a huge list really.
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