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My Crohn's Story

My Crohn's Story

Hi everyone! This blog will be mostly consisted of my life with IBD, so let get into the first posting: My Crohn's Story. I started to get really sick in the beginning of October 2010. I went to my primary doctor because I noticed I would be bloated for days on end and I would experiencing horrible constipation issues. I would notice that I would feel extremely fatigued as well and I would be taking afternoon naps and literally falling asleep in class and I had no idea why. My doctor first thought that I had a bacterial infection, so she basically told me to let it run its course. After a week, my symptoms started getting really worse, so then she gave me a blood test to see if any of my levels were low since I have a history of anemia. The results were mailed to me and all my levels were fine. I went back to the doctor's because I was having diarrhea constantly and the stomach pains had intensified. This time she thought it was lactose intolerance as I was lactose intolerant in the past (when I was about 8 or 9 years old) and I grew out of it, but then she suggested that maybe I didn't and to cut out dairy out of my diet. I tried that for a few weeks, with no such results and things progressively got worse. The cramping and bloating had begun to be unbearable for me and I was at my wits end at this point.

Let us fast forward to the first week in December 2010, where I had to have yet another blood test to see if anything else was wrong inside my body. Those results came back normal as well. I was not going to let this go, so I told my doctor that I know there is something really wrong with my body and I was willing to go through anything I had to in order to figure this all out and fix it if I could. She then sent me home with a stool sample test kit and I have to say to date that was one of the most disgusting things I had to do at the time. It was not a fun experience to say the least and it was very degrading for me to do among many other feelings I have about it. So they tested it and the results came back normal. I told her that the pains in my stomach started to get worse, so in the third week, she noticed that I was tender on my stomach when she had examined me on about the 3rd week of December 2010. I had to have an emergency CT scan and let me tell you all that when you are flaring then and you don't know at the time you have Crohn's Disease, drinking the dye mixed with ginger ale really makes me hate ginger ale til this day because it brings back painful memories for me. I just remember being in excruciating pain before the procedure and I was extremely bloated. I went and has the scan and they said that I may have some form of colitis, but they were not sure. I will never forget after the procedure I was in an enormous amount of pain and it felt like a blow torch was right up against my stomach because my insides felt like they were on fire. I was crying from the pain and I remember the doctors in the hospital talking about keeping me for surgery. I remember the nervous hours waiting for the phone call in the waiting room seeing if I had to say and luckily they took surgery off the table for me and I was able to go home.

I was then sent to a gastroenterologist by this time because the results came back IBD related. I remember being scheduled for my colonoscopy on December 30th 2010 (these dates always stick in my mind) and I just remember my first colonoscopy experience being absolutely horrible. I did not have any idea what to expect and that is always the worst thing. I had mixed the colonoscopy drink wrong because I filled it up to the wrong line, so the prep tasted rather strong and the lemon flavor pouch I mixed in that comes with it (which I might add was a horrible idea) made me want to gag as I was drinking it and the lemon flavor made it worse now that I look back on it all. I did not pour enough water in the bottle, so it was thick and harder for me to get down. I remember my G.I. complaining that I was not as cleaned out as he would like me to be, but nonetheless I had the scope. I remember being really dehydrated and my most memorable part of that night is when the nurses were trying to insert the IV and since I was so dehydrated from the prep they could not get a vein. Next thing I know the vein they were trying to get on my right arm completely blew and there was blood everywhere (no exaggeration it was all over my arm) and it left a huge bruise on my arm. Even today, when I get blood I always tell them to draw from the left because I never have much luck with right arm. He told me that I would get the official results the next morning, but as he could see I had inflammation in my small and large intestines.

The next day, December 31st 2010, arrives and right about at 8 a.m. I get a phone call from G.I. officially giving me a diagnosis of Crohn's Disease. I remember thinking to myself at the time saying I am 20 years old and a junior in college and I have just been told I had an incurable disease. I thought my life was over and I remember going through a stage of depression soon after the news. I had no idea where to turn as none of my family members or friends had ever heard of the disease and I knew no one with it. I felt alone and completely isolated.

So let me go to January 4th 2011, where my G.I. wanted me to take a genetic blood test in order to check to see if Crohn's Disease was hereditary. I was sent home with the Promotheus lab box and I remember going to my phlebotomist to get the test done. The results came back and it said that I was the first in my family to have Crohn's Disease from looking at the genetic markers. The following week I started my Crohn's treatments. I was put on Asacol, Prednisone, Imuran, and I also later took Phenergan for the nausea I was experiencing as well as iron pills because I was anemic. Let us fast forward to April 2011 and I was getting really sick and I surmised that it was due to the Imuran because I would always feel ill after taking it. I would be vomiting constantly and I needed it to stop. I remember scheduling an appointment with my G.I. and I will never forget he only had one day open and of course it was during school and at a different location. I expressed the urgency of my visit and I was basically told that if I didn't come during this day, I would have had to wait another two weeks, so I ended up just making the appointment because I could not take it anymore. During the appointment we discussed how I was responding to other medications and he had deemed that I had a severe allergic reaction to the Imuran and it was removed from my treatment regime. He then chose to put me on Mercaptopurine (6MP as it is commonly known) in combination with the Asacol and the Prednisone I was already on at the time. It seemed to be working well.

I remember the Prednisone made my face break out a lot. I would have horrible night sweats as a result of this steroid medication and I would also have terrible insomnia as well as my heart would be racing. The Asacol pills are hard to swallow and still are today even though I chose the smaller of the pills. I take the 400mg pills instead of the 800mg pills. The 6MP I was told was based on your weight so a certain dosage was for a certain person, so therefore I was put on 75mg initially, then I noticed I was getting sick again, so it was bumped down to 50mg, which I still take even today.

Let us go to about June 2011 where I have my 2nd CT scan and this time they were only going to look exclusively at the intestines so I had to drink the barium which tasted like banana and blueberry blended together. I will never forget the taste or the huge bottles I had to drink. The purpose of this one was to check the inflammation in my body to see if the 6mp was doing its job. My G.I. always tells me that CT scans are inconclusive, so I found it weird how I had to have a CT scan out of the blue, but nonetheless it was done. The results were that the 6mp was doing its job and I was allowed to continue to be on it. August 2011 marked the month where I was taken off of the dreaded Prednisone. I was on it for a total of 8 months or so and that was long enough. I was weaned off of it every 2 weeks, the dosage went down until I was taking half a pill to then none of it.

Next we will fast forward again to December 2011 and I am a senior in college now and I have to have an endoscopy because I was having more issues. I remember having to gargle the anesthetic fluid and it tasted horrible and numbed on contact. It was hard to gargle because your mouth was instantly numb. I remembered thinking that it reminded me of being at the dentist when the dentist gives you the shot of novocaine. The endoscopy procedure was fairly easy to go through and they found that I had some acid erosion and that I had an acid reflux issue at the time, so I had to take Prilosec pills. I took those for a little while until it cleared up and then I stopped it altogether.

Finally let us go the last portion of my story where it is May 2012 and I am scheduled for my 2nd colonoscopy and this time I learned from past mistakes. I mixed it properly, I got it all down and I found my own technique to get through it. I call it "the gulping method". Since you can drink the clear Gatorade, what I did was gulp the liquid from a glass and then take in the gatorade right after to minimize the taste and it worked out quite nicely where I was all cleaned out this time around. I had my inflammation levels checked as well via blood work and it was found there was mild inflammation in my body.

Let us fast forward to December 2012, where by this time I had about 3 more blood tests as I have to get them every 3 months because my medications affect my liver. I had all my markers and levels checked and the doctor said that I was in remission because he had seen a remarkable improvement in everything and that all my levels for the most part were in range. This is my story fellow IBDers and I hope you enjoyed reading it.
Hi. Welcome to the forum. I am sorry that you went to all this at such young age. But I am glad you are know in remission. That's great. Thanks for sharing your story WadeszWorld's. I hope you stay in remission forever. Please keep in touch and let us know what meds are working for you and how are you doing.