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New to forums/My story

Hi. This is my first time posting on a any type of forum though I have looked on this forum since being diagnosed with Crohn's Disease. I was diagnosed with Crohn's Disease in 2010 at the age of 23. I began to have symptoms my junior year of college. I was having frequent diarrhea and occasional bloody stools. I went to my PCP regarding the issue of bloody stools. He did not do a rectal exam or take stool sample and I was told that it was could be hemorrhoids even though I was pretty certain that was not the case.

I continued to have diarrhea throughout the rest of my college career with occasional bloody stools. I never went back to the doctor regarding this issue because I felt stupid after going the first time and also because many people in my extended family have IBS so I assumed that was what was causing my symptoms.

After college I went on to complete a year long Master's program. The frequent diarrhea continued. Also during this time I was nauseous almost daily and my energy level was much lower than usual. I was having night sweats almost every night. I assumed this was from the stress of school and working. 3 months after completing my degree was when things worsened. I began to have bad stomach pains and diarrhea for a few days. My stools became just blood. I went to the ER because all the blood really scared me. The CT scan didn't show anything and they told me it was likely gastroenteritis. My mother contacted my new PCP that same day and he luckily was able to get me into see a GI doctor for a colonoscopy in just a few days. The colonoscopy showed that I had Crohn's. I started on Asacol immediately and my symptoms settled down for a few weeks until I had another flare.

With this flare, I developed a very stiff neck. I did not think it was at all related to the Crohn's and assumed it was from sleeping on my neck in the wrong position. As the week went on, I also began to have terrible body aches, particularly in my calves and shins. I figured I was just getting the flu until I began to have the bloody stools again along with awful back pain which was similar with my first flare. I also had nausea and vomiting. I ended up going back to the ER and the ER doctor called my GI doctor who wanted me admitted. I spent 5 days in the hospital. Once I was weaned off the prednisone, my doctor started me on Remicade. About a year ago, I started on Humira because it was so much more convenient and I also was switched to Pentasa. I am happy to report that I have not had a flare up since then and my doctor was very pleased with the results of my last colonoscopy. Though I am in remission, I still experience symptoms which I feel I can never get a clear answer about.

I am hoping this forum will help me understand this disease better and I also hope to get support as well as provide support to those who have had or a loved one who has had any type of experience with an illness.

It feels good to tell my story. Thank you so much for listening!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Just to confirm what symptoms do you currently get? I take it that the tum itself is fully settled? I must admit that I am curious as to why you are on the Pentesa as this is an entry level med sometimes used for mild Crohn's and is actually designed and approved to work for Ulcerative Colitis, I should think it is more likely the Humira that is doing the trick for you.....

There is a lot of helpful info and support here so do have a good look around.

AB
xx
 
Welcome to the forum and thank you for sharing your story! I am glad you are doing so much better. And congratulations on your Master's degree. I actually started to get frequent partial small bowel obstructions during my Master's program and that's when I was diagnosed. My first symptoms were from a stricture that had formed from ulcers higher in my jejunum. I didn't even have diarrhea until about five years later. I think the Master's about killed me but I completed it anyway in between hospitalizations. :)
 
Hello and welcome to the forum. Your story is similar to mine (except it only took me a little over a year to get diagnosed). I got a lot of "it is just stress from school" from several different doctors.

What symptoms are you still having? I hope you can get those under control soon.
 
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