• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Story

My story of how I was diagnosed with Crohn's started in early 2011, where it began with pains when I was on the stool. These pains were almost unbearable. A little while later, I began to feel sharp pains in my lower abdomen and many harsh bowel movements, in which I would get goosebumps and feel extremely cold. I saw the doctor and he told me to keep track of what I eat to see if it hurt me, but no food stood out in making me feel pain. I struggled through these symptoms, and saw the doctor again. He then suggested it was Crohn's disease. I was relieved that there was an explanation for my pains, but my parents did not believe it.

My first flare up was in early August 2012. It first started when the doctor noticed two large ulcers in the back of my mouth. This, along with acid reflux made it uncomfortable and hard to eat. I had a national lacrosse tournament in Orlando on the weekend, and played in 10 games in the extremely hot sun. I must have lost about about 10 lbs that week, due to the intense exercise and the fact that I could barely eat. My weight dropped from 145 to 127 in the course of two week, and during this week I experienced intense chills and shivering that lasted for an hour, followed by sweating. A couple times I had a 104 fever, even with the chills. I should have gone to the hospital, but we were on vacation. When I got home, I had numerous blood tests and doctor visits, along with a colonoscopy and endoscopy. When the results came back, the doctor said it was clear that I had crohn's. He also found extremely low levels of some sort of protein in my body, so I drink a protein supplement now. Also like most people who have crohns I have a calcium deficiency. And lastly, I found out that I was lactose intolerant, which is weird because most people who have a lactose intolerance have a reaction every time time they eat lactose, and I do not.

My crohn's disease has been mild so far, and I am lucky it has been. I have not had any surgeries, and hopefully I will not have to have any. I take six pentasa pills a day along with one calcium supplement. Pentasa has definitely made my crohn's less severe, but I still have harsh pains daily.

Crohn's disease has forced me to eat healthier and live a better lifestyle. I have had a loss of energy and mood swings because of Crohn's, but I am learning to overcome it. I will not let Crohn's become who I am or defeat me. I will overcome it. If this is the worst thing to happen to me in my life, I will be very lucky.

Crohn's forum has been a huge help so far. I'm glad to have found this community.:biggrin:
 
Welcome to the forum. It's a great place to be. I'm sorry to read your story, but I'm glad that you are under a doctor's care.
I was just wondering about the Pentasa. It is not often used as a medication on its own for Crohn's disease as it usually does its best work in the colon for colitis. Also, did you ever have your vitamin levels tested as a deficiency may be the cause of your loss of energy.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

How often do you still see your GI doc and when are you next due to see them? I am also querying the Pentesa, this is actually a med approved for the treatment of ulcerative colitis and from what I have seen here does not have much of a success rate in the treatment of crohn's. Given the pain you are still having I wonder if this is really the correct med for you. Are you able to get in contact with your doc or a GI nurse to see about getting an appt to have a check on disease activity and whether the treatment needs to be changed. I agree about getting your vitamin levels checked as well, especially your B12 as this is a common area for deficiences with crohn's.

Please keep us updated on how you get on.

AB
xx
 
AB and seebee- My next check up is January 17th. I believe the doctor put me on pentasa in the first place because my Crohn's was mild, and only in the terminal illeleum. I will ask him about other medications because I feel like Pentasa only covers up my symptoms and pains like others who have taken pentasa have felt.

I take a multivitamin that has more than enough B12 in it, but I will ask the doctor if the multivitamin is affective or if I should just take a pure B12 supplement. I also take a calcium supplement on the side.

I'll make another reply after the visit to the doctor.

Thanks for the advice. :D
 
Sorry for the late response. I talked it over with my doctor and the new test results came back. I still have inflammation in my small intestine, which they thought the pentasa would calm down. He wants to keep me on pentasa for now, but along with pentasa I now take a flagyl pill. It is one of the hardest pills to swallow because of its taste but it has worked wonders. In a couple of weeks I have had barely any cramps or pain in my lower stomach area. I still get cold and get the chills all the time, but I can deal with that.

Luckily the pentasa and flagyl combination is currently working. Im going to keep taking it until my doctor says otherwise, or if my symptoms return, which I hope they won't. I haven't felt this little pain in years though. Life is gooooodddd😃
 
Hi tea...Welcome to the forum. I ma glad that you are in regular contact with your doctor. I am also glad that your medications are working for you. I cant take either of those meds -I got Pericarditis from Pentasa and Flagyl made me so ill I couldn't keep it down. I know you think you can deal with having a fever and chills, but these are also symptoms that something isn't working right. Make sure you discuss this with your doctor when you see him next.

Keep us posted.
-Lisa
 
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