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My Story - Need Advice

Hey everyone
This is my first post in this site, and with it i intend to share my story with hopes of getting useful insights from you guys.

It all really started in December 2013, when all the holiday binging I did led me to feel extremely bloated and have blood in my stool. I went to a local clinic where they signed me up for blood tests that would supposedly tell me wether I'm allergic to such things as gluten or lactose (my family has a history of celiac disease). These tests were inconclusive, but the blood quickly went away and I stopped worrying about it.

Until March 2014 arrived where bloody stools were accompanied by sharp pains in my lower abdomen. I went to the ER where I was given an appointment for a colonoscopy ( I should also mention I had an uncle who died from complications cause by colon cancer). The colonoscopy I had in early May revealed I had an ulcer on the valve between my colon and small intestines. A quick two days later, I was back in the hospital for a endoscopy which revealed a healthy stomach.

In mid may I had an appointment with my GI to discuss my results. She suspected Crohn's disease or Ulcerative Collitis and signed me up for a CT scan to be had in August. She also prescribed Pentasa to help with the symptoms.

This is where I need advice:
After one week of taking pentasa, I had a huge flare up. On Friday the 23rd of May I woke up and rushed to the bathroom, where I then spent most of my morning. For past 5 days I've been going to the bathroom 20 times a day (the pain even wakes me up at night), have had constant bloody diarrhea, and I've been in a lot of pain.
Personal research into the side effects of Pentasa indicated that 1% of people taking pentasa will develop increased symptoms of Crohn's desease!
Am I in this 1%? Should I stop taking the drug? Or is this an untimely flare up?

I'm asking you for help because my GI is booked from now until my Ct scan.

Thanks in advance, hopefully this was clear.

Ed
 
Hi Ed

I am on Pentsa and haven't had any side effects. I wouldn't stop it without speaking to your GI. It sounds like a bad flare, you might need steroids or a stronger medication. It might be worth visit your GP.
 

valleysangel92

Moderator
Staff member
Hi there. Welcome to the forum.

I would advise against coming off your medication without first talking to your GI. Although pentasa is a mild medication it's still not a good idea to just take yourself off it without medical advice.

Call your doctors office and let them know the situation. Keep a symptom diary to show your doctor the next time you see her.

It might be time to go onto steroids and consider some more heavy duty medications. Pentasa is one of the mildest medications used in treating crohns disease and it is not uncommon for patients to find that it's not enough to enduce remission.

Also, be careful of Dr Google. The internet is a wonderful thing full of very useful information but it can also be misleading and leave us prone to diagnosing ourselves. Always check what you read with a qualified medical professional and remember that you can always come chat to us if you are worried about something specific or if you just need a chat.
 
I first put on pentasa. My symptoms did not get better with it and was taken off them. However my IBD Nurse only took my off them after about a month as they may take a while to work. How long have you been taking pentasa? My only advice is to ask your GI or IBD Nurse.
Hope things get better :)
 
So here's the end of my story. I went to emergency because my symptoms were unbearable. I got my CT scan that day, and was diagnosed with Crohn's. They put me on predisone.... I have never felt so good in my life.

I feel as though a fog cloud that had been crowding my brain for the past 5 years has been lifted. Never have I been so ambitious, concentrated, focused and excited about living every day (I this isn't just the side effect of the steroids). It's as if my body is no longer spending all it's energy fighting to digest food and is now properly using the nutrients. You just don't realize how much a disease affects your life untill you treat it!

I legitemately feel like being diagnosed with Crohn's (or rather being treated for it) is the best thing that has ever happened to me. I feel like I'm finally the person I was meant to be!
 
So here's the end of my story. I went to emergency because my symptoms were unbearable. I got my CT scan that day, and was diagnosed with Crohn's. They put me on predisone.... I have never felt so good in my life.

I feel as though a fog cloud that had been crowding my brain for the past 5 years has been lifted. Never have I been so ambitious, concentrated, focused and excited about living every day (I this isn't just the side effect of the steroids). It's as if my body is no longer spending all it's energy fighting to digest food and is now properly using the nutrients. You just don't realize how much a disease affects your life untill you treat it!

I legitemately feel like being diagnosed with Crohn's (or rather being treated for it) is the best thing that has ever happened to me. I feel like I'm finally the person I was meant to be!
Wow! You've certainly been through the mill. I'm also "Wow" at your perspective and your experience on prednisone. I'm glad it's working for you and hope you remain feeling better than you did :)
 
I was in your same position three years ago. I was only on for Pentasa a week or so, and my symptoms got extremely worse. At the time, I was waiting to have a colonoscopy. I called my doctor, and he was able to push up my colonoscopy to to the next day. I was put on Entocort (another steroid), and felt the best I had in years! Though it sucks being diagnosed, I feel fortunate that I have an actual diagnosis, since so many are "un diagnosed"
 
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