New and now not alone

[Brokenbelly]

Hi everyone,
I have had IBS symptoms for twenty years and learned to manage them quite well with diet and avoiding stress. Four years agao that all changed. I was so sick running to the bathroom several times a day. Had CAT scan and it showed swelling. I was scheduled for colonoscopy and I didn't go. I went through periods of feeling better so I didn't think much of it. It got so much worse. I had a colonoscopy and upper GI two months ago and I have Crohns. It was nice to know the reason I could barely make it to the toilet had a name but it didn't make me feel any less alone. I spent our vacation in July looking for the next bathroom. It wasn't much fun and missed a vacation over Labor Day because it is easier being at home. No one understands.( well except you guys) People ask me all the time how I am feeling and I lie because it is easier. They don't understand that one minute I am fine and that can change at any time. My day is always a gamble. I tired Lialda at 2.4 and the 4.8 and then realized I was just pooping them out whole. Now I am on Entocort and I don't know if it is helping or not. I just wanted to say Hi to my new friends. Thanks for posting and making others feel accepted.

 

[Adam1971]

Hi Brokenbelly-

I hope you find much support and info here on the forum. Welcome.

 

[SarahBear]

Welcome to the forum!

Sorry to hear you're having a rough time, but hopefully things will improve for you soon! How long have you been taking the Entocort?

We're here if you need us!!

 

[CrohnsChicago]

Welcome to the forum. I'm glad you were able to find it.

You are definitely not alone here. I hope you are able to find the support you need through us

 

[Brokenbelly]

This is the third week for the Entocort. It seems to help somewhat. Before I would eat supper and the be very sick within two hours. Now a can go a day or two feeling pretty good. By the third day I am sooo sick. The day is spent in the bathroom going as many as 15 times. The good days are great but the bad days are worse then before. I don,t know if the good days will keep increasing. I called my GI on Monday but have not heard back. The muscle relaxers for the pain don't really help. I quess the pain is my biggest complaint.

 

[David]

Hi Brokenbelly and welcome to the community. Some questions:

1. How severe was your inflammation determined to be?
2. Did they see any narrowing in your intestines?
3. Where is your disease located? Just the small intestine? Just the large intestine? Both? Or?
4. Has your doctor brought up any other treatments that they plan to use in addition to, and eventually instead of the Entocort?

Again, welcome! You are indeed not alone.