Hello, I'm new here..

[CrohnsGrl212]

I came across this forum because I recently googled the life expectancy of someone with Crohn's disease. I read a few threads and saw that this was a very understanding community and decided to join. I was diagnosed in Dec 2012 with mild crohns disease. After much testing.. my GI concluded that I have been living with it for about 20 years now.
When I was officially diagnosed, I felt like I had been handed a "death sentence". It was a very difficult and emotional time for me. My dad was and is extremely supportive and I am so thankful for that. Most of my friends and family are, but sometimes they become frustrated and I know it's because they just don't understand and what I must look like through their eyes. Even though I have mild crohns and know it could be much worse... it still makes dating very difficult. I am 33 and live alone. Although they are few and far between, I get these wicked debilitating stomach pains. And the random inexplicable exhaustion. My newest symptoms are the facial acne that doesn't seem to change no matter what regiment I use, and my teeth. I feel like they are just going to pop out. I have tried mesalamine, but I am currently on Entocort/Budesonide 3mg. I also see a holisitc nutritionist who got her crohns in remission. I hope to be in a remission state as well one of these days.
Most days I try to stay positive and laugh and smile... and I'm usually pretty successful. But some days I just can't find my smile and I become scared all over again and very sad.
Thank you for listening to my very lengthy intro And I hope to learn more from each of your experiences and hope to get some good advice when I have questions. I also hope to be able to give helpful advice to you as well, if ever asked. I have done a lot of research on my own and am happy to share any information with all of you.

Have a Wonderful evening

 

[Jennifer]

Hi CrohnsGrl212 and welcome to the forum!

I'm sorry to hear about your current symptoms but hopefully all of those issues will go away once you're in remission and I hope that's soon. Have you had any blood work done recently to test your vitamin levels? Being deficient or even low in certain ones can bring on symptoms like fatigue etc. So if you haven't already try to have your Iron, B12, vit D, Magnesium, Potassium, folic acid, Calcium, Zinc etc tested.

You're on a pretty low dose of Entocort. Do you think its helping at all? Did you start at a higher dose? Also how long have you been taking it?

Also I think it would be great if you checked out the Success Stories on the forum: http://www.crohnsforum.com/forumdisplay.php?f=72
You can read through about how many members went into remission.

Take care and keep us posted on how you're doing.

 

[CrohnsGrl212]

Thank you Jennifer I take 1000mg of b12 daily.. but lately I have been taking 5000mg. Now that you mention it.. when I go see my Dr. in October, I am going to ask her to do some blood work and test my vitamin levels. Thanks for the input. I am on a low dose od entocort, and I am also going to ask her about raising it. I'm a little weary though.. I feel like my dr wants to shoot me straight to humira and I don't feel that I need it because my crohns is mild. I feel like maybe I'm just going through a rough flare right now, but normally my meds and vits seem to do the trick. I take a multi vitamin and multi digestive enzyme to help break the food down and help with the toxic gas! lol YUCK!

 

[Jennifer]

Since you were told that your case is "mild" you might want to read this: http://www.crohnsforum.com/showthread.php?t=51899

Honestly you want to be on steroids for as little amount of time as possible. They are meant short term only because they can cause a lot of damage over time. If you aren't comfortable with Humira just yet then you could talk to your GI about maybe 6MP or Imuran to try and get the inflammation under control and keep is away. You can still try the holistic route and experiment with diet etc while you treat with medication. Getting the inflammation down and gone the fastest way possible is most important so you don't have to deal with even more problems like fistulas, abscesses, strictures, surgery etc.

Many people have a hard time absorbing nutrients due to inflammation and scaring so often times taking oral supplements wont work. If your B12 is still low then you may need B12 injections. I get them every other month myself because I've had one surgery already that removed some of my ileum (B12 is absorbed in the TI). Some people have to get Iron or potassium etc infusions because they don't absorb it or they may be dealing with blood loss etc. I'm glad that you'll get your levels checked.

 

[wendyjames2]

Hi CrohnsGrl212! Just like you I am new to this forum. I also found it in Google when I decided to sit down and learn more about Chron. My dad was diagnosed with Chron and I am hoping to learning more about it so I could better understand him especially when he is in pain.

 

[CrohnsGrl212]

Hi wendyjames2! Welcome

I'm sorry to hear about your dad, but I think it's Awesome of you to take interest in what he's going through with this disease. The pain is one of my top 3 worst symptoms so far. Unfortunately all we can do is wait for it to subside. At least thats what I do. I don't know of any pain medication for crohns.

Is his case mild or severe?