Finally Got An Official Diagnosis of Crohn's

[BrennieJoyce]

I finally got a diagnosis of Crohn's last month, but I know for a fact that I've had it for probably 20 years. I don't know why my doctors couldn't diagnose me correctly before. Either they were incompetent or they were trying to cut costs and not do the expensive tests to see what was wrong with me. Anyway, I had a colonoscopy last month and they finally diagnosed me with Crohn's. I've had stomach problems all my adult life and they were getting worse and worse. Initially, my GI doctor put me on prednisone and Lialda. Well, the prednisone took away the Crohn's symptoms, but I ended up in the ER because of the side effects. I thought I was having a heart attack. So, he weaned me off the Prednisone, but the Crohn's symptoms came back, with a vengeance. So today he put me on Entocort and if the blood tests come back ok, I will start on Imuran. I can only guess that they didn't put me on the Entocort immediately because it looks like it's an extremely expensive drug. I'm sorry if I sound bitter, but I'm so tired of the medical community trying out the least expensive ways first of treating my condition. But I guess I should be grateful that they are at least treating me, at last! The doctor told me if these drugs don't help they will put me on the Biologics, which would either be Humira or Remicade. I just want to have a normal life again. I used to hike and camp, I belonged to a gym and I had a great job that I loved. Because of this disease, I had to quit working, and a walk around the block is about all I can do now, if that. I can't go on trips easily and nine times out of 10 I have to cancel a dinner or lunch that I planned to have with a friend, because I'm too sick to go. I saw this forum and thought it would be great to talk to other people who know what I'm going through, because my family and friends are also having a hard time supporting me, especially my husband. He is very healthy and has a very hard time understanding my disease, and he is also very angry with my doctors for taking so long to figure out what was wrong with me. Anyway, I'm really looking forward to meeting other people with Crohn's!

 

[teeny5]

So glad you finally got a diagnosis! Hope this is a sign of better times to come now that they know what they are treating. Sorry to hear your family and friends are having trouble understanding what you are going through and not being supportive. I have seen some good basic overviews of the disease and how it affects the body that might help them understand. Here are a couple:

http://thecrohnsjourneyfoundation.org/infographic/
http://www.healthcentral.com/ibd/c/458275/164556/disease-affects-infographic/
http://www.crohnsandme.com/crohns-information/what-is-crohns.aspx

I have had it for 7 years and still have to explain it to people over and over. Lots of info and support on this forum.

 

[BrennieJoyce]

Thank you, Teeny5, for the links! This is very good information. And maybe I can get my husband to read some of it!

 

[4Seasons]

Glad that you finally got a Dx, but it stinks that Crohn's and UC patients struggle for months, often years for the proper Dx. Because you do in fact have Crohn's, Lialda would never have worked, as it cannot be absorbed in the small bowel, only in the colon. I was given a UC Dx 10 years ago, and my doctor took me off of Pentasa in favor of Lialda, and my symptoms got worse. I also had ulceration at the beginning of my large intestine, which makes me wonder if I in fact have Crohn's, even though I can't get a Gastro to confirm it.

 

[Caitlin84]

Hopefully with an official diagnosis you will start getting treatment that works for you. It is possible to live a pretty 'normal' life with Crohn's for some of us. Hopefully that will be you too. Know that you are definitely not alone out there.

 

[MyEnemy52]

Hi BrennieJoyce,
I'm new here also just joined yesterday, one the worse problems with having this Horrible disease was having to explain over and over again why I can't commit to anything on Monday for something going on on Saturday, even after having 18" of my small intestines removed Aug,1 2011 and being on Humira for three years after, people didn't or wouldn't accept it, I've stopped contact with 95% of people I've known for years (my choice), pissed a lot of people off but had to do what's best for me, right now I'm going thru the tail end (I hope) of the worst flare up I've had since 2011 surgery, made appointment for next Tuesday with GI, for me stopping communication altogether worked for me, my phone doesn't ring 20 times a week anymore, I was at the point where I was going to have to start lying why I was afraid to commit to this or that, try to hang on to people you know really care, it's easy to tell who's who! I know where your coming from, nothing showed up on the Cat-Scan,endoscopy or colonoscopy, it wasn't until the Pill Cam got stuck is when Crohn's showed it's Ugly Head back in 2011!! I wish you good luck with everything!!

 

[BrennieJoyce]

Hi BrennieJoyce,
I'm new here also just joined yesterday, one the worse problems with having this Horrible disease was having to explain over and over again why I can't commit to anything on Monday for something going on on Saturday, even after having 18" of my small intestines removed Aug,1 2011 and being on Humira for three years after, people didn't or wouldn't accept it, I've stopped contact with 95% of people I've known for years (my choice), pissed a lot of people off but had to do what's best for me, right now I'm going thru the tail end (I hope) of the worst flare up I've had since 2011 surgery, made appointment for next Tuesday with GI, for me stopping communication altogether worked for me, my phone doesn't ring 20 times a week anymore, I was at the point where I was going to have to start lying why I was afraid to commit to this or that, try to hang on to people you know really care, it's easy to tell who's who! I know where your coming from, nothing showed up on the Cat-Scan,endoscopy or colonoscopy, it wasn't until the Pill Cam got stuck is when Crohn's showed it's Ugly Head back in 2011!! I wish you good luck with everything!!

Sorry it's taken me a while to come back to the forum. I hope you have had better luck since your post. I just had foot surgery and also had a severe Crohn's flare. As for friends, I really only have one friend now, who is also very ill. We are each other's support group. Funny how you find out who your real friends are when you get really sick, huh?

 

[MyEnemy52]

I think the problem I had with everyone including family was that I have a hard time complaining about anything, even when I'm at a Doctor's appointment It's like I freeze up when I really need to relate what's happening, enough of this He-Man stuff, I had a really physical Job for 25 years and would never ask or let anyone help with me with anything (unless I really needed it and eventually did), have a Great rep. as a worker and a friend that would always be there to help, it's ashame I didn't get the same when I needed it the most, funny how that works !

 

[BrennieJoyce]

Yes, I know what you mean! I always feel like I am just bitching when the doctor asks me what's going on. But it's really important to let them know exactly how you're feeling. I was always the "go to" person at work for any problems, and I was always so proud of that. I was called the backbone of the organization. But because of Crohn's, I had to retire early, and now I feel like an invalid. All my so called friends at work slowly dropped off. But I've been told that it's no good to look into the past and feel bad about it, you just have to look towards the future. So now my main focus is just trying to get better and try to lead at least a kind of normal life.