Newly Diagnosed

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Nov 21, 2011
Messages
12
Hello Everyone,

I just want to start of by saying that some of the threads in this forum have helped me realize that I am not the only one to have gone through the hoops and hurdles trying to figure out what is going on.

I have been dealing with digestive issues all my life. Although, it was not bad enough to see a Dr. so I was not to worried about it. About 3 years ago I got pregnant with my first child. My daughter was born in January 2010. The day after giving birth to her I started noticing stomach pains. After everything that I ate or drank I would buckle in pain. I thought it would go away. Well it didn't. Over the next year I was in and out of the Dr.'s office each time them telling me it was either irritable bowel syndrome or acid re flux, and then trying every prescription under the sun for IBS. During that first year I ended up having all kinds of blood work, an EGD and a colonoscopy. All resulted in no results. I was loosing weight, all of my clothes were falling off, I felt exhausted all the time, I felt weak, dizzy and I was starving. I started thinking it was all in my head, or was just the postpartum depression. So the Dr. prescribed an anti-depressant.

Over the next year I tried cutting out dairy, gluten and taking my anti-depressant. Which didn't work... at all. I asked my Dr.to run some more blood work which ruled out Crohn's disease and Celiac's disease. I was at a loss, my relationship with my husband was strained and I felt like I had missed a lot with my daughter. One day I ended up in the bathroom for the millionth time, but this time there was a lot of blood. I called my Dr. and he suggested we do another colonoscopy and EGD as soon as possible. My husband was out of town so I was a little hesitant, but did it anyway. While I was still a little groggy the Dr. came to show me the pictures that he took during the procedure. He pointed out the ulcers all throughout my small and large intestines and said they are usually associated with Crohn's. I wanted to cry, I felt so alone. I met with him the next day to go over the pathology report. Hi instincts were right, I had Crohn's. My Dr. prescribed Asocol, and after being on the medication for 2 weeks I didn't notice a difference in how I felt. I had already been on prednisone for something else, so we knew that was not going to work. So I was put on Entocort ED 3mg. I have been on this combination of meds for about 2 weeks and thought it was working. I think I got my hopes up a little to soon. I know this does not even cover everything, but just had to introduce myself and tell a little about my journey to diagnosis.

After reading some of the other threads I don't feel like I have gone through near the feat some of you have, but it is nice to know that I am not alone.

Thanks for listening and I am looking forward to learning all I can and hopefully helping some others as well.

Thank you
Diagnosed with Crohns, October 2011
 
Hi!

It's funny how you think you're suffering and its the end of the world until you read about/ meet someone with the exact same problem as yours but a 100 times worse. That's how I felt when i joined the forum! One thing is for sure, there are a bunch of extremely nice people on this website that you can write to for help, and the best part is, they're supremely nice and patient despite crohns! ( i know how nasty i can get when theres a flare up)

I guess what I'm trying to say is -Welcome!! =D!
 
Hello and welcome to the forum! I'm so glad for you that you were finally diagnosed. It must've been terrible to go for so long not knowing. I hope your relationship with your husband improves now that people can see that it's not in your head. That's too much to deal with on your own. :hug:

Have you been on prednisone long-term? How many mgs do you take? I was on a 6 week taper, starting at 60mgs. It certainly did the trick for me, but if your body is used to the drug, it loses its efficacy. Do you have any upsetting side effects from it? We have a great "dump-site" for thoughts and feelings from or about prednisone here. http://www.crohnsforum.com/forumdisplay.php?f=80

It's great to have you here. I hope you stick around and make this place a home away from home, like I did. :)
 
Jessi, I was on prednisone twice both times a quick tapper starting at 60 mg. I was on it for a chronic sinus infection and I did not notice a difference in my pain. I have been taking asocol and entocort for about 3 weeks and I thought it was working but now I'm getting pains back.
 
I'm sorry about your pains. Unfortunately, one of the side effects of Asacol is abdominal cramping. Have you spoken to your doctor about the pains coming back? Are your other symptoms under control? :hang:
 
Greetings and welcome :) I'm so glad you found your way here.
My Dr. prescribed Asocol, and after being on the medication for 2 weeks I didn't notice a difference in how I felt. I had already been on prednisone for something else, so we knew that was not going to work. So I was put on Entocort ED 3mg.
Your doctor seems to be taking a rather conservative approach. A few questions/comments:

1. Is your doctor a gastroenterologist (GI)? Are you under the care of a GI?

2. The manufacturer suggested dosage of Entocort is 9mg. With your symptoms, I'm a little surprised that 9mg wouldn't be prescribed. Maybe because you're on the Asacol as well? Or are you taking three of the 3mg per day?

3. Have you had any vitamin and mineral levels such as vitamin B12, iron, and vitamin D checked?

There is a tremendous amount of valuable information here. And we're here for you anytime :)

I wish you all the best!
 
Welcome, good luck, and listen to the advice of the experienced. I too am newly diagnosed and have had many question and suggestions offered.
 
David,

1. Is your doctor a gastroenterologist (GI)? Are you under the care of a GI?
My primary is not, but I do have a GI that diagnosed me, although I don't get to see him very often.

2. The manufacturer suggested dosage of Entocort is 9mg. With your symptoms, I'm a little surprised that 9mg wouldn't be prescribed. Maybe because you're on the Asacol as well? Or are you taking three of the 3mg per day?
I am on Asacol and entocort 3mg but 3 pills... should have specified a little more. 9 mg a day.

3. Have you had any vitamin and mineral levels such as vitamin B12, iron, and vitamin D checked?
I did get my vitamin levels checked and because Washington hardly has any sun... my Vitamin D is low as well as my Iron
 
My primary is not, but I do have a GI that diagnosed me, although I don't get to see him very often.
If you don't feel your current meds are working well, I'd get in to see your GI and discuss how you feel with him/her.

I did get my vitamin levels checked and because Washington hardly has any sun... my Vitamin D is low as well as my Iron
Are you supplementing your vitamin D? Here is a great thread about vitamin D you may want to read. Have you had your vitamin B12 levels checked? If not I'd request that next appointment as Crohnies are often deficient.

Please keep us updated :)
 
david,

I have not been supplementing my Vitamin D like i should or my iron. I asked my dr. to check my B12 and i also meet with him Friday because the combination of Asacol and Entocort dont seem to be working. So we are going to discuss other options. I will keep posting as i know more
 
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