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Crohn's Disease Forum » Your Story » I just got diagnosed


04-20-2017, 05:51 PM   #1
Catlover96
 
Join Date: Apr 2017

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I just got diagnosed

Hello everyone,
I just got diagnosed with crohns. I had a colonoscopy on Tuesday to see the extent and location. There is a spot in the descending colon and my terminal ileum is pretty badly inflamed. My doctor said a normal ileum is about the size of a half dollar and mine is closer to the size of a penny. He said he has to really push to get the scope through. 😨😨 he took three biopsies and I am waiting on the results.

I am scheduled for a upper GI fluoroscopy (?) with barium contrast. I am super nervous about it. 1.because I threw up during the colonoscopy prep (too much fluid at once) 2.I struggle with textures of things (I can't drink a milkshake without gagging) 3. I am worried that the amount of thickening I have in my ileum is going to cause the barium to back up.
Any advice?

I am also supposed to start budesonide.

I am college student and taking classes to become a paramedic which is a dream I am watching skip farther and farther away. Feeling very overwhelmed.
Also I ended up with Cdiff the end of March which thankfully went away with one round of flagyl but my intestines haven't been the same since.

It should be known that I named my colon Groot. The character from guardians of the galaxy that only says "I am Groot" with various inflections depending on the situation. It feels appropriate since my colon is trying to tell me what's wrong but not really explaining in a great way which leaves me guessing what it is trying to say.
I just needed something to laugh about, because if I don't laugh, I cry. And I am OVER crying.
04-20-2017, 06:26 PM   #2
Scipio
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Hi Catlover and welcome. The bad news is that you have just been diagnosed with a difficult and incurable disease. The good news is that there are a lot of treatment options to help you manage it and more coming along all the time.

Chances are good that you will notice some improvement thanks to the budesonide more or less right away - "right away" meaning within a week or two rather than the two months or more that some medicines take to kick in. But one thing you will hear over and over through the course of your various treatments is "everyone is different." No two people's Crohn's are exactly the same. What works great for most or some patients might fail miserably for others. The trick is to get your disease under control and find the right combination of drugs, diet, and lifestyle that permits you to live a more or less normal life and successfully pursue your career and other goals.

The budesonide (and other corticosteroids) should be viewed as a temporary measure to get your disease under control (remission induction phase) which will then be replaced by a long-term maintenance therapy - usually either an immunosuppressant or a biologic or both. I've had budesonide myself, and it worked pretty well. I did not have any side effects. But again, everyone is different.

Hopefully your ileal stricture will not require surgery, but you should be aware that it is a real possibility.

Keep us updated. You will find a very helpful and supportive community here.
04-20-2017, 06:28 PM   #3
ronroush7
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Welcome. I am sorry that you have Crohns Disease but you will find a lot of supportive people here. Feel free to come here and share anytime. I don't have any advice but I hope that you can have the test without any problem.
04-20-2017, 07:19 PM   #4
cmack
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Hi Catlover,

Welcome to the forum. We all support one another through the ups and downs. I think you will be OK with the barium. I hope so at least, It wasn't too bad when I had my imaging.

Welcome again, I'm sending my positive thoughts to you. Pm me if you need to talk.


Your new teammate,

cmack
04-20-2017, 11:24 PM   #5
dave13
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"No two people's Crohn's are exactly the same. What works great for most or some patients might fail miserably for others. The trick is to get your disease under control and find the right combination of drugs, diet, and lifestyle that permits you to live a more or less normal life and successfully pursue your career and other goals." Scipio says it well.
When I joined the forum I heard 'new normal' frequently. It is true,in my opinion. We may have to alter our lives from what we have known,but not abandon our goals.
Communicate with your GI,be honest,information is good. Ask all the angles...what if I don't do this?....what if I do?...what are my options?.
Oh...bring a book to appointments. Key in my opinion. You are sure to be next if you have a book and you just want to finish the chapter.
I hope all goes well.
__________________
"It does not do to dwell on dreams and forget to live."
05-03-2017, 10:45 AM   #6
san96
 
Join Date: May 2017
Location: Manchester, United Kingdom
"No two people's Crohn's are exactly the same. What works great for most or some patients might fail miserably for others. The trick is to get your disease under control and find the right combination of drugs, diet, and lifestyle that permits you to live a more or less normal life and successfully pursue your career and other goals."
This. It's all trial and error. Slowly start introducing foods back into your diet so you can identify more easily which things give you bad symptoms.
05-03-2017, 03:24 PM   #7
Jabee
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So I'm thinking your GI wants to see what is going on in your small intestine which is why you're having the upper GI. I'm going to assume you're getting a small bowel follow through since that can show inflammation and structures throughout the small intestine. I was in a lot of pain for my last one, so I didn't have to finish the barium, although because I suffer from constipation it took me six weeks to get it out of my system. I'm not sure, but you might be able to ask for the water based contrast rather than the barium. Check with your GI and explain about the gagging etc well before the test. That way he'll be able to make the request far enough in advance. The test itself is interesting, as they start you standing up and then tilt the table back to finish it. If you're having the follow through as well you'll have to wait until the contrast makes its way to the large intestine for them to finish taking x-rays. At mine I have also had to drink some sort of fizzing liquid through a straw (think alka seltzer) since it provides additional contrast to assess the area. The addition of air makes it a double contrast study. I hope it goes well.
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