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Newly diagnosed and so lost weeks till apt


Wed, August 18, 2021 1:11 PM

Hi. Last week I went from suspicion of colon cancer from a CT scan to a colonoscopy and diagnosed with crohns. I am waiting on biopsy results still as well. My GI just kinda said good news we don't think cancer looks like Crohns and here's a look at some pics. He then sent me home and said follow up in 2-4 weeks and we will get me on some meds.  I have an apt in Sept set up. Meanwhile I read the report and I have 5-6 ulcerative areas and a stricture. I'm terrified!! All I can find online are horror stories of what my life is about to become and I'm scared of that and the stricture (and my biopsy results still too). Is it normal they would send me home knowing a stricture is in there? Im so scared of it. I feel so abandoned and can't find any positive stories of people managing this well. Just horror stories. So far while I've had a bad stomach since in my 20s my main symptoms are pain wirh some lose stools at times. Is it just going to get worse no matter what and I'm looking at incontenance and bags no matter what? Is that how this always ends? 

FPO Sarahlitt
Joined Aug 17, 2021

Sat, August 21, 2021 6:19 AM

Reply posted for Sarahlitt.

Hi Sarah,

I was diagnosed with moderate to severe ulcerative colitis when I was 22. I also had many ulcers in my colon and had a tightening of my colon, which made life very painful. At one point I was in the hospital for an extended period of time with a flare that would not respond to anything. After finding a good GI, I was able get on the right medication (which I initially resisted). Since that time, I have had ups and downs (this is not something ever goes away completely), but I have been able to live somewhat normally. In fact, now I am studying in graduate school.

While everyone has a different journey and everyone’s severity is different, in many cases the condition can improve with a lot of trial and error. The most important thing to is to find a GI doctor you can trust and someone who will answer your questions and work with you to find a solution tailored to your individual situation. Again, there are many difficult situations, but I want to let you know there are also situations where you can put the disease into remission and live a life that seems impossible at the beginning of your diagnosis. If someone would have told me back then that I would actually have a life now, I would have never believed them. But there is hope through this journey and there is no definitive sentence.

 
Allison

FPO Allison
Joined Jul 24, 2021

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