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New user, 22 years old, indeterminate colitis?

AstridYam

AstridYam

Hi there. I'm Astrid, and I was "diagnosed" with IBD pretty much about a year ago. I say "diagnosed" because while all the specialists I've talked to seem very sure that it is a form of IBD, they don't seem to be able to come to a decision as to whether it's Crohn's, UC, or maybe something else. I think the way my current specialist described it is that it "looks like Crohn's" but is restricted to the lower intestine like UC? I'm not sure if I got that right. So for the moment, it's being called Indeterminate Colitis. If anyone else is in the same boat as me, I'd very much like to hear about it!

Honestly, this all came about VERY quickly. I'd never really have stomach problems that sounded any alarms (though looking back, maybe there were a couple signs). I just one day started having really intense, debilitating, stabbing pain in my lower abdomen that wouldn't go away, followed shortly by constant bowel movements and bloody stool. Two days later, I was in the ER, and two days after that, I was told I have IBD. My university's health system was a godsend I don't know where I'd be without it orz

Even though it's been a year since my diagnosis, I'm still really new at all this. I'm still trying to get out of the second flare-up of my life and I'm starting some new medication that's honestly kind of intimidating me (mercaptopurine). I'm hoping being on this forum will bring me some support and ease my mind. And, uh, yeah, thank you for reading!
 
ronroush7

ronroush7

I am sorry you have IBD. This is a really supportive group. I hope your doctor finds the right mixture of medicines for you. Please keep us updated.
 
Eridon2002

Eridon2002

Hi Astrid. Crohn's can be anywhere in you GI tract. Just because it's in the lower intestines is not the diagnostic marker for UC. My Crohn's has been limited(for now) to the descending colon. Treatment for UC and Crohn's is similar. You definitely want to get the inflammation under control so as to not permanently damage the intestines with scar tissue(which can lead to obstructions and surgery). I hope the new medication works for you! There are many on this board who take immune suppressors(like mercaptopurine) and its helped them greatly. I will be going on Imuran once my ileostomy reversal surgery is completed.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
Hi Astrid and welcome to the forum,
I was diagnosed at your age too with similar story, symptoms and diagnosis! Since diagnosis in 2001, I have been called Indeterminate colitis and sometimes UC-like Crohn's! Some patients remain in the indeterminate category for long time, and others can receive a clear diagnosis faster at second or third colonoscopy.Whether crohn's or UC, the medications are pretty much the same anyway.
I have disease mostly in my rectum and left colon. Just like you, my doctor started with mild medications (5-ASA, prednisone) in hope for remission in the first year or so.
Then after failure to maintain remission, the same medication your Gi is proposing was proposed to me: mercaptopurine (Purinethol). This medication works well for me. We just need to adjust the dosage sometimes depending on blood reports.

Feel free to ask any more questions :)
Wishing you well.
 
hcrum87hc

hcrum87hc

I was "diagnosed" with indeterminate colitis initially around 19 or 20. In June of 2014 (at the age of 27) I developed a partial obstruction due to strictures in my small intestines, which led to me being hospitalized and diagnosed with Crohns. As it turned out, the meds I had been on for 6 or 7 years (sulfasalazine) had not been working well, and the gradual inflammation over the years led to scar tissue, causing the strictures. I hate the fact that I didn't pursue the cramping more with my doctor at the time, as it could have led to me not developing my strictures. My advice would be to stay on top of your symptoms. If they appear to be worsening, or like my case, not improving immensely, let your doctors know so that they can get you on an effective regimen.
 
ronroush7

ronroush7

hcrum87hc said:
I was "diagnosed" with indeterminate colitis initially around 19 or 20. In June of 2014 (at the age of 27) I developed a partial obstruction due to strictures in my small intestines, which led to me being hospitalized and diagnosed with Crohns. As it turned out, the meds I had been on for 6 or 7 years (sulfasalazine) had not been working well, and the gradual inflammation over the years led to scar tissue, causing the strictures. I hate the fact that I didn't pursue the cramping more with my doctor at the time, as it could have led to me not developing my strictures. My advice would be to stay on top of your symptoms. If they appear to be worsening, or like my case, not improving immensely, let your doctors know so that they can get you on an effective regimen.
Click to expand...
Amen
 
teeny5

teeny5

I have the same diagnosis...looks like Crohn's, but listed as indeterminate colitis or sometimes just IBD. I have only had it in the large intestine, never any bleeding. I never thought I had digestive issues, but looking back I think I had signs...even went to urgent care as a child due to abdominal pain that they ruled wasn't appendicitis. My mom has digestive issues, though never was diagnosed with anything. She was tested for all kinds of auto-immune possibilities with no diagnosis. Other than Crohn's stuff I RARELY get sick. I mean no colds, no flu...just allergies from hell. My immune system is nuts!

Welcome to the forum! I don't know what I would have done had I not found this place.
 
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