so confused..."active" colitis??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 2/26/2008 11:56 AM (GMT -6)   
So went in today to see the doc who did my colonoscopy, and he told me according to my biopsies I have "active" colitis from my rectum part way up the left side, and they don't think it's chronic since this is the first time it's cropped up (i'm 31).  I am soooo freakin' confused.  So do I have it or not?  He was in and out of the room so quick I didn't have time to ask questions.  He told me to just eat more fiber and pop some imodium.  I cried the whole way home.  I feel like I was pushed out the door with no answers.  HELP!
 
Also, they did stool samples and blood work with all came back negative for pathogens...also, this doc is a general surgeon not a GI...

Post Edited (MathGeek) : 2/26/2008 10:04:35 AM (GMT-7)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 2/26/2008 12:53 PM (GMT -6)   
I feel like the surgeon should have referred you to a GI. Your case sounds similar to mine when I was first diagnosed. My first colonoscopy was done by a general surgeon, he told me it looked like I had UC and the biopsies came back as "active colitis," but he still told me he thought it was UC. So, of course I was very confused by this...he did refer me to a GI and the GI was confused by the "active colitis" finding, too. However, my second GI told me it probably came back as active because I had just gotten it...it didn't yet look chronic, if that makes sense. But, even if you don't have chronic colitis (UC), I would think they would put you on some sort of medicine to clear up your active colitis. I think you should call the surgeon back and ask all these questions and ask to be referred to a GI. I hate when they push you out the door with no answers...has happened to me many times. Good luck!
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 2/26/2008 2:38 PM (GMT -6)   
Thanks for the reply, I'm a little calmer now and put in a call to my general doc asking for a referral to a GI doc.  He wanted me to see a GI in the first place, but the wait was forever.  Let's hope the wait will be shorter now that I actually have the colonoscopy done.  *crosses fingers* 
 
I really feel miserable right now and just want to be able to make through a full day of work without dashing to the bathroom during class (I'm a teacher). 
 
And does anyone know, how long is it supposed to take imodium to kick in?  I mean if it's going to work?

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/26/2008 6:05 PM (GMT -6)   
"Active colitis" just means you have inflammation in the colon when the biopsies are done. It doesn't say anything about what's causing the inflammation. There are other things that can cause it besides UC, and the only thing that has been ruled out so far is infectious causes.

You definitely need to see a GI soon. If you do have UC, Imodium needs to be used very carefully. And yes, they normally do put people on medication right away, so an oral 5-ASA such as Asacol or Colazal and a rectal med such as Rowasa or a steroid is usually started right away. Try to get a copy of the C-scope report from the surgeon's office to take with you to the GI, but be prepared for the fact that he or she may want to take a look themselves to be sure what they're dealing with.

Sounds as if the surgeon isn't very knowledgeable about IBD. His "not chronic" statement makes me suspect he thinks you don't have UC because it starts during late adolescence or early adulthood. That would be good thinking IF IT WERE TRUE.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 2/26/2008 6:05 PM (GMT -6)   
I am glad you put a call in to your general doctor. If you explain your symptoms to your doctor, maybe they can try to get you in to a GI sooner than the typical wait. You can also be asked to be placed on a cancellation list. I was lucky and the surgeon who did my c-scope got me in to see a GI a week after my follow-up appt. with him.

I'm so sorry you're having to deal with all this. It must be miserable having to deal with it while at school.

I don't know the answer to your immodium question because I've never used it, but I would suspect it would only take about an hour or two, like most over-the-counter meds. Hopefully, someone else will come along and answer that for you.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 2/28/2008 1:51 PM (GMT -6)   
Ok, so I got an appointment with a GI next week so I'm glad I don't have to wait too long. I did try taking the imodium like the general surgeon wanted me to and all it did was bring on huge amounts of pain, so out with that idea. The only real change I've had is the blood isn't there all the time now, maybe once a day. And mostly when I drink milk (so that's out now too). I'm wondering, do flares ever go away on their own? I'm still exhausted most of the time, and nap whenever I can (which isn't often) and have been able to make it through the school day be not eating until I get home.

What can I expect to hear at the GI's? Do you think she'll want to do her own colonoscopy?

Thanks for all the replies, it really helps to know I'm not alone!

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/28/2008 6:21 PM (GMT -6)   
It's likely she may want to do her own scope, rather than trust another's observations. Be sure to tell her about the milk, because people with UC have a higher likelihood of lactose intolerance. She'll push on your belly and ask if it hurts, and ask you about other illnesses you've had. Be sure to take a list of any medications you take regularly. Sometimes it's hard to remember things when you feel time pressure, such as in a doctor's office. So also take a list of the questions you want to have answered.

I'm glad you were able to get in quickly, MathGeek. Surgeons are indispensible for what they do, but sometimes when you go to see them, they're looking to see if you need surgery, and if not, they just drop you like a bad blind date.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


MathGeek
Regular Member


Date Joined Feb 2008
Total Posts : 23
   Posted 3/5/2008 5:50 PM (GMT -6)   
Ok, so finally got some answers!! The GI doc was appalled at what the surgeon told me! And said no-no to the imodium (which I only tried once because the surgeon told me to). He took the pictures of the scope, so no need to do his own. He was disappointed in the lack of info on the colonoscopy report but did a lot of staring at the pics. He put me on Asacol and Rowasa and I'm supposed to call in 2 weeks to let them know if my erythema nodusm (bumps on my legs) are gone. He said they are linked to the UC. If not a quick burst of prednisone. So I finally feel like someone listened and now I'm actually going to get some treatment! :)

They also took blood for: Comprehensive Metobolic Panel, CBC with platelet and a c-Reactive Protein.

Any idea what they're looking for?

Thanks again for the replies!!

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 3/5/2008 5:55 PM (GMT -6)   
That's great you are getting the necessary treatment now.

Here is a helpful Web site that explains what various lab tests, including the ones you asked about, test for:
http://www.labtestsonline.org/understanding/analytes/crp/glance.html
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 3/5/2008 9:27 PM (GMT -6)   
Your situation sounds very similar to mine, except I lost 50 lbs & didn't have much blood or D, just frequency (but I have been on pain meds, so maybe that firmed me up.) I went to a general surgeon for a c-scope after they thought I had colon cancer & he found ulcers in my colon, said it was mild & the biopsy came back active colitis too. The surgeon said I didn't have UC, and I was so glad. I was told it would probably clear up in a month of azulfidine. After the month, I lost more weight & got much more sick. Bugged my PCP, who later told me she was "hoping" it wasn't IBD. I ended up pushing to see a GI who once she saw me said I FOR SURE had IBD, she just wasn't sure which. (I personally think it's CD, but that's just my own opinion.) She was disappointed in my colonoscopy, too. She did say that my report had "crypt distortion" which means IBD, I guess. Grrr.... Why they couldn't have figured this out way back in October, I don't know. I am sure glad you didn't have the waiting I did. I still don't have a concrete dx or UC or CD. Instead, I am scheduled for ANOTHER colonscopy! (GI wants to look herself & needs biopsies & a look at my cecum & ileum because the general surgeon didn't go there but that is where my problem is showing on the small bowel series.) Be thankful you don't have to repeat the scope, it's such a bummer.

I don't have problems with milk. You need to look into lactose intolerance, that could be a big part of your problem. You should be tested for celiac also.

Don't be surprised if you have to do a small bowel series, too.

Watch the fiber, too. I am on a low-residue, low-fiber diet right now. It's no fun, but I was told once the inflammation goes down then I can re-introduce foods to see how they react with my guts.

I had a quick burst of prednisone, but it didn't work for me, so now I am on it for at least 6-8 weeks, which I am very bummed about. Be very glad that they have started you on good treatment, it seems that finding the right meds is the biggest hurdle to jump with IBD.

Keep us posted. I am very interested in your story as it has similarities to my own. Kindred spirit!! ; )

PS-I'm 33.
Live for today, for tomorrow you might just get hit by a semi.

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 2:12 PM (GMT -6)
There are a total of 3,006,518 posts in 329,346 threads.
View Active Threads


Who's Online
This forum has 161836 registered members. Please welcome our newest member, princesspoopsalot.
309 Guest(s), 16 Registered Member(s) are currently online.  Details
bobmars, HeartsinPain, mattamx, PeterDisAbelard., tickbite666, Andrina, sebreg, zack36, Hibee, ks1905, InTheShop, Envsciguy, princesspoopsalot, Bubbatc, Jemyl, AUniqueName18