UC x 22 years, new findings on colonoscopy today and worried....

Hi guys, I've been a member here for a few years, but rarely post.  A little history about me - I was diagnosed with UC at 16 years old (22 years ago).  Have had approx. 11 colonoscopys since then.  Most of which came out normal, other than active UC.

My last colonoscopy was back in September, 2008.  Came back beautiful (no active lesions) but underlying UC was detected in about 10 of the 20 biopsies.  still, good news.

18 months later, I had my next colonoscopy.  Today, my doctor found a 2mm polyp just inside my rectum, and he also found a diverticulum in my sigmoid colon.  These are brand new to me, as I have never had them before.  He told me that he removed the polyp and sent it off to pathology with the 18 biopsies he took during the colonoscopy. 

He told me I would be contacted within 2 weeks with the results, but I am like a nervous wreck, and I have a few questions that I wasn't coherent enough to ask my doc while in recovery.

1) Are these new findings related to the UC? or are polyps and diverticulosis brand new things that I need to worry about?

2) Are these findings average for a 38 year old female?

3) Does this mean my disease is progressing?

More history..... Over the last two years, my symptoms have increased 10fold.  I used to average 2-3 flares per year, and that's up to 8-9.  I have been to my GP about 3 times this last year for symptoms that I had no idea were actually related to UC.  I have traveling pain in my joints, severe lower and upper back pain, "gouty" pain in the joint of my big toes, lesions on my arms that remain open, draining, crusting....repeat.

During the post surgery exam today, my gastro recommended that I see a RA specialist.  He said that my back pain is most likely due to Ankelosing Spondolitis (sp?) and he wants me to see a dermatologist about the open lesions onmy arms, although he said they ARE more than likely some of the bad side effects of UC. 

I know I've rambeled way too much, and I don't even know what questions I really want to ask.  I guess I'm just looking for any advice from people who are going through, or have experienced the level of treatment I'm looking to experience.

Thanks in advance,

Norma

 

Hi Norma -
I would the diverticulosis is likely not UC-related but just.... diverticulosis. I could be way off here - but I hadn't heard of that as being a UC-related thing - just something many folks get.
The polyp.... likely, as well. I had 3 polyps some 18 years ago, and one was an adenoma, pre-cancerous. My GI explained to me at the time that the polyp-type cancer was not the kind of cancer we UCers are at particular risk for - again, polyps are more for "normal" folks.... but , end result, they snipped the polyp during colonoscopy and started me on yearly colonoscopies at that point.
And I haven't had any since.

My guess would be to agree with your doc, that the joint pain/back pain and skin sores are indeed UC-related, so it would be good to get them looked at. Your description of your increase in flares per year does sound as if the UC is becoming more active, whether the disease is "progressing" or whether your former meds just are losing effectiveness. Funny how that can creep up on us; I'll look back on a year with surprise and say, gosh, I really DID flare more than "normal"....!

I found myself in an odd position of GI shopping a year or so ago, and one GI told me - this disease does change; we can stay on the same course for a long time and know how to deal with it, but then, unfortunately, it changes and we might need to approach it with new meds, new thinking.

It was at that point that I realized that, thought I'd read everything I could find when I was first diagnosed, I hadn't kept up with new knowledge.... and in my searching I ended up here. I've learned so much!

What meds are you on... have you been on maintenance meds? It might just be that those need re-evaluating and you'll be feeling better.