Can't figure out the problem ("post"-UC)

I was diagnosed with UC in 2012 and had the usual symptoms (frequent trips to the bathroom, blood and mucus in my stools). I tried Lialda, Entivio, Humira, prednisone. A couple of years later I started to feel more intense pain on my left side of the colon. Now, I have the opposite problem: constipation and sometimes normal BMs. However, the pain has reached 8-10 on the pain scale. I usually have it several times a day. It lasts between 0.5 - 1.5 hrs at a time. It seems to happen when my colon is trying to pass stool. My pathology tests and colonoscopy show that I don't have inflammation. My doctor says he doesn't see signs of UC or scarring. I've been to a couple of doctors already but they can't figure out what's causing the agonizing pain. I was thinking it could be some kind of nerve damage. If any one has any ideas or theories about what it could be, I would love to hear your thoughts. I'm still researching and also looking for a gastro who can help me figure this out.

So, in summary, my current symptoms are:

--intense pain on the left and right side of the colon
--constipation (usually)

Pain is mostly the bottom part of the descending colon and, sometimes, the beginning of the ascending colon.

Katherine- you sound very similar to me! I have a constant pain in my rectum/sigmoid. I had chronic inflammation there but have been in a very stable remission for almost 6 months now. Been scoped 3 times to be sure. My gi says ibs or nerve damage as a previous poster stated. I do believe in ibs. More along the lines of your gut being out of whack kind of condition. I get it with stress.

As for constipation I take benefiiber. A tablespoon with cold water in the morning and one at night (if needed). Helps so much and is nothing like psyllium.

What meds are you on now? Sometimes I wonder if my aches and pains have to do with what I'm on. And the time of the month for me as I have issues with my cycle after my second baby.

shot in the dark - any chance this could be ovarian pain?

KatherineH said...
Thank you everyone for your replies.

Jane974: I rarely pass gas ever since I started having constipation. I've tried to eat more veggies for fiber. But my constipation is occasional and secondary to the pain. And yes, I do have the same level of pain even when I'm not constipated. Yes, I agree that the tests and scope may not show low grade inflammation. I had the tests done 4 months ago; have had these symptoms for much longer. Thanks for your suggestion about the SSRIs! That sounds very promising. I'm willing to try anything at this point! Did you take the SSRIs yourself and just come across information about it? I am not on any meds right now. Just got off prednisone.

TotesMagotes: I'll try the Benefiber. I always thought IBS was too a general condition to be useful as a diagnosis, but now I'm thinking that is exactly what I have.

kazbern: I see why you mentioned ovarian pain since the locations of the ovaries match up exactly with the pain spots in my colon (I had to Google it). I had an ultrasound and didn't see any abnormalities in that region. However, I'll keep that in the back of my mind for future reference!

low doses of SSRI's, tricyclic antidepressants, and antispasmodics are often used for abdominal pain, particularly for IBS. I haven't tried any myself, but they are often recommended by GI docs and pain management specialists for abdominal pain. I have a lot of abdominal pain so I did a lot of research on the common meds that are useful.

I just wanted to post a follow-up to my original post. I found the source of the mystery pain. After doing lots of research online, I suspected adhesions as a possible culprit. Both my gynecologist and gastroenterologist said this was possible, but low on their list of possible sources of the problem. Of course, there was only one way to find out--surgery. I had recurring fibroids in my uterus, and the latest ultrasound and CAT scan showed that they had grown large again. So I decided to have to them removed in case they were the cause of the pain and also to see if I had adhesions. Well, during surgery, my gynecologist found that she could not even get to my uterus as I had thick adhesions everywhere. She had to call in a general surgeon to remove the adhesions before she could get to the fibroids. It's been about 8 months since the surgery, and the pain is gone. I'm not completely pain-free as I have residual issues with my colon, but it's nowhere near what it was like before where I was experiencing excruciating, debilitating pain all day long. I believe that the adhesions were constricting my colon which made any sort of activity in that region very painful. I have read that adhesions are a very common but underdiagnosed source of pain and health issues. I'm just putting this out there in case there is anyone who's experiencing something similar. (And yes, the fibroids could have been part of the cause of the pain, but having experienced pain from fibroids before, the pain I had last time was different.)

Thanks, Sara14! It was truly miraculous.

Thanks! Yes, I had two myomectomies one after the other for my fibroids about three years before I started developing UC symptoms. My first myomectomy was an unnecessarily long surgery because it was done laparoscopically, and my theory is it caused a lot of adhesions because they kept messing around in there. I had to have a second one the traditional way just a few months later because they couldn't take out all the fibroids the first time. I hope the adhesions do not return. I'm doing all I can to prevent them from returning.