Chronic pain

Hello,
I first want to say thank you for all the information that you all share on this forum. I've read tons but only posted (I think) one other time. I was diagnosed w/ UC in 2005; it has been a relatively mild ride so far, w/ just a few minor flares. I have only ever taken colazal and the occasional suppository. Last year about this time I was hit w/ a bout of diverticulitis which scared the crap out of me and since then, my colon hasn't been the same. I began VSL#3, vitamin D supplements, increased H2O, and watch what I eat pretty closely--very low residue for a long time, but found a good balance and have looked recently into going gluten-free or trying SCD; still trying to make a decision about that.

My biggest issue is pain. Since the diverticulitis last year, I have never really been 100% pain free. After the initial diagnosis, I got a follow-up ct scan that showed it was resolving, then did a second round of antibiotics. Every so often I have flare-ups of pain, and it's hard to tell if it's UC or divertic related. Or neither. It's never severe pain, and it can change in location and nature from one day to the next, and then I can go weeks pretty much pain free. Got scared again in January and went to the ER, but no sign of infection. Just pain. No bleeding either. Movements pretty normal for me, although maybe not for a "normal" person's colon, if that makes sense.

So, I call the nurse at my GI again today to tell her about the pain, and my doc puts me on flagyl and cipro just in case it's another bout of divertic. Here's the thing--I can't have a CT scan every time I'm in pain--that's a boat load of radiation. And, it doesn't really look or act like UC, w/ no bleeding or other typical UC symptoms. I do have some back/hip pain, and a stabby rectal/almost vaginal pain too. Has anyone experienced this? To top it off, I have had 4 pelvic surgeries for endometriosis, including a total hyterectomy. SO there's a lot of "stuff" going on down there. I just don't know what to do--it's not horrible pain or increasing pain, but it definitely keeps me from doing things. I fear another infection,and I think that fear prevents me from doing things, between the UC and the diverticulitis. Maybe I just needed to vent--I hate having the pain, but the fear sucks too, and it's interfering w/ my daily life.

Thanks for letting me rant and I'm glad I found this forum, although so sorry we all have to be here. At least we're not alone I suppose.

Chinamom

 Hi Chinamomto2,

  Just want to share that my situation was a reversal of yours: diverticulitis bouts, then, UC diagnosis. It's such a long story over a period of years and multiple doctors; but basically, I lived on cipro or biaxin along with flagyl off and on from what was diagnosed as diverticultosis (& itis from time to time) which came after years of IBS diagnosis (after gallbladder surgery & 2 years of prilosec from gerd), a nissan fundoplication to prevent barrett's esophagus & repair a hiatal hernia. Ironically, the later surgery landed me back in the hospital from dehydration, heaving uncontrollably, being spoon fed the two drugs mentioned above in pudding, and that's what started the diverticular bouts.  As a teacher, I had a 7th grade student going through similar issues after a Nissan fundoplication, too! 

  Anyway, the pain was exactly as you describe.  Mine was always left side pain, chills and fever (even what they call rigors), unable to eat except liquids, fatigue, weakness, and these bouts were milder to begin with and got worse and worse over years. often dibilitating me for 3 days to a week.  I've experienced some A--es as GI's, who just wrote it off and were not compassionate or understanding. I shopped around for the right GI.

    Colonoscopies, barium endoscopies, & CT scans showed polyps, diverticular pouches, some gastritis but not the itis, and not UC until last year.  Went through many GI's and many tests over and over--nothing helped over time just short term.  This all began in 96.  The UC diagnosis did not come until April 11 with a new GI, who said, "You've had this for a LONG time!"  Then, he, too, was non-caring when the tests were done.  I changed AGAIN and found one who is compassionate!

    I don't understand what took so long to figure this thing out! One thing I do know is that before the UC diagnosis, the antibiotics helped the diverticular symptoms but sent my colon into a viscious cycle that made my life purely unpredictable.  Had to leave the classroom looking for other aspects of education and now have to face NEW people in new schools who do not understand what I'm going through--not that I want them to get into my personal business; however, functioning is impossible on flaring days! I am facing changes in jobs AGAIN because of my UC. Keep trying to find an aspect that I can do without being dysfunctional. Trying to find remission to keep a job after teaching for 17 years--need to keep insurance, especially with this disease. (Sorry to vent, too.)

    I am just learning about this forum, but believe that hearing from the folks on this forum makes me understand so much more than even the doctors can tell me.  Experiencing these bits and pieces from each contributor allows me to know that I'm not the only one out there. NOT that I'd wish this on anyone but I'm so sick of people telling me, "I do that, too; it's IBS." People have no idea what this is like.  I do have the benefit of a caring, understanding HUSBAND who has seen me through it all. 

    Oh well,  I hope by sharing and becoming more knowledgeable that I can find ways to make my life better and find remission somehow.  Just to go one full week without a flareup is a blessing to me but that hasn't happened in so long! I tried SCD for a short time, which was difficult for me, but gluten-free seems to have helped more than anything.  I haven't tried VSL3 but have tried probiotics of various types, including the not-so-reliable yogurts. I have lots of trigger foods, but even the good foods do not keep away my flare-ups.  I hope that things improve for you, Chinamomto2, but I hope you don't experience the damage the antibiotics seemed to cause me, such as with upsetting the good bacteria in the colon.  Seems there are a lot of knowledgeable people on here, so hopefully, we can learn from them. Good luck and hope you feel better. 

  Rotating heat, ice, while taking hyosycamine / clidinium (sp?) helped my pain somewhat. For the most part, I have NO pain free days. After being placed on prednisone again (this time for Bell's Palsy), I actually awakened one morning this week w/o pain in my colon. I couldn't believe it!  Short-lived though when a flare-up began today. Pain back again but bleeding not so bad.

   The dilemma in knowing which it is UC or Diverticular pain is a difficult one.  Good luck to you!

Thanks for the replies!

Kazbern, I do wonder if/how much of my chronic pain could be non-colon related.  I suffered w/ chronic pelvic pain for years before my hyst. and then had a couple of blissfully non-painful years.  Part of me ALMOST wouldn't mind if a surgeon went in there and took a look. I'm afraid I'd wake up minus a colon though.

Sunny76-Thank you so much for sharing your story.  I am a teacher, too, so I worry about how all of this will affect me. So far I've been ok, but I really need to find a new position and I worry about the stress of a new job and having to explain my condition.  I'm afraid I'm passing up opportunities because of this, which makes me sad. 

Sherry and Sunny 76-If you don't mind my asking, have you ever been given advice about possible surgery for the diverticulitis?  My GI guy says PREVENT the need for surgery-he feels it wouldn't be possible w/ the UC to just take the colon affected w/ diverticulitis, but two surgeons felt like they COULD just take the sigmoid.  Neither surgeon felt like surgery was necessary after my first bout.

So sorry we all have to deal w/ all of this, so GLAD that I can talk about it w/ you all.

Chinamom

On the surgery issue for diverticular pouches, mine are only 3 or 4 which cause issues.  Surgery is not an option for me, but if it were mentioned, I would hold off as long as possible.