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Posted 6/14/2013 4:44 PM (GMT 0)
Hello,

I'm a new member but have been using this site for vital information since I was diagnosed with Ulcerative Proctitis at the beginning of April of this year.  I have a question though.  I believe I'm in remission, the bleeding has stopped, however I'm still in pain and my bathroom trips are becoming more frequent.  My bowels are either loose and mushy or complete diarrhea.  This was not a symptom before diagnosis, I was really only having bleeding.  These symptoms are becoming far more regular and intense.  about 10 minutes after I eat I have to run to the bathroom.  My doctor has stated that he believes I have IBS.  I really am disinclined to believe this because it doesn't seem to be effected by any particular food.  When this first started happening I cut out dairy, sugar, gluen, and preservatives.  I now eat only organic fruits, veggies, and meats that I prepare myself with little to no oil or seasoning.  My symptoms haven't changed a bit since cutting all of this out of my diet.  Before I went on this strict diet I also tried the BRAT diet, no relief.  No matter what I do this seems to happen.  Is that really IBS or is this something completely different?

Posted 6/14/2013 4:52 PM (GMT 0)
This sounds like inflammatory disease, but the only way to really know is to do some testing, like bloodwork and/or scope. What are you using for maintenance meds?

It's possible that your inflammation has gone beyond the rectum and is causing these issues. Were you diagnosed by colonoscopy or flex sig?
Posted 6/14/2013 4:58 PM (GMT 0)
I was first diagnosed by full colonscopy April 1st, then I was continuting to have issues while being on Canasa Supps and my doctor did a flex sig on May 4th. He put me on a steroid supp, but I continued to get worse. I'm now back on Canasa 1000mg, and Liadla 1.2gm 4x daily. I saw a rhuematologist yesterday for joint pain and she thinks I should be on steroids so she put me on the 6 day pack of Methylprednisolone to see if that gives me any relief from the joint pain and frequent bathroom trips. I've wondered if my inflammation has spread but my doctor keeps saying it's IBS.
Posted 6/14/2013 4:59 PM (GMT 0)
Wouldn't I still be bleeding if my UC has spread?
Posted 6/14/2013 5:02 PM (GMT 0)
In my experience you can have inflammation without bleeding. Did the pathology from the colonoscopy confirm that the rectum was the only place with inflammation?

You might find that you get better results with a mesalamine enema instead of the Canasa. Canasa is a 1g dose whereas the enemas are 4g and cover the entire rectum and even treat the sigmoid colon.

What kind of joint pain are you having?

Another thing to consider is that you may have become lactose intolerant and/or developed a gluten intolerance, both of which are pretty common in people with IBD.

Posted 6/14/2013 5:08 PM (GMT 0)
I know he took biopsies during both but I believe he only took them in the rectum where he saw the ulceration and inflammation. Just to put it out there, I am seeing a new GI the second week of July because I need more answers than what my doctor is giving me. He seems hesitant to believe that any of my current symptoms are related to the Proctitis.

I started bleeding about 8 months before diagnosis and I started to have severe knee pain about 2 months prior to diagnosis. I workout regularly so I thought I had torn something but noticed the pain didn't get better with rest. The pain has now spread to my ankles, wrists, elbows, hips, and back as well. I'm only 25 so I know this isn't too common. The Rhuematologist did xrays on my knees and said they looked fine. She doesn't believe I have RA but said there is still a change of a different type of arthritis, but she said she believes the pain is caused by inflammation.
Posted 6/14/2013 5:23 PM (GMT 0)
Your rheumatologist should have done bloodwork, too, to look at your CRP and sed rate.

A six day steroid dose pack is probably not sufficient to address this degree of joint pain. When I had my terrible joint pain problem it took 1 month at 60 mg/day of prednisone to get rid of it all, and then another 2 months to taper off. At that point I had loose stools like you, no blood, and pain in every single joint of my body.

I think your decision to get a 2nd opinion is a good one.
Posted 6/14/2013 6:32 PM (GMT 0)
What makes you think you are in remission? Is your decision based solely on blood or no blood? Do the doctors think you are in remission from UC? I gotta tell you that there are some similarities to your case and mine and the doctors gave me the same crap - it's IBS. I don't believe them for one minute either. I was having problems before and I'm still having problems with frequency now even though my stools are usually formed and rarely see any blood. To me it's all the same thing - just a matter of the degree of the disease. My doctors never once mentioned IBS but then when it appeared my UC inflammation was gone but I was still having frequency all of a sudden I've got IBS instead of UC like it just magically appeared out of thin air. I also took a prednisone 6 day dose pack a few months ago and was very close to a full remission - until it wore off and I returned to my "normal". I really honestly don't believe there is such a thing as IBS. I believe all IBS cases are just very small cases of IBD that don't yet show any inflammation. They may get better or worse or stay the same, possibly never getting diagnosed with IBD.
Posted 6/14/2013 7:44 PM (GMT 0)
Yes, I say remission because the bleeding has stopped, although it does happen once every week or so very randomly, and because my doctor says I'm in remission if the bleeding is gone. Again, I've never had symptoms of IBS, this started recently and he is trying to tell me that Ulcerative Proctitis does not cause these things because not enough of my colon/rectum is inflammed. This IBS diagnosis came out of nowhere. But everything I've ever understood about IBS is that it's food related, and my symptoms are consistent no matter what I eat. When I even try and mention these symptoms as part of the Ulcerative Proctitis, my doctor just shuts me down, which is why I'm seeing a new GI. I do agree with you that IBS may not be a real syndrome, just a term they use when they don't know what's going on, but at this point, if it's not affected by food, my GI just wants me to think that out of nowhere I'm going to have lifelong IBS with no relief in symptoms. IBS isn't treated with steroids right? I'm thinking that if the symptoms lessen this week with steroid use, maybe my doctor will finally believe me that this is part of my Proctitis.
Posted 6/14/2013 10:42 PM (GMT 0)
Please keep me updated on this. I'm very curious about what happens with this. My 6 day pred course made an obviously big difference in me but I have never discussed this with my GI, mainly because I haven't had an appointment with him since I took the pred. I truly believe this is all related and that they do sometimes pull an IBS diagnosis out of a hat. One minute the hat is empty the next thing you know your UC is gone but now you have IBS. I still say it is a crock diagnosis and nothing more than a slick slight of hand magic trick.
Posted 6/14/2013 11:38 PM (GMT 0)
Bleeding is not the sole determiner of the disease. You can have no bleeding and still have an active flare.
Posted 6/15/2013 6:36 AM (GMT 0)
There are varying symptoms that can occur with flares, and they can differ from flare to flare as well...if your stools still aren't formed and you're still having issues with frequency then regardless of blood or not, that sounds like a flare...and of course people can have both IBD and IBS at the same time, they are 2 separate entities with similar symptoms. Based on what you've described is sounds like an IBD (your colitis) is flaring.

I do find it odd that your doc would assume you are dealing with IBS based on what you've described your symptoms are....did he scope you recently and not find any inflammation and conclude that you are experiencing IBS?

Any good GI would know that bleeding (unless due to hemmies) is not a symptom of IBS but rather IBD.

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