What is it?

I am a new member and have been to 2 GIs, one proctologist, urologist, rheumatolgist, and gynecologist.  I.  I have had these sypmtoms for 5 years now.  First it was the gall bladder, then GERD, and we've gone back and forth with being diagnosed with proctitis, UC or Chrons.  I also developed ulcerated internal hemmorhoids.   I eat, sometimes before I finish my meal, my stomach cramps up, and I run to the bathroom and this is how I live most of my days. Definitely do not have with constipation but on the other side of the spectrum.   It can start as early as 3 or 4am in the morning.   I have blood and mucous in my stools and sometimes beyond this.   Sometimes the blood drips or the entire toilet bowl is red from blood.  This is scarey at times, but I have had all kinds of tests, to be told I don't have cancer.  In addition, I also have IC (interstital cystitis) and chronic to severe aches all over my body.  The Rheumatologist thought I may have fibromyalgia (sp?).   I don't know what to do as I have been on asacol (8 per day) and it appears canasa did nothing for me.  I am on aciphex, zantac, urised, and have many allergies.  I am puzzled because no doctor has diagnosed me. All the marker tests for UC and Chrons have come back inconclusive.  They pretty much tell me they don't know what I have.   If you have proctitis, are you also having the same symtoms I am having.  I am a positive, optimistic person and I am destined that this will not defeat me.  I am in search of answers.  If you can respond if you gone through what I have or have suggestions, let me know. 

Quincy -

I have requested all my medical files from all of my doctors so that I can review all the files, medical notes and test results.  I am finding I am not savvy enough medically to know some of the answers to your questions.  I have no clue if my IC is ulcerative or nonulcerative? I have problems with my bladder since childhood though and also with the aches and pains.  Yes been tested for parasites and nothing came up. No mention of I. colitis.  What is that? I have not been tested for  Sjogren's or Lupus? Who would do this test and what does it consist of.  Not sure about liver testing or not again who would do this?  The GI?  They did several band litigations for the internal h. with no success.  No internal meds given for IH.  The only thing I was given was canasa.  Basically the GI and proctologists can't agree on my treatment.  My diet consists of no breakfast, small lunch and dinner.  I stay away from spicy foods, any veg or fruit with skins, milk, greasy foods, popcorn, salads or too much fiber as it totally messes me up.  Safe foods seem to be white bread, rice, potatoes bland. I am thinking about a dietitian but it's hard when you don't know for sure what you have and sometimes it doesn't matter what you eat even if it is safe.  Stress does not affect it and it is hard to predict when a stomach attack will occur.  My constant runs to the bathroon I know do affect my bladder because it is the same muscles used in a sense.  I appreicate your feedback and will look into the websites you provided.  I also wonder if there is value in going to a MAYO clinic to see if they can give me another opinion. 

Quincy -

Thanks for the information. I also seem to have a pain on my right lower side or immediately under my right rib.  It's been frustrating as the doctor never calls me back  after the test or has his nurse practitioner call me.  I think they should schedule a separate time to explain the test results. This is also one of the reasons why I believe I need another opinion.  This is also why I insisted on getting the test results in writing.  Thanks again! 

Definitely a good point Veebo!

Sweet...the lower quadrant pain could be cecum involvement, crohn's disease (and not UC), gas, ovarian cyst, endo...
The upper right pain could be gas, inflammation, liver, Crohn's disease, small intestine inflammation...

Always hard to know..but if it's consistent, then it's more than just gas, for gas does tend to cause discomfort wherever it's passing and "expanding".

I can see how you're totally frustrated, for there's always some information missing when it's not coming from the one who can answer your questions.

I still think going to a Mayo clinic will be of benefit....and the main reason is because you have way too many things going on. They need to look at you as a whole for some of the meds can be used to treat all...such as immunosuppressants, etc. But if you do have something that's hiding amongst the fray, it's always easy to assume it's the most obvious rather than something new.
But in saying that.....with having so much going on, the body tends to react as a whole rather than independently in an effort to maintain some sort of harmony....my take anyway.

I think you getting your records will serve you well. You have a lot of work to do regarding research....but I don't think you have any choice because it's YOUR life/future at stake.

Please, please keep us posted.

quincy