Currently undiagnosed, but doc suspects uc

Hi everyone... this is my first post here but I've been reading the boards for the last few weeks.

I've been passing blood and mucus for a few months now, and my family doctor did some blood work and stool samples that showed inflammation. My faecal calprotectin level was 174 (norm is 50, but family doc says some of her patients had numbers in the thousands). She suspects colitis, and based on what I read on this forum, I believe I have a lot of the symptoms. I've also gone for a CT scan (no results yet... no news, good news?) and am scheduled for a consultation with the surgeon who will do my colonoscopy next week.

A typical day for me is: 2-3 bm in the morning, the first one is very urgent. Always with blood. Then I eat breakfast at work, around 10-11 am, just so I won't have urgent bm when my coworker is there (she's only there half a day). I will eat lunch and then depending on what I eat, I can have very urgent bm of just gas, blood and mucus once an hour until I go to bed.

I have cut a lot of foodstuffs from my diet: Caffeine (miss my morning coffee TREMENDOUSLY), soda, all foods with seeds (popcorn, berries, tomatoes) as these used to make me go most often. I also get a lot of gas with red meat, so I pretty much cut back on all meats except chicken. When I cut back on these and have only what I consider safe foods for me, I can have as few as 4 bm/day, but again, always with blood.

I also have a lot of leg pain and muscle weakness when I have the most blood/gas bowel movements. Does anyone else have that? I realize most of you take meds for your uc and some say it might be a side effect of the meds, but in my case, I often have to soak in a hot bath at lunch just so I can work in the afternoon, and I always have another hot one before bed. On very bad days, I will be up at 2 am sitting in the tub.

I want to be as prepared as possible before I meet with the surgeon. Will she wait until I have the colonoscopy to treat me? Seems if I have quite a bit of inflammation, something could be given to me to bring that down? I also never have any pain or cramps, my only symptoms are the urgent blood bm's and having to go sometimes up to 10-13 times/day.

Any advice before my initial consult? Thank you!

Thanks for the reply! I agree, everyone is different.... wouldn't it be great if there was a set list of foods that was standard for us to avoid? I am able to eat fried chicken, fries and wings without any issues, though I rarely eat them. Seems most days I stick to toast and pb, apple sauce, and broth. I do take a multi vitamin and if I can get an actual diagnosis, I hope to get a consult with a dietitian/nutritionist since I am seriously missing fruits and veggies.

I took pictures of all my bm yesterday.... and I will again next weekend so I can show the surgeon who will do my colonoscopy. I got one of those plastic bed pan thingies to collect a stool sample, it makes it so easy.

Thanks again, these forums are a wealth of info.... I will surely post again after the initial consult (July 4th) and hopefully don't have to wait too long before the actual colonoscopy.

imagardener2- thanks for the reply! I am finding it difficult to wait... and it'll be even longer since I need the initial consultation before the colonoscopy is scheduled. And summertime seems to slow things down considerably, with vacation time, etc. Hopefully it will be sooner, rather than later, even though I dread it!

There is definitely no constipation, so the leg pain and muscle weakness aren't caused by that. I'm very lucky that a hot bath before bed and then quickly falling asleep before the aches start again give me immense relief!

Thanks again And as per your signature and other things I've read on here, I am considering trying a gluten free diet soon... it can't hurt right? Mostly dairy free and that seems to have decreased the bm's.

Right now you know you have inflammation but not the cause of it, you'll need some diagnostic tests to find the cause. Passing blood in stool is always a good reason to investigate an Inflammatory Bowel Disease like an Ulcerative Colitis. However, it could just as easily be an infection/pathogen (and infections are far more common than an IBD/UC are) such as an Clostridium Difficile or an infectious-colitis.

An UC diagnosis requires:

1.) A stool test negative for infections causes. Positive for infections would be an infectious-colitis or c diff.

2.) A colonoscopy report. Available after colonoscopy.

3.) A bioposy report from said colonoscopy. Available 3- days to a week or more from colonoscopy.

For now, eat bland, non-spiced, low-fiber, well-cooked foods. Avoiding caffeine, alcohol, and hot pepper spices is recommend. My system generally agrees with the following in flares: soups, broths, chicken, and potato. Inflammation makes the intestine swell, reducing it's interior diameter. Fiber is bulking and abrasive, and not good for a narrow, raw, and bleeding intestine. Raw foods are much harder to digest and are often full of fiber. Pepper oils inflame from mouth to anus, not good for those of us with inflammation. Alcohol is a gut irritant that can cause inflammation.

For now, avoid NSAID pain relievers (aspirin, bayer, aleve, etc.) as they worsen IBD. Use only tylenol.

Get a heat-retaining pad/hot water bottle, and put it on your sore, achy, lower abdomen for temporary relief from aches. It'll be your best friend.

If you have an infectious-colitis or a c diff, then a one-time-course of medications will clear it up, and you never have to worry about it again. If you have an IBD, then you will require lifetime meds (often an oral form of mesalamine: asacol/mezavant/lailda/pentasa and a rectal form of mesalamine: canasa suppository or rowasa enema). IBD goes through periods of remissions (a total absence of symptoms) and periods of flares (what you are experiencing now). Remissions can last years, and you are essentially normal. Flares happen to all IBD patients, we just try to make them as infrequent and mild as humanly possible with an appropriate maintenance medication treatment (like the aforementioned mesalamines).

You will be fine, you will get better, and you will thrive regardless of the diagnosis. Try not to worry! Be prepared for a wait, for the colonoscopy, for the results of the biopsies, for a treatment, and for said treatment to work. With an IBD there is no instant-gratification, it will take a series of months to enter a remission with the needed meds, and be back to normal.

I know blood is disconcerting, nobody wants to see it, and we all panic a little. However, during UC flareups, we only pass between 1-teaspoon to 2-tablespoons of blood during a 24-hour period. I know it looks like a whole lot more then that though. It does mix with water and/or diarrhea and looks like a lot more than it really is. A couple drops of pure blood can turn the surface water of your toilet bowl bright red. A few drops can turn your toilet paper bright red.

If you get a UC diagnosis, ask the "extent" (proctitis/rectum, proctosigmoiditis/left-side, or pancolitis/whole-colon) of involvement and also the "severity" (mild, moderate, or severe) as those are the two primary determiners. Make sure you're given mesalamine oral and rectal routes with UC, as well. In fact, do not leave the consultation unless you have a script/prescription for both when given an UC diagnosis.

Let us know how it goes. Cheers!