Could my UC diagnosis be wrong?

Were biopsies taken?

I don't think anything is definitive as far as this disease and diagnosis goes though it appears as though the biopsies help distinguish between Crohns ans ulcerative colitis for the most part.

It could be coincidental that your symptoms got worse as you started the medication but if I were you I think I'd make an attempt to find out if the meds were causing the problems. (either with your GI or with another doc). Gaining 55 lbs in 6 months sounds like there is something else going on here.

Did you start the Liada just last week or when? What side effects are bothering you?

Regardless, there are alternatives to try, like diet and supplements.

Good luck.

The biopsies will give you more info. I only have 2 cm of inflammation in my rectum but the biopsies came back Mild to moderate active UC. If the medication is making you worse then you may have an intolerance to it. I would tell your doctor that your symptoms have worsened. You could then be trying a steriod enema or suppository at the very least.

By the way, I have never lost weight from my UC even when going 20+ times a day.

If your inflammation is limited to the rectum then I would consider stopping the oral meds and just using the rectal meds.

EllieKay, when you say that they tested for white blood cells in your stool are you talking about fecal calprotectin? Positive results on this test are very strongly correlated with an inflammatory bowel disease diagnosis.

I am also on Lialda. I have never had hair loss from it even when I took 4 a day but I will say when I take 4 a day my stool becomes looser.

Your diagnosis sounds about right. Talk to your doctor about changing meds if they're bothering you.

Babeinthewoods- Proteins are not digestive in the large bowel. Your hypothesis falls flat.

I got diagnosed almost 19 years ago and only had inflamation in the rectum at that point. I was bleeding alot then but got that under control with prednisone and didn't really have bleeding again until just last year.  My coloonscopies biopsies actually come back showing 'normal colon' - or no signs of UC.  The GI I had at the time told me I never had UC and told me to stop all my meds. Well I started bleeding after doing that and had a sigmoidoscopy which showed signs of UC.

My point here being, UC can present itself in different ways in different people.  The GI I had was very new and clearly was only going by the book. But this isn't the case for all people and you don't have to have bleeding all the time to have UC, I know I don't.  I tend to have alot more of other symptoms actually that seem like IBS.  But I do have UC.  So I just say always question your GI as much as you can and research as much on your own as possible. Better to be armed with your own info as well.

Many people are in denial at first or just plain scared. You have every right to be. Just remember no one knows what their future will hold.

Thank you guys. I guess another question I have, since I've never had any major symptoms, how do I know when I've gone into remission? My doctor said she wants to treat this aggressively so that I can be off the meds soon, with just a probiotic and possibly a suppository. She's hoping for three months at the most. What is she going to look for? What do I look for? The streaking of blood I saw in my stools wasn't consistent, so I don't think I could use that as an indicator. How will I know everything's ok? Thanks again guys. I appreciate the help! Everyone in my family, including my fiancé have been less than understanding and even a little harsh.

when i was diagnosed, my main symptoms were bleeding and constipation. also, high WBC in the colon are very common for patients with UC. it's almost a given. i had never even had diarrhea before my diagnosis. it was when i started lialda that i developed diarrhea, urgency, accidents, abdominal cramps/pain, hives. uhh just everything got worse! my entire colon ended up inflamed after i took it.

so if you are noticing a worsening of symptoms, it could definitely be the medicine.

you will know you are in remission when you have no symptoms.

Oh no... How long were you on the lialda? My stools are just like small, kind of thin, and dark. She also gave me an iron supplement, and I'm noticing a darkening of my stools. I stopped the iron supplement today so that I can determine if the darkening is due to the iron, or the Lialda. Does anyone have experience with this? Has anyone tried bee pollen? Odd I know... But I just saw something about it online.

Ok Elli, first you need to try one thing at a time. Don't jump into trying bee pollen or propolis or tumeric or vitamin E etc etc (there are so many things to try).
First i agree with what Kazbern said, rectals are what you really need right now. Why take drugs thats affect the rest of the your colon when it's fine and dandy..? Doesn't make sense.
SO get in touch with your GI asap, especially if the orals are giving you bothersome symptoms, and ask to be switched to mesalamine suppository or enema...preferably start with a supp and see how you go.

Then add in a probiotic and fiber, one at a time, and see if they help at all. A good fiber is psyllium seed powder (organic).

That maybe enough. Why add more things than you need? Then you won't be able to stick to taking everything.

As for iron, i would stay away from iron supplements as they can mess up with the bacteria in your bowels. They mess up even healthy people's intestines so i can't imagine with us. Try Spatone which is water that is naturally high in iron. Or try something called haeme iron, i can't remember the exact name; Killcolitis used it on her daughter maybe she can chime in?

I went through denial at the start too. Even though i was going seven times a day with liquid D. because i didn't have obvious bleeding and i thought hey but UC = bloody D. Well not always.

Since your inflammation is only in the rectum, and UC almost always starts from the rectum then works itself upwards, then i would recomment squatting for defectation. There are theories that rectal inflammation and ulceration is caused, atleast partially, by the friction and the waste buildup (as you can't really fully evacuate) that happens when using western style toilets. You can try the squatty potty or the Lillipad.