I knew this day would come.

Dx with proctitis oct.2014

Started with salmonella infection, was given antibiotics to treat it. After a week of completing the antibiotics I started to develop loose stool that got progressively worse and more watery, then the pain blood and mucus started. Went to the hospital Friday, they told me it's from the antibiotics and sent me home. Went back on Saturday, that er doc told me that I haven't lost enough blood for it to be an emergency.. Sent me home. Sunday, I decided to go to another hospital in my area and was able to get a colonoscopy done next day (Tuesday) diagnosis.... Pancolitis. I've feared this day ever since I got dx with proctitis. I'm in hospital right now, they stated me on pentasa 1000mg 4x daily. Aswell as mesalamine enemas twice daily. I'm a big worry bug and really wish this didn't happen to me but it's the harsh reality that I've come face to face with one of my biggest fears. I'm 27 and feel like my world has come to a halt. Is this how I'll be forever? Running to the bathroom every hour to pass blood and mucus? And the pain!! Anyways I needed somewhere to vent and if you've made it this far thanks for listening. I'll keep everyone posted and hopefully I'll be back to normal soon.

Discouraged

I was taking 5asa suppositories nightly.
The doc said they didn't want to put me on steroids first. They want to see if pentasa and enemas will do the trick before being more aggressive with steroids.

I hate steroids, but they do work quickly. The approach they are using is unusual If the bm's are frequent and bloody. Pancolitis isn't the easy stuff to a treat.I am surprised they are keeping you in when the meds are easily are administered at home. Hopefully they are giving you fluids and watching your blood work for inflammation markers. Then your insurance won't fuss about paying. Keep us posted

I really think doctors make a huge mistake treating UC proctitis in the proctius area only. It is my belief that UC effects the whole colon but isn't always visible in the whole colon. They should also treat proctitus with the oral 5asa's as a pre-emptive measure so that it does not spread as it did with you. I can't tell you how many similar stories I've heard. While UC is a nasty disease, there is hope.

Yeah, in retrospect I really wished I had treatment from both ends. Im very surprised that this happened in a span of less then one week. I went from one bm perfect form always atleast 12-18 inch long to pancolitis. I thought this was a gradual disease!!?

I am so sorry. This happened to me with a cold, my UC was under control and I got a cold and things got really worked up and difficult to treat. You will get back to normal. It takes time to heal. Did they mention a treatment plan?

I got out of my first flare without steroids. Just Lialda and Rowasa. Needed prednisone and steroid enemas for my 2nd. Hoping to never have a 3rd.

How soon should I expect to see things get better? Based on the treatment I'm on? A couple days a week? How long should I wait before I seek steroids

leokorry...where in Canada are you?

It can be a gradual disease. Did you have a c-scope for your initial diagnosis?

q

it is possible you had some inflammation in the right or transverse colon and it simply could not be seen with a flex-sig.

the antibiotics likely kicked it into high gear, but it may have been simmering for some time.

almost 60% of people get remission or considerable management with the meds you are on. if you are still having symptoms in a few months, it will e time to consider stronger meds.

while IV sterroids may not be needed at this point. It could be reasonable to give you a 2 or 3 week oral steroid taper to help the 5asa get a foothold.

good luck

i often talk with people on the Indian uc forum and i remember some of them saying that they have gone through horrible stages with their uc and now they are doing very well (some are even off the meds after periods of being steroid dependent). So i believe your things will clear up as well and you'll be in remission again :)

Not that I've heard, but you do need further testing such as urinalysis at the very least. Did you have any discomfort during urination?


You should have had a c-scope initially for your diagnosis...cannot stress that enough with everyone. UC can have a form of proctitis AND cecal involvement....
Your doctor was remiss in that glaringly obvious test, sigh.

I'm hoping that the doc who did the c-scope took biopsies throughout? Usual is 30 - 36ish. So can you check to make sure about that?

Keep us posted please!
q

When you're using Mesalamine enemas, your urine can appear brown/dark red in a recently bleached bowl. I assume hospitals bleach daily.

Please see http://journals.lww.com/jpgn/Fulltext/2013/05000/A_Curious_Case_of_Red_Brown_Urine_in_a_Child.30.aspx