Progression?

Did the majority of people on this board start with proctitis and then the disease progressed? How long did it take for the disease to do that and did your symptoms change because of it?

Mine started as proctitis and 8 years later had another sig. scope and according to that g.i I have proctosigmoiditis 50cm but my symptoms haven't changes from original diagnoses.Bleeding and mucous no D.

Mine progressed from proctitis to Left sided, mainly, in my opinion, is that I didn't take good care of myself. I was in denial and wasn't continuous with my medication. I honestly don't know if I would've been able to keep it as proctitis even if I was compliant with the meds or not but that is my theory anyway.

I'm unsure. It may have started that way but by the time I was diagnosed it was already pancolitis.

notsosicklygirl said...
Mine progressed from proctitis to pancolitis. I think it would have progressed eventually regardless of how I had treated it. I did notice a difference in symptoms between the proctitis flaring and the pancolitis. Pancolitis involves a lot of pain and cramping for me, proctitis didn't so much. Proctitis was a nuisance because I didn't have good control and I was seeing quite a bit of blood but I was able to manage it with Canasa alone - I considered myself fortunate for that. Some people can't get proctitis under control easily at all and being urgency is one of the main symptoms, it can be a real hassle. When my pancolitis was flaring, I could barely leave the house because of unpredictability. I never knew how many times or when I would need a toilet, whether it would be painful or require me to stay in the bathroom for an hour sitting in pain - I also had urgency to top it off. Not fun. My diagnosis changed from my sigscope one year to a colonoscopy the following year. I wasn't on oral meds and I was uninsured and unable to get treatment sooner. I had to join a clinical trial to get a colonoscopy.

 

This is where USA fails. No insurance, in Canada even if you are on wellfare, you are insured, you can get 10000 colonoscopies and it won't cost you 1 cent. Again if you are unnemployed, you get can all your meds paid for.  Clinical trial just to get a colonoscopy, what a joke. 

I started with proctitis then went to left-sided (43cm). There were a few years between diagnoses. With proctitis, I only experienced blood on otherwise perfect stools. With left-sided, I had all the typical UC goodies.

no, mind didn't progress after diagnosis...i have proctosigmoiditis, although not all of the sigmoid is affected.

zdenka..Just wondering why you would be treated only with suppositories and not enemas and oral 5ASA

q

Quincy,the last 7 of the 8 years of having colitis I thought I still had proctitis because my symptoms have remained the same ,blood and mucus.Last February I had another sig, and the terrible g.i  said it spread to 50 cm, gave me a prescription for Mezavant and Salofalk enemas.I took those, next morning had diarrhea all day all night ,saw colon tissue in the toilet.stopped taking it every thing cleared up in three days,called g.i said to try again until body gets used to it,samething happend ,very sick coudln't even eat,again three days later every was fine.Prescribed Asacol ,same thing happened except this time fever with it as well.Had to go to hospital do to dehydration and lost 10 lbs. as well.I don't react to the supposatories for some reason.Will be seeing a new g.i this March for my first colonoscopy.I am not trusting the last g.i.'s diagnoses.Her clinic closed down because almost 7 thousand people received letters that we have to get tested for hiv and hep b and c besause her equipment was inproperly steralized.The new g.i said she didn't know what to do with me because of my reaction and my colitis symptoms and was doubting the first  g.i 's report.Sorry about the long reply.

Hi quincy ,it was white sheets ,Chunks 2  - 3 inches, thought it was toilet paper at first,it was rubbery not sure what it was.

I don't suffer from diarrhea ,never have only when i had a reaction to the meds.

Blood on stool or bloody mucus are my symptoms.

I be willing to try the steroid enemas.

Thank you Quincy

I eat homemade scd yogurt every day,I don't take any fiber,I have one fully formed bowel movement every morning.I eat tons of fruit and vegetables and nuts.

 What would be my other options for mild medication.

The new g.i I am seeing-when I mention probiotics she said they don't work,I don't have much faith in this one either.She is young I thought she be informed on top of the new studies,not to sure about her so far ,only met her once for 5 minutes,next time I am seeing her is at my colonoscopy. I appreciate all your in put.Thank you

Yes, I agree it would be a red flag....but you would have to clarify what she meant by it doesn't help. Does that mean help a flare, heal a flare, prevent a flare, cause a flare? etc.

Even if my GI said the probiotics aren't helpful, I'd still take them. I think everyone should, especially with all the gastro crap we can ingest daily.
Many people are pigs and never wash their hands.


Tons of veggies, nuts and fruit would give me looser stools for sure. do you eat any other foods that can bind them together?

q