From Proctitis to full blown Pancolitis (in Canada)

My main early symptoms of UC (looking back), were hot flashes where I would turn RED (but no sweating), racing heart and shortness of breath. Sometimes there would be a 3-4 BMs on the odd day, but then I'd go back to 1-2 BMs/day.

This started around 2003.

My temperature would go to 37.4 or 37.7C, but not higher. (Doctors would tell me that it must be 38C to be a 'fever'.)

I was finally worked up for a flushing condition called Carcinoid Syndrome by an Endocrinologist. She told me "I have done every test on you that I can think of, regarding Endocrine issues. (24 hour urine collection jugs, etc.) So that was all negative.

I first had mucus and bleeding in 2012. I got a colonoscopy at a private clinic here in Toronto called the Rudd Clinic.

The Rectum biopsy came back as 'ulcerative colitis' and the rest were negative.

I was referred by this Rudd Clinic to a place called The Greenestone Clinic (owned by the VP of a Canadian furniture company!).

The GI doctor told me that the Colonoscopy doctor should have taken more biopsies, saying he only took biopsies from the Rectum, Transverse and Cecum. (e.g. NO biopsies for the Sigmoid Colon, Descending Colon, etc.). In the meantime, she gave me Salofalk and that seemed to stop the bleeding and mucus.

Then the GI doctor was off on a Christmas trip to India for a month and then Mat Leave for 12 months -- so my care was just patchwork with covering GI doctors at this Greenstone Clinic.

So when I inquired at my GP as to what to do, he referred me to a 'top expert' at St. Michael's Hospital (Toronto), who seemed to have the idea that I seemed well and didn't need to follow up on these biopsies and didn't need medication. He literally told me to 'take Imodium'.

So the symptoms like stomach growling and hot flashes continue, waxing and waning, but no blood and mucus.

I had a large OBGYN surgery in July 2015 and I had two days with small amounts of mucus and blood in Early December.

Then in Late January 2016, the blood, mucus and abdominal growling returned.

I started getting a racing heart, hot flashes and lightheadedness and wound up at the ER a few times. Finally the bleeding, mucus and BMs every hour returned.

The ER referred me to a local GI doctor who was able to do a Colonoscopy in 24 hours at the local General Hospital. He says it is Pancolitis.

He's saying this is way beyond Pentasa suppositories and enemas at this point. He has me on 50 mg Prednisone and 4000 mg oral Pentasa and 1000 mg Pentasa suppositories for a month, until the oral Pentasa can kick in, and then we do a Prednisone taper.

The new GI doc also said that if this doesn't work, we are on to higher cost, more risky drugs like Imuran, Humira, Remicade and possibly at Colon Removal. He mentioned drugs can cost $20K/year, etc.

A lot more than some Pentasa suppositories that may have kept it under control, if I had't listened to the Top Expert GI guy.

Lessons:
1. Don't always trust a 'top expert', as they can be wrong.
#2. Avoid private clinics who have patchwork GI doctor care. They seem to value profit over doing good biopsies.

Post Edited (emmalouwho) : 2/18/2016 11:14:01 AM (GMT-7)

Yes. I understand that UC is a chronic, lifelong condition and needs continuous treatment.

I didn't want to stop my meds, but what can I do if "they" are saying 'it's not ulcerative colitis'?

He is a top expert I was told. I was surprised too.


The reply here sounds sort of blaming and invalidating.

I stayed on my meds and my proctitis still spread to pancolitis - so don't blame yourself. I don't think there is any certain way to stop it from spreading. I hate to say it, but it almost feels like it's unstoppable in some cases. If it could be stopped, no one would allow their disease to progress.

I thought healthcare was pretty much free in Canada? Hopefully if you have to move up the medication ladder, you don't have to worry too much about cost. That's a huge problem here in the US. I am thankful I've always had pretty good insurance that covered everything as needed. Unfortunately, good insurance and access to the best medication & doctors still didn't stop the progression of my UC.

Imuran is available as a generic so I would imagine you could get it for very reasonable cost. I really don't think they should be worrying you about this stuff now, you have barely tried anything. You could try mesalamine or steroid enemes, a different oral med of the same class, antibiotic (if your GI thinks it's a plausible option). I think you need to find a GI you trust and talk to them about options.

While I think it was irresponsible of the doctor to take you off meds, there's no logical explanation for why this disease does what it does, IMO. When I was first diagnosed, in the midst of a really bad flare, the colonoscopy showed moderate pancolitis. Two years later I was still flaring subjectively, but objectively the scope showed moderate to severe proctosigmoiditis. Since the first scope, I've never had anything higher than left-sided UC. The meds were helping me but not improving my symptoms day-to-day. I'm fortunate to have excellent insurance, so after my first Remicade infusion co-pay the remaining infusions for the year are at no cost to me.

I didn't go off meds (my GP still gave me suppositories because I told him my symptoms and asked him to).

I was unable to get the additional meds that I needed from my GI.

She was more interested in her month long trip to Asia vs following up on my inadequate biopsies.

A patient cannot just 'get medication' unless a doctor will write the prescription.

I told them the rectal meds alone were not holding my symptoms.

I knew I needed ORAL meds too, because my symptoms would not stabilize with what they would give me, but they would not prescribe them. #nowin

It's not like we can go around prescribing our own meds. :S