Ulcerative Proctitis... but it doesn't seem right.

I was diagnosed as having "Non-specific Proctitis" a year and a half ago. I am still not really aware of what is meant by this other than the fact that they don't really know what caused it.

To begin with, it was intermittent. Before the diagnosis I was suffering the usual symptoms of UP, constipation, passing blood, frequent toilet trips. However, sometimes, these symptoms would up and disappear for no real reason. At the point I was diagnosed however, they seemed like they were there to stay.

Fast forward to after the diagnosis and I was put on Salofalk Mesalazine, which cleared up the symptoms fairly quickly. I was back to my old self and for about a year since then, other than very occasional spots of blood on the toilet paper when I forgot to take my regular dose (1 actuation a night, half a regular dosage), I was grand.

However, something has always troubled me about the diagnosis and now, in recent weeks due to suffering with a very bad flare, I'm starting to doubt it.

Diarrhoeal stools, basically... and a lot of them. Before my diagnosis I was suffering with both constipation and diarrhoea, occasionally passing undigested food (mainly green vegetables which can be tough during a flare, I know that). This flair just feels different. There is bright red blood... but only very occasionally, usually at the end of the day or in the middle of the night. For the most part I have been passing undigested food and having quite bad diarrhoea, on and off for the past few weeks. The Salofalk, which had worked wonders before now seems completely useless. It's almost as if the foam is just hitting a wall of soft faeces, mixing in with it and not being absorbed by my bowels which, to be honest, aren't absorbing the water from the food so why would they be absorbing medicine?

My doctor has set me on a course of Prednisolone 20mg foam enemas, which I'm hoping will shift this particularly stubborn flare. I should mention, it's been flaring up for around 3 weeks now (the longest I've ever struggled with it since the diagnosis) and in that time, it has looked like it is disappearing and subsiding a few times with just the use of Salofalk, only to come rearing back after a few days of 1 stool a day and good formation.

Before I was diagnosed there were times I was passing undigested food, like I said, and my doctors seem fairly convinced that there is a link, even if it is just the last 6-8 inches of my colon which is affected... so it is not out of the question that this is simply UP. I don't have any real left-sided pain, no dark blood or sickness, no REAL weight loss, and I generally feel "ok" (as "ok" as somebody who has to go to the toilet 7-8 times a day and wakes up in the night to expel medicine I've put up my back passage to try and help matters). I'm just not sure... and I don't really know how to help myself with these meds because my colon just seems to be rejecting them rather than allowing them to do their job. I know Salofalk itself can cause diarrhoea, but it's never been an issue in the past so I'm not sure why it would be all of a sudden and if it is causing it right now, what can I do? I can't STOP taking it because then my flare will get even worse.

Kinda stuck between a rock and a hard place here.

     I understand you completely.  I suffered with UP for twelve years and ran the gamut of meds before having surgery in 2010.  Not saying you will require surgery.  I suggest you ask your doctor about rectal meds.  In the early years of my disease Rowasa helped me quite a bit.  There is also Canasa and Cort enemas out there for this purpose. 

I had UP also, and a very stubborn area, about the size of a quarter, that made me miserable. Your symptoms sound like mine. I also ended up having surgery because I just could not get into remission in the 2.5 years I tried. I suggest you work very hard to gain remission. It can be a very difficult area to heal.

Sue

Well, it SEEMS to be "digested"... maybe I overstated that. Frequently the only bits of food I see "undigested" are green vegetables such as lettuce and peas. Everything seems to come out digested but as diarrhoea.

I should probably also mention that I have a sliding hiatal hernia which causes GERD. This has been linked back to digestive issues so maybe that's why I occasionally fail to digest those particular foods? As far as the idea of it being an issue with my small intestine, I couldn't be certain, obviously, but I don't feel like it's a possibility. I have been tested for Crohn's as far as possible without any serious investigation, bloods came back not showing inflammation etc. so I'm fairly confident it's not that... but I'm interested by your experience.

Before my current flare-up I should forcefully state, there were NO symptoms at all if I kept up my medication. If there were days when I didn't take my meds I'd see occasional small amounts of bright blood, but that would instantly disappear if I took my meds again. Surely if there were problems elsewhere these would continue to manifest in spite of the fact I was taking meds which only really treat the very lowest part of my colon?

I remember talking to my 2nd GI about this after that scope where he found inflammation in my cecum (and by the way, the blood work to look for inflammatory markers isn't fool-proof - you had inflammation in your rectum yet it didn't show up).

I had been complaining of diarrhea all throughout the proctitis treatment protocol. Besides the fact that my proctitis wasn't going away with the minimal oral meds and mesalamine enemas, I had this diarrhea and indigestion and all kinds of other complaints. After the inflammation in the cecum was found we doubled my Asacol and upped the frequency of the enemas. That took care of the rectal symptoms (mucous, blood), but I still had diarrhea and the occasional bloody bowel movement. A couple of years (!!) after that I switched to Pentasa and it was like I was a new person.

I've been diagnosed with mild proctitis also. My symptoms have remained mild compared to most on this forum.. Ive been suffering more from other symtoms than those from proctitis. Every time I google my symtoms in brings me back here. The latest is wrinkling fingertips :/