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Ulcerative Colitis
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Posted 8/1/2016 4:31 PM (GMT 0)
What are the symptoms to look out for when this progresses from ulcerative proctitis to pancolitis? Does it progress only under constant flare ?
Posted 8/1/2016 4:49 PM (GMT 0)
Symptoms will be change in stool consistency and frequency....but remember that with some UCers...changes in inflammation happen in increments and sometimes so mildly that visibly they might not be seen via scope and definitely not felt.. Some can have visible symptoms via scope without even having flare symptoms until inflammation is more severe.

Why do you ask.....what symptoms are you having?

Not all UP becomes pancolitis. Once it progresses to the full length of the rectum and into the sigmoid, symptoms of stool consistency will change. If it stays at that location but increases in inflammation all symptoms will increase as well as bleeding of it hasn't shown before that point.

q
Posted 8/1/2016 4:58 PM (GMT 0)
Proctitis patients generally have the lowest odds of their ulcerative colitis spreading in extent and generally have the best prognosis of all uc patients. That said, proctitis can spread in extent for some patients. Uc spreads only when you're flaring, whether that's a full blown flare or even just a little lingering/simmering inflammation will cause it. Uc doesn't spread when your symptoms are well managed and you're in remission.

What does it feel like? It feels like your symptoms are worse then they should be. It could be a full blown flare. All standard uc symptoms we all know and loathe. I don't think proctitis symptoms are a whole lot different than pancolitis symptoms are. Even a little patch of really bad inflammation can cause us buttloads of suffering.
Posted 8/2/2016 2:21 PM (GMT 0)
I have read various posts about proctitis progressing to pancolitis in a matter of a year. My bm is normal except the rectal pain which I have been having for the past four months from the time of diagnosis. My doctor also told me that UP will not progress but after having read a lot negatively I am worried. At least I can watch out for symptoms and be proactive.

Mild inflammation continues to be in the rectum. Which one is better mesalamine suppository or hydrocortisone enema? Please suggest something which will have least side effects and can be tapered off once the inflammation settles down. I am already suffering from GERD, joint pain and severe hair loss.
Posted 8/2/2016 2:59 PM (GMT 0)
I'd say you're worrying over something that is unlikely to occur, about your proctitis spreading. Lets throw some odds at the query. "Approximately 10% of patients presenting with proctitis will develop a pancolitis (Rowe)." Turn that on it's head and 90% of proctitis patients don't develop pancolitis.
Source: www.mdguidelines.com/ulcerative-colitis

Generally speaking, mesalamine is the better choice for long term maintenance of your symptoms over hydrocortisone. Mesalamine is an anti-inflammatory medication and combats rectal inflammation well. Mesalamine is well tolerated by most and generally doesn't produce side effects.

Hydrocortisone enema is a type of steroid, they are great and strong temporary rescue medications but not a true maintenance treatment. Steroids are notorious for nuisance side effects, and you might get some even with topical rectal use over an extended period of time. Use them, they help greatly, but plan to be on them for as short of a period of time as possible.

UC always has rectal involvement, rectal inflammation is the first to appear, most difficult to treat, and the very last to go away. So, having proctitis doesn't spare you of the most troubling area of treating uc. I'd hit the inflammation hard with anti-inflammatories. If it were me, then I'd ask your doctor about a 4.0g/60ml mesalamine enema. That's the maximum dose mesalamine rectal route. You could ask about adding an oral mesalamine, like like lialda/apriso/asacol in addition (up to a maximum dose of 4.8 grams a day). Generally, they recommend using the maximum oral and rectal dose of mesalmine before progressing to stronger medications. Proctitis can sometimes require those stronger medications like immunomodulators or biologics, it can be stubborn, but exhaust the first level of treatment (anti-inflammatory ) at max dose first.
Posted 8/3/2016 12:10 AM (GMT 0)
I agree with iPoop that worrying about it progressing does you no good whatsoever since it may never happen.

I started with UP and was told at time of diagnosis that only 20% of people with UP progress to further colon involvement. I was one of those people within the first year that it happened to and I developed pancolitis.

I will tell you 2 things. Firstly, you know the difference in the flare. Pancolitis symptoms are so much more severe for me. More of everything. More cramping, more bowel movements, more blood, etc.
Secondly, tapering off meds (except steroids) when you get better is a bad idea. I decided to do that and that is when I progressed from UP to pancolitis. Not sure if that is what caused it to happen, but no coincidence in the timing.

I used a nightly mesalamine suppository (canasa) when I started with UP (I still use it nightly). When the rectum is in a bad flare, I use a nightly steroid foam enema and a morning suppository. The steroid enema is not long term. You can also add an oral mesalamine.
Posted 8/3/2016 12:30 AM (GMT 0)
The odds of proctitis spreading at all is 30 percent. Again, the odds of proctitis becoming pancolitis are 10 percent. If it's going to spread then the odds are it will be within the first 5 years of your diagnosis. Uc is particularly aggressive early on, while we're struggling to find the right treatment plan.
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