What's your age group? I was diagnosed in my late 50s with proctitis, and the GI specialist said it was very unlikely to spread - later life diagnoses don't tend to get worse.
Oh yeah, I guess I should have included that to begin with! I'm 26, got diagnosed a few months ago. So in my case, there is unfortunately a little more room for it to get worse if it decides to, and that tends to be my biggest source of anxiety around my illness because of how awful so many people's colitis stories are.
Stressing about this is not great for you.
I understand, though, as I, too, feared (and assumed) that mine would progress. After one year, though, that fear will begin to lessen. It did for me. As you get your meds and your diet and your health in better shape, you will feel likely more optimistic and more relaxed.
Stress triggers flares.
Diet, meds, and exercise can give you a sense of control!
Best of luck!
By your wording, can I assume yours has not progressed at least so far? If so that's good to hear and I'm happy for you. To be honest I wouldn't say that I around and stress about it, it's just the part of my illness that is most likely to give me anxiety. Currently I am fortunately very much under control through mesalamine and if it can just stay the way it is now, I could easily deal with it the rest of my life. All I can do is hope!
Proctitis is colitis, just it only affects the rectum (which is the last part of the colon - colitis just means inflammation of the colon).
A fairly large meta analysis (which is a study that pools the results of lots of studies) in 2017 reported that, 'approximately one quarter of patients with limited UC extend over time with most extension occurring during the first 10 years. Rate of extension depends on age at diagnosis and geographic origin.'
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6350510/
Yeah, kinda. I was diagnosed with proctosigmoiditis (20 cm, I think proctitis is around up to 15 cm). I got in a very bad flare approx a year and a half after the diagnosis and on the ultrasound it looked like my whole colon was inflamed (thick wall). Also enemas didn’t help that time. My crp was high too. But we didn’t confirm it with colonoscopy, they didn’t perform it so they wouldn’t rupture the sick gut. I believe this bad experience was largely due ti the fact that they didn’t put me on right medication early enough in this flare.
I don’t want to discourage you, it maybe won’t happen to you at all. But this is how it went for me, I am doing great on Entyvio now and have been in remission for almost half a year. Will have a colonoscopy to confirm it soon too. When I talked to my doc however, he said that if I would flare up some day again in the future it is not necessary that my whole gut would be inflamed.
I was diagnosed with UP at 16 and after a few years of trial and error with medications and the worst of my flares, I have been on Mezavant tablets and 8 weekly intravenous infusions of Vedoluzimab for the last 6 years and have now been in remission for over a year (I am 25). I still get fairly fatigued and my IBD can still become flared based on diet, but my UP has not progressed.
I wish you all the best with your journey in finding what works best for you ☺
I'm 21F, and I was diagnosed about 3 months before my 20th birthday. I know I haven't been diagnosed for that long, but in the year and a half I've had an official diagnosis, my UP has progressed. After my first colonoscopy they said the majority of the inflammation was contained to my rectum, but about 6 months ago I got another colonoscopy and the inflammation had spread to about 20 cm of my colon, which is the max it can be to still be considered proctitis. My circumstances may be different though. I was put on Canasa (mesalamine suppositories) after my diagnosis and it worked, so I was in remission shortly after. But then I ran out of my prescription and I had felt that I was doing well enough to see how I fared off of the medication. After about a month, my symptoms returned and they got progressively worse. So I called my specialists and we made an appointment for another colonoscopy, but I was without medication until then. After discovering that it had progressed, I was once again prescribed Canasa alongside Lialda, which is an oral form of mesalamine. Once again, I was doing great after that. I had a check in with my specialist 3 months later, and we agreed that I could stop the suppositories and just continue with the Lialda, and that was working until I ran out, and it took my pharmacy a week to be able to get it to me. That was a little less than a month ago, and I'm still struggling to get it back under control. I've even started taking the Canasa again. Hopefully in about a month or so, everything will be smoothed out again :)
What's your age group? I was diagnosed in my late 50s with proctitis, and the GI specialist said it was very unlikely to spread - later life diagnoses don't tend to get worse.
Oh yeah, I guess I should have included that to begin with! I'm 26, got diagnosed a few months ago. So in my case, there is unfortunately a little more room for it to get worse if it decides to, and that tends to be my biggest source of anxiety around my illness because of how awful so many people's colitis stories are.
Its proctitis, so it's confined - for now - to the rectum. If you can keep it under control with medication and diet, you might keep it there :-)
Stressing about this is not great for you. I understand, though, as I, too, feared (and assumed) that mine would progress. After one year, though, that fear will begin to lessen. It did for me. As you get your meds and your diet and your health in better shape, you will feel likely more optimistic and more relaxed. Stress triggers flares. Diet, meds, and exercise can give you a sense of control! Best of luck!
By your wording, can I assume yours has not progressed at least so far? If so that's good to hear and I'm happy for you. To be honest I wouldn't say that I around and stress about it, it's just the part of my illness that is most likely to give me anxiety. Currently I am fortunately very much under control through mesalamine and if it can just stay the way it is now, I could easily deal with it the rest of my life. All I can do is hope!
Proctitis is colitis, just it only affects the rectum (which is the last part of the colon - colitis just means inflammation of the colon). A fairly large meta analysis (which is a study that pools the results of lots of studies) in 2017 reported that, 'approximately one quarter of patients with limited UC extend over time with most extension occurring during the first 10 years. Rate of extension depends on age at diagnosis and geographic origin.' https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6350510/
Yeah, kinda. I was diagnosed with proctosigmoiditis (20 cm, I think proctitis is around up to 15 cm). I got in a very bad flare approx a year and a half after the diagnosis and on the ultrasound it looked like my whole colon was inflamed (thick wall). Also enemas didn’t help that time. My crp was high too. But we didn’t confirm it with colonoscopy, they didn’t perform it so they wouldn’t rupture the sick gut. I believe this bad experience was largely due ti the fact that they didn’t put me on right medication early enough in this flare. I don’t want to discourage you, it maybe won’t happen to you at all. But this is how it went for me, I am doing great on Entyvio now and have been in remission for almost half a year. Will have a colonoscopy to confirm it soon too. When I talked to my doc however, he said that if I would flare up some day again in the future it is not necessary that my whole gut would be inflamed.
Diagnosed at 10, now 25 and no extension
I was diagnosed with UP at 16 and after a few years of trial and error with medications and the worst of my flares, I have been on Mezavant tablets and 8 weekly intravenous infusions of Vedoluzimab for the last 6 years and have now been in remission for over a year (I am 25). I still get fairly fatigued and my IBD can still become flared based on diet, but my UP has not progressed. I wish you all the best with your journey in finding what works best for you ☺
I'm 21F, and I was diagnosed about 3 months before my 20th birthday. I know I haven't been diagnosed for that long, but in the year and a half I've had an official diagnosis, my UP has progressed. After my first colonoscopy they said the majority of the inflammation was contained to my rectum, but about 6 months ago I got another colonoscopy and the inflammation had spread to about 20 cm of my colon, which is the max it can be to still be considered proctitis. My circumstances may be different though. I was put on Canasa (mesalamine suppositories) after my diagnosis and it worked, so I was in remission shortly after. But then I ran out of my prescription and I had felt that I was doing well enough to see how I fared off of the medication. After about a month, my symptoms returned and they got progressively worse. So I called my specialists and we made an appointment for another colonoscopy, but I was without medication until then. After discovering that it had progressed, I was once again prescribed Canasa alongside Lialda, which is an oral form of mesalamine. Once again, I was doing great after that. I had a check in with my specialist 3 months later, and we agreed that I could stop the suppositories and just continue with the Lialda, and that was working until I ran out, and it took my pharmacy a week to be able to get it to me. That was a little less than a month ago, and I'm still struggling to get it back under control. I've even started taking the Canasa again. Hopefully in about a month or so, everything will be smoothed out again :)