Kind of embarrassed to post this... but here goes

Hi everyone - just found this forum... like my subject line says, I'm embarrassed to post this - since trying to search for some answers, I realize how many of you are suffering far, far worse than I have with this disease. But perhaps some of you might be able to give me some feedback

My basic question -- how long is too long to have rectal bleeding? I was first diagnosed with UC in 2010 when I started seeing blood on toilet paper and was very concerned about colon cancer since I was 37 years old and my dad had colon cancer in his 30s. Anyway - after the colonoscopy, the doc put me on Lialda. First 4 pills a day and then slowly tapered down to 1 a day.

For the most part, I only had one flare up a couple years ago... which again, an increase of Lialda knocked out pretty quickly.

This past Christmas I started getting really bad stomach pains and cramps. I kind of thought it was just stress - my Dad had passed away suddenly a few weeks earlier - first holidays - etc... then I started noticing some blood again - not all the time every couple days or so.

Went to the doctor about 2 weeks ago and he increased Lialda back to 4 pills a day - and I havent seen any improvement. Perhaps not as much stomach/abdominal pain - and only moving my bowels maybe 2 a day - but now I see blood every time.

Am I making myself crazy/hypochondriac here or is that kind of normal? Just confused because my earlier experiences seemed to get this under control much faster...

Thanks for reading and any feedback

Thanks Kazbern - now that you mention that - I forgot that the first round I had suppositories - I think it was Canasa? I'm between GI doctors (my last doc left the practice) so this was my primary care doc. From what I remember it was mostly contained to the end of the colon (initial diagnosis was Ulcerative Proctitis... but when all the biopsies came back, they found other areas that they called it colitis)

My last colonoscopy 2 years was so clear the doc said "had I not known you were previously diagnossed, would never thought you had UC

I would add back in the Canasa. If that doesn't work then you may have to switch to the mesalamine enemas, which reach farther up. Keep your Lialda at 4 pills per day. Assuming this all works to get you back where you were, you made a huge mistake in cutting the Lialda back to just one pill per day. Might have just as well been drinking water instead. UC is a disease that you have to keep in check at all times, even while in remission, or it will come back to haunt you worse than before and what worked before often won't work again or work as well, which is what you are discovering now. You should never cut the Lialda to any less than 2 pills per day ever, and you may even have to continue with a dose higher than that if you don't get into a solid remission. I would also continue taking the Canasa forever to some degree, even if you just cut back to once or twice per week. The goal with this disease is to never flare again because you never know if you will be able to knock it back out if you do. So, if you reach remission again continue with at least 2 Lialda per day and Canasa once or twice a week, forever, even if you have been in remission for decades. Also, any time you have stress, come down with a bad sickness, or take antibiotics you need to be proactive and automatically increase your meds back up to full dosage during those times to avoid a flare. It is always a mistake to cut meds back too much and think that if you flare again you can just do what you did before. Right now I wouldn't worry about the bleeding. It really isn't a great indication of colon cancer in UC patients, even though we have a little higher risk of it. The bleeding is just part of the disease, not an indication we have cancer.

Most of us find that we cannot completely stop meds. ever. It's natural to want to reduce your dosage, and many do, but not as low as 1 tablet per day.

I was able to stop using rectal meds for about 5 years but recently had a relapse. I have never stopped my oral meds.

1 Lialda a day isn't even a good maintenance dose. I agree with the others, you should try some rectal meds. it sounds like overall, things are pretty well controlled with mesalamine and that's wonderful. If you really don't improve with mesalamine this time around, it may be that your disease has progressed, and it's more difficult to treat. If you struggle to get stable with mesalamine orally and rectally, you will have to figure out a plan but I don't see why that would be the case, so give yourself some time to heal, and this time, stay on a little bit of a higher dose of Lialda for maintenance - maybe you can avoid future flare ups. There are options beyond mesalamine but hopefully you don't have to worry about them right now - I would however speak to the GI about it so you're prepared in case you need it in the future.

I also have Ulcerative Proctitis and am thankful I do not have it worse. Was diagnosed about eight or none years ago and as soon as I started meds (canasa and asacol, I went into remission. Been in remission ever since until this past November...my first flare since being on meds. I bled for about 2 and 1/2 months. Jiust started feeling better last week. My Dr. is a strong believer to never go off meds...ever...and never take advil, and don't smoke...Those are his rules...I did cut back on canasa years ago to about once a week (Dr. said it's fine) and since my last flare started, I've been using canasa twice a day. So, bleeding for a while is normal. Good luck to you. You will find much helpful information on this forum. I have and am very grateful to have found it.

The goal is zero blood. That being said, they say proctitis doesn't increase your chance of colon cancer, and a GI isn't going to prescribe you any serious meds if all you have is a little proctitis. So I don't think it's possible to have a little bit of blood for too long, if we take "too long" to mean "long enough to have serious complications".

Hey everyone - just a quick update...

First thanks for all your advice. I reached out to my doctor Thursday and only got the prescription for Canasa yesterday afternoon -

In any event, after one dose, there was still blood, but it was noticeably less than it was yesterday. Appreciate all your encouragement. Not sure I would've remembered to ask about adding this - and more hopeful that perhaps I can arrest this flare up after 5 weeks

thanks Juststud... been a rough 4 months

Don't be embarrassed at all I have severe proctitis..I have crap my pants multiple times, crap in a parking lot, etc....you just have to laugh and make sure you are getting the right treatment!