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Ulcerative Colitis
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Posted 1/7/2017 4:34 AM (GMT -5)
Hi everybody,
I'm having some worrying symptoms and I would love to have some feedback from you. Lately my mornings are very unconfortable ones... First thing, I wake up and I feel the urge to expell the salofalk enema, can't wait. The enema goes out as a white substance, with a few blood sometimes at the end, but mostly white (?). Then I fix my breakfast but feel the need to go again and I expell only blood and some mucus. After breakfast I have one or two bms with well formed stools and dripping blood that turn the toilet water red. And finally I have a feeling of incomplete evacuation that I try to ignore.
Then my day goes more or less ok until I go generally in the evening (blood and some mucus first and a bm later, with blood, of course). Maybe I am been too graphic...

I am having quite a lot of meds daily: 4g oral mesalamine, 4g rectal mesalamine, 600mg hidrosmin and I am in my third week of four of a course of clipper (betamethasone, a corticosteroid).

I know from my last sygmoidoscopy that I have internal hemorrhoids and some inflamation higher than before. Don't know the details yet, I did the test five weeks ago if i recall correctly.

I'll try to contact my GI next week. What do you thing? Have you had similar symptoms? I think some hemorrhoid can be responsible of some things but I don't know what is happening, if I should be more worried or what to do or what option do I have.

Thanks a lot, this forum it's great.
Posted 1/7/2017 5:52 AM (GMT -5)
Have you had a colonoscopy yet? Sounds very much like what I was going through about 10months ago. Finally went to my gastroenterologist and he said he needed to do a colonoscopy to see if my Proctitis had traveled to the sigmoid colon. Sure enough it did and wound up being a full blown UC flare.

He put me on Prednisone for several weeks to stop the bleeding and then on the Lialda to try to stop the urgency. I also was using Cortifoam. It's finally under control but took a good six months.

Since you are already on mesalamine you may need some different medications but if I were you I would definitely get it checked out by your gastroenterologist to see.

I also had and still do have hemmorhoids but they usually just cause the bright red blood on the toilet paper rather than what you describe.
Posted 1/7/2017 6:10 AM (GMT -5)
Hi Nana 2, I've never had a colonoscopy but my GI said from my sigmoidoscopy that I have inflammation where salofalk enemas are not efective enough. But I haven't had an appointment yet so I don't know its severity.

What is worrying me is that I am already having clipper that is a corticosteroid and I found very efective in the past. I don't know if Prednisone it's better.
Posted 1/7/2017 6:48 AM (GMT -5)
Well i can tell you that when I had the Proctitis it was only 6 cm in the rectum and my main issues were blood and tenesmus the feeling of having to go but nothing but blood or small stool. Had that for several years. Then all of a sudden in August of 2015 was stressed out by a lot of things going on and started with more blood in the Toilet and more and more urgency and then more diarrhea that I rarely had before. Got to the point I couldn't leave my house because I never knew when I'd get another urge to go and it was always bloody and with mucous.

My gastroenterologist had me using Canasa suppositories and they weren't helping. Then he tried the Cortifoam and that wasn't helping. He had me on four weeks of Prednisone which helped at the higher dose but once I tapered to 20 mg the bloody D was back. That's when he said he felt my Proctitis traveled up further to sigmoid and did the colonoscopy to see. He saw 25 cm of ulceration which was causing all the bleeding and urgency. That's when he put me on the oral mesalamine at 2 per day. But increased it to 4 per day along with the suppositories at bedtime. That seems to be doing good for me but he did say that sometimes if that doesn't work we need to move up to the next level meds which are immunosuppressive type drugs.

I would again recommend you see your gastroenterologist ASAP because the longer we wait the harder it is to get the flare under control.
Posted 1/7/2017 7:05 AM (GMT -5)
Another thing I just thought of is that you may want to ask your doctor about the Rowasa enemas. A lot of people use them too as they reach that ulcerated area that the oral mesalamine and the suppositories may be missing. I used Rowasa for awhile and they are a pain in the butt to use but they say the more you use them the better they work and the more you get used to inserting them and retaining them through the night.
Posted 1/7/2017 8:07 AM (GMT -5)
You're flaring with that sort of frequency and it sounds like it isn't mild. Clipper (uceris in the usa) is good for mild to somewhat moderate inflammation. If you haven't responded in a week or so then you might need prednisone (40-60mgs) as it's best for severe to moderate inflammation.

It sounds like you've maxed out the anti-inflammatory mesalamine-based medications. So next stop is immunomodulators (azathioprine/imuran or 6mp) or biologics (remicade, humira, etc.).
Posted 1/7/2017 10:59 AM (GMT -5)
"It sounds like you've maxed out the anti-inflammatory mesalamine-based medications. So next stop is immunomodulators (azathioprine/imuran or 6mp) or biologics (remicade, humira, etc.)."

or FMT, LDN, diet modification, probiotics, etc, etc,

have you tried any non-med treatments ?
Posted 1/7/2017 12:25 PM (GMT -5)
Thank you for your answers. It's tough to deal constantly with this disease and I'm always worrying. I'll call soon my GI and I'll be prepared to any crazy tier-up med. But I'll mention to my GI alternative treatments if I have an appointment because I don't like the idea of suppresing my whole immune system permanently to control a disease that only affects one organ.
Posted 1/7/2017 12:44 PM (GMT -5)
Well the only site-specific immunomodulator approved for ulcerative colitis is entyvio. It gut-specific, suppresses just the immune system related to the digestive tract.

I'm on 6mp and remicade, both whole immune system suppressing and I've had no issues due to it. No side effects either after 3 years on them.
Posted 1/7/2017 2:04 PM (GMT -5)
How long on the enemas?
Posted 1/7/2017 2:30 PM (GMT -5)
I've been using the enemas for months. But recently I have been using them for two months, every day, since november 2016.
Posted 1/8/2017 11:45 AM (GMT -5)
Doesn't the heavy duty immune suppression drugs seem a bit too much for only 5cm of ulcerated Proctitis? I'd definitely get a colonoscopy done before I took any stronger drugs to see exactly what I was dealing with. It may not be just Proctitis anymore.
Posted 1/8/2017 12:09 PM (GMT -5)
Hi....what did yhe doc mean that the inflammation is in a place where the enemas don't reach? How high exactly is the inflammation?

Have you tried steroid enemas or suppositories as of yet? If not, you should.
What country are you in?

I agree that yiu do need to have a colonoscopy once you are a bit more stable..especially to see if you have other areas of inflammation.

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