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Ulcerative Colitis
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Posted 1/27/2019 3:29 AM (GMT 0)
Hello all, this is my first post, been doing alot of reading and finding great information.
Im Matt, 29 diagnosed in August with UC, basically was pretty bad at that point, got on pred and Meslamine for a few months, had it SORT of under control for the months following i got it to somewhat sort of formed stools in the morning, 4-5 times, didnt eat all day til lunchtime at night at work an normally make it home and go a few times before bed.
Well this last month it has been stricly diarrhea, 10 times at least sometimes 15 because i now suspect i have Proctitis, had rectal pain for 3 months or so now but the last month has been worse, spasms, a little bloody mucous SOMETIMES, gas hurts, some days run to the toilet many times an nothing comes out, and feel constipated, does this sound like Proctitis?
I started Humira 9 days ago, no effects yet as i dont suspect any, but this last month i have felt OFF as i literally have zero energy, sometimes aches in my legs, im off work an its hard to just function to do NOTHING.
So i see my DR Tuesday, about 10 days ago when i asked for more steroids he said he didnt feel comfortable but i need to make it more clear i guess as its been pretty bad since i seen him last, i think im going to ask for Blood work to check for C-Diff, he did prescribe me 10 days of 25mg Hydro Supp, is that enough to take down Proctitis if that is another one of my issues? Just wanting some opinions as my FMLA is running out, flaring 6 months now an some days cant even make it to my bathroom in time before i have an accident.
Posted 1/27/2019 4:13 AM (GMT 0)
Hi Matt I'm Steve. I got UC back in 1985 at 26 yo. I'm now 60. Had colon removed last year. This disease has a mind of its own. What u might think u have u don't once u get scoped. What med worked for me doesn't work for u. When u c your Dr Tuesday tell him all that's happening. Ask questions. Most all people here have been or are where your at now. It's not fun but between Dr and people here we can try to get u on right track to remission. Good Luck
Posted 1/27/2019 4:22 AM (GMT 0)
Thank you Steve, it is rough, im only 6 months in but NOTHING has been consistent, i would think if im having 10+ movement and diarrhea everyday the DR would give me more pred, idk what else to do i guess but insist, how is one to work when i cant even make it to my own bathroom in time? Frustrating
Posted 1/27/2019 5:35 AM (GMT 0)
I'm a contractor in New York and I know the anxiety feeling in morning and during the day. Can I make it to job without going in my pants??. I had 4 total accidents before surgery so I know it's not fun. I was never on Humira but I know it can takes many weeks to kick in. Pred I was on many many times. How many MGs of pred are u on now??? Yea your in a nasty flare with 10+ BMs. Hopefully Humira helps sooner then later. Again tell Dr everything your going thru and keep checking in here to let us know how your doing.

Post Edited (3timechamp) : 1/27/2019 7:53:44 AM (GMT-7)

Posted 1/28/2019 2:35 AM (GMT 0)
If you were weak with legs hurting before Humira, them possible anemia. The Humira would need time to work. It is possible another course of Pred would let the Humira get a good foothold. Also, it may give enough relief for you to work.

Proctitis is just UC in and above the rectum. It is not really something extra you get. But if the sigmoid and rectum are really bad, the rectal meds can work better than the oral mesalamine. Humira works on both equally.

You might be able to use light doses of Imodium to help get through the day. I used it a couple time a week for about 6 months when things were really bad.

If not pred, maybe Uceris. Less side effects.

good luck
Posted 1/28/2019 3:05 AM (GMT 0)
Humira should start helping in the coming weeks.

In the mean time, you can try max dose of oral mesalamines, and/or mesalamine suppositories or enemas. Data shows the mesalamine suppositories work more often than the steroid suppositories. I think the same is true for the enemas.

How much steroid were you on last year after diagnosis? What dose and for how long? Steroids can help jumpstart remission, but they can cause lots of side effects. As suggested by DBwithUC, Uceris can work there (it's a steroid that is more topical-acting) without the side effects of prednisone, but it costs a lot more.

If the max dose of mesalamines (oral and rectal) aren't enough while you wait for the Humira to kick in (assuming it's going to do so), then steroids of some sort are appropriate.
Posted 1/28/2019 3:20 AM (GMT 0)
Thank you both for the replies, yes i am hoping the Humira starts to really kick in, from August to January i was on probably 5-6 different sets of Pred, sometimes starting with 40mg to taper, another time just 20mg a day for 2 weeks, it has been sporadic. I think when i see him Tuesday im going to insist on more, i should not be going so many times with some blood an mucous without some type of steroid to help the Humira
Posted 1/28/2019 6:44 AM (GMT 0)
Most doctors don’t like prednisone, and for fairly good reason—long term use is not good; multiple courses in a year are not good. So many try to limit it unless you are really, really suffering, which I know is very frustrating.

I wound up in the hospital before my doc would put me back on pred for a third time this year.

Just be honest with your doctor about your quality of life. They may want to try Uceris/Budesonide. In my experience, it’s better with mild flares and can help knock back severe flares, but not in any very significant, “back to normal” way. Much of this stupid disease is just biding time while suffering, walking a line between what you can handle and what you can’t. It is dramatically different than just about any other malady I’ve ever experienced, most of which can be symptomatically relieved to a greater extent. Normal will come with time, but you’re unlikely to get it when you want it, which is now, obviously.

That’s not to be dire. Once I accepted that that’s just the way this goes and I need to be patient, it made it a bit easier to deal with. Imodium can help a bit with functionality, tho I found I always paid for it the next day. GasX can help a bit with cramping.

Rectal meds can be very helpful in the interim.
Posted 1/28/2019 4:58 PM (GMT 0)
Yes, ask for a stool test to check for c diff.

I would insist on at least a 2-month course of prednisone, starting at 40mgs while you wait for the humira to work. Humira usually shows at least some sign of improvement within 6-weeks of starting it (sometimes in 2-3 weeks, hope for the best, but plan for the 6).

I would be at the maximum mesalamine dosages, 4.8 grams a day orally, and 4.0 grams with mesalamine enemas.

I would ask about starting immunomodulators, azathioprine/6mp/imuran.

It sounds like your case is pretty severe.

Ditto protitis just means rectal inflammation. Nothing new for us. We all have the most severe inflammation within the rectum.
Posted 1/30/2019 5:09 AM (GMT 0)
Thank you guys for the replies, this forum is amazing. So went to DR today an as i suspected he suggested hospitalization, so here i am, feeling a little better already i think due to the fluids an being severely dehydrated. Doing enemas here an when i get out, an another dose of Pred i get so hopefully things start to look up at Humira kicks in, an got approved off work til at least March 1st so i cant complain!
Posted 1/30/2019 3:20 PM (GMT 0)
Keep us updated on your progress.

Sounds like in-patient at your local hospital is the best place for you to be right now. Staying hydrated can be a challenge for us when we are having diarrhea many, many times a day. Getting some fluids via IV can help you feel better and be properly hydrated. You will get more attention and followup from your gasteroenteroligy team while there, and they will make sure your treatment is correct, and keep in-touch.

Are they giving you any IV steroids while you are there?
Posted 1/31/2019 7:26 AM (GMT 0)
So i deff tested positive for C-Diff, which is kind of a relief, maybe my flare WAS getting better except the past month which has been terrible, deff started Humira while having C-diff which DR and me just thought it was bad flare, got worse since the humira to, supposed to take my 2nd batch of Humira Friday not sure what the DR will want, had diarrhea terrible at hospital all day yesterday, today no diarrhea just many trips with nothing and i feel maybe 10% better lol so we are on the right path at least
Posted 1/31/2019 7:40 AM (GMT 0)
If you tested positive for c.diff, your docs will probably put you on vancomycin soon.

There's debate about whether you should continue your Humira while having c.diff. Since you just started it, there could be even more debate. They might want the c.diff eradicated before you continue with Humira. It might even be that once you get rid of the c.diff, your UC will be mild enough that you don't need the Humira, but that's impossible to know right now.

There's also debate about whether to put a UC patient with c.diff on steroids. From what I've heard, most docs lean to avoiding steroids when a patient has c.diff, unless the UC is very active and hard to control with other means.

But c.diff in a UC patient almost always means vancomycin.
Posted 1/31/2019 1:35 PM (GMT 0)
I'd say good news, but I know C Diff totally sucks, sorry! At least you now know your enemy, and c diff can be cleared with antibiotics, which you should be given soon. C diff is something we always have to eliminate as a possibility when we flare or we take a dramatic turn for the worse, as it so closely mirrors UC flare symptoms. And we are a lot more prone to getting c diff as UC patients, as a whole.

I believe skipping humira with an infection is the clinical recommendation, of course confirm with your gasteroenteroligist. Adding immunosuppressants (biologics like humira, thiopurines like azathiioprine/imuran, or steroids like prednisone/solumedrol) are like adding matches to dry tinder when it comes to infections like c diff, making an infection worse.
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