Newbie Help

Hi, I am new this to forum. I just found it and am thankful! I was just diagnosed with UC this past summer. Throughout HS and College I was always told it was IBS. Then it went away, so maybe it was. Last year I started getting horrible stomach aches and bathroom problems. To the point where sometimes I was just going an it was not even stool!

Anyway, I have been back and forth to the doctor, who I love (he treated my aunt for rectal cancer). He did a Colonscopy and confirmed my UC and since then its been worse. I am on mercaptapurine and Lialda.

I ended up getting C Diff infection from antibiotics. Still on a 7 week course to fit that. BUT have been getting flares up a lot more often. At least once a week if not twice. It is usually at night or in the middle of the night. A lot of pain and diarrhea.

I am at a loss, it totally interferes with my social life, I am a teacher and I am constantly nervous at work. You cant exactly just leave the room when you need to use the bathroom. I dont know what to do anymore.

I am going for a Sig tomorrow and I just feel no hope. I can not figure out if a food causes it. I rarely ever eat meat any more because I always get sick when I do. Then I was staying away from pure dairy.. I just don't know.....

Any advice? Help? Suggestions?

Welcome!

Are you having blood? Mucus?

I second what Laura said. But rectal meds do help a lot with inflammation at the bottom, which is the first to develop and the last to go away... and inflammation at the rectum, the bottom of the system, causes a huge amount of discomfort. The sig will help tell how much of your colon is inflamed, at least as far as the sig reaches.... but even if the inflammation goes up fairly high, I have found the rectal meds and getting the bottom to calm down to help me a great deal.

We all define "flares" in different ways - for me a flare is what I call it is I'd have urgency/frequency/blood for at least 4 days in a row. But, whatever - because your issues are at night, that's a sure indication you're flaring.....

If you could take a good probiotic, with a variety of strains, and space it as far apart from your C Diff medication as you can, that really might help. The probiotic would help repopulate your gut with the helpful bacteria.

Foods.... when I'm flaring, some foods make my symptoms worse, but when I'm fine I can tolerate most things as well as my non-UC friends. We UCers are all incredibly different in this regard, so a food journal is the way to go.

Don't give up hope! You can learn a lot here... and you should look up some of the info from the ccfa, if you haven't already. Several of us have jobs that are uninterruptible....... it is doable. But first you need to find the meds that work for you.

Again, welcome, and - Keep us posted!

I googled "acitametaphine" and came up with the active ingredient in Tylenol..... that is not a probiotic. Are you sure you're on a probiotic?

Yes, Lialda, Asacol, apriso are all 5-ASA meds. I take Asacol 4 times a day, 4 pills each time. Lialda, being a once a day extended release pill, is more convenient. (I've not taken apriso.)
People do respond differently to the different formulations. My son is also on Asacol and is in remission.... we asked his GI about switching to Lialda, and she didnt encourage the idea because he is doing absolutely perfectly now.
So, sometimes if one 5-ASA isn't working for you, another might.

Sounds to me as if you are a lot better than you were.... but even a bad bathroom time and pain once a week isn't good! Sounds as if there is still some inflammation in there somewhere.

A lot of us stay on the rectal meds at least twice a week, because research shows that we're likely to stay in remission longer, and also, the 5-ASA rectal meds even just twice a week cut down on the long-term cancer risk.

Have you tried a fiber supplement? For some, myself included, they help to bulk up but also soften the stool (does that make sense? lol) making it easier to pass. And it's not exactly another med, it's more like a food.....I take Metamucil and find it helps my comfort level a lot.

Gosh, you have enough going on! I hope you can calm things down gut-wise.

With me it makes me go less! It kind of glues the poop together so there isn't that constant little bit of poop wanting to move through. And though some folks have found the fiber to not help, I have found it to decrease my intestinal spasms and involuntary straining-type pains when flaring.

We're all so different in our experiences.... 2-4 hours seems like a long time to me.... but my son complains of pain and has missed so many school days because of morning pain.

Acidophilus is a good start - I find a probiotic with more strains in it to be helpful. The acidophilus has likely been helpful to counteract the antibiotics, but my GI keeps telling me that one with a high bifido count has been shown to be helpful for UC.

I know what you mean about taking a lot of stuff - sometimes my pill container looks like a lunch serving in and of itself! lol But I figure, if it helps, "someday" I can cut down......

Just back from my sig. After waiting for over 2 hours, I am not a happy camper!!! It took all over TWO MINUTES. Anyway, I am not flaring!!! I don't get it. He said that I am not inflamed at all. So all this bathroom problems and pain can not be from the proctitis?? What the heck! I asked him if it was possibly still the CDiff and he said it might be but very rare. I was on a 7 week taper of Vancomycin (Vancocin) for the CDiff I am almost done with it. I am changing from Acidophelis to Florastor. Ever heard of it?

I just don't know what to do. If it is not my proctitis. And I am on antibiotics for the CDiff, what is it?! And what do I do?

He told me to finish the antibiotics for CDiff and start on the Florastor (Which I can not find in any store, I will have to look online) and call him next week.

I am very frustrated and upset about all of this. Even though I am happy he didnt find anything during the Sig today. :-(

Yes I had a colonoscopy in July. That is how I was diagnosed with UP.