C diff and UC, looking to see if my experience is normal..

Hello,
I was diagnosed with UC a little over a year ago. The symptoms during the year had been honestly pretty mild.. my doctor had me on Lialda which never entirely got rid of bleeding, but I felt okay and was able to eat pretty much everything without a noticeable change in symptoms. My doctor was very confident that I had a very very light case of UC.

about two months ago I started getting cramps at work... It would hit suddenly and always took me aback. I brought it up to my doctor and he gave me a weeks worth of prednisone to fix things. Pred worked about the week I was on it, (again bleeding never went away). Needless to say the cramping came back, at first it didn't signal urgency, I would use the bathroom before work, during my lunch break, and when I got home for the day.. pretty manageable. A few weeks in the cramping started to get worse and worse and urgency became part of the equation. I started skipping meals so that I could go to work and not die during the day... I mainly would eat a small meal when I got home for the day. Bleeding began to get more intense as well.

I ended up being hospitalized on the 8th of this month due to dehydration and blood loss, I also had malnutrition. I had lost almost 20 pounds in the two weeks leading up to the hospitalization. ( I didn't have 20 pounds to loose XP) They gave me IV steroids twice before test results came back positive for C diff. I have not been on any antibiotics in years, the doctor said that since I have UC I could have picked it up anywhere..
They immediately stopped giving me steroids and started me 14 days of Vanco to clear up the C diff. They also started me on Humira to fix the UC..

It's now the 28th, I finished the Vanco, I have had a total of 7 Humira Shots so far... the cramping has gotten less painful but I am still bleeding so much, I also am now in the bathroom every 40-60 minutes without fail. I don't feel like anything they gave me is working... Is it normal for Vanco and Humira to take this long to kick in? I keep calling the doctor and they tell me everything is normal and to wait it out... I'm loosing hope.

Thank you in advance for any input.

Have they re tested you to see if the C Diff is gone?

The believe in a very mild case of UC and bleeding never stopping is not consistent. Unless the bleeding was coming form an internal hemorrhoid something besides a uc ulcer.

You should work in future to find out if the bleeding is due to friable tissue, UC ulcer, or something else.

If the bleeding really is UC, and it is in the lower sigmoid or rectum, then you may need rectal meds to get it stopped. Oral meds do not reach rectum too well.

With UC, the gut microbes are in dysbiosis (all screwed up), so it is reasonable that some people have less protection against c-diff even if they do not take antibiotics.

Once you get c-diff it can be very difficult to get rid of. Whenever you have symptoms that do not respond to meds - especially pred - c-diff should be suspected no matter what tests say.

The Humira can take a while to kick in for some people. Some report benefit the 1st week, but many report 6-12 weeks to see good benefit.

If you are on Humeria for a while, and the symptoms and bleeding continue, another antibiotic for c-diff might be worth a try. Personally, if I suspected stubborn c-diff, I would seek FMT. I would prefer pills form ubiome.com, or enemas for a hospital, but I would find a donor and do it myself if I had to. Read up on it - many people have done home FNT. There is some risk - especially if the donor is not tested for infections, but it had over 90% cure rate for c-diff. For some, repeat applications also help UC - but only for some.

good luck

Sorry to hear about your recent struggles with C-Diff. I'm working through my 6th case of C-Diff at the moment.

Like was already stated, C-Diff can be very tough to get rid of once you have it. In my experience it gets harder to get rid of each time you get it.

For your first case of C-Diff they usually start you off with Cipro, it's a antibiotic to fight normal infections in your intestine. Then they try Vancomycin which works for most people. There are two different dosages of Vanco 125mg and 250mg I believe. If it keeps coming back they should up you to the high dosage and have you taper down. If the Vancomycin doesn't work then Dificid is the next step, it's a very expensive oral tablet medication designed specifically to fight C-Diff. There is an assistance to help with the cost if your insurance doesn't cover it completely.
Then there is FMT (Fecal Matter Transplant), which has proved to be very effective in treating patients with C-Diff.

I'm surprised your GI has kept you on Humira while you have C-Diff. I always push out my Remicade infusions while I have C-Diff because these biologics lower our ability to fight infection.
I can't take Vancomycin anymore, the last time it caused my UC to flare. No fun have a flare and C-Diff at the same time.
Personal opinion, you should pause Humira until the C-Diff is gone. Have a colonoscopy so they can figure out if your UC is flaring. If it is, then take Prednisone for the flare and Vancomycin or Dificid for the C-Diff. Start the Humira again after the C-Diff is gone and as you taper the Prednisone.
Make sure you are eating a low residue diet. Your colon needs to rest as much as possible. No NSAIDs either, just Tylenol for the cramping pain.
Avoid sugary foods at all costs, the C-Diff spores thrive off of sugar.

Good luck, hang in there. Was right where you were last summer.