Round 4?

[beth88]

Hello, just joined today after feeling lost about my current condition. Allow me to introduce myself. I figured since there is going to be TMI in my post, I should start here. I know I can't get actual medical advice from this forum, but I would just like to hear everyone's thoughts.

In January of 2015 I was diagnosed with severe ulcerative colitis at age 26. I was on steroids and another less harsh med to get it under control, and then I started Humira injections last August to keep it under control. Last May, I got a kidney stone for the first time and it caused a UTI that was treated with an antibiotic. Shortly after Christmas I tested positive for c diff for the first time after experiencing symptoms similar to a colitis flare.

I was put on vancomycin for 10 days, a short course. Once that was done, I was okay for a little less than a month. Symptoms returned and I tested positive again at the end of January. Did another short course of vanco. That time I made it 45 days without symptoms, only to have them show up again in early March. This time, I did 56 days of vanco with a taper. I finally finished this course on June 1st. Things started to go downhill in the last week of the taper.

Every day since then I have slowly but surely gotten worse. I'm having a decent amount of mucus and some of my stool is fairly red. No drops of blood yet, but it looks like I'm dangerously close. Both of those symptoms are telltale signs of an ulcerative colitis flare, but I remember thinking that's what I was experiencing right before we found out I had c diff instead. Frequency is also increasing each day.

I'm just so confused. I don't know if I need to worry about a colitis flare or c diff or both. My doctor said he doesn't want me to be tested again so soon, because pretty much no matter what, it's going to come out positive. Everyone says you need to take care of c diff right away, so what's with the "wait and see" idea now? The last time I talked to him was last week, so I haven't yet told him about the mucus. The next time I actually go see him is in the middle of July. I'm sure I'll be calling him in the next day or two, but in the meantime I'm trying to find out if c diff can cause mucus and small amounts of bleeding or if that can only be caused by a UC flare.

I'm just so tired of this. I want to live my life. Yeah I know, preaching to the choir! Thoughts?

*I should mention I'm taking a probiotic that has lactobacillus and bifidobacterium (the two strains my first GI doc recommended) and I recently started Florastor because it's known to help with c diff. But my mom thinks the Florastor is the problem. Ugh.

[susant]

I can tell you I didn't tolerate florastor. I don't tolerate any probiotics unfortunately! Hoping that's all it is for you too!

[NanciT]

Hello Beth88 and welcome to the site! Please read the first thread about new posters.

It's difficult to determine if symptoms are Colitis or CDIFF, both can have the same symptoms. If the GI wants to hold off testing, I would explain your concerns. There is often "waiting" time with CDIFF but the tricky part for you is determining weather it's a flare or CDIFF. Most GI's try to be conservative and not over treat. If you read under CDI you will find a great deal of information. We use the 3 day rule here if you are having watery diarrhea several times a day for 3 days we ask to be tested. It's going to be up to your GI to determine what is going on.
I wish I could be of more help, but you are dealing with 2 illnesses. We have had other posters with UC so if you research the site by putting it the box above you may find some threads on it.
I also had issues with Florester, ask the GI if its ok to cut back and see if its irritating things.

Sorry you are going through this, UC is hard enough and adding CDIFF makes it so very difficult.
Take care and let us know how you do.
NanciT

[beth22]

I could not tolerate Florastor at all. It was the worst for me and I could only take a small amount of probiotics. I would stop the Florastor. I'm not even sure if you should be taking it if you have UC, as it can get into your bloodstream and go systemic. Check with the doctor on that one.

Yes, with c diff you can have both mucus and bleeding. I did and so have many others.

If you do test positive, talk to your doctor about FMT. I know they are doing trials with it for people with UC only, but for c diff the FDA allows it. We had a poster who had both Crohn's and c diff and the FMT cured her of both of these. I don't know what any results are of the trials for UC and FMT, but if you go online, you might be able to find out something.

[amyc]

Another vote for FMT.

[beth88]

susant wrote:
> I can tell you I didn't tolerate florastor. I don't tolerate any probiotics
> unfortunately! Hoping that's all it is for you too!

That might be it, although I haven't had problems with other probiotics. I didn't take the Florastor today. This morning was worse than the last few, but then I did pretty well all day. Went in the evening and it was still mucus, but we'll see if stopping the Florastor helps. If it does, I'm gonna get a big "told ya so" from my mom!

[beth88]

NanciT wrote:
> Hello Beth88 and welcome to the site! Please read the first thread about
> new posters.
>
> It's difficult to determine if symptoms are Colitis or CDIFF, both can have
> the same symptoms. If the GI wants to hold off testing, I would explain
> your concerns. There is often "waiting" time with CDIFF but the
> tricky part for you is determining weather it's a flare or CDIFF. Most
> GI's try to be conservative and not over treat. If you read under CDI you
> will find a great deal of information. We use the 3 day rule here if you
> are having watery diarrhea several times a day for 3 days we ask to be
> tested. It's going to be up to your GI to determine what is going on.
> I wish I could be of more help, but you are dealing with 2 illnesses. We
> have had other posters with UC so if you research the site by putting it
> the box above you may find some threads on it.
> I also had issues with Florester, ask the GI if its ok to cut back and see
> if its irritating things.
>
> Sorry you are going through this, UC is hard enough and adding CDIFF makes
> it so very difficult.
> Take care and let us know how you do.
> NanciT

Thank you! Just read the new posters thread.

I'll definitely do a search for other UCers. I'm really surprised to hear that some people can't tolerate Florastor. I just thought it was like any other probiotic and could only be good for you, but I was naive to assume that. I didn't even tell my doctor I was taking it; I just heard it was the best thing to protect against c diff, so I went ahead and tried. I stopped taking it today, so we'll see what happens.

[beth88]

beth22 wrote:
> I could not tolerate Florastor at all. It was the worst for me and I could
> only take a small amount of probiotics. I would stop the Florastor. I'm
> not even sure if you should be taking it if you have UC, as it can get into
> your bloodstream and go systemic. Check with the doctor on that one.
>
> Yes, with c diff you can have both mucus and bleeding. I did and so have
> many others.
>
> If you do test positive, talk to your doctor about FMT. I know they are
> doing trials with it for people with UC only, but for c diff the FDA allows
> it. We had a poster who had both Crohn's and c diff and the FMT cured her
> of both of these. I don't know what any results are of the trials for UC
> and FMT, but if you go online, you might be able to find out something.

Very interesting hearing about others' experiences with Florastor. I made sure not to take it this morning. I think it is already helping, but I'm not sure yet. You're right, I shouldn't assume I can take any probiotic. I'm glad to hear that those two symptoms don't always have to mean a UC flare.

Yep, my doctor did bring up FMT. I may very well end up going down that road.

[beth88]

amyc wrote:
> Another vote for FMT.'

It does sound promising. My doctor mentioned it to me and I may be getting closer and closer to that point. I got myself "established" so to speak at the University of Chicago, so I'm sure that's where I'd have it done. That's the part of it I'm nervous about, going all the way to the city when I'm still finishing up the prep. Not fun to think about. My doctor says one day it will be in capsule form...I'm wishing that would happen right about now!

[roy]

Beth88
Please don't use the quote feature.
It makes the thread untidy and uses up the space without adding any info.
It also means we lock the thread sooner as each thread is locked after it reaches 2 full pages.
Just mention the posters name.

[NanciT]

There is a capsule form but they can have complications. Search the site and you will find information on them
NanciT

[cruzman]

FMT helped me get rid of c-diff 3 times talk to your DR. look up openbiome.com they give you a list of doc in the state you live in to get it done
ps dont give up!!!!!!

[ResearchGrandma]

I agree with the others who said you should probably stop the Florastor if you think you are having bleeding until you check with your doctor. It might be wise to stop all probiotics until you can check with your doctor. There have been rare cases of both yeast and bacterial probiotics gaining access to the blood and causing systemic infections.

[beth88]

cruzman: That's great but, wow, you had to get it 3 times? Knowing how prone I am to c diff, I hate to think about going in for FMTs frequently!