Need Advice 7 weeks post Vanco

[lunasdad]

I have been posting on the site for several weeks at this point so do not want to rehash my issues. Basically I had been thru 2 rounds of Vanco treatment. After my second round my stomach felt great and after three weeks things kind of went downhill. I had a positive PCR test but negative for toxin. My gastro told me to take 10 days of Dificid and see what happens. My CDIFF specialist said wait an see. For the last 2 weeks I have been gluten, dairy, sugar, egg and corn free. I have also tried to reduce my sugar intake. I have seen some slight improvement. In the 2 weeks there have been bouts of WBM, but never more than once a day. I am not feeling as exhausted and the gassy, bloated feeling have calmed down a bit. My diet is basically oat meal and banana in the morning, grilled chicken sweet potato and rice for lunch and chicken and potato or gluten free past for dinner. I've tried to add a few items which has caused my stomach to be upset. I had a follow up with my GI today. He told me that he strongly believes that a course of Dificid would be warranted in this situation because I am still having the loose stools and urgency when I try to add to my diet. Wondering what others would do in this situation? Should I continue my course of eating very basic or should I try the Dificid?

[beth22]

I had similar symptoms post c diff and it turned out to be SIBO. I would make sure that it is the c diff that is causing your symptoms.

[lunasdad]

I am not sure how to make sure it is CDIFF. That's the tough part. How did you treat the SIBO?

[beth22]

With Xifaxan which is also effective against most strains of c difficile, although not all.

[lunasdad]

So I am really thinking I need to try the Dificid. I haven’t had a normal BM in almost a month. For the last few days I just got these small flakey pieces and have WBM mixed in. I don’t feel as bad as I have felt but the urgency and gas pain are still there. I have been trying to follow the three day rule and avoid taking any meds but the fact that I haven’t really improved in a month makes me think this is cdiff lingering.

[Ril]

After c diff there is a “new normal”.
You are negative for toxins which means no active c diff.
You are only going to the bathroom once/day.
You have 2 conflicting dr’s opinions and one is a c diff expert. You might want to touch base with the expert again to see if his opinion has changed but it seems as though you have made up your mind.
We cannot give you medical advice, only tell you what we have learned, experienced and tried.
The ball is in your court now. I know it is tough and frustrating.

Best of luck and feel better.
Rita

[brandine]

As Ril says, we can't offer medical advice, but we can share our own experience/knowledge. What you're experiencing sounds like recovery. I was still experiencing tough symptoms 7 weeks post Vanco... I started to feel better closer to 12 weeks post vanco. Also, everything I've read (including scholarly articles about c.diff) advises against treating unless symptoms are persistent. Treating with more antibiotics, if it isn't full-blown c.diff, is problematic in its own right. I hope that you feel better in the coming weeks! Try to treat your body gently with good, simple, and bland food (but satisfying... my favorite was roasted chicken tenderloins w/lemon, olive oil, a little broth and buttered rice... also hot almond milk chocolate made with pure maple syrup and cocoa powder), and get lots of rest. I also advise anything to get your mind off of the symptoms. Our worrying only makes it worse. Take care of yourself, and try to be patient. Time will pass, and symptoms should get better. I'm feeling so much better than I was back in July, when I was 8 weeks post vanco. It takes a few months for many of us, and you haven't crossed that threshold yet.

[roy]

Putting a serious chemical that was fast tracked and has not been 100% proven to be safe into your system in the hope of "curing" symptoms that are very unlike c.diff sounds like madness to me!

[lunasdad]

I understand and appreciate the guidance. I really do not want to take any more meds at all. The last 3 days have been rough with my stomach (I also turned 40 on Friday). Friday I had 2 small BM”s, little Flakey pieces and pencil stools. Saturday Morning had the same followed by WBM right after I had Oatmeal and a Bannana for Breakfast. I took Imodium as I needed to be out of the house for hours. Had my first movement this afternoon shortly after lunch, again small mushy flakes. All the BM”s come with urgency. In the past Imodium would cause me to have solid formed stools, now that doesn’t work. My stomach is upset all the time. This really sucks. Also, my GI, who I like a lot and have been seeing for years thinks I should try the Dificid, my CDIFF guy at guy at Sinai should who does the FMT and works with my GI said I should wait and see.

[brandine]

I would listen to your C.diff doctor and wait and see. It sounds like the GI doctor isn't familiar with typical c.diff recovery. I found this lack of knowledge to be common.

[lunasdad]

I has occurred to me that I have posted some very negative stuff about how I am feeling over the past few weeks on this site. The last few days I have been reflecting on how I am feeling and decided NOT to take the Dificid and see if I can fight this on my own. The good news is that I do not and have not felt bloated and gassy in the last few weeks which I think can be attributed to the elimination diet. My energy is pretty good, although some days are better than others. It has been a few weeks since I woke up with horrible cramps and having to run to the bathroom. I am really trying not to get upset by the fact that my bowel movements are all over the place but its still difficult to have to run to the bathroom with urgency after a meal (happened today at work). At this point I am taking amitriptaline and 1 Florastor pill at night and sticking to a strict diet. Avoiding all dairy, wheat and cutting down on sugars and caffeine. It is helping although its no way near normal. One of the main issues I am still having is that the pain and pressure in my rectum is really annoying and uncomfortable. When I get the urge to go, it is usually intense pain in my rectum that I feel and have to run to the bathroom. Not what I would call the "normal" urge. Anyone else felt this way I would appreciate any remedies you may have. I appreciate all the help and guidance on the site and will try and be a positive member to the community and try and pay it forward the best that I can.