C.Diff and Microscopic Colitis- Did FMT

[iriechic]

Hi fellow C-diff sufferers (post and present),

I have a complex situation and would like some opinions. I was diagnosed with colitis (microscopic colitis- symptoms of chronic diarrhea) in Feb. 2012. I have had a difficult time dealing with that. I took Entocort (steroid) to gain remission. The remission lasted 6-7 months, then I acquired c.diff. You see the problem is, diarrhea is pretty normal for me unfortunately. When I learned I had C.Diff it was surreal because I thought it was just a microscopic colitis flare....but it obviously was the c.diff infection. I was Rx'd Flagyl for 14 days. I then saw a GI, whom specializes in fecal transplants, because I suspected I still had C.Diff. He Rx'd Xifaxan for 12 days, then 2 days off it, followed by colonoscopy, biopsies, and fecal transplant. I had fecal transplants July 1-3. The diarrhea has not gone away so I'm always concerned that it's still C.Diff. I hate the worry. I had a PCR test return negative and a cytotoxins test return negative last week. I am on Entocort again to try to bring my underlying microscopic colitis in remission. Should I be stressed that the C.Diff tests were inaccurate because I continue to have the same diarrhea symptoms (and c.diff tests are infamous for not always being accurate)? I am so stressed and need support. I feel like crying all the time and I'm at my wits end with diarrhea. I have diarrhea in the am and it's usually two or three times, pretty large volume. I can't decipher one smell from another smell. I wish I could just relax but this is freaking me out! I'm 34 yr. old, married with a 1.5 yr old and 5 yr old. I just want to feel normal and worry if I ever will. Help, please!

[seekingcure]

I don't really know anything about microscopic colitis, but there are some on here who have it and I'm sure one of them will chime in soon. I can tell you that the PCR tests are supposed to be very accurate, so if you're testing negative, I think you can trust that it's most likely an accurate result. The old toxin tests were the ones that were not so accurate.

I have had IBS for years myself and prior to c-diff, my D was only in the mornings, numerous times every morning, but then I was usually okay for the rest of the day, unless I ate something that seriously didn't agree with me. But with the c-diff, I am going all day long, waking up during the night to go, etc., so it's totally different from the IBS. I also have had other symptoms with the c-diff that I did not have prior, namely heart palpitations, tachycardia, eye redness and irritation. So I'm thinking if you're only having D two or three times in the morning, it is likely not c-diff. Did you have any other symptoms when you had active c-diff that have now resurfaced that are different from the symptoms you have with the microscopic colitis?

I'm sorry you're having such a rough time. Must be tough with two little ones to care for also. Hope you get things sorted out soon and start to feel better.

[iriechic]

Thank you for taking the time to respond to me. It really means a lot! It helps put my mind at ease to think that the PCR is accurate. My GI said that my C.Diff was mild. I never had a fever, vomiting, it never woke me, no abdominal pain, or anything really beyond diarrhea (1-3x day, with the exception of a couple days that were 8-10x). I did have dizziness and fatigue with the C.Diff but my microscopic colitis, while flaring, is fatiguing. I noticed foul smelling D once I began the Flagyl, but not prior. The reality that C.Diff can be missed with tests and can relapse is enough to drive anyone nuts. My Golden Rule insurance company uses Lab Corp as my in-network lab; however, Lab Corp does not offer the PCR. We had to convince Golden Rule to cover the PCR testing at Quest Diagnostics, as it was a medically necessary. I'm not sure if I can have that test repeated/covered again if the first PCR comes back negative. Do you think I need more PCR tests? If so, how often?

My only symptoms now are anxiety, tired, ongoing D. My IBD GI, whom did not perform the FMTs, said it's like I added salt to the wound which certainly seems true. An IBD alone is enough, complicating it with C.Diff is a nightmare. The kind GI whom performed my colonoscopy and FMTs was very upbeat about my predicament. He said my colon looked good, the four biopsies did reveal inflammation/white blood cells. But for me, that's not surprising with MC. I didn't have any visual signs of C.Diff (no white patches, no pus, etc.). He felt very confident that the fecal transplant would certainly knock out any C.Diff. I really am blessed to have an GI whom perform FMTs in my area. I held all three transplants for over 10 hours, which he thought was a good sign. I'm praying the Entocort helps the D subside soon. I am returning for 3 more transplants in 8 days. I love getting the transplants because it just feels healthy. I highly recommend it to anyone suffering with C.Diff. I was on abx for 32 weeks during my last pregnancy due to recurrent UTIs. That definitely triggered the MC (and wiped out my gut flora), but C.Diff tests (8 of them) were always negative until this past May. I tried rectal insufflation with O3 to try to tame an MC flare and wound up with C.Diff.

Thanks for your well wishes. I wish you the very best of health! It would be wonderful to hear from others whom have MC. I feel so alone with MC and experiencing C.Diff. Thank God for loving grandparents, my in-laws, they've really stepped up to the plate to help with the kids.

[gm37]

Iriechic,
I am sorry that you have added c-diff to your illnesses! It is a pain.
You really are blessed with such an attentive and informed doctor! I think he is right that the c-diff has irritated your other GI problems. I would bet the c-diff is gone and you are just battling the after effects. It takes a while to get to feeling better.
I hope you begin feeling better soon. Hang in there.
Anne

[iriechic]

Thank you so much Anne! Your support is very encouraging. Anyone who's experienced C.Diff knows how much it means to receive unconditional support. So, I thank you from the bottom of my heart.
BTW, I love your name. My precious baby sister, now 30 yrs. old, is an Anne too!

[beth22]

If you have an underlying IBD condition, c diff can definitely trigger it. We had a few posters who got Crohn's as a result of c diff. One lady had it in her late teens and it went away or into remission and came back very badly after c diff. She had to be fed with IV. She went to Mayo clinic and was diagnosed, started meds for Crohn's and last I heard from her she is doing fine. I have SIBO/IBS from c diff and have had intermittent elevated levels of lipase (pancreatic enzyme), so it can certainly do its damage. Also, Flagyl can be quite hard on the intestines.

I think with a negative PCR, which is very accurate and having had stool transfers, the likelihood that it is c diff is not great at all. Even if you had it low grade, you are getting more transfers. DOes your doctor do these as enemas,or did he start with a colonoscopy transfer and then follow that with enemas? You are lucky indeed to have found him. Does he practice in the US?

If you got the MC into remission before, then I am sure you will again. You have to realize that your intestines have been traumatized and it does take time for healing to take place. Wishing you all the best.

[iriechic]

Hi beth22,

Thanks for your added insight. My intestines definitely do feel traumatized from this experience. I hope they start to improve shortly. My doctor is located in Tampa, FL. He did a colonoscopy transfer first and then followed with two rectal enemas. I highly recommend him (not sure if you can share doctor's names publicly on this forum?). I'd be happy to share his name if allowed to do so?

I really would feel alone if I didn't have the support you guys have given me. Thank you for the encouragement and well wishes. I wouldn't wish C.Diff or IBD/digestive issues on anyone ever. It's just awful. Wishing you the very best!

[gm37]

We love to have the names of good doctors!
First, ask his permission to post his name here. Then post his information under the Doctors section.
Anne

[amyc]

If your C diff tests are coming back negative and the transplants didn't help your diarrhea, I'd probably consider not doing the 3 additional transplant procedures in 8 days. Why not just let your gut calm down for a while instead of manipulating it more? Especially if you have to do any kind of bowel prep, which is pretty irritating to the gut as well.

There is no scientific or medical reason to undergo ozone insufflation of your colon, and you may have inadvertently discovered that whatever "health center" you used for that treatment didn't properly sterilize their equipment since you contracted C diff from the procedure.