Brittany's History (Nasogastric Stool Transplant)

[Brittany]

My story began on an evening in early October 2008. As I was driving home from work I suddenly got the chills. Before I knew it my teeth were chattering, my hands and body were shaking, and I was dying of thirst. When I got home I bundled up in a sweatshirt and sweatpants, but I was still freezing and when I looked in the mirror my lips were almost purple!! After a while I checked the A/C to see what was wrong and it was at 78. After a while I began to get muscle aches, sweats, and the cold turned to me burning up. Thus my two day 102/103 fever began.

That night fever was still my only sypmtom other than body aches, so I assumed I was coming down with the flu along with everyone else around me. How I wish that had been true. As I lay in bed trying to go to sleep I noticed that my heart was absolutely racing. At this point I started getting scared, but decided to see I how I felt come morning. During the night the pain in my abdomen began--more at first like there was a big ball in my stomach and every time I turned over it would shift to the other side right along with me. Early that morning the trips to the bathroom started, accompanied by pain that can only be described as searing, almost incapacitating. I have had IBS for almost 7 years at this point, so I just assumed it was my IBS acting up--and kept assuming that for about 5 days (my dr. called in Tamiflu as we still thought that was what was wrong). It's scary to think how quickly I went downhill; weighloss, dehydration, weakness, etc. Finally, in the middle of the night I typed in my symptoms on the computer and up popped "Clostridium Difficile Colitis". Immediately I knew. 1 week prior to the onset of these symptoms I finished a 7 day course of Ciprofloxacin.

Anyhow, after 2 rounds of Flagyl, 6 rounds of Vanco, a Dr. who I strongly suspect started to think I was making up these horrible symptoms (even with positive stool cultures), and -for me- the absolute worst pain I have ever had to endure in my life, I decided to travel to Duluth, Minnesota and have Dr. Rubin perform the Nasogastric Stool Transplant on me in hopes of ending my 9 month battle with this BEAST!

The procedure was so quick. He and his staff were the greatest. We were only there about an hour and a half total. The worst part is definitely when they have to try to get the tube down your nose and the back of your throat. But honestly, after everything I've been through it was a piece of cake! That was June 30, 2009. Today is Day #18 off of Vanco and (knock on wood) it still has not come back yet. My relapses have, in the past, occured between 4 and 14 days after stopping Vanco. It's too early to tell yet, I know, but I am truly hoping for a miracle.

Now, my IBS is still here and probably will be for the rest of my life. I guess having it helps to explain why, for me the worst part of cdiff is the pain--not frequent trips to the bathroom, which have been part of my daily routine longer than I care to remember.

Anyhow, I just want to say that throughout these 9 months, this website has been my constant companion. I've read almost every post here, while either laughing, crying, or honestly understanding what you guys are going through--right along with me. If it hadn't been for this website, I would not have even known about the stool transplant! In fact I asked my Dr's PA about it and she said that they had just heard about the procedure recently and her along with all of the nurses were grossed out. It makes me quite angry thinking about it. I'm only 26 years old and during the last 9 months I have been practically house bound, sick as a dog, I've had to quit my job (in lieu of getting fired for prolonged absence practically every month), my relationship has suffered (noone can truly understand what we go through unless they've been there themselves), etc. etc. etc...

The point is, why on earth don't more doctors perform this procedure? Or at least let their patients know that it's out there? I could go on and on about my experience with Dr.'s-- one in particular who for 2 months was telling me that he didn't think I had cdiff, just bad IBS. So I kept taking Lomotil (an anticholinergenic) which is believed to be one of the leading causes of Toxic Megacolon in cdiff sufferers, and was not prescribed any antibiotics that whole time. It's just scary to think what could have happened. I'm done venting about that now.

So...cross your fingers for me please! I am ready to get on with my life and beat the beast. I'll keep you guys posted. If anyone has any questions about the Stool Transplant feel free to email me!

[Brittany]

I forgot to mention, I also tried Rifaxamin/Xifaxan as a chaser after one of my rounds of Vanco. The D. was horrible the first 2 or 3 days, but without pain. Eventually it suppressed all of my symptoms, but once stopping this med I did relapse after 11 days.

Also, I have been popping Probiotics like candy practically from day one. Unfortunately, for some of us it just isn't quite enough. I do continue to take Culturelle, Reuteri, and S. Boulardi on a daily basis even though Dr. Rubin says it isn't necessary as the transplant was the "ultimate probiotic". I'de rather be safe than sorry though :)

[Brittany]

Today is Day #21 off of antibiotics/since stool transplant and still no cdiff! I'll probably have to turn in some samples soon to confirm, but we all know that when you have it--you know. I am feeling more and more hopeful!

[Brittany]

Day #36 today. I am still feeling good! I have come to the conclusion that the stool transplant was a success. Until I am forced to take anitbiotics again for some reason that is.

I went to my regular GI a few days ago and was expecting him to be interested and excited in how I finally am doing better w/no antibiotics after my horrible battle. He seemed to not really want to hear about the procedure, however he wasn't surprised that it had worked.

Since I still have IBS-D just as bad as I did before this whole cdiff business started, we are going to try Lotronex which is used in women with horrible D. I was supposed to start this before I got sick as it was becoming difficult to work every day.

I also asked what I can do (besides avoiding antibiotics) to maintain my newly acquired good gut flora and he says to take Align (like I have been) and eat plenty of fruits and vegetables (which I must admit I have never done).

[Brittany]

Day #52

Thought I'd keep updating here...I'm still feeling great, thank goodness. I went to a dermatologist today b/c I have been breaking out on my face since around the time my c diff started. Even 52 days off of antibiotics it still has not gotten any better.

The Dr. prescribed 2 different creams--one for morning one for night. BUT one of the creams has Clindamycin in it. I posted on here asking for advice (the Dr. assured me that it was a 1 in 100 chance it could cause c diff again, but what does a dermatologist know about it? What do ALOT of doctors know about it?). I've received a couple replies already--everyone saying DO NOT take it! Apparently Clindamycin is one of the biggest antibiotic offenders and should not be used in any "way shape or form". So...I'm not going to use it :( The Dr. also tried to prescribe oral antibiotics and I said "thanks, but absolutely no thanks!"

I wonder if anyone else has experienced acne along with their c diff. I tend to attribute most things to having had c diff now :)

I got some good news this week as well! When I called Duluth and asked how much the stool transplant was, they told me it was $2K plus lab tests for my donor. I thought this was steep, but paid it anyway--at that point I would have paid anything! A couple weeks after the procedure I received a statement in the mail that detailed all of the costs from my visit. It only totaled $735! So, of course, I called and they said that they didn't know why I was overcharged so much (I still don't know), but that as soon as they heard from my insurance they would mail me a refund check.

I talked to them yesterday, and my insurance DID cover most of the visit--just not the stool transplant part. It turns out the whole procedure only cost me $160!! Wow. While I still find it ridiculous (and a bit fishy) that they quoted me prior and then charged me AFTER the procedure $1250 more than was actually due, I am amazed that I ended up paying so little for a procedure that pretty much saved my life!

If you are suffering and can get to Duluth, MN then please do! I am telling you, if this c diff ever comes back I am calling them immediately! No more messing around with doctors who want to try this or that or this and that b/c the whole thing is just a guessing game.

Talk to you guys again on day 70, and hopefully not before!

[Brittany]

Day #93!!!

It's so funny how when you are c-diff free for a while you stop visiting the site as much. I now realize how obsessively I pored over all of the posts the whole time I was sick! I feel sad when I see the same posters still here months later struggling still w/cdiff. I wish I could afford to fly everyone to MN and pay for them to have the stool transplant done too.

Well, it's been 3 months since the transplant with Dr. Rubin and I have still not relapsed! I still have some pain with my regular IBS (which is what made me think of posting today), but not nearly as bad as the c-diff pain. I still get nervous sometimes when I feel it, but I try to remind myself that I haven't taken any antibiotics and there is no reason I should be relapsing.

My husband keeps getting sick, which is freaking me out! He is coughing and sneezing and leaving tissues all over the place and I am following him around with Lysol spray like a lunatic :) He even had to take a Z-pack of antibiotics, but luckily he didn't get c-diff and I didn't get whatever he had. But he's sick again, so I'm worried all over again.

On another note, we've decided to start trying to have a baby! Again, I'll keep you posted!