success (knock on wood) with transplant during a colonoscopy

[feelinghopeful]

After the usual failed Metronidazole in early ’07 followed by a variety of administrations of Vanco and other drugs over the course of more than a year (tapers, Xifaxin, pulses, Rifampin, simultaneous drugs, mega probiotics, etc), I finally tried fecal transplants. I first did a series at home in April of this year. They worked wonders for just shy of three months. I did have some IBS like issues but no fever or D. I was eating, drinking and living like a normal person for three months! when I took antibiotics for a UTI I didn’t have. It turned out to be something else altogether. But the antibiotic precipitated a series of events that ended with me having C-Diff again. I see that many people can take antibiotics after having had C-Diff but my guess is at the very least the good intestinal flora has to be well established in order to get away with it.

I was going to do another home infusion but this time around wanted everything done to the letter to see if I could avoid being left with IBS. My donor was checked for pathogens and I had a doctor administer the infusion during a colonoscopy. I knew I had C-Diff on my right side, by the cecum and appendix, and not just the left. I had substantial pain there. Therefore, I thought it wise to have a doctor do the transplant in order to get some good bacteria all the way around to that side of my colon. For very stubborn cases they use both a nasogastric tube and the colonoscopy tube to make sure any C-Diff by the small intestines isn’t left unchecked by the donor material. That’s what I’d have done next if this was insufficient and will ask for if I have to do it again.

So, it’s been two days shy of a month and I’m feeling really great – no IBS, even. For me this application has worked better than the home infusion, though that was miraculous in its own right and if push came to shove I’d do another in a heartbeat. They work perfectly for some people – like Jim! I’m so happy for you, Jim.

Like most here, I was emotionally beaten down by C-Diff and have much gratitude to the doctor who helped me. I just wanted my life back and that’s what I feel I have right now. At times I did get to the point, with all of the other trials life throws at you, that you cannot take it anymore. It seems like a slippery slope. For me, it precipitated other problems and nothing would get resolved. I feel so lucky and grateful to be feeling this good right now (I’m eating pizza as I type!). I pray it stays this way. Earlier, I went for a walk in the park and marveled at how easy it was to pay attention to the beauty around me sans those nagging reminders, like cramps, nausea and antibiotics, that C-Diff has taken over your colon and your life.

[Nancy1]

Hurray! I'm so glad to hear of your success. That's wonderful! Thanks so much for posting to tell us about it. Reading success stories was one of the things that kept me going in my early days of cdiff. Your doc sounds great. If he/she is willing, you might post his/her info in the Doctors section.

[feelinghopeful]

Thank you very much for reading my post and for the kind words. The doctor who did the transplant is actually on the list already. I don't know why, but I feel awkward asking if he'd mind my identifying who he is. Perhaps I'll muster up the courage at some point, ask, and post something next to his name in the doctors section.

I think they'll eventually come up with something that targets C-Diff but for the time being, the transplants are working for many people, if you can bring yourself to do it. For me it was well worth it.

[iluvmydogs]

That is really great news. Thanks for sharing.

[feelinghopeful]

I can't believe how many patents Borody has applied for. Some of these are interesting to read and even confirm some suspicions given my experiences and those of others.

http://www.patentstorm.us/search.html?q ... x=7&s.y=13

Stumbling upon one of his patents last year made me determined to get a fecal transplant by a doctor. It never occured to me 'til I just stumbled upon another of his patents to type his name into the Patent Storm engine.

Passed the seven week mark yesterday and feeling wonderful. Anything can happen so I'm still knocking on that wood every time I say anything, but trying to eat in such a way to feed the good bacteria that was so generously donated to me. Consuming lots of legumes and soluble fibers in general and eating high fiber rice with chicken as often as I can stand it to keep my guts stable - I have to make it for my dog anyway so we share, she has protein losing gastroenteropathy and that meal has kept her healthier than she's been in ages. I do eat just about anything if I really have the urge. Went to a Chinese buffet for lunch with my parents and chowed. No problem so far. I'm still leary of alcohol, though, which I've only had once since the transplant (two large draft beers - sooooo yummy). I may have had some kind of reaction, though it could have been the flu shot I got. Went three times the next day - one was loose - scared me. Not taking any more chances so am staying away til the three month marker. Wine was my demise twice in the past.

I'll feel more secure when I reach the 90 day mark.

[TheVike]

BEEEEEEEEEER gives you the runs! :)))))))))

[Purrle]

Thanks for sharing your success story. Where do you live?

[feelinghopeful]

Gee, thanks vike :) What a bud you are! I love a few really cold tap beers on occasion, especially when we go to this great Indian Restaurant because they have Sierra Nevada, which is rare to find on tap and is my favorite tap beer. The two I had were toasted lager and after months of abstinance were weeeell worth one not so perfect BM - oh why is the universe torturing me and me alone! Ha! I did have a flu shot a day or two before so could be that (wishful thinking). I have eaten the most ungodly things over the last seven weeks with no reaction whatsover but two beers (tall ones at that), I do believe, caused a reaction. Shook me up a bit.

I once posted a link as to what may cause this. The alcohol makes the lining of the intestines more vulnerable. I believe you are left with considerable C-DIff bacteria no matter what you do and that's why you have to be careful for some time - not to throw the balance too far in its favor or give it a chance to do any damage. The food you eat is very important. It is my belief that PI-IBS is just this, pathogenic bacteria instigating an intestinal immune response but there's not enough to cause dramatic symptoms. PI-IBS generally resolves in 5 to 6 years (according to studies) and the prognosis is so much better for it than just IBS because it will get better incrementally as the normal flora returns and the pathogens are less a percentage of the flora - from what I've read this is what I believe at the moment. I don't have IBS because I did a transplant and gave the flora a jump start but I'm not stupid enough to believe I have no C-Diff left. So, my tactic is to foster my flora's health to crowd out and even destroy the C-Diff. That beer incident was almost proof to me that I still have some C-Diff and am not yet totally in the clear. I'm not I ever will be, but at six months clear, I'll try those beers again.

Hi Purrle! I'm in NY. I see you're from South Carolina. I was just talking about the Carolinas last night, discussing the possibility of moving to the mountains in NC.

[feelinghopeful]

I'm two months post successful transplant today! I hate to wish the time away but I'll really be happy when the three month mark comes and goes.

[feelinghopeful]

Updating a bit here. So I've found something other than alcohol that makes me go a bit more than normal and it's pretty predictable - caffeinated coffee (not coke or sodas, just coffee). I'd gotten in the habit of drinking decaf but had a few DELISCIOUS cups of caffeinated coffee in the AM with overnight guests. I LOVE strong coffee. I noted I went three times (normal, less normal and then even loose) so, I suppose I do have a touch of PI-IBS. If I stop the thing that causes the trouble, the trouble stops so for now, it's not a problem, though no alcohol is tough when with friends. Boy was that coffee good, though. I'd forgotten the immense difference between the two. Small price to pay. Also, I think stuffing myself isn't good. Went on a terrible binge for two days and my stomach became unpredictable for a day. Drank some kefir, took a Culturelle and went somewhat back to moderation for a day and was totally normal in no time. Had a large McDonald's French Fries on the road and half a bag of Newman's cream filled ginger cookies for a bedtime snack last night and so far I feel nothing so it's very specific what bothers me. Today I'm really going to try to be good. I did not like the reminder at all.

I know I must sound like I'm a big person with the way I eat but I'm not. I'm 5'7" and weigh 125, which is a good weight for me. I'd gotten really scrawny and drawn from C-Diff. Many of us have battled with our weight with it and I was no exception. I can't believe how it ravaged my body. OH! Also, I was in a lot of knee and hip pain, having trouble getting up sometimes. It was so disturbing. I thought it was from having been a bodybuilder for a dozen years and a runner for much longer and well, I was just starting to pay for it. I even suspected Lyme but within a week or two of the transplant I realized I wasn't having trouble anymore! I guess it was arthritis from the C-Diff. I did note that it got very bad after I did a somewhat successful home infusion that started going haywire because of my own stupidity and mistakes. My guts were getting very bad toward the end, before going back on meds, and simultaneously so was the joint pain. It's all gone now after the last transplant. I am so grateful for that. It's a side effect I was not expecting. If I've written about this somewhere already, sorry, I don't recall. I just think of that every time I climb the fifteen steps to my front door, which had become an exhausting chore and is no more.

[feelinghopeful]

70 day update. You really do forget what normal feels like after almost two years. When on Vanco you feel great but wonder if that's because it's keeping all bacteria subdued and is keeping any normal sensations from occuring. When you go off it, you first wonder if the symptoms you feel coming on is just the body reacting to the growing bacterial population it hasn't known for a while. Then you start the 'IBS' phase. Some are lucky enough to have enough good bacteria grow back in time to keep it at the IBS phase and then the good bacteria hopefully slowly overwhelms the C-Diff as the IBS symptoms hopefully lessen. With the less fortunate, the IBS lingers longer than you'd like but there's worse, the full blown, undeniable C-Diff relapse. In my many relapses any variation on the above occured. Sometimes I went straight from feeling great to THIS IS C-DIFF. And even after drinking wine after being symptoms free, I went from perfect to 40 trips to the loo the next day.

I guess I'm writing because although I felt really good right away after this transplant, I did have occasional issues that I thought were 'normal' but I'd just forgotten you have these sensations once in awhile. It was the pinching of the colon now and then and burning of the bum (I think caused by the toxin) now and again. A few weird movements here and there from alcohol or caffeinated coffee. Over the last couple of weeks I've crossed a bridge. That's not to say you can't backslide somehow for any number of reasons but I have had no weird sensations for weeks now. I drive along and think how odd it is to be completely unaware of my intestines, they are just there as they should be and I remembered, like dejavu, that this is my original normal. You feel when you have to go, or if you are constipated, you have normal gas and things smell but like they ought to. For me, that was a good sign. For a long time I had no smell because I had so little bacteria. On vanco it was like air, non-existent, no healthy bacteria smell. And this AM I remembered how people tend to sniff their smell. It's natural, the way animals behave and I was like, yes, that is me, my brand, a real smell.

I had coffee yesterday with no unusual reaction. I had beer last week and last night with no adverse reaction (though it's 24 hrs before I can say that with certainty with alcohol) but last week I had no reaction to the beer and suspect today will be the same. I had 1/2 and 1/2 caffeinated coffee this AM and it worked like it used to. So, I feel I've crossed a very long and important bridge. I may change my tune tomorrow, as many of us have been forced to do over the years but I feel truly 'normal' in the old sense of the word. My only next test is red wine. I'm afraid of it since it caused two relapses in the past. I may wait for the three month mark for that treat. But I'm way past the mega garliced pesto with utterly no reaction. I ate the equivilent of two cooked onions with my mother's chicken and potatoes two days ago and had no reaction but normal, healthy gas.

So, it is my 70 day anniversary and I just wanted to celebrate by documenting this incredible event. I never thought I'd see this day. I have a very special doctor to thank. I guess two. My gastro (with whom I was angry for deciding he didn't feel comfortable doing a transplant after saying he would if all else failed) at least sent me to somebody who would do it and did and I have my life back. I feel badly that I was angry with him and harsh in writing a few times. He's a good man and kept me healthy despite trepidation over many negative tests. You lose your sense of balance and fairness when you're the one suffering and your doctor is in doubt. Looking back, I kind of understand his quandry.

Oh, as I stated in another update, my knees have not felt this good in years. I can't explain it. Maybe I've had deficient intestinal bacteria for a while and I do believe intestinal bacteria is responsible for many of the body's functions. I am so, so happy today.

I have to thank this site for all the information that led me to my cure and I'm reassured to know its here if I should need it again, heaven forbid. But it's like having a shelter when you're homeless and someone to hug when you're lonely. You get companionship, help and sound advice here. Thank you cdiffsupport.

[iluvmydogs]

Congrats to you!!

[Bobbie]

Congrats. & thanks for posting re. your success to give others hope.

Altho. the transplant probably isn't for everyone, it has been effective for many.

I believe this forum (Success Stories) is one of the most important on the site.

[trob25]

Good for you! I'm so glad to hear you are back to normal again :)

I hope to post my success story soon, but I'm waiting till day 60. But things I think are ok, just occasional IBS.

[feelinghopeful]

Thank you so much for the congrats. Won't it be nice when they come out with a something that can let us all breathe easily and not have to worry about taking antibiotics or doing something that for whatever reason brings back the beast. C-Diff really is terrible. I hope we all here find our cure asap. I'll be looking for the Success Story post, Trob!