Surgery Eminent; Kansas City Fecal Implants

[LeaHawkins]

Hi, I just joined tonight after someone sent me a few articles on fecal implants including Dr. Borody's .

My husband has diverticulitis. He was in the ER twice in the past three weeks. They gave him a lot of strong antibiotics. Later when the pain continued, he was admitted to the hospital so they could give him IV antibiotics and rest his colon. He came home a week ago today and is already back in there as of this afternoon because the pain came back and he had a dr.'s apt scheduled for today. They are now consulting with infectious disease dr.'s to figure out what antitiotics would be best. And then they plan to take out part of his colon.

Of course we're all concerned about taking heavy antibiotics as I've read they will only kill off the weaker bad bacteria and also the good bacteria and let the strong bad guys live. Not a good solution. Now I am concerned he could get C-diff there in the hospital. And I just read on this board and in the article about "Melanie" earlier today, that you can get C-diff from antibiotics!

I'm trying to talk with his dr.'s about doing a fecal implant using one of my kid's stool as a doner, as I have Lyme and certainly don't want to give him that!

Does anyone know of a hospital or dr. who will do this fecal transplant here in the Kansas City area? They want to do the surgery in a couple of days. It's a dangerous surgery.

Thank you for reading.

Lea

[beth22]

If your husband does not have c difficile, there are not many places that will do a transplant, but you can contact The Fecal Transplant Foundation and see if they have any information. Dr. Borody has a protocol that can be done at home with enemas, but it is for c difficile. I believe that they do fecal transfers in his clinic for other illnesses - don't know if diverticulitis is one of them. I would contact the foundation I mentioned - their contact information is listed here on the site. Look in the "doctors" section and you may also find a doctor who does FMT listed as well.

[LeaHawkins]

Thank you very much Beth. Your response is so appreciated. I'm hoping he can avoid this surgery. I talked with the nurse attending him earlier this evening and he had heard good things about fecal implants. I only wish I had been speaking to his doctor! He was taking notes because I told him to please ask the dr. about this.

The email I received from someone I believe in Austrailia did mention Dr. Borody has seen benefits in cases of antibiotic resistence, pathogenic gut bacteria, IBD, Crohns, Irritable bowel, diverticulisis , and even Parkinson's.

So, I'm guessing not many hospitals know how to do this? The man who emailed me also said Dr. Borody wants to see this treatment done in every hospital in Australia as a first line of defense.

I feel stuck. With a husband in the hospital thinking he "has to get the infection cut out", knowing how dangerous this surgery is. Yet here are 84 articles of Dr. Borody's that mention

diverticulitis. Last week when he was in the hospital the found the colon was not abscessed. So hopefully it's still the case but they are ready to do this surgery in a few days!

Thank you again. I did check the Foundation and unfortunately there wasn't a dr. in Kansas City. Oh. I just read the red letters. The FDA only approves this treatment for C diff.

OK, thank you. Beth can I ask if you know of anyone who has done this at home? I'm really scared now with all the antibiotics they've given my husband, that he could catch it in the hospital.

Thank you for listening. God bless.

[beth22]

Yes, many have done it at home, especially in years gone by when not many doctors were doing them. I did some booster enemas at home after I had a colonoscopy transfer and I know others who have done it. But, I don't know of anyone who has done it for diverticulosis. Another thing that you could do is call a couple of the doctor's offices listed and see if they have done this for that condition. The FDA only cracked down earlier this year and some of these doctors have been doing FMT for many years. You could also try to contact a doctor who has written something that you may have found online when you did the research. Most importantly, talk to your husband's doctor about this possibility. Perhaps even ask to get an Infectious Disease doctor for a consult. I really don't know if FMT works for what your husband has, but it certainly is worth investigating before you do surgery. Good luck. I hope all goes well and that you get some answers.

[LeaHawkins]

Thank you sweet friend! Beth, I barely know you but I am EVER SO GRATEFUL to hear a warm voice on the other side of the computer screen. My heart goes out to you all. I have Lyme and so I know the fear from having a difficult disease.

Right after I wrote this post I called up my husband's nurse again because he has had SO MANY different and strong antibiotics in him and was worried about him getting C diff on top of this other very painful thing. I should not have told him never mind about asking the dr. about the fecal transplant, the FDA won't let him have it. Now that I read your last post I feel better like
there may be hope. It's ironic all those antibiotics meant to heal his diverticulitis can give him C-diff. They did tell me he tested negative for it.

I'm wondering why people aren't going up to Calgary to get treated by this dr.in the article in the link below. I hope it's okay that I posted it. It's on the pills. I know it's a big out of pocket expense but he seems to hold out a lot of hope. My husband's nurse told meI could have a conference with my husband's dr. So thank you for suggesting it too. I pray all goes well with you too and that you are well after these treatments you are doing yourself. My husband will think I'm nuts for suggesting it! I also told them to please get an IV of Vit C going to help the antibiotics
be more effective.

http://www.thehealthyhomeeconomist.com/ ... oo%21+Mail

Thank you again for taking the time to share hope with an online stranger. I want everyone here to recover and live a pain free life. Keep seeking keep trying and hang on to an anchored secure HOPE.

[AllisS]

You didn't mention if infection/abscess was actually present (though you said your husband thought he had infection), but if so, according to a Harvard Health Letter on diverticulitis, "prompt surgery" is called for, as otherwise peritonitis, which can be fatal, may develop. I know the prospect of major, invasive surgery is terrifying, but if you have a skilled surgeon and an accurate diagnosis then operative treatment may be the best (possibly the only) feasible option. Best wishes for a good outcome.

[beth22]

I'm glad that you can have a consult with the doctor. Don't try and do any transfers without speaking to a doctor because you don't want to make anything worse. It's good that he tested negative for c difficile. At least you don't have that to deal with on top of everything else. Just take good precautions in the hospital - for him as well as for yourself. Make sure to wash your hands really well after visiting him and have him wash his hands as much as possible when he is there. Hand sanitizers will not erradicate c difficile, so don't rely on them. I visit my mom at a skilled nursing facility and I wash my hands really well before leaving. I learned the hard way - I got c difficile when I visited her at a different facility years ago and have been paying the price ever since.

[getwellsoon]

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.” Also read The C. diff. Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.

Again, welcome. Remember, the odds are in your favor

I'm so sorry your husband is having such pain from his condition but he is getting prompt treatment which is good. Aliss gave you good advice as did Beth. I'm so happy he tested neg. for Cdiff, he definitely doesn't need this on top of diverticulitis. Lets hope the consult yields good communication and your husband begins to heal from his illness and doesn't need the surgery. I will keep him in my prayers. Please let us know how he does and hope you feel better also. Lyme is a debilitating illness also so take care of you!!Carol