I guesstimate 2 months...

Katie, get checked for c diff again, it's very strange that you are getting bad just when remi is supposed to be kicking in more. I would also suggest a complete stool analysis. Maybe you have some sort of infection?

Before you try surgery, give the fecal transplants a shot. I was in really bad shape by the end of 2010 when I was referred for surgery. I'd tried every diet, had blood in stool daily for months, 8 months of Remicade had not worked either. The colo-rectal surgeon told me to take meal replacement shakes because my blood albumin levels were too low to for an ideal speedy recovery from surgery so I needed more protein and I should also taper down from 40 mg of Prednisone too. So I abandoned my gluten-free, dairy-free, SCD diet and had 3 protein shakes a day and re started the mesalamine (Canasa) suppositories, sometimes twice a day.

I started to get much better and a month before my surgery date I was off Prednisone had regained my body weight back to normal and color returned to my skin after this ghostly white fallow appearance. My attempts at the diets had left me malnourished while my symptoms had gotten worse. I started to question surgery now that I was doing much better again, but they kept saying it will only get worse, your colon is damaged beyond repair, etc.

The my Mom handed me a print out of the Wikipedia article for Ulcerative Colitis which mentioned Dr. Borody's success using fecal transplants. I read the article and I was floored, 6 patients with severe cases had been completely free of illness for a period of time ranging from one year to even 13 years in another patient and counting! So with surgery just 3 days away I stayed up all night researched both surgery and fecal transplants and weighed the pros and cons. I came to realize that surgery did have some very real risks and it would not restore me to a pre Ulcerative Colitis condition. Although even before I ever had Ulcerative Colitis I sometimes had loose or even urgent bowel movements every now and then, which I now think was undiagnosed and untreated IBS.

I decided to postpone surgery to give the fecal transplants a shot, because if I tried the fecal transplants and they didn't work I could always have surgery or even try something else. While there was little published information in medical journals using FMT for UC there was for treating infectious colitis caused by c. diff. With a healthy donor it also appeared fecal transplants were safe, there were no incidents of severe adverse effects and it was extremely effective for c. diff. My own case of UC had gone into remission 2 different times from Cipro and once with Vancomycin so I realized that bacteria seemed to play some role in how UC manifested itself.

However if I had surgery then I was stuck with it with no other treatment options after that. Even with that state there were still possible problems like obstructions and pounchitis. I also read about how h. pylori bacteria had been found to cause stomach ulcers and antibiotics could successfully treat them. There was definitive research from Australia first published in 1983 but not accepted in the U.S. by the FDA until 1999. In the meantime people werer having parts of their stomach removed because doctors either didn't know about this information or weren't willing to accept it. Dr. Borody's article on successfully using FTs for UC had been published in 2003, yet my doctors seemed to have not even heard of it. I thought wouldn't it really suck if just 5 - 10 years from now this is a widely accepted treatment and yet it didn't matter because I had had surgery. How bad would I feel if I knew there was a possibility and I didn't give it shot to see if it could possibly work?

So to make a long story short I cancelled surgery, the surgeon at Mayo Clinic in Jacksonville, FL basically told me I was crazy and performed a flex sig on the spot and said my colon and rectum was "blown" with scar tissue which had lost elasticity and could not heal. He told me the urgency could not be stopped and I would only get worse and if it got worse I might not even be a candidate for the j-pouch. This didn't seem to quite make sense to me.

I searched out doctors and at one point had appointments with both Dr. Brandt and Dr. Kelly, two of the only GIs who were performing FMT at the time - there are now dozens if not 100s of them now doing these just 3 years later. I was introduced to a woman who had successfully done these with her son. When I asked how he was doing she said he was "cured" the same language Dr. Borody had used in his article. I said what do you mean "cured?" this is incurable. She said, he's been without drugs for over a year now without any symptoms after being hospitalized 3 different times in the year before that. He eats whatever he wants and I haven't even heard from him in over two weeks. The last time I heard from him his car got towed after being out all night.

This encouraged me, it sounded like he was a normal guy in his early 20s. I followed her advice to prepare for a much longer course of FTs, recruited a 28 year old friend to be my roommate and donor and I just plunged ahead. At first things appeared to be getting much better but then starting sliding back into a flare. I ran out of oral and rectal mesalamine and didn't refill the prescriptions and thought I could do it with just the FTs. Then I started adding Prednisone back into the mix and started ramping it up again, but things weren't changing. I ran out of Prednisone so I went back to my old GI, hat in hand to get more. He refused to give me more than about 2 weeks worth, enough to taper off of it.

So with some desperation starting to set in I stumbled upon this forum with a discussion thread about using Wellbutrin for Crohn's Disease. So I did some research on its possible use as a TNF-a inhibitor and promptly made an appointment with the psychiatrist to get some in addition to low dose naltexone which I was also considering trying. The doctor also prescribed Silenor to help for sleep and in kind of vague off-hand way said "oh yeah and it should help with GI issues too." He actually gave me a brown paper grocery bag full of samples So with the clock ticking down until no more Prednisone I refilled the Apriso and mesalamine suppository prescriptions along with the one for Bupropion and piled it all on along with the Prednisone. By the next evening I went from bloody diarrhea to a few hours later a well-formed bowel movement! It was like night and day!

So I quickly tapered off of Prednisone then started to do that with the Mesalamine, noticed the stool quality went down, so I went back on it. I then had a colonoscopy with the same GI doctor who had referred me for surgery before, 8 weeks after my sudden, dramatic remission. To the doctor's astonishment there was significant, although somewhat patchy healing of the mucosa, it looked different than the previous decade's worth of colonoscopies. He struggled for an explanation, it must be turning into Crohn's Disease now, even though I was sure enough it was UC to refer you to surgery. Or maybe I was just having a somewhat unusual form of remission. I just laughed a little and said, I think this shows that I'm cured and on the road to recovery. And that is the last time I have gone to a GI doctor.

Its now been almost 34 months and I am still free of the illness, I don't limit my diet and I don't take any medication specifically for UC, although I did take Bupropion for Seasonal depression for a few months in the winter when it seemed to cause some IBS related diarrhea. This stopped almost immediately with the addition of the drug and then in February I just went off it again without any problems.

So that is my story, there are now ongoing studies of FMT for UC and patient stories continue to accumulate as well. Knowing what I know now I would encourage almost anyone who is facing surgery to give this a good, hard try first if for no other reason than to rest assured that you did not miss an opportunity to be free of UC while still having your colon.

But then I went off the Silenor (Doxepin) then Mesalamine for good in early December, about 4 1/2 months after my big breakthrough.

I want to make very clear that the FMT didn't fix the inflammation exactly - it fixed the microbial balance or the underlying cause of his particular UC pathology. The pred, wellbutrin and canasa were just tools that helped control, if not suppress, the inflammation, allowing the FMT to take root. This is reinforced by the fact that he tried those therapies for 11 years without any long term results. I am pretty sure he will confirm this, as all of this is well detailed in his protocol. :)

Hurst answered some of these questions in Sharron's thread. If you have any lingering questions, I'm sure he'd be happy to answer them again, but you'd probably have to ask in the "official" thread, and I'm really hoping that it does not get locked for some unknown reason.

His replies are very detailed and he clearly took a lot of time to write them to help people out. I learned a few things myself from his posts and realized where things could potentially go wrong and why they went wrong for certain individuals.

As much as I hate pharmaceuticals, he (and Dr.Briggs) have sold me on wellbutrin, which is another antiTNF that has some effectiveness in controlling inflammation. Really wish I knew about those before I subjected myself to all those unnecessary and ineffective biologic treatments in the past.

I think how long someone stays on anti-inflammatories after the transplant is variable. Even though Hurst had results sooner than he expected, he said he would have stayed canasa or lialda longer just to play it safe.

Again, it really comes down to how the individual responds to it, as there are no set guidelines. I think one big mistake would be getting off drugs as soon as one starts feeling better. Another one would be to not take time off to do it. Stress always plays a role in flare reoccurrence. It's more about listening to your body and seeing how it reacts to all the changes that are happening. It takes a bit of time (and work) to heal residual damage in the colon. There is no free lunch.

Post Edited (Guardian7) : 5/18/2014 5:24:03 PM (GMT-6)