Fecal Tranplant via Colonoscopy tmrw

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sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/13/2011 2:49 PM (GMT -7)   
Please cross your fingers for me that this works.  I am hopeful!!

mari68
Regular Member


Date Joined Aug 2010
Total Posts : 65
   Posted 6/16/2011 3:57 AM (GMT -7)   
Good Luck sas, keep us posted on your experience. Am considering this treatment myself soon!

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/16/2011 6:41 AM (GMT -7)   
Thank you for the response. It was a rollercoaster ride but we did it!! The dr. and surgery center were so amazing about it - it was a first time for all of us. They had to keep a room open all day while we waited for the donor to go...but everyone was so fired up about it. I did a regular cscope prep for the procedure after donor went they blended the stool with saline, knocked me out and sprayed my entire colon. I had to take some immodium to try and retain it. I just went to the bathroom for the first time this morning and perfect poop!! no pain, urgency, blood. s shaped. I cannot believe it!!

Again thanks for the interest Mari68.

Stacy
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/16/2011 8:27 AM (GMT -7)   
Hi Sas, May I ask where you had it done? Did you have to take antibiotics and a prep? I have had my donor tested but am really dragging my feet on antibiotics I am supposed to take..I probably won't start it till next month as we have too much going on and I don't do so well with antibiotics and a prep. I am going to do it myself...EWWW!
Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15381
   Posted 6/16/2011 10:05 AM (GMT -7)   
sas, this is so interesting to me. I've heard of people having the procedure for c. diff but I've never seen anyone here who has had it done. Do you have c. diff? Was the donar someone you know? Imagine being the donar for that? haha, people waiting around for you to poop... I hope you continue to see improvement.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/16/2011 12:27 PM (GMT -7)   
Hi I did the FT for UC not cdiff. I did not do the antibiotics before hand - the GI I was doing it with did not recommend it. It was his first FT too - it was considered an experiment. The dr that agreed to do this is in Rochester, NY and he is a friend of my sisters. we got to talking one day and he said something about it and i told him that i had been wanting to do a FT for a while. So we brainstormed a protocol - he got permission to do it a surgery center and my husband was the donor. I figured that there was no true downside - only the disappointment if no improvement. I am taking it day by day.

Stacy
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15381
   Posted 6/16/2011 1:05 PM (GMT -7)   
That's so exciting Stacy. I hope your experience opens the door for others to try this procedure. I don't see any reason it shouldn't be available for UC if it works!! I sure hope it works for you :)

It's good that your husband was the donor, I was thinking it was just a tested "donor" and everyone was anticipating a movement. With your husband it's much easier.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/16/2011 5:17 PM (GMT -7)   
I did have to do a cscope prep.
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

SterlingArcher
New Member


Date Joined Mar 2011
Total Posts : 11
   Posted 6/19/2011 10:06 AM (GMT -7)   
Hi Stacy,

Just wondering how you are doing. I am considering this route as well. Thx.

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/19/2011 10:23 AM (GMT -7)   
So far so good! I have been eating a very high fiber since the FT Have had no blood, urgency, pain or undigested food in the bowl. Perfect form to stools. I have been going once a day. Before FT, all stool was loose, there was blood, severe urgency, went multiple times a morning. I am taking 4 Lialda a day that I will soon wean from. My dr. is cautiously optimistic. I am also no longer taking any probiotics per dr. He wanted the new bacteria to have time to adhere to the intestines with no conflicts. Still taking this day by day, but I remain very hopeful.
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1680
   Posted 6/19/2011 12:55 PM (GMT -7)   
Amazing! Best of luck and keep us posted!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008

No surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Been through MANY medications with mixed results
Currently on Cimzia, Lialda, Ambien (prn), xanax(prn) Bee Propolis 500mg twice per day.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3548
   Posted 6/19/2011 2:09 PM (GMT -7)   
Wow, yes!
I am very curious about FT.... I can see myself trying it at home at some point.
Please do keep us posted.
Co-Moderator, UC Forum
Age 55. Diagnosed UP 1983, UC 1986
Asacol - 16 pills/day,
Metamucil - 2 doses/day
VSL#3DS 2/3 x daily, Multivitamin, Calcium and D
homemade yogurt each day
rowasa, Canasa
coming off mini-flare...
Son, 17, dx pancolitis 2007, in remission

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/19/2011 2:16 PM (GMT -7)   
i will keep you posted. so appreciate the support!!
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

ecolang1
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/24/2011 3:37 PM (GMT -7)   
sas, after doing much research I think the procedure you have described having could be a really viable option for my boyfriend. Would you be able/willing to share with me the name of the doctor who performed this procedure for you? I think our chances of success are far greater if we can have it done via colonoscopy rather than attempting at home with a kit. My concern is that we wont be able to find a doctor willing to do it. We will be in NY state next month and would like to get in touch with your doctor if possible. Please let me know if you can.

And if you can't, do you have any suggestions for locating a doctor local to my area who might be willing to take this on?

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 914
   Posted 6/24/2011 5:22 PM (GMT -7)   
It's a travesty that this is not being tested as a possible treatment for U.C. on a wide scale.

This speaks to how screwed up our medical system is in some ways, at least in the way money and special interests have b astardized the process of creating new drugs and treatments.

Why can't the CCFA support such a study? Why do they have to put their money into research with biologics?

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 5:24 PM (GMT -7)   
Hi  The dr I went to was Jonathan Goldstein in Rochester, NY    It was a process for him to do this procedure because it was his first one and he had to get approvals from the surgery center to do it.  I am not sure how easily it can be done.  I had to agree that it was considered an experiment and not a treatment. 
 
Since FT on June 14, I have had zero UC symptoms. 

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15381
   Posted 6/24/2011 5:32 PM (GMT -7)   
How are you feeling sas? Still as good as you were right after the procedure? I hope so!

C_G_K - I also think it's terrible that this procedure isn't being used and researched more.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 5:46 PM (GMT -7)   
Hi, I am feeling fabulous! I went to the Cape with my hubby and ate so much food (and had a few margaritas)!! I have gained 7 lbs since the FT and having normal poops. I am scared to jinx this. I am still taking things day by day. I have not weaned off the Lialda yet. Besides Lialda I am just taking VitD, Folic Acid, Calcium and DHEA.

Every day I am eating salads and fruit and have zero undigested food in the bowl.

Today I had some twinges in my rectum that scared me but we rode bikes for 4 hours yesterday....the pain was most likely a hemmie but I will not ignore it if continues. My dr. is in touch with me every few days about how I feel because this was his first FT. I think we are both scared to stop Lialda. I also have a hefty supply of Rowasa and Cortenemas on hand if symptoms start.

Thank you for the well wishes and support. I am happy to share any of this experience here or off line. Even for the past 10 days it has been life changing. I have eaten and had energy and for me that is not my norm.
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15381
   Posted 6/24/2011 5:49 PM (GMT -7)   
I am not sure how I would feel about stopping Lialda. Do you think this "Cured" you or just brought on remission? If you're in remission, stopping meds probably isn't the best idea. If you had some kind of severe bacterial imbalance that has been corrected, I could see stopping 5ASAs. I hope you can stop everything, that would be great!! Just be careful. :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 5:54 PM (GMT -7)   
I do not think it would be realistic to consider myself cured. I can not imagine that. I do think I am in remission and feeling better than I have in a very long time. For me, right now, thats enough. I am on the fence about Lialda. For now, I am ok with taking it and just enjoying this good health.
Stacy
Left Sided UC
Current Meds: Colozal (9 pills), Hydrcort Enema, Vitamin D, VSL #3, Calcium and Florastor, Permeabilty factors, Quercitin, Fish Oil and DHEA
Status: Flaring

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 6:06 PM (GMT -7)   
I just updated my profile and wanted to see if it changed. so this is a test. :)
Stacy

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 914
   Posted 6/24/2011 6:27 PM (GMT -7)   
sas,
 
Sounds like something those of us who have suffered chronic flares can only dream about. Travelling, eating what you want, having lots of energy... just being normal. How nice that would be!
 
I hope your remission/cure continues without end! Keep us posted if you can.

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 6:37 PM (GMT -7)   
I know! Eating! Traveling! a drink! being lovey with my guy! exercising! one bm a day! i even had a cup of coffee the other morning!!! My husband and kids not staring at me anxiously...its heaven.
I will NEVER take this for granted.

Thank you C_G_K.
Stacy

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 914
   Posted 6/24/2011 7:07 PM (GMT -7)   
Things I would like to do if I could find a cure (in no particular order):

- Have a beer
- Take my kids to Hawaii
- Jog
- Work more (yeah sounds crazy eh?)
- Pig out occassional on things I know are not good for me
- Eat raw veggies all the time
- play sports with my kids

I'm sure I'm forgetting lots of things...
DX Pancolitis 2003. Subsequent flares limited to left side
Flare every 2-3 years.
Salofalk 12 tabs daily,
Probiotics: VSL#3DS. Fiber: Psyllium.
Allergic to Imuran

Flaring for the last Year!.. No diarrhea.
Colocort overnight, SFRowasa after 1st BM.
Went from 2 Colocort to 1 successfully. One more to go!

sas
Veteran Member


Date Joined Jan 2005
Total Posts : 538
   Posted 6/24/2011 7:11 PM (GMT -7)   
I hope all of that happens for you CGK. It is a fair and reasonable list.
Stacy
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