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Crohn's Disease Forum » Your Story » Fecal Transplant Put me in remission


03-18-2013, 02:49 PM   #1
TravisN
 
Join Date: Mar 2013
Fecal Transplant Put me in remission

Hmm, well Jim (pops) said I should tell you guys my story so here goes. I'm not the best at telling stories but I will try to keep from boring you to death.
For me, I think it started when I was 28. I would have bouts of stomach cramping, the big D, and once I bled. But I ignored it... I just didn't want to believe that I was having issues, so I waited for it to get better on its own... (Note: if you feel ill go to the doc! Don't wait! I would probably not have had surgery if I had gone through the tests and such and been diagnosed early.) My wake up call was not being able to keep food down for three days. I finally went to the hospital and had immediate bowel resection of the terminal ileum. They removed about 1/2 a foot of small intestine and 5 inches of my large colon. I was scared to death! I had never been in a hospital, no IV's, nothing and went straight into medical hell.
After my surgery I seemed to heal quickly but never lost the feeling of discomfort and pain. I would talk to my docs and they just said it's all in your head. It was not in my head it was in my belly. I couldn't laugh, sneeze, cough, run, dance, excercize without some pain or roll up in a corner pain. All in all I have had 4 doctors! If you are in Ohio I highly suggest Razvan Arsenescu at OSU medical center. He really listens, doesn't rush me through appointments and speaks with me about my condition and how I am feeling. What to expect, everything.
1 year after my surgery I developed abscesses near the ano-rectal area as well as fistulas. I have had 3 flap surgeries and the rest were draining cysts or removing fistulas. After two years of continuous pain, aggrivation, sadness, loss of friends and feeling hopeless I said F... It and tried to kill myself. Once in the car in the garage, once by sleeping in my tub while my wrists were cut and once by overdose. I was at the end of my rope. Gladly I didn't succeed. Pain makes you do some crazy shit!
1st year I was placed on Asacol and steriods. After 6 months of no relief I was placed on Humira. Still, no relief and that is when the fistulas began. I stayed on Humira but was miserable for 2 yrs. Then I asked to be switched to Remicade. They tried Mercaptopurine but I just couldn't keep it down. I was still miserable and I just wanted to end it all. I felt like life was not worth it if I was going to be in such mental and physical pain all of the time. If you are new to this disease, depressed, feel like giving up please go talk to someone. Heck, send me an email and I will talk as much as you want. Last Fall I went to Sydney Australia on a vacation and while I was there I looked into their programs and research. I found FMT. Fecal Microbiota Transplantation. I was grossed out and said oh hell no. Still, the more I studied and read the more it seemed worth a try. So, I called my doctor here and asked if I could be in one of the clinical studies. Unfortunately there wasn't one here. Only in Portland Oregon. He happened to know the doctor running the study though and offered me another way to treat myself at home. My husbands stool was tested for HIV, Hep A B and C, C Diff, and he passed all the tests with flying colors. So, we bought a retention nozzle, enema bag, tons of Zip lock freezer bags, went through training with our nurses so he could help me complete the series of enemas and my flora was checked and measured by my doctor every other week 7 days after each treatment. I was really sore down there from all the surgeries so instead of 7 days of back to back enemas we changed it to once every other week for 2 months.
I felt it was my last hope and I wanted to try something because nothing else seemed to work and I just wanted to become a guinea pig if I could. 4 months after my (home treatment) I went in for a scope, except some scarring from the past issues I had no inflammation, no diarrhea, no pain, and had started to work out again. I have felt better this past year than I have since I was 26. I have my life back! I have not been on any meds for 6 mos and after my scope today I was told I was in complete remission. (They still don't know how long it may last or if it will.) Right now I feel normal, no pain, no D and I have energy again!

The reason I feel it worked for me is because I had poor dental health since the age of 13. I had not been to see a dentist since I was 12. By the time I was 26 I barely had any teeth and had lived on pain meds and sometimes would go to the ER or the doc for antibiotics. I do believe I am genetically disposed to this disease. My sis has psoriasis, my gpa had diverticulitis, and my mom IBS. Still, the use of antibiotics I believe helped to start the disease off. You may ask why I couldn't afford to see a dentist, well, my father would not pay for me to go after my parents divorce. By the time I was 18 and got dental insurance it only covered cleanings, x rays and fillngs. Not the extraction, bridges, crowns and real work I needed. 27,000.00 and I just couldn't pay it! My husband ended up loaning me the money when I was 26 and I have currently placed a house in my mouth at the grand tune of 68,000.00!!!!!
Antibiotics were never studied in correlation with gut flora and how the flora would change and the symptoms it may cause. Replacing the flora with new flora from a donor seems to result in a healthy gut and reverses the inflammation. I highly suggest trying it. I believe doctors have not studied this enough even though the first transplant done for UC was done in 1958. Research programs are in cahoots with the drug companies and the FDA cannot sign a release on poo. It differs with each person and you also can't make it in a bottle or sell it in pill form. No money no research. Think about it and if you have questions please don't hesitate to ask.

35 years old - Diagnosed in 2009
1 major surgery
Fistulectomies and Abscesses

Drugs taken:
Asacol, Mesalamine, Steriods, Hydrocortizone enemas, Zofran for constant nausea, temazepam, trazadone, and hydroxyzine, Humira and Remicade

Meds now: NONE!

Last edited by Jennifer; 03-18-2013 at 03:11 PM. Reason: Changed title
03-18-2013, 03:52 PM   #2
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

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wow, what a time you have had. I am so glad the transplant worked for you. I have also read some promising results from it. I myself have not even been diagnosed yet! I am still tyring to figure out what is going on. But one thing I do know is that I have had to be on antibitoics low dose for the last 5 years to prevet the sevre urinary tract infections I kept getting. Anyhow, my gut issues started about two years ago. I am sure the low dose antibiotics have something to do with it all too. I however have also been taking probiotics for years as well. I do Not get why doctors and dentists prescribe antibitoics to people without telling them they also need to take probiotics as well to help keep the gut flora healthy.

I also knew of a lady who did the whole fecal transplant at home as well, she had a severe case of C-diff that would not go away. They did not offer the fecal transplant where she lived so she and her hubby just did it at home! Her husband was her donor. They did the same thing, they just got an enema bag and used saline to mix with the small amount of stool and she did it I think like 7 times over a period of a month. She got rid of the C-diff! I mean she felt better after the first transplant. So I think it really does work for a lot of people. I am considering it actually. I mean I honestly think it can help with a lot of digestive diseases. I am going to ask my gastro doc about it when I see him. I am certain it is NOT done here in Chicago yet though. I would have to do it myself if I wanted it done I am sure....

Anyways, I am so glad you are better and so sorry you had such a tough time of it.









Hmm, well Jim (pops) said I should tell you guys my story so here goes. I'm not the best at telling stories but I will try to keep from boring you to death.
For me, I think it started when I was 28. I would have bouts of stomach cramping, the big D, and once I bled. But I ignored it... I just didn't want to believe that I was having issues, so I waited for it to get better on its own... (Note: if you feel ill go to the doc! Don't wait! I would probably not have had surgery if I had gone through the tests and such and been diagnosed early.) My wake up call was not being able to keep food down for three days. I finally went to the hospital and had immediate bowel resection of the terminal ileum. They removed about 1/2 a foot of small intestine and 5 inches of my large colon. I was scared to death! I had never been in a hospital, no IV's, nothing and went straight into medical hell.
After my surgery I seemed to heal quickly but never lost the feeling of discomfort and pain. I would talk to my docs and they just said it's all in your head. It was not in my head it was in my belly. I couldn't laugh, sneeze, cough, run, dance, excercize without some pain or roll up in a corner pain. All in all I have had 4 doctors! If you are in Ohio I highly suggest Razvan Arsenescu at OSU medical center. He really listens, doesn't rush me through appointments and speaks with me about my condition and how I am feeling. What to expect, everything.
1 year after my surgery I developed abscesses near the ano-rectal area as well as fistulas. I have had 3 flap surgeries and the rest were draining cysts or removing fistulas. After two years of continuous pain, aggrivation, sadness, loss of friends and feeling hopeless I said F... It and tried to kill myself. Once in the car in the garage, once by sleeping in my tub while my wrists were cut and once by overdose. I was at the end of my rope. Gladly I didn't succeed. Pain makes you do some crazy shit!
1st year I was placed on Asacol and steriods. After 6 months of no relief I was placed on Humira. Still, no relief and that is when the fistulas began. I stayed on Humira but was miserable for 2 yrs. Then I asked to be switched to Remicade. They tried Mercaptopurine but I just couldn't keep it down. I was still miserable and I just wanted to end it all. I felt like life was not worth it if I was going to be in such mental and physical pain all of the time. If you are new to this disease, depressed, feel like giving up please go talk to someone. Heck, send me an email and I will talk as much as you want. Last Fall I went to Sydney Australia on a vacation and while I was there I looked into their programs and research. I found FMT. Fecal Microbiota Transplantation. I was grossed out and said oh hell no. Still, the more I studied and read the more it seemed worth a try. So, I called my doctor here and asked if I could be in one of the clinical studies. Unfortunately there wasn't one here. Only in Portland Oregon. He happened to know the doctor running the study though and offered me another way to treat myself at home. My husbands stool was tested for HIV, Hep A B and C, C Diff, and he passed all the tests with flying colors. So, we bought a retention nozzle, enema bag, tons of Zip lock freezer bags, went through training with our nurses so he could help me complete the series of enemas and my flora was checked and measured by my doctor every other week 7 days after each treatment. I was really sore down there from all the surgeries so instead of 7 days of back to back enemas we changed it to once every other week for 2 months.
I felt it was my last hope and I wanted to try something because nothing else seemed to work and I just wanted to become a guinea pig if I could. 4 months after my (home treatment) I went in for a scope, except some scarring from the past issues I had no inflammation, no diarrhea, no pain, and had started to work out again. I have felt better this past year than I have since I was 26. I have my life back! I have not been on any meds for 6 mos and after my scope today I was told I was in complete remission. (They still don't know how long it may last or if it will.) Right now I feel normal, no pain, no D and I have energy again!

The reason I feel it worked for me is because I had poor dental health since the age of 13. I had not been to see a dentist since I was 12. By the time I was 26 I barely had any teeth and had lived on pain meds and sometimes would go to the ER or the doc for antibiotics. I do believe I am genetically disposed to this disease. My sis has psoriasis, my gpa had diverticulitis, and my mom IBS. Still, the use of antibiotics I believe helped to start the disease off. You may ask why I couldn't afford to see a dentist, well, my father would not pay for me to go after my parents divorce. By the time I was 18 and got dental insurance it only covered cleanings, x rays and fillngs. Not the extraction, bridges, crowns and real work I needed. 27,000.00 and I just couldn't pay it! My husband ended up loaning me the money when I was 26 and I have currently placed a house in my mouth at the grand tune of 68,000.00!!!!!
Antibiotics were never studied in correlation with gut flora and how the flora would change and the symptoms it may cause. Replacing the flora with new flora from a donor seems to result in a healthy gut and reverses the inflammation. I highly suggest trying it. I believe doctors have not studied this enough even though the first transplant done for UC was done in 1958. Research programs are in cahoots with the drug companies and the FDA cannot sign a release on poo. It differs with each person and you also can't make it in a bottle or sell it in pill form. No money no research. Think about it and if you have questions please don't hesitate to ask.

35 years old - Diagnosed in 2009
1 major surgery
Fistulectomies and Abscesses

Drugs taken:
Asacol, Mesalamine, Steriods, Hydrocortizone enemas, Zofran for constant nausea, temazepam, trazadone, and hydroxyzine, Humira and Remicade

Meds now: NONE!
03-18-2013, 08:36 PM   #3
TravisN
 
Join Date: Mar 2013
Oh, I know. The indecision of having to make decisions. I've asked my questions about treatments they didn't even know were out there! They treat symptoms and not the cause.

But one thing I do know is that I have had to be on antibitoics low dose for the last 5 years to prevet the sevre urinary tract infections I kept getting.

Tumeric, a spice is a natural antibiotic. It should help with that issue. Also drink tons of fluid and take cranberry supplements. also,, use baby wipes to completely clean yourself there it will help relieve the UT infections.

Anyhow, my gut issues started about two years ago. I am sure the low dose antibiotics have something to do with it all too. I however have also been taking probiotics for years as well. I do Not get why doctors and dentists prescribe antibitoics to people without telling them they also need to take probiotics as well to help keep the gut flora healthy.

Pro-biotics and pre-biotics are a good start but there are many more good bacteria there and the replacement therapies only carry a few of the ones needed. If you are still off with the other bacteria you are literally taking expensive drugs that aren't working for you as you thought..They can help but they are not fine tuned yet.

Actually Chicago had a clinical research there a year ago. Definitely talk to your doc and ask them about the treatments. You can also do your own research online. If you have any questions call your doc.. you can also go to fecalmicrobiotatransplantation.com You can read their research files and case study works. Wish you well and better health.

Nikki Travis
03-18-2013, 08:48 PM   #4
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

My Support Groups:
TravisN,
Can you tell me if you have had Crohn's in your small intestine as well? I'm wondering if fecal transplants could work for small intestine issues or only for the colon and rectum.
Thanks!
03-18-2013, 09:05 PM   #5
nativesith
GTA ModLeader Psx-Scene
 
nativesith's Avatar
 
Join Date: Dec 2012
Location: Alberta
Thanks for sharing your story, I have been hearing a lot about this the past few months.
I have na even been diagnosed but i can tell you I have been thinking about this.
03-18-2013, 10:15 PM   #6
TravisN
 
Join Date: Mar 2013
TravisN,
Can you tell me if you have had Crohn's in your small intestine as well? I'm wondering if fecal transplants could work for small intestine issues or only for the colon and rectum.
Thanks!
Yes, both the small and large intestine with some irritation in the lining of my esophagus. If you are under the care of a nurse or doctor they can do a high colonic but it worked for me without having to do the high colonic. I did however also added an enema of pre and pro biotics to help the new flora spread and grow.
03-18-2013, 10:20 PM   #7
TravisN
 
Join Date: Mar 2013
Thanks for sharing your story, I have been hearing a lot about this the past few months.
I have na even been diagnosed but i can tell you I have been thinking about this.
Good luck and I hope you feel better soon. Ask your doc about it. Research it on your own, ask questions, and ask your doctor for the types of antibiotics you have been on, duration, and power of the med.

Create a food diary, and corelate it with how you are feeling after each food. All crohnnies are different and some people tolerate things better than others.
03-19-2013, 12:49 PM   #8
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

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Thanks TravisN, very interesting story. Not boring and something to think about. I am glad you feel so good. Hope you stay in remission forever.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-19-2013, 07:01 PM   #9
TravisN
 
Join Date: Mar 2013
Thanks TravisN, very interesting story. Not boring and something to think about. I am glad you feel so good. Hope you stay in remission forever.
you and me both hun!
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