Diana's C.diff Journey/ 2 FMTs

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DianaC
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Diana's C.diff Journey/ 2 FMTs

Postby DianaC » Fri May 22, 2015 2:07 am

Hi. My name is Diana.

I just recently had my 27th birthday and have been struggling with C.diff-colitis since January 2015. I was married January 10, 2015 and immediately went on a honeymoon to Costa Rica. Two days into my honeymoon, I realized that I had strep throat. Both my husband and I are in the medical field (I am a Radiation Therapist and he a Firefighter/Paramedic) and had no doubt that I needed antibiotics immediately. Being in a third world country, I was able to order myself Amoxicillin 500mg, 7 day supply. Two days after the antibiotic, I was feeling much better. I was able to enjoy the rest of my honeymoon with no problems.

I finished my last dose of Amoxicillin on January 20, 2015; Two days after returning from my honeymoon. That day, I started having severe diarrhea. I assumed I was having diarrhea since I had been out of country and hadn't eaten very healthy for the past week. My husband and I typically eat very healthy and decided to return to juicing that day, so I made up the excuse that my green drink was the reason for my non stop diarrhea. Unfortunately, my job treating cancer patients doesn't allow me to leave and visit the bathroom on my own terms. I was starting to have excruciating abdominal cramps along with the diarrhea, but not always in conjunction with my bowel movements. I remember having to rely on my coworkers to take over so I could take frequent visits to the restroom. I still kept telling myself excuses and failed to let anyone know the extent of the pain and severity of diarrhea I was having for a few days. Finally, I got to a point where the pain was unbearable. I could not even hold a conversation with my patients. When the waves of cramping pain hit me, I was on the brink of fainting. I knew then that I should stop my stubbornness and see a doctor.

I was able to get in to see my primary care physician the same day and I was immediately told that my appendix was on the verge of bursting and I needed to rush to the emergency room. My husband had to leave his job and drive me since by this time, I could not even contain the amount of pain I was in. I waited in the ER for about 4 hours before getting a CT scan. I remember thinking I would die waiting in the emergency room because it felt as if my appendix had already burst. At this point my diarrhea was out of control and I started noticing a considerable amount of blood in my stool.

I soon heard the test results. My appendix was fine, but I had severe Colitis. According to the ER physician, one of the worst cases they have seen. They were fearful that my colon would perforate. I was admitted into the hospital, where I would stay a week being diagnosed with severe Colitis brought on by C. Diff. Considering I had been out of the country, every test was performed to eliminate a parasite. Everything came back negative. This was my first introduction to the destructive world of Clostridium Difficule. I was put on Ciproflaxin for the Colitis, Flagyl as well as Vancomycin 125 mg for 10 days.

My colitis improved tremendously within that first week. I still did not feel good after being released from the hospital. I had a general feeling of malice that I had a difficult time explaining to others. I had only taken the Flagyl for two days and had a few days left of Vancomycin, when I saw a GI specialist on my own for the first time.

The GI specialist I saw is a very seasoned, well respected doctor. It wasn't nice to hear him tell me that my colitis was one of the most severe cases he had seen.
It didn't make sense. I was a healthy 26 year old woman who was in great shape. I had just gotten married and had been doing my best to eat healthy, work out and de stress as much as possible. I have no underlying illness and have never had gastrointestinal issues before.
My Doctor said it would atleast be a month or longer before he believed it would be safe to perform a colonoscopy on me because of the extent of my colitis.

I tried to move on with my life. I tried to return to work. Every day was a struggle. I tried to work through it without complaining. I started having extreme abdominal pain and was sent in for another CT scan to check the progress of my colitis. The results of this CT scan would prove to be quite opposite of my first only about two weeks prior. I was constipated (we knew this part) and had over 5 feet of stool blocked in my colon and small intestines. One thing we did not know at this point was that my stool was highly infected with C. diff. I was told to take about 10-15 doses of Miralax within two hours to release the compacted stool. I can say that my night was not fun and despite relieving myself of a bunch of stool, I did not feel better. I was finally asked to give another stool sample which proved to be positive for the C. Diff toxin.

This was my second relapse of C.diff infection. I was put on Vancomycin 250mg for 10 days. At this point, I was very ill. I had constant diarrhea, severe nausea, lightheadedness, and zero appetite. I realized I had lost almost 20 pounds since returning from my honeymoon. I had went from 113 pounds to 94 pounds. I could no longer even walk straight. Getting out of bed to go to the restroom was a struggle. Dizziness took over and I had to be constantly monitored for fainting spells. If that wasn't bad enough, I was severely nauseous despite the Zofran.

I completed my second round of Vancomycin the beginning of March and felt even worse. My stool sample came back positive again for C. diff and I was told I had a third relapse of this horrible infection. This time, I was to complete 500mg of Vancomycin 4 times a day for three weeks. I knew my body could not handle the antibiotic this time.

My white blood cell, red blood cell counts and every other level was dangerously low. I mentally was in a state of confusion. I felt that I was at the point of "walking death." I had lost more weight and just could not fight this infection off. I was told that the infection was eating all of my nutrients, so my body was starving itself. I had protein in my urine which meant my muscles were deteriorating. My urine was brown from the severe dehydration. I was constantly needing IV fluids to try and keep my body from being so deprived. I felt hopeless.

I was finally told that I qualified for a Fecal Microbiota Transplant after being on the Vancomycin 500 mg for 2 weeks.

I received my first FMT via colonoscopy on April 1, 2015. I weighed 90 pounds that day; a total weight loss of 23 pounds. I was given a 90% cure rate. I was so very hopeful.
The prep for the transplant was by far worse than the pain I had initially going to the hospital for colitis. It took my three hours to have a bowel movement after starting the prescribed prep drink. I was in extreme pain for three hours with severe abdominal cramps and viscous vomiting. The FMT was a breeze compared to the prep.
I remember leaving the hospital that day feeling so happy that I may be on my road to recovery after almost 3 months.

My happiness was short lived. I was back in the hospital the following Monday with abdominal pain, bloody loose stool with mucous and pieces of intestinal tissue, and low grade fever. My one week stool sample showed that I still had active C. diff infection.

I was told that my sample could be positive for a while after FMT but that I could feel okay. That feeling of okay did not last long. Within the next week, I was hit with severe diarrhea. I had over 20 bowel movements a day. My 2 week post transplant sample proved that my infection was still active.

This was now my fourth relapse of C.diff. I then got down to 87 pounds; 26 pounds in less than four months. I no longer fit into any of my clothing. It was very hard for me to grasp the concept that I had failed a procedure that is over 90% effective. Despite the hopelessness I felt, I was able to stay positive due to my family and friends' support.

I was put back on Vancomycin for the fourth time in preparation for a second FMT. This time I was to take 125mg 4 times a day for 10 days. The only problem was that close to my 10 day mark, I was still too actively infected with c. diff infection/diarrhea that my transplant had to be postponed.

After three weeks of Vancomycin, I received my second FMT via pill form on May 13, 2015. Again, the prep was a nightmare. By far the worst and most painful thing I have been through. It took me four hours to have my first bowel movement this time after drinking 3 liters of bowel prep. I have been told this is not normal but nothing about me seems to be normal these days. The pill form of the FMT is so easy and I felt so grateful for a second chance.

I am currently one week and a half out from my second FMT. I should find out my stool sample results tomorrow May 22. My bowel movements have increased within the past few days, so I am naturally nervous. But I feel better than I have in four months today, so I am hopeful.

It is now my mission to spread awareness about C.diff Colitis and the havoc it can reek on your body, mind, and life. It has stolen my life and the beginning of my marriage for over four months now and I refuse to let it beat me. I am going to kick C. diff's butt!!! #prayerteamdiana
Diana C

NikaNik
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Re: Diana's C.diff Journey/ 2 FMTs

Postby NikaNik » Fri May 22, 2015 9:41 am

Hi, Diana!

Congratulations on your marriage - how exciting! I am so sorry to hear what a terrible time you've been through with c diff - my, you have really been through it! Thank you for sharing your journey with us.

I will pray this is your cure and that you continue to feel better and better. Blessings to you!

Nikki

Lisa33
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Re: Diana's C.diff Journey/ 2 FMTs

Postby Lisa33 » Fri May 22, 2015 10:56 am

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum All Users Read This First and subtopics Site History and Information and Guidelines for Posting to our Discussion Boards. (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read both Dr. Borody's articles. Also see the topics under CDI – particularly ABC Bible, C. diff. Tests and Diagnosis, Antibiotics, Hygiene Tips, and Nutrition.
Doctors lists physicians our posters recommended and contains a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) There is a new forum FMT’s and FE’s. Media Reports contains new information on C. diff.
The majority of patients (approximately 70%) recover with one to two rounds of Flagyl, Vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Almost all recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested for the infection first.
The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and CDI – Hygiene Tips.) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and The FMT Foundation.

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. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Diana - Welcome to this site, but so very sorry with what you have been through. You have really been through an ordeal. You are young and didn't have any underlying health problems prior to c-diff, so you WILL beat this. It sounds as though the second FMT is working, since you are showing signs of improvement. There are so many others that have had FMTs on this site, so I'm sure they will be along to give you some advice and share their experiences. We can all understand the physical and mental anguish that you have been going through. C-diff robs you of living your life. Sometimes it's a slow process, but you will beat this beast. I love how you ended your message positive. Positivity and the support of others is what motivates us to get through this.

Congratulations on your wedding! I wish you continued improvement and success.

Feel better,
Lisa

beth22
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Re: Diana's C.diff Journey/ 2 FMTs

Postby beth22 » Fri May 22, 2015 12:29 pm

You are not supposed to reply in the case histories section. It is only for the original poster to keep a log. I will try and transfer this to general discussion.

Bobbie
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Re: Diana's C.diff Journey/ 2 FMTs

Postby Bobbie » Sat Jun 13, 2015 2:48 pm

Thx, Beth.


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