Introduction:
I just turned 27 and was diagnosed with moderate to severe pancolitis in November of 2011. After my initial diagnoses I was in remission for 6 months. Since then I have had 3 flares and was just diagnosed with c diff for the third time in a year. This is my third time with oral Vancomycin. It always clears it up but then comes back about 4 months later. I am sick of this vicious cycle, so I looked into the fecal transplant. The Mayo clinic agreed to do my transplant next week! I am hoping this clears up the c diff once and for all. Also hoping it will help with my UC flares. I have been on the SCD diet for 3 months now and will continue the diet after my transplant.
Some more about me:
I enjoy being outdoors, shopping and gardening. I live in Minnesota and recently graduated with a doctorate in Audiology. I love my job!
Symptoms I’m Dealing With:
Cramping, diarrhea, gas
Colitis, C-Diff and Fecal Transplant
I was diagnosed with moderate to severe pancolitis when I was 25. It took 4 months to get a proper diagnosis. At first the doctor told me it was IBS. After waiting another 2 months I became very weak, thin and anemic. After my doctor realized how anemic I had become she sent me for a colonoscopy. I was immediately put on prednisone and Asacol following my diagnoses. I responded very well to the prednisone and was able to taper off quickly. I was in remission for 6 months until I was diagnosed with cdiff for the first time. I was on Vancomycin which cleared the c diff up but then 2 weeks later I started to flare. I was put on entocort wich cleared up the flare but then 2 weeks later the c diff was back! Needless to say this has been a vicsious cycle I have been dealing with.
After clearing up the c diff I started a flare again. After the third flare i decided to start the SCD diet. My GI doctor was insistent that diet had nothing to do with UC and I should eat whatever I want. I just have a hard time believing it. I think too many doctors focus on treating the symptoms of diseases rather than working on the root cause. So far the diet has really helped with the symptoms of UC but the recurrent c diff has made it difficult to truly see how we’ll the diet will work for me. I forgot to mention I found out i was pregnant during my last flare but miscarried at 5 weeks so it has been a rough few months. After the miscarriage I was diagnosed with c diff for the third time!! I am currently on Vancomycin again and will be having a fecal transplant via colonoscopy at the Mayo Clinic next week. I am really hoping for positive results!! I plan on continuing the SCD diet after the transplant. My husband and I are looking forward to starting a family so I really need to try and achieve remission!
Medications and Treatments I’ve Done/Doing:
Probiotics-living Stream
Asacol-4 pills 2x day (not sure if it really helps)
Prenatal Vitamins
Fish Oil
SCD Diet
Vancomycin 2.5 ml 4x per day for C-diff
Prednisone- Used for my first flare
Entrocort- used for the last two flares and worked well
written by Sara
submitted in the colitis venting area
I just turned 27 and was diagnosed with moderate to severe pancolitis in November of 2011. After my initial diagnoses I was in remission for 6months. Since then I have had 3 flares and was just diagnosed with c diff for the third time in a year. This is my third time with oral Vancomycin. It always clears it up but then comes back about 4 months later. I am sick of this vicious cycle, so I looked into the fecal transplant. The Mayo clinic agreed to do my transplant next week! I am hoping this clears up the c diff once and for all. Also hoping it will help with my UC flares. I have been on the SCD diet for 3 months now and will continue the diet after my transplant.
Dear Sara, First of all, I am so sorry to hear about your misscarriage. I had one at 5 weeks, and one more at 11 weeks, then I went on to have 3 full term babies… So hang in there! Plus you are young, and working hard to achieve a healthy digestive system… glad you are on probiotics… That was the first thing I thought of! I would also elliminate all sugar from your diet, and just use honey…if you are doing SCD, you probably don’t use sugar, but just in case. I found in my research for my book that sugar can encourage an overgrowth of yeast, and just an unhealthy environment for the flora and the fauna in your gut to balance. sSince you have had antibiotics so much, I would start with a really clean slate after your transplant. You are definitely doing the right thing…. Stick to the diet, and get lots of rest and exercise; also keep a food journal. Good luck, and keep us posted. Oh, I remember ready on this site (I think it was Bev!), who said take the probiotics first thing in the morning on an empty stomach…eat lots of green steamed veggies and the purest organic foods. You will be fine! Great job not listening to your doctor,,, when are they going to stop treating symptoms and get into real preventative care? I go to a GI clinic, and they are great (even though they don’t listen to me talk about diet and stress), but then I got to a naturopathic doctor for my real treatments. ;)
Hi Sara,
It’s so good that you are taking probiotics, first and foremost. They are of the ultimate importance. Especially with this c-diff flare circle that you seem to be prone to. It’s always seemed so strange to me that they treat c-diff with antibiotics (I know it is an infection, but then the antibiotics strip the good bacteria away too!).
Probiotics, probiotics, probiotics.
I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. One per day, first thing upon waking, empty stomach, with water. It is a great probiotic. There are others, but this one literally cured my UC. I have had UC (severe pancolitis) for over 15 years, and for the first time in 14 years, I am symptom AND med free! Just the probiotic and fermented L-glutamine powder every day. I am floored, but it’s true!! I could not be a happier gal these days. Meds made me so sick and I was told that I NEEDED to take them FOREVER. HAH!
Cheers,
Bev
Thank you both for your comments! I will look into those probiotics, I have been taking the living streams flora PM and another living streams probiotic. I also do the homemade yogurt and do not eat sugar. I had the transplant on Wednesday! A day after the transplant I had a formed bowel movement! So far I have had one formed bowel movement each day. No more cramping either. I am amazed at how well it worked. I was also happy to find out they did not see any ulcers during the colonoscopy just inflammation from the c diff infection. I think the SCD diet has really been helping with my UC. My doctor insisted the transplant would not help with my UC only the c diff. Time will tell, I am just going to continue with the diet and probiotics to try and build up the good bacteria in my gut.
Bev- So glad to hear you are feeling better without all the medications! I am still taking Asacol but would eventually like to get off of them.
I’m so happy for YOU Sara!
I would have a fecal transplant in a minute, should I ever have a UC flare again. I think they are the WAY to go!!
Cheers, and thank you for being so sweet
:)
oh Sara! i am so jealous you were able to get a doctor to perform a fecal transplant for you. i’m recovering from c diff too and am terrified of getting it again. i had it in january/february and did a round of vancomycin. that helped pretty quickly but it’s still something i think about all the time. i’ve done fecal transplants at home (8 total) with terrible results so i was thinking colonoscoy would help more.
Hi Sara. So sorry about your miscarriages. I had one at 17 weeks and then one at 12 weeks. It is rough. I have had recurrent c-diff also. After the fourth round, my GI has finally agreed to do a fecal transplant if I get it again. I have a j-pouch, so not sure if it will work. I’m hoping so. Joanna, I can relate to what you are saying. Each time the Vaco wiped it out (most recently I was on it for a month!), but I’m constantly thinking about it and have become kind of paranoid anytime my poop is not quite right.
oh yes lisa!! i noticed blood the past two days and i wanted to cry. i haven’t had bleeding since i last had c diff and i was just in the hospital over the weekend. if i got c diff just from being in there i will be so upset. it’s just the worst illness to catch.
I am sorry to jump in the middle of the thread, maybe you have already explained this but your doctor for C-Diff will not do a Fecal Trans because of your own particular case or he does not do them or does not believe in them? Even small city’s with a GI practice of more than one GI doc I am seeing offer the service on their websites now for C-Diff. Again maybe I missed something. My best.
rjw, it’s just not being done where i am. i can’t even count how many GI doctors i’ve BEGGED to do it for me. hoping it gets more widespread soon.
Apparently, SYNTHETIC fecal transplants are now also available…no smell…no donor necessary…so doctors may be more apt to agree to do them…they are being used to treat c-diff with 100% success, and are being researched for UC as well.
They are supposed to be just as effective as human ones. You should ask about it.
:)
Hi Sara, Could you please update us with results of the fecal transplant? How you still doing well? Have you had any more transplnats since the initial one. Stay well. Sharron
Hi Everyone! Just wanted to give you an update…It has been 7 weeks since my transplant and I am still in remission! No symptoms at all :) I have one normal bowel movement each day. For me the transplant has worked wonders and I hope others can get the same help from it as I did. I know there is research coming out showing it can help with UC symptoms as well as c-diff. For me it has helped with both. I think getting it done via colonoscopy is the way to go…I don’t think they have had as much success with doing it via enema.
that’s so awesome. where is the mayo clinic? i am so desperate to get rid of my c diff that i would probably go out of state to get a fecal transplant. the only thing is that if i flew somewhere for an appointment and they didn’t agree, it would be for nothing. i just can’t afford doing that without a sure answer.
Mayo Clinic is in Rochester, Minnesota. They would review your case and decide if you were a candidate before you would have to come out for the appointment. I think you have to have had c-diff a minnimum of 3 times to be considered. You should definitly look into it. They are wonderful.
OMG Sara…this is the very best news!!
I knew it. I have a lot of faith in FTs.
Cheers,
Bev
:)