Introduction:
My name is Don and I’m 56 years old. I am a design engineer in plastics and a musician. I have been married to the love of my life for 36 years and have 7 grandchildren.
Some more about me:
I live in Erie,PA and released my own CD under the name Dee Girard in 2006. The next year I got sick. My musical career had been put on hold but I still play every day and I love to sing and play the harp (harmonica).
Symptoms:
Still experiencing some bleeding, gassiness, wetness, and urgency. I gained some weight this year after losing over 40 lbs. around Christmas 2011.
Don’s Story:
I am 56 years old, a husband married to a wonderful woman for 36 years, a grandfather of 7 children, an engineer and a musician and I was living a carefree life until 2007 when I began to experience digestive problems. I had just released my first CD of original music under the name Dee Girard and was planning to do some shows in support of this disc.
Over the course of a few years I noticed that I was going to the bathroom more and that my stools were less formed. Early in the summer of 2007 I started to see blood in the toilet. My wife and I had planned a vacation to Savannah so I didn’t say anything to her. I assumed I would be dying soon of cancer so I might as well enjoy this one last vacation! Later in the summer the bleeding increased until it was dripping out. At that point I called my family doctor who made an appointment for me in approximately 2 weeks. I thought I might be dead by then and was surprised that they we so nonchalant about it. After seeing this doctor they made an appointment for me to see a GI doctor in about a month! Was nobody taking this seriously? My appointment was actually with a nurse practitioner and the main thing we talked about was getting a colonoscopy. This would be my first. Several weeks later my diarrhea had gotten much worse and I was losing a lot of weight. I started ou t at about 220 lbs and now was at around 180. Preparing for the colonoscopy was a nightmare. The pain was excruciating and inducing diarrhea seemed like a bad idea. I already had diarrhea! While waiting for the results of the colonoscopy I continued to get worse and my GI doctor was of no help. I saw a holistic doctor who performed acupuncture on me and sold me some Chinese herbs and vegetable mixes at a cost of almost $300. At this point I could no longer work. I spent the next couple weeks taking the drinks and eating the foods that the holistic doctor had sold me but saw no improvement whatsoever. Finally when I could hardly stand on my own I had my wife take me to the ER. I was admitted immediately and a barrage of tests was done. I was given pain medication, Prednisone, and other medications and hospitalized in intensive care for a week. It took me another 2 months to return to work.
At this point I thought the problem was solved and I could go back to living my life. Wrong! In the summer of 2008 I started having diarrhea again and soon after the bleeding started again. I had another colonoscopy and it was determined that I had ulcerative colitis. I was put on Asacol which did nothing. I was once again declining and terrified of the drugs that they were offering, Remicade, Humira, and Imuran. That’s when I found Elaine Gottschalls’ book Breaking the Vicious Cycle. I August 2008 I started the intro diet and saw major improvement over 2 weeks. I knew I was on to something. I continued on the diet and gained weight and steadily improved to the point that I thought I was cured. 2 years later in September of 2010 I experimented with a taco from Taco Bell. No problems. I then had bread. No problem. Next was pasta and still no change. I was giving myself a week between trying new things. Finally at Halloween I had some candy. Caramel filled chocol ates that my son in law made. They were delicious but shortly after eating a couple of those I was seeing a reaction. I immediately went back on the diet but it was too late. The sugar caused the bacteria to explode inside causing severe diarrhea and soon bleeding. A couple weeks later I was back in the ER and spent 5 days there recuperating. I told the doctors that it was because I went off the diet but they didn’t believe it.
Since then I had been trying to get off Prednisone but every time I would wean off I would start having problems. The last time I weaned very, very slowly and used the SCD Lifestyles phases of the SCD diet from Jordan and Steve. Previously I was diving into all the different SCD legal foods that I could eat before. That was a mistake. This time I pureed and cooked all my food very well. That made all the difference in the world. I hope to be writing music and performing again soon!
Medications:
Asacol didn’t work, Prednisone helped get me out of nasty flares but is hard to get off of.
written by Don
submitted in the colitis venting area
My name is Don and I’m 56 years old. I am a design engineer in plastics and a musician. I have been married to the love of my life for 36 years and have 7 grandchildren.
Best wishes, Don! You are on the right track by following SCD! Just goes to show that even if SCD gets us to the point of being symptom free, we should still stick with it. Really, nobody should be eating the garbage they put in food nowadays. SCD worked for you once, so just keep at it and you’ll get there eventually, hopefully sooner, rather than later. Wishing you good health!!
Don, great story and a good reminder of the perils of going off SCD. Thanks for sharing. I had to restart SCD a few times before I really got how it worked. You have to start slowly. Gotschall’s book is a wealth of information but she doesn’t outline a plan for tacking the diet so much. It helps to have is spelled out. Those guys at SCD Lifestyle were helpful for me in the beginning as well, as they really lay it out clearly. Their stages are actually borrowed from pecanbread, which is a super informative site that lists the stages (among other things) for free here: http://pecanbread.com/p/how/stages.html
Are you doing better now, Don? You’re right that Standard American Diet has to be a thing of the past for all of us on SCD. And really SCD is so healthy and yummy, why go back? Some people seem to have success with transitioning to GAPS or Paleo eventually. Both are derivative of SCD with some alterations. Paleo seems to be in its heyday right now so there are a ton of good recipe blogs and cookbooks out there. Best.
Hi Collen,
Just read we shared some same info with the pecanbread-stages site, etc….comfybelly is another great one that caters to multiple diets.
:-) Shelly
Colleen…sorry-tablet user! :-)
Hi Shelly! I was never much of a blog trawler until I started SCD–now I’m always checking the web for recipes. There’s a lot out there! And some pinterest people have done a good job of collecting ones from various blogs (ie https://pinterest.com/jnd23/scd-ethnic-dishes/). The woman who does comfybelly just came out with a new cookbook, too, I think. Lot of yummy options out there!
Don,
Great to see your story and great posts.
Continued health and healing.
Shelly
Hi Shelly! Hi Colleen! I was doing pretty good until about 2 weeks ago. I started on some Freeda vitamins – multivitamins, vitamin B and Calcium. I added them slowly but all of a sudden I started having problems again. I quit them and am feeling a little better. Still going too much and bleeding. I am going to try some L Glutamine next and plan on doing the fecal transplant in a couple weeks. I am hoping that is the magic bullet! Hope you are all doing good. Take care and have a great week!
Don
Hey Don,
So many factors so little time.
Good luck and me us posted.
:-) Shelly
that was keep us posted..damn auto correct
Don, Sorry to hear you had a bad reaction to the supplements. Maybe you tried introducing too many at once? Not all the Freeda are SCD legal, but they do make some specifically for us. There’s also the gipro scd supplements. It took me a while before i could handle a bunch of supplements daily. Definitely give the L-glut a go–it really helped push me forward in my healing. (I still saw blood for a while though. I guess we all heal at different rates.) Both Shelly and I take VSL3. It’s not technically scd legal I don’t think but has been a game changer for me. Are you going DIY with ft or do you have a dr who will do the procedure? Keep us updated and best of luck!
Hi Colleen. I think I did introduce too many too quickly. I did buy all SCD legal supplements and I have tried GI Pro Health before too. I plan on doing the FT myself. I do not have a doctor at this time. I am so disgusted with the whole medical system! I blame them for much of my suffering. They just do not care about anything but getting me on their drugs.
Please take notes along the way and keep us updated on the FT! I think it’s really a miraculous thing how well it’s worked for some, and how relatively easy it is to do. Best of luck in the coming weeks!
Well my wife gave me a nice Fathers’ day present so I did my first FT yesterday. What a strange, frightening experience. I did good for the first time and learned a lot. I was able to hold it in for most of the day. Still had a lot of D last night and didn’t sleep much. I still believe this will work. It will get easier to do too. I did vitamin E enemas all week and got most of the bleeding under control. I am strictly on the SCD diet and I think that gives me a major advantage. Here’s the procedure I used if you are interested:
1) collected the magic ingredient from my wife
2) warmed about 1 cup of distilled water to 98.6°
3) added water to the magic ingredient and mixed with plastic fork until quite runny
4) strained using an old kitchen wire screen strainer. I was hoping I wouldn’t have to do this but it was too lumpy and would have surely clogged the turkey baster.
5) added 6 psilluim fiber caps (I had these emptied and ready to go)
6) I lubed the tip of a turkey baster with Vaseline and sucked up the formula, turning the baster tip up to allow me to fill it completely. That was too much so next time I will just suck one bulb full into the baster
7) It feels weird pushing the formula in and I thought I was getting a lot of air but I wasn’t. It just has to be done slowly as to not cause too much pressure on the inside of the colon.
8) I laid on my left side and tried to relax. I had to really go into a meditative state to be able to hold it at first.
I tried to roll onto my right side but that made it impossible to hold and I had to go to the toilet. I had some more formula so I did it again and only put one bulb full in. This time I laid on my left side until I was sure I was ok. I wanted so bad to get up and clean the mess up but I just waited. Next time I will have more paper towels and some wet paper towels handy.
All in all it wasn’t as bad as I thought it would be. I am going to do it every time I have the opportunity. It was weird because the plan was for Saturday but my wife couldn’t deliver. I realized that as long as I had everything ready I could do it anytime she provided the donation.
Let me know what you think and if you have any suggestions. I will update on my progress.
Thanks,
Don
Congrats Don on the FMT Round 1!
Can’t wait to hear how it goes moving forward! keep us updated for sures!
Happy belated father’s day too!!:)
Wow Don…now that’s a one of a kind father’s day gift! Kudos to you and your wife. Sounds like a lot of trial error and a lot of comedy material. Perhaps you’ll write a new song and maybe a duet with Adam?! :-) oh and maybe you could design a better “turkey baster”?!:-)
Good luck and we look forward to your updates and hopefully progress. You should check some of the other FT stories and you can get info and ask people who have the experience or post a new story to start a new accessible/FT thread…just a thought because not everyone will see your questions/suggestions on this one that may have some input for you.
Good luck…UC is a family affair! :-)
Best, Shelly
Hi Shelly. I just saw your reply today! I guess I should have kept checking. I plan on doing another FT using my daughters’ stool. She has always had good BM’s and I’m thinking the variety might be the ticket. She’s 34 and wants me to get better so she is totally on board. So far I don’t really think the first FT did anything. I started the probiotic and L-Glutamine 2 weeks later and that seemed to help. I still want to take a big step up and get a lot better a lot faster! I know healing takes a long time but I am tired of this shit. Literally!
Take care and I hope things are good with you,
Don
Hey Don…no worries. I saw your post the other day- So glad you are feeling better no matter how you get there. Baby steps!
Best, Shelly
Thanks Adam! It’s pretty exciting to think I may someday be cured and be able to eat normally. I will never go back to my old ways as I have learned so much about diet and nutrition through this, but I wouldn’t mind not being so restricted. Just to be able to stop and eat at a restaurant once in awhile would be so nice!
Right on Don! Oh I know you want to put back a couple Big Mac’s dont you!!! (sure does sound tasty actually:) used to love them (and the whoppers too for that mattter)
Yup! Busted!
Hey Don! I’m just now seeing the new updates to this thread. Very exciting that you’ve embarked on the FT journey. Did you do it again with your daughter’s “donation”? It seems from what some of the other FTers have written on this site that doing it consecutively day after day is what led to total remission. Was there a reason why you only did it once? And did you see this piece written by a stool donor for one of the NYT blogs: http://opinionator.blogs.nytimes.com/2013/07/06/why-i-donated-my-stool/
I know FT grosses out a lot of people but I don’t find it yucky at all. I think it’s pretty awesome, actually, that it could be that simple. I’m very keen to learn more about it, so I’m glad people like you are spreading the word. And maybe a cheap blender for this very special purpose would get rid of the lumps more easily? Probably a worthy investment. :-) Good luck to you!
Hi Colleen! My daughter was getting stressed out about so many things going on in her life (buying a house mainly)that I told her not to worry about donating right now. I haven’t done another FT since and I don’t really know if the one I did had any positive effects. I started The Ultimate Flora Critical Care probiotic and L-Glutamine a couple weeks later and that seemed to help a lot. I am still healing and living in fear of having an accident but have had a couple restful nights which helps a lot. I only did it once because I work a lot of hours and spend my evenings cooking since I am on the SCD diet. After dinner I am just too tired and that’s not the ideal time to do it either. Best to wait a few hours after eating. I want to do another one soon using my wife’s donation again. I am also looking into FMT clinical trials and have feelers out for that. I didn’t think it was gross either. I considered it liquid gold!
So I had my colonoscopy with lots of biopsies yesterday and came through it just fine. Hated doing the prep but the doctor was against hydro therapy which they can do with healthy patients. That was the main reason I went to him! The other reason was that I was looking for a younger doctor who would help me with home administered fecal transplants as this time I want to do it right. He said my condition was serious and is very concerned about cancer since I have only been maintaining by diet. He said we could discuss treatment options once he got a look and determined what state my colon was in now. I mentioned fecal transplants during that first visit and he said no that wouldn’t work but that he was open to talking about it. That was my ray of hope! Now I must prepare to meet him again to discuss the biopsy results and present my case for home fecal transplants. I plan to give him a copy of Michael Hursts’ e-book – Fecal Transplant Cures Ulcerative Colitis and anything else I can find on the subject. Borodys Protocol, hopefully find some case studies too. I will let everyone know how this goes and plan to start a blog documenting this part of my journey and eventual cure! I truly believe in fecal transplants. It makes so much sense. His argument was that no studies have proven it successful for UC. Well have a goddamned study then!!! I plan to prove it works just like it worked for Michael!
Don
I can’t believe it’s been almost 3 years since I have visited this site! I am completely free of UC and healthy again. I did 10 transplants in 10 days and the new bacteria slowly repopulated my system. It took awhile to heal physically and emotionally but I can say positively that FMT cured my UC. I have written a book about my experiences and plan to publish that to help others. I only came back here because I googled my name and this image and link came up. How are you all doing? How are you Adam?
Don
What is going on Don!!!!
Great to hear from you buddy!!!
Was for sure wondering about you since it has been (can you believe it…) 3 years since you wrote this story!
So so very glad to hear you are well, doing well, and rockin the FMT transplants. As you have probably seen, there is lots going on in the world of FMT for quite some time now, and always (ALWAYS) good to hear about a UC’er like you having a positive experience with it! Way to GO!!
As for me, I’m doing fine. I’m living back over the other side of the Atlantico right now where my wife is from, and actually a few hours ago just got back from a long weekend in a sweet town called Porto…its in Portugal…where they be a storing all the port wine…
I’m still doing well with the diet thing. I have added in some home made sauerkraut several times a day most days of the week, and I think it also plays a positive role in the whole game for me and quite a few others.
Keep us posted and so so happy for you! When can I ask did you do the fecal transplants?
–Adam
Hi Adam and great to hear that you are doing well! I just Googled FMT and saw that there is definitely alot going on with that now. That’s great! I did my transplants in October of 2013. My GI doc wouldn’t even consider the possibility that it would work and he was determined to remove my colon. I am so glad that I took a chance and did the home fecal transplants. It took awhile to heal but I am finally cured and experiencing no problems at all. I believe that gut bacteria is responsible for many conditions. The problem is that in order to do what I did you have to be very desperate. I was and now I have my life back. It looks like it may be possible to get fecal transplants in a clinical setting soon. I am hoping someday they may even go so far as to offer a treatment to cure other conditions such as obesity and autism. Wouldn’t that be amazing!