36 years old and recently married (May 2012) to a beautiful girl. Ironman triathlete (not at the moment) and airline pilot from Australia. Diagnosed Ulcerative Colitis at age 19 (1997) with a 2 year flare. Controlled then with 5ASA Sulfasalazine. Symptom and drug free for 15 years (had appendicectomy) and then had a nasty flare in 2010. Treated again with 5ASA Sulfasalazine and Mesalazine En’s. 18 month remission and now in the worst flare of my life. Praying that something saves me from losing my job and my life.
Some more about me:
Previously very outgoing and high sport driven. Over the course of the last two years, have gradually had to pull back from most activities and invitations due to this evil, slow consuming illness.
Trying FMT (Fecal Microbiota Transplant Therapy) with Prof Borody at CDD in Sydney in the hope it will provide a non-surgical cure. Failing that I will need to have surgery to retain my job and to service our mortgage.
Severe circumferencial UC to 35cm
>6 bloody and mucous BMs/day
Lower abdomen discomfort and pain
Tensesmus and Rect pain
Currently being treated by Prof. T Borody (at CDD in Sydney) with FMT in the hope of a sustained remission without any more drugs. FMT started two weeks ago and have been penciled in for Remicade to assist in speedy treatment.
Dear FMT…Please Save Me From Surgery
Very, very scared to be in the position I am in.
Caught between a rock and a hard place. If FMT doesn’t work, I will almost certainly have to proceed with surgery in order to maximise the chance of continuing my career (strict medical requirements that may be satisfied if I get a good j pouch result). I see having a permanent bag as the end of my life and can’t entertain the idea. So unsure and nervous about the statistics and the stories of bed soiling at night.
Have read so very much about all UC matters on the net. Research papers, SCD diets, FMT/HPI, LDN, JPouch videos and my head is spinning from it all (not to mention the prednisone). There’s a lot of information out there and some of its out of date. Combined with an archaic medicine system caught up with red tape and capitalistic pharmaceutical companies, I’ve lost a lot of faith in medicine.
I really want to keep my colon and remain medicine free. Recently bought a suitable SCD yoghurt machine here in Australia (amazing how hard it is to find one of those darn things here). Hoping that the yoghurt might help although I’m on orders to remain on a high fibre diet in order to feed the good bacteria from FMT.
1. I have to start doing home FMT and am very scared about doing the process at home. I’m really troubled that I won’t be able to look at myself in the mirror and also worried it will affect the perfect, married home life we have.
– Has anyone got any advice or a similar experience FMTing with your wife etc?
2. I’m very concerned about the Remicade that they want me on. They say I have severe distal colitis and the prednisone is not doing much and needs to be reduced. I read about this drug years ago and recall hearing some very bad things about it. I always envisioned that I would have preferred the surgery to this level of drugs. I have been told they want to use it for a month or two to calm the inflammation and let the FMT repopulate the colon.
– thinking of the long term, Is a short course of Remicade safe in everyone’s opinion?
Sulfasalazine 500mg BD
Tried the SCD with very limited results for a short amount of time – had to go n high fibre diet to support FMT
*Considering (and scared of the effects of) a short course of Remicade
written by Craig
submitted in the colitis venting area