Hi My Name is Tarunn (AKA UC Family Boy) and I was officially diagnosed in the tail end of 2012 with UC. I am 1 of 5 family members with an autoimmune disease and 1 of 3 with IBD. Looking to move to London shortly after getting a new job :-)
Some more about me:
I have evidence that UC can be cured
Currently just started having slight rectum inflammation with clear mucus on occasion, this occurred after visiting India and Sri Lanka which triggered my UC.
Colitis Update from My Experience
I want to express my journey since May 2012 when I last wrote, and what highly interesting information I am finding. I hope this is of help to others and want to create the chance for advice and discussion of possible opportunities to rid UC.
I can say, with absolute that I got UC after I drowned in Miami in 2010. I had symptoms mildly on off until the beginning of 2012 when they hit me full force. Than it was a story of trying to get myself in remission. Prednisone, Asacol, Coliform; it didn’t matter what I tried I kept relapsing. To make this clear, I will give you a time line;
04/04/2012 – After walking into A&E at night I was lucky enough to have a GI on duty, and had a Sigmoidoscopy done. At this point I had severe diarrhoea, blood, mucus. Due to a lack of preparation and extreme flare we could only go to the Descending Colon.
Report from scope and biopsy; ‘Large Bowel mucosal fragments with severe chronic inflammation. Moderate Architectural distortion and associated mucin depletion’.
I than spent most of the rest of the year on Prednisone, symptoms would come back at various points. I kept my research ongoing as no pill that was given worked.
10/09/12 – I was due to have my First colonoscopy but I started flaring full force 2 weeks before this date, and 1 week after finally coming off Prednisone. As I had done all the prep, I went in for the scope only to be told (rightly) that due to the inflammation they couldn’t do the procedure. I convince my GI to go in a little (‘we came this far, let’s have a peek doc’).
Report from the scope; Rectum; Ulcerative Colitis. Sigmoid Colon; Procedure limited by clinical Judgement (severe UC)
Descending Colon; Not Visualised (due to above limitation).
GI Suspected Pancolitis, I concurred due to symptoms.
I was put back on Prednisone, and we discussed more advanced drugs that would switch off my immune system should be considered. If I relapsed than we would have no choice but to move up from Asacol. It was around coming off the pred just before the scope I started the SCDiet. I re-read the book, I mastered every part of my bodies relationship with food. I introduced supplements and attempted to regain weight that I had lost through several extreme flares.
SCDiet worked, but anytime I added something I would struggle. But I don’t think this was a reflection on the food intake, but something more advanced; and due to my understanding of this, I realised it’s not a matter of if SCD works or not (A major debate that is still occurring today), but a matter of putting more important stages in place before I do SCDiet.
In the summer, (when this picture of me whilst in a flare in Tunisia) I decided from my research what was actually occurring.
I am going to go straight in with some scientific facts. It has been suggested that IBD is a combination of a miscommunication between our immune system and how they response to our microbiota. IBD patients have been shown to lack sufficient t-bet cells. These monitor the Dendritic Cells which sample the microbiota and manage the homeostasis. Now t-bet cells are regulated by the peroxisome proliferator-activated receptors PPAR which transcript DNA. PPAR is governed by ligands. Most of western diets have large amounts of Omega-6 (veg oil, canola oil…) which are proinflammatory. Extra Virgin Oil or even Fish Oil have anti-inflammatory properties and can down reg signals when utilised by PPAR. Interestly Asacol is a ligand which is aided by being up regulated my PPAR.
PPAR has many roles to play in autoimmune diseases. For most it would be advantageous to take Fish Oil or even EVO. But for those that this does not work for, it is due to a more underlining issue that needs to be resolved before utilising EVO (in the same way other stages need to be implemented before taking full advantage of SCD). This of cause is the gut imbalance.
OK so this is the chicken or the egg bit. What happened first? Well if our diet is such as it is, than expression of PPAR correctly is not achieved, than t-bet cells themself is not up regulated and therefore an appropriate response is not achieved. Therefore a Cytokine response is aggressive, and this effect has been reported to increase the growth of specific bacteria and enhance virulence; an imbalance has occurred.
Now I have glossed over the real details here (I haven’t even discussed SCFA encourage the expression of PPAR and how this itself start to explain why UC is a disease starting from the Rectum…) so this is a summary more than anything.
So what have I learnt? When I drowned my body was under attack/being injured so Cytokine response at the extreme. Although inflammation is a normal response, in the case of a body shift like pregnancy, food poisoning, anaemia, or even drowning/ coupled with an unhealthy diet (there is a reason a diet Must be healthy so it can support your body daily and when definitively needed…sounds simple But True), the response was uncontrolled and excessive (Maybe when I drowned it would of always been, but I wonder if the signal senders had enough source info to recruit t-bets??).
OK so what did I do? Almost 2 years flaring and needing to implement this information I decided to couple this knowledge with another area I highly believe in; Fecal Transplant. I got my dad tested and decided to do this at Home after realising the only official clinic that does it here is not really set up to deal with IBD (only C. Diff in my opinion).
I wanted to do 30 days, as on the 31st day would be my next booked in Colonoscopy. I read about all these reports/papers, blogs, websites and personal stories, but matching up what i was learning I decided it was not only about doing FMT and jumping on a high fibre diet to encourage the growth of the new bacteria. It was about also encouraging the immune system to do its part (It is this missing link on current FMT that I feel the procedure has had mixed results). I started the transplants, whilst in a flare and I only managed 9 infusions due to lifestyle commitments/ failed infusions (expect a few of them) and my donors ability to go or not as the case at times.
I introduced EVO and Fish Oil and a diet that encouraged more Omega 3 and less Omega 6. Part of the reason I stopped after 9 infusions was because all my symptoms went away, and I was mimicking my donors bowel movements by only going once a day (morning). I was also able to eat a varied diet with some bad foods but without any effects (I did limit the bad foods considerable but when you are well you are well).
I then had my First proper Colonoscopy
Rectum; Ulcerative Colitis. Sigmoid colon; Ulcerative colitis. Descending Colon; Normal…
Report and Biopsy; ‘Large Bowel mucosa showing Mild crypt architectural distortion, but without diffuse increase in Chronic inflammation’
Just to summarise; I went from Moderate crypt distortion to Mild, and from pancolitis to only effected until the Sigmoid.
I still believe my whole colon is recovering and can equally (as per current symptoms) develop back.
I believe I also have an imbalance, maybe not as bad as before.
I should have continued the FMT beyond just seeing great results to making sure the full balance is back.
This time, I will do 30 FMT before deciding to continue or stop, continue my intake of Omega 3 and lowering of Omega 6, and start taking BB536 Probiotic (which has shown to upreg t-bet expression) and prebiotics
So here I am, mini flare and looking to FMT its ass out of here.
I hope this information is of some use, any comments/suggestions is encouraged.