recent picture of me
Intro:
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
Symptoms:
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
12/11/13
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.
written Tarunn
I am from England and live an active life involving many different sports and I get to travel around a bit to different countries through work and personal ambitions. Worried how my life will be determined by UC!!
Tarunn…I have to say that I agree wholeheartedly with the use of FMT as a possible, dare I say…CURE for UC. My question is, do you think that we can permanently heal our gut/colon with this method, or do you think that we have to continually or even periodically administer FMTs?
I don’t see why we cannot heal…there are many people that do not have UC who live unhealthy lifestyles and who do not have good diets.
Hi Bev,
My opinion, and by no means the truth is that although modern research is looking at DNA and UC and bacteria and UC, the closest research is from back in the 80s about the high volume of sulfur reducing bacteria?
What became evident is I relapse when I have high sulfur foods, and relapsed in India because of being told buffalo milk is good for me so i had it…
So doing the math I went back to an old remedy SAMe. It’s active ingredient S-adenosylmethionine is ideal for cellular reactions including detoxification of constantly produced hydrogen sulphide in the colon. Here’s a few good papers
http://www.ncbi.nlm.nih.gov/pubmed/8881814
http://www.ncbi.nlm.nih.gov/pubmed/15259382
So where does this take us? SRB can degrade the mucus layer, get close to the epithelial cells and create biofilms. These biofilms are shared with other strains of bacteria. They do this so they can protect the colonises whilst not completing for food.
So whilst in C Diff colitis, where we are outnumbering one strain of bacteria, in UC we have to disjoint a biofilm made up by a group of strains, this I can only imagine is difficult for FMT. Hence why several infusions work.
The only thing is Bev, FMT works but everyone is different based on the extent of the disease, and until we understand why UC is developed, we can only than work out the culprits and target them with FMT.
I believe, as shown bacteria monitor the immune behaviour, and SCFA is a bacteria derived energy than helps the system. But other bacteria derived ‘energy’ like hydrogen sulphite can also monitor the immune by blocking certain signalling and therefore increasing certain strains and allowing them to develop, create biofilms and survive. These gameplay have the immune response on there side (like a hacked computer). So it’s not just about clearing out the bacteria, but getting the immune back on side.
Have you tried FMT?
As always…thank you…very interesting. I will read the link that you sent.
I have not tried FMT, but I am certainly game to! I was supposed to see a FMT specialist over a year ago and never did get the phone call from that specialist. Since I am in remission, I just sort of forgot all about it. I would do it in a heartbeat, though.
:)
Cool, with my brother in Toronto and the advance healthcare in Canada I always saw myself going to Canada to do FMT. Do you know of any in the Toronto area that does it?
Where was this specialist? Shame they didn’t get back to you!
Kinder interesting how you talk about your drowning, was this your trigger for UC? I have heard stories from people face to face about how they cured UC from a major heart attack. What I find interesting as well is you talk about Cytokine, I have zero clue to what this is but some reading about it I understand it’s cells that send signals to immune response.
Then I read this : Cytokine storms also were the main cause of death in the 1918 “Spanish Flu” pandemic. Deaths were weighted more heavily towards people with healthy immune systems, due to its ability to produce stronger immune responses, like increasing cytokine levels.
Could it be people with UC have this problem because Cytokine storms has (produced to much immune response to gut bacteria), this could be how we trigger UC.
I wish I tried the FMT sadly I had my colon removed 2 month ago, doing very well otherwise. I still try to understand all I can about UC for my younger sister as she still has it.
Hey Richard,
I am glad you are doing well. I think you are 100% right! UC have a greater cytokines response to bacteria. I just don’t know if this shapes the microbiota or if it’s because of an already imbalanced gut.
In other diseases like arthritis, high cytokines responses result in RA damage. It’s normal to have pro and anti cytokines responses, it’s just we have high Pro. It’s why some do well with Extra Virgin Oil. This is a good read;
http://www.ncbi.nlm.nih.gov/pubmed/21874330
I have an older brother with RA, so I read a lot about it, and interestingly find many links to IBD. Like the link to bacteria
http://communications.med.nyu.edu/media-relations/news/study-links-intestinal-bacteria-rheumatoid-arthritis
Likewise also have a younger sister with UC, but I feel she looks upon me as a crazy scientist!! I think she is content with mild lifelong symptoms while I belief this can be solved. I won’t solve it, that’s for sure, but I will get myself and anyone up for the ride as close as, until the real guys get it right.
I do feel drowning caused my UC. It could of been when they pumped my stomach, it could of been the antibiotics, it could of been a response to the episode, one that was inappropriate….
Keep looking into cytokines and UC. I think there is something there, keep us posted. I’m just looking into the inability to detox gas build up in the colon, hopefully this all links together somehow. Cytokines, hydrogen sulphite, bacteria, SCFA, t-cells…
Tarunn… You have a really good handle on this.
Everything you shared is fascinating and I
can understand it all from a nursing point of
view. Thanks for doing so much of the leg
work in discovering such helpful info. Maybe
your comment can be copied or forwarded
to whoever wants their doctor to review this.
I’m thinking the research docs are looking
at these things.. but it’s taking a long time for
the docs in GI practice to pick up on the
different things you mentioned. Pan colitis
is one heck of a diagnosis to recover from,
and seems like you did well without the major
pharmaceuticals that are routinely used.
Bravo! Please keep us posted …. K
Thanks for the support Karen. I guess its the fear of not having control and UC controlling me that I do what I have. That and also asacol hasn’t worked. I truly wish it did, I do.
I find, and correct me if I am wrong, that medical institutes only discuss certain topics based on it going through vigorous screening. And most of that result in a new tablet. So for example, a doc might say;
So you want to bring up FMT, well at the current point not enough has been shown for it to work, larger more focus tests need to be done. Currently we though have this new drug I want to put you on. It is shown after going through phase 1,2 and 3 with human testing that it works by blocking TNF and restoring appropriate cytokines levels…
This is why I don’t see GI, not all mind you, but most getting actively involved in discussing the exciting mystery of UC. They stick by there guns, and I Fully appreciate that, because they leave the potential discoveries to the scientist. I personally would like for us to be talking to scientist whilst in a consultation with our GI. Wouldn’t that be most resourceful for the guys trying to join the dots to UC.
So, how have you been?
Hi Tarunn,
I saw this article and have become excited and hopeful just by reading it.
I was diagnosed with severe UC nearly 2 years ago and have gone through the Asacol and Prednisone and am trying to do everything I can to stay off immune suppressants. If you would’nt mind going into more detail I have a few questions regarding the Fecal Transplant.
1. I am trying to get into a study where they would do this to me but you said it would not be as effective on UC only C.diff, why is that?
2. What would I have to get tested in order to perform this on my own?
3. And the big one, How o I do it/ where can I find more on the correct way to go about doing this.
Thank You
Hi Aris,
I was discussing with Bev above about the effectiveness of FMT for UC and C.Diff.
In C.Diff the strain coats the colon, whilst in UC bacteria create biofilm deeply imbeded. So it requires several transplants to get anywhere near trying to get a solution. The best results have come from using immune suppressants and doing FMT. This way, its a direct fight between the bacterias and not the good bacteria and the immune syste which at this point is on the side of the bad bacterias.
I always think it is a good idea to get a comprehensive stool test done before doing FMT. This way you have a flag in the ground and a starting place.
With regards to doing this, there is many good resources, some of which can be just reading peoples stories of doing FMT, like on power of poop, healing well and on here also.
It was doing this I came across the idea of using enzymes on an empty stomach to break up these bioflims than using the standard protocol of antibiotics.
Power of Poop has a DIY home transplant section which helped guide me.
Mine went like this;
Dad tested and became donor. He would go at 4am just before leaving for work. He would than text me ‘your gold is downstairs’, or upstairs depending which bathroom he went in..
I would wake and make my dose in the morning, enough to do one in the morning, and than one frozen for the evening or next day. Generally there was enough from one donor for 2 days. But expect some failed attempts, based on struggle to keep in which could be a reult of existing inflammation or being full. It is important to manager your food intake with your FMT. Also time is important as once you do this at home, you will need to do some excerises to encourage the FMT to work its way down the colon.. I can definately see the advances of getting this done by a clinic than at home.
The MOST important thing is, your donor. Pick a reliable person, get them tested; blood works and stool test, check there medical history, and if they have taken any medication and for what…
I spent 6 months researching FMT before finally doing it, so I would recommend if you are going to do this at home, than learn learn learn everything
On another note, I feel the SRB have highjaked the immune system, in a way that fatty acids are not well detoxified, meaning encouraging an environement for them to grow. It is than key to first sort this system out before effectively doing FMT, as FMT is about bringing in bacteria that will encourage SCFA, which wont do its thing if we cant detox the H2S!!
Great!
Thank you so much, this has really helped.
Tarunn/UC Family Boy…alas, your post!
It does sound quite promising, if not for a cure, at least another treatment when UC rears its ugly head…to promote good gut bacteria and heal the innards! As you know, I think may of us have more genes that predispose us and with all the right or actually wrong conditions…bam.
What is your latest update? I’m sure you are keeping great track of everything. Don’t forget about the stress factor beating down our imune systems. Hope your job and move are going well?
Keep us posted and best of health,
Shelly
Hi Shelly, how’s things?
I agree, genes for sure play a big part. Currently I believe we are unable to efficiently detox fatty acids and this encourages bad bugs, inflammation and for some mega colon…
How much of this is genes? How much is it an infection of some sort? Whatever wherever genes are getting exposed.. I feel the bad bugs have high jacked our system, this is currently where I am with my thinking…
Job is good and move this Sunday so yep, trying to keep an eye on them stress levels. UC is fine at mo, with a lil end inflammation, I don’t have much UC to fight off but still realistically feel its a 2 year plan I have to truly implement to feel UC free forever (even if it’s always gone be something I’m prone to getting again like a common flu…)
How is things with you?
Tarunn,
Sounds likenanpretty darn good plan! I think about all that stuff and our ever changing guts and how things sometimes work and sometimes don’t, etc, etc. It’s enough to explode our UC brains for sure! The gut bacteria being the bottom line( haha…punny!) Anyway, that’s why the science of it all is so interesting and including the SCD diet…which I stay about 95-98% still and mes around with the probiotics, omega 3’s and vit d and the Chinese herbs. It is ever changing. That’s also why I think people can add some things back in that are not SCD friendly, but are gut friendly.
The more we know, the more we know how much we don’t know! :-)
Anyway, I’m hanging in there…finished the 6+ month flare started by the sinus/ear infection(too scared to take antibiotics) and okay until March with my second case of Iritis, almost 2 years to the date!! Thought that was done, but went today and it has a small recurrance. Overall, always keeping my fingers crossed! Thanks!
Keep us posted…will be an interesting journey for sure.
Best, Shelly
Hi Tarunn I’m currently in a double blinded clinic trail for FMT I do infusion s 5 days a week and have to continue for 8 weeks, my enemas come frozen and as it’s a double blinded trail have no idea until 8 weeks if I had the fmt or placebo,. What diet do you recommend my GI tells me to just eat normally but I think I should incorporate good food in diet. Thanks for the post and wish you well
That’s exciting Anne. Keep us updated, how has it been thus far?
From a trial point of view, they want you to eat normal, this would aid there test to be more consistent. Remember your a guinea pig, but from your point of view you want to have the FMT and you want to encourage it to work. Reduce sulfur foods, milk, dairy, eggs, red meats. Eat more veg, and fruit…get onto some prebiotics but not a lot, and only every other day. Too much too soon is not fair on our sensitive colon at this point. Either way a diet like this is good anyway. Although generally I would be cutting back, whilst on the trial I would cut them out completely.
I am understand the believe UC is in a state where bad bugs have high jacked our system. So we need to help our system And get in there with FMT. I am still trying to work out the helping the system bit, see what your doc thanks about 3 x 400g of SAMe a week. I feel this will help the system with cleaning up the excessive fatty acids sitting around.
Back when I was first diagnosed in 2011, I saw research on FMT and thought it to be very interesting. I did realize right away, that no doctor here would perform it, then my flare got better through meds and diet. Now, three years later, I am miserable again, pregnant, but losing weight, bleeding, in pain, you guys know what I mean. My husband cannot stand watching me suffer anymore, he made a resolution that we’re doing our own FMT. We ordered supplies and we will start in five days. Incidentally, I am on a 7-day antibiotic course that ends in 4 days and I read that it might be beneficial to have the gut cleared for the donor poop. I am excited to try this, and it sounds like it might work. I mean, I understand why it would. I just hope we can do a good job at home and my gut embraces my husbands fecal matter. So romantic.
Rebekah!! That sounds wonderful…(disgustingly wonderful…lol). I’m so pleased that your husband will participate.
Please let us know how this all goes. I sincerely believe that FMT can offer long term remissions!!
:)