Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

My UC Journey Part Two – Fecal Microbiota Transplants (FMT)

Yasmin started fecal microbiota transplants recently

recent picture of Yasmin and Morgan

Intro:

I’m 24 years old and live with my lovely partner Morgan in Farnborough, Hampshire. Ulcerative colitis symptoms started January 2012. No periods of remission at all until October 2014.

Some more about Yasmin:

I enjoy time with friends and family and our lovely family dog Lucy. I’m also a massive property geek and run a small renovation business with Morgan – one we hope to work full time for one day! I wanted to share my journey with others just as they have shared with me. This website has given me a lot of hope over the last few years and this is where I first read about FMT (or fecal microbiota transplant).

Colitis Symptoms Right Now:

Hardly anything!!! Some urgency occasionally. Some bleeding occasionally. BMs x 2.

My UC Journey Part Two –  Fecal Microbiota Transplants (FMT)

Last time I wrote I was still on Azathioprine (Aza). It’s only been 6/7 months since I wrote but so much has changed. My life has changed dramatically.

So the Azathioprine was making my hair fall out (this started in about March). At first I thought it was imaginary, so did my family, but it was relentless and it started to thin very quickly. I don’t know what triggered it, I had been on Aza for about 8 months when my body started to tell me it didn’t want it anymore.

A few dose changes over the next few weeks/ month made no difference and so my IBD team changed the meds. They put me on 6-Mercaptopurine (6-MP) and Allopurinol and told me this was a purer version of the Aza and most people don’t experience as much hair loss on this. Don’t quote me on that – I realise over the last two years that sometimes I only heard what I wanted to and I didn’t always take in the full extent of what the doctors were telling me.

June 2014 I had a consultation with the Taymount Clinic in Hitchin enquiring about Fecal Microbiota Transplants (FMT). I paid £150 for an hours chat with Glen Taylor who told me all about FMT and all the good the treatment has to offer. The treatment costs 4k and the waiting list at that point was about 6 months.

I told my specialist at the hospital I was going to book into the Taymount and she said I was crazy to spend so much money on it and that they would do it there for me, at the hospital instead and it would be free on the NHS! The registrar was trying it as something new as he, like me had researched FMT, and it made perfect sense. He would do one treatment for me first as a Colonoscopy and see how that went.

Glen at the Taymount told me that one treatment on the NHS almost certainly wouldn’t be enough (he recommended I have at least ten treatments) but to give it a try if I wanted and book in with the Taymount once I had had the FMT at Frimley Park if I didn’t get the results I wanted.

6-MP didn’t change things, my hair continued to fall out. Big thick handfuls of it in the shower like I had used hair removal cream! The meds were taking more from me that the actual disease.

Along with this was the fatigue, the depression and the nasty UC symptoms of insane cramps, bleeding, frequent toilet trips day and night and the urgency. I can’t count how many times I didn’t quite make it to the loo… I felt like a toddler being potty trained.

I didn’t leave the house much and when I did I was in constant fear of what might happen. I can look back through my facebook photos now and I have a disaster toilet story for almost every picture from the last few years.

I also felt jealous and angry on nights out. I would end up going home early totally miserable that I couldn’t have fun and let my hair down like the rest of my friends. I would attend birthday parties out of politeness, take loads of Imodium out of fear of something bad happening and then spend a week recovering from the one glass of champagne I’d had.

I’m kind of vain :) and so losing my hair just wasn’t an option. I came off the 6-MP, informed the specialist and she told me “If you come off your drugs and you flare again, we are almost certainly looking at surgery being the only option”. Stupid or just desperate, I took the chance and came off all meds waiting in hope for my one FMT the NHS had promised me at Frimley Park Hospital. I was so glad to be the Registrar’s guinea pig.

This was booked in for September 4th 2014. I waited for six weeks – pinning all hopes on the treatment, hoping that everything from that day forward was going to be OK.

On the 27th August, a week before the FMT at Frimley Park, the hospital cancelled due to funding and told me it was unlikely the board would change their minds about allowing me to have the treatment, as the costs were so high and the laboratory couldn’t shut down just for me. I was devastated and in a mess because I had come off all meds and was deteriorating with every day that went by. I sobbed that night, cried and cried. I felt that this was it, my path was written, I was meant to have surgery and have my colon removed.

I was terrified and yet determined to face it through and take on whatever was ahead. My symptoms were getting worse by the day and I knew that the Taymount waiting list was six months so I would have to go back on the dreaded steroids to pull me out of the flare… if they didn’t work then surgery would be the only option.

Thursday 28th August I booked my December slot at the Taymount clinic that would be split five days before Christmas and five days after New Years, a slot that most people didn’t want due to Christmas being in between. I had wasted two months nearly, waiting for the FMT at Frimley Park! Friday 29th I told the Taymount to contact me if they had any cancellations before December as I was very aware of how downhill I might go in the interim.

Monday 1st September the Taymount contacted me and told me a lady from America hadn’t turned up for treatment and so if I could come tomorrow they could get me started with some preparation and I could start the FMT on Wednesday.

Someone was definitely looking down on me that day. I felt so lucky. I told my boss, I found the money and I packed a suitcase. When I look back now I definitely wouldn’t have made the four months in between without a lot of drugs, if at all!
So now for happy part….

I started FMT at the Taymount on Wednesday 3rd September and had a ten day course over a period of two weeks. I turned up completely terrified but thanks to the amazing nurses there I soon relaxed and over the few weeks gained confidence in the science of the treatment and the ground breaking work of the clinic.

I feel sorry for the nurses who had to calm my anxieties everyday. What if it doesn’t work? What if I’ve ruined it? What if the bacteria doesn’t multiply? What if.. what if.. what if..They were so reassuring and sure enough everything they told me was true.

The weeks after the treatment were not easy. Learning to eat really well and letting go of concepts like ‘low residue and starving the bacteria’ etc. But two months on and I am in the best place I’ve been since the horrible UC symptoms started back in January 2012.

The disease inside me has changed. The bacteria has changed its course. My body feels different. I’ve been medication free for three months now and I feel I have left the UC behind (even though some symptoms still persist) its so hard to explain. It just feels different. The urgency is still there but it’s getting better each month and the psychological element of the UC is hanging around a bit.

There’s no more stomach cramps, no running to the loo in the night, no pain. Frequency has reduced to almost normal but I still feel there is a long journey ahead of me to getting back to where I was before. I’m not sure I will ever reach that place.. and I’m not sure I want to.

I eat healthier than ever, I’ve lost 2 stone, I am full of energy and wake up in the mornings without fatigue. I take probiotics daily and supplements. Vegetables are my medicine now. I don’t feel nauseous anymore, I don’t feel exhausted in the daytime, my skin is brighter than ever.

I have my first follow up treatment on Friday and I will continue to have follow up FMTs for the rest of my life. This is my choice, you don’t have to, but right now it’s working for me and so I feel it can only be of benefit. Finally my hair is growing back…. .it’s so fluffy! I have little fluffy patches all around the sides and underneath my normal hair. A constant reminder of what was before and what is to come.

It’s early days so I will update in another six months time and let you all know if FMT worked for me long term.. fingers crossed hey!

Medications / Supplements:

Steroids 40mg tapers a few times.
Azathioprine
6-MP, Allopurinol
Suppositories
aminosalicylates (5-ASAs)
biologics- couldn’t be offered to me as not available in my area on the NHS

I also tried the SCD Diet but found it very hard to stick to, although I don’t eat many grains these days, sugar or gluten! And I also tried some slightly stranger treatments like Nicotine patches (this made me get sick) and starving the bad bacteria out (this made me VERY hungry).

written by Yasmin

submitted in the colitis venting area




FMT

33 Responses to My UC Journey Part Two – Fecal Microbiota Transplants (FMT)

  1. Adam
    Adam November 21, 2014 at 10:04 am #

    Yasmin,

    thanks so much for sharing!!

    Way way cool to hear another story from someone like yourself who was struggling to get UC under control, but now to hear that you are feeling the best you have in a long time!

    Way way cool, and I hope you will keep us updated on how things go in the future. For now…have a great weekend and enjoy your Friday night:)))

    -Adam

  2. Bev November 21, 2014 at 5:56 pm #

    What a fantastic and hopeful post Yasmin!

    This is the way back, for all of us. It’s all about bacteria. Somehow, we have lost the ‘good guys’ along the way and they must be replenished. I could not be happier for you! I believe that FMT works for the long term, but some of us must do it regularly.

    Please keep us posted. Perhaps soon, this will be available to all and maybe even in a pill form!! We can only hope.

    Keep taking those probiotics. They will help retain the good bacteria.

    I know of what you speak when you say that the UC just ‘feels different’ now. I am there, as well, thank goodness. I know that I still technically HAVE UC, but it is in remission and I feel great! I have not done FMT, but I would in a minute if I could! I have done it with a really good probiotic and I swear by good bacteria being the ‘cure’ for this damned condition.

    Cheers and happy days :)

  3. Ed November 22, 2014 at 2:31 am #

    Hi Yasmin,

    I live in the UK and I wasn’t aware that there were clinics offering FMT here so thank you for posting. It does sound to me like your treatment was quite recent. I do hope it helps. Please could you continue to let us know the outcome, good or bad, hopefully good. It’s a significant cost for the treatment and I’m not sure whether to go down that road or not.

    Many thanks,
    Ed

  4. Yasmin
    Yasmin Bond November 22, 2014 at 3:29 am #

    Thanks Adam. I have been told that the very worst cases of UC can take up to two years of regular treatments to finally get on top of things and so I’m having a special treatment plan put in place for the next few years. There is no guarantee but that fact that I have responded so well so far is promising… Some people don’t respond so quickly and it takes a bit longer to see good results. I’m very aware that this is going to be a long journey and things won’t change over night but for now I’m happy being able to enjoy my days and nights more (not completely) without pain or discomfort. I will definitely keep updating as I hope one day FMT will be much more accessible to all.

    Hi Bev.. What probiotics do you take and what amount do you take? The Taymount believe that probiotics are a must for long term maintenance and they have definitely helped me too. I will continue to take them forever. It’s amazing what the mind is capable of, I go from being complete distraught if I have a bad day to over the moon if I’m having a good one. It used to be so up and down but luckily it’s a lot more up these days. Very interested to hear of your story too.. ;)

    Hi Ed. It is a very expensive treatment but the life it has given back to me is so worth the cost. What I love about it the most is being medication free. I hated the meds more than anything in this world!! Now if I have a bad day, fine, but my body flights back instead of the medication doing it for me. Like I said in my story. This isn’t a quick fix and I will continue to do maintenance FMTs for as long as it takes. I hope I’m a case that doesn’t take too long to craic but I’m accepting of the fact it might take years and I may never be normal again. I will let you know what happens in the next few months and if you decide to take the plunge let me know, I will be happy to give you any advice needed!

    • Ella January 31, 2015 at 12:05 pm #

      Hello Jasmin,
      Your story inspired me. My daughter currentlyi on antibiotics Rifaximin. She was flaring non stop for 3 years. Had to go on Remicaid. Diet didnt help, neither psychologist, meditation, LDN.
      Please update us on fecal transplant and hopefully progress.
      Many thanks,
      Ella

  5. Bev November 22, 2014 at 8:04 am #

    I take ULTIMATE FLORS CRITICAL CARE by RENEWLIFE.

    I think the key to these working for me is that I take them EVERY single day, without fail, on a completely empty stomach and then no food or drink (except water) for an hour afterward. At the moment, after taking this probiotic for about 4 years straight, I am in the best remission that I have ever had! No blood at all any more…perhaps it takes a very long long time to build up the good bacteria??? If it does not work for some people, maybe they bail out too soon?

    I really am convinced that the loss of good bacteria in the solon leads to and causes UC. There are a variety of reasons why this may happen….antibiotic use, illness, infection, food poisoning, medications…I don’t think that UC happens overnight, but rather over months or even years, until the good bacteria has been depleted enough to finally cause problems, with no replenishment.

    Sounds right…right?!

    :)

    • Bev November 22, 2014 at 8:05 am #

      ULTIMATE FLORA CRITICAL CARE by RENEWLIFE….that is! It is 50 billion strength as well.

      Sorry for the misspelling…

      • Yasmin
        Yasmin Bond November 22, 2014 at 8:13 am #

        Yes I agree 100%! Good probiotics are the way forward and persistence is key. Do you have a special diet as well? I find I can’t tolerate certain things when very sick and then when I’m good I can eat a very varied diet. I do try to cut gluten, nightshades and high amounts of sugar where possible most days though since the treatment. I do cheat sometimes though! I’ve been recomended VSL3, Precript Assist, Mega Spore and Primal Defense. I currently take VSL3 but I’m going to switch after this round as I’ve been told it’s good to alternate every few months to bring new bacterias into the mix. I also take Glutamine, Vit E and Biomune. The Biomune is amazing for feeding the good bacteria! Good luck with everything and I hope you continue to have good health :)

        • Bev November 22, 2014 at 8:21 am #

          Actually, I eat anything and everything. I’m very fortunate that way. The only time certain foods ever bother me is when I am flaring (which hasn’t happened for over 4 years now except for a minor one when I got the flu shot two years ago). I do avoid straight wheat, though, like all natural whole wheat cereals. They can actually make me bleed!

          I also take L-glutamine, vitamin D, and astaxanthin. All these, along with that wonderful probiotic, seem to be doing the trick for me!

          Good health to you as well, Yasmin. That’s all we need in life, really. That’s everything isn’t it! When you’re sick, life is a grind…when you are well, it is fab!!

    • Bev November 22, 2014 at 8:06 am #

      COLON….not solon…geez…I cannot spell this morning.

  6. Lori November 22, 2014 at 2:13 pm #

    It is important for the glutamine to be fermented?
    Lori

    • Bev November 23, 2014 at 8:08 am #

      Yes. The fermentation is what helps you :)

  7. Lori November 23, 2014 at 10:34 am #

    Thanks Bev. I found out what I am using isn’t fermented. Guess I better get the right one.

  8. HMalcolm December 7, 2014 at 3:52 pm #

    Hey. how things are going? are you still improving?

  9. Riz Maslen December 29, 2014 at 11:27 am #

    Thank you Yasmin for sharing your story!
    I have been doing a whole heap of research in FMT and is something I am keen to try as I too have tried SCD being vegetarian makes it very difficult too! I live in the the South East and am keen to find a way of accessing this treatment. £4000 is a lot of money and for me something I do not have but I would be interested in hearing your progress as I am currently going through a flare up which is making me miserable. I was hospitalised in 2011 and almost succumbed to having my colon removed which thankfully I declined as I knew there were alternatives out there that could get me back to my old self.
    thanks again
    Riz

  10. Yasmin
    Yasmin Bond December 30, 2014 at 4:29 am #

    Hi Riz, thanks for getting in touch.

    I’m sorry to hear you are in a flare – I hope it’s a short one!

    I would say get booked in and have a consultation with the clinic asap. This costs £150 for a telephone conversation where Glenn or Enid can put your mind at ease with what they do. They don’t push any figures or results on you.. it’s just a general conversation about your history and symptoms and you’ll be able to ask all the questions you want to. The treatment really speaks for itself – you’ll know what I mean if you have it done.

    FMT is not a miracle cure. With it comes weeks and months of dietary changes, supplementing and giving your body what it needs. I eat Paleo most of the time but I also eat gluten free substitutes when eating out and I love a bit of chocolate and a glass of wine.

    Everyone is different but I’m doing fantastic. Last New Year I was on so much medication I felt like a lab rat and I had lost all hope. I was in such a dark place. I kept begging the doctors to put me on antidepressants but they wouldn’t because they kept saying it was just the illness making me feel so low :(

    This New Year I’m medication free, my symptoms are 85% improved and I hope to be 95% improved by the end of January. I had a slight hiccup after treatment as I had to take a course of tablets and this set me back a little. I truly believe that with a healthy diet and follow up treatments I will be in an amazing place by the summer. The last three months have been great just starting to believe my body is changing and some days forgetting that I have UC.

    I sleep really well, I have lots of energy and I have no horrible side effects from steroids or immunosuppressant’s. If it wasn’t for the hiccup I believe I would still be 95/100 percent better as I was back in November.

    I know what it’s like to be clinging to this website for relief and reassurance.
    I know FMT is a lot of money but it’s better to do it properly and have the experts do what they know best.

    If you can get the money together then please do it!!! I hope it will change your life for the better just as it did mine and it’s worth a try right??!!!

    Yasmin x

    • Riz Maslen December 30, 2014 at 10:25 am #

      Thank you Yasmin!
      I really appreciate you taking the time to tell your story!
      My flare up is quite bad and I am trying to remain positive and keeping away from gluten/wheat and other foods that I know contribute….
      I want to wish you well and that you may continue on your path or recovery it sounds like this has been an incredible journey for you!
      Please keep us all posted on you progress and I am definitely looking into taking this route as for me it seems like the only option left after pretty much trying everything else. We are all different and what may work for one person may not for the next and thats the chance we all take.

      thanks once again for sharing your story it has certainly given me a lot more hope in continuing fighting my UC!

      Riz x

    • Zenobi powell January 17, 2015 at 8:47 am #

      Hi Yasmin,
      I was diagnosed with uc in march last year, I’m very keen to try and have been researching fecal transplants alot lately, and definitely want to have this procedure done asap. I also lose hope and was thinking this may be my light at the end of the tunnel.

  11. Yasmin
    Yasmin Bond January 18, 2015 at 2:00 am #

    Hi Zenobi.

    Please do give it a try. It’s not a miracle cure but it’s meant that I have come off all medication and my inflamation is slowly calming down. I’m due a colonoscopy in July and my doctor is really keen to take a look and see if the inflamation area has got smaller. I still have off days where maybe my tummy is unsettled or I need to go to the bathroom three times rather than two but all in all I’m in a much better place. If you are like me and all the medication taking gets you down then definitely give it a go.
    Let me know how you get on ;) Yasmin x

  12. Kelly January 29, 2015 at 3:33 pm #

    Thank you for posting your story. I will be receiving a FMT this coming Monday. I am in the U.S., and am able to receive it in a clinical setting because I was diagnosed with c-diff, and the FDA has approved it for that purpose. Had a 5-day hospital stay earlier this month and they found the c-diff. Long story short, oral vanco and IV flagyl didn’t have much effect, and I finished some vanco at home. I have been in a bad flare since October, and it is hard to tell if the c-diff treatment is working when you have a concurrent severe UC flare.

    I have since called the infectious disease doc that I saw in the hospital, because I don’t think the c-diff ever left. He also does FMTs and has a very high success rate for c-diff. There are no promises that it will help my UC, but this is basically my last chance before surgery. (I have a surgery consult on Feb 10th).

    Since I spoke with the doc on the phone, I have been reading non-stop about this topic. A good website to check out is http://thepowerofpoop.com/. The goal is to provide safe access to FMTs to those who need/want them. I have applied to their closed Facebook group, as well. It is a network of people who find donors and perform the FMTs at home. There are a lot of success stories, but like anything in our UC world, it doesn’t work for everyone. Also, the treatment for c-diff can often be a one-shot deal, but treatment for UC takes much longer, as Jasmin relates.

    I am not saying this will work for me, but this is my last shot to save my colon. I won’t know until I try….

  13. Ella January 30, 2015 at 8:18 pm #

    Hello everyone,
    Thank you for sharing your stories that give hope to all of us. My daughter was diagnosed with UC 3 years ago. Never ending flare, while on very strict SCD diet, we ended up in the hospital fir two wks. She was anemic , exhausted, and very very sick. Had to go on Remicaid to avoid surgery. Trying new protocol now, taking Rifaximin 1,650 mg per day. Once stool formed will try FTM. I would like to know if anybody used antibiotic treatment before FTM.
    Good luck for all.

    • Kristina November 25, 2015 at 4:31 pm #

      Hi Ella,

      are you from UK? I have daughter 6 years old, diagnosed with severe UC 3 years ago, on aziothropine and adalimumab (planning to go off soon). Where will you be trying FMT (or tried already)?

  14. Yasmin
    Yasmin Bond January 31, 2015 at 1:38 pm #

    Hi Ella. Sorry to hear your daughter is in a constant flare. So was I! I’m not able to give medical advise but I will say that I was treated firstly in the middle of a flare, no formed stools and lots and lots of bleeding. It took weeks to see changes and then great results but I didn’t need medication to bring me out of the flare. The only thing that makes me as well as I am now is a top up treatment and cutting out sugar. I was addicted to sugar pre-UC and I miss it very much as unhealthy and damaging as I know it is. I’m still completely medication free 5 months on.

    I would stay start FMTs now! Be careful with the administration but don’t wait a second longer!! I often hear people say they need to wait until after the flare to do FMT but I am an example of when it worked the other way!

    Good luck, best wishes for the future for your daughter and yourself x

  15. Yasmin
    Yasmin Bond January 31, 2015 at 1:40 pm #

    I didn’t use antibiotics either! Some people do and it works though!

    • estella September 18, 2015 at 12:47 pm #

      Hi Yasmin hot are you?
      Please update on how you feel!!!!!

  16. Yasmin
    Yasmin Bond September 19, 2015 at 12:50 am #

    Hi Estella. I’m doing very well thanks. Well I was doing fantastically well up until last week when I caught gastric flu on holiday! I had treatment yesterday to combat the horrible gastric flu symptoms and feeling much better already but it will take a few days. Colitis wise I’m doing so well, I still have to watch what I east, no gluten, alcohol or milk but apart from that I’m 80-90% better most days compared to how I used to be. Diet+FMt+Lifestyle is the perfect combination.
    I’ve tried to reduce my stress levels a lot too and thats helped.

  17. Ella September 19, 2015 at 1:08 pm #

    Hello Yasmin! Thank you so much for quick response. Very glad that you are doing much better.. Little about my daughter who is stragling with UC for four years. She is currently on Remicaid. For the past 10 month she is being tx with antibiotics, Rifaxamin and metronidasole.. It helped her tramendioslly she has normal 3 stools per day, no blood nor mucus. We are so happy and relieved.
    Our doctor is trying similar protocol suggested by dr Borody from Australia. She is still on antibiotics and we are reducing Remicaid. However, she developed profound psoroasis. And as a teenager she is very unhappy about it.
    I think yhe next step we are going to try is FTM. However, it is a controvercial issue. Many said that is was not helpfull. Some said it was. I am very happy for you and thank you for your support and story. Would you please tell us more on how you perfforming FTM and for how long are you planning to administer it. Are you taking any supplements? Is your donor a relative? Any information is helpful.
    Good luck to you and all of us!

  18. Yasmin
    Yasmin Bond September 19, 2015 at 1:35 pm #

    Hi

  19. Yasmin
    Yasmin Bond September 19, 2015 at 1:35 pm #

    Hi Ella. Sorry to hear your daughter is struggling with psoriasis. I’m no doctor but I believe the psoriasis is directly related to the food she is eating and the strong medication she is on. I too suffered from psoriasis but it cleared up completely once I started FMT and changed my diet (cut gluten, dairy, sugar and alcohol). Now when I do have those things in my diet for a day or two the psoriasis comes back slightly and I know it’s my body’s way of telling me it doesn’t like what I’m eating.
    I’ve been doing FMT for one year now. I go to the Taymount clinic and I’m one of their long term patients. I usually have at least 1 FMT a month but I’m going to change it to 2 per month as I think that’s when the colitis improves the most. Having regular treatments seems to massively improve all my symptoms. The clinic test their donors carefully and rotate donors so I have a different donors microbiota and this helps to increase the diversity of the bacteria. So far so good and it’s worked very well for me much to the disbelief of my gastroenterologist. My last colonoscopy showed the disease was still active but a lot of the deep ulcers had cleared and I hope things keep moving in the right direction over the next few years!
    Good luck with your daughters treatment and I really hope whatever you decide to do that she stays healthy and her psoriasis gets under control! Yasmin :)

  20. Ella September 19, 2015 at 10:18 pm #

    Hi Yasmin.
    I am learning that psoriasis is from L gut. It’s when toxins enter the blood and trying to clear up from skin. And as you said that diet is a major factor. Thank you for all. Feel better and better!!!
    Keep on posting so we could follow. Thank you.

  21. Lynn January 12, 2016 at 10:54 am #

    Hi Yasmin – My son is on day 7 of FMT implant at Taymount Clinic in the Bahamas. He is 21, has had UC for 4 years. He has seen a decrease in his night time visits to the bathroom so he is a little more rested. Of course he would like to see more improvement but he needs to be patient right? Did you have a difficult time holding the implant? How long could you hold? Also did you take implants home? Great to hear you are doing so well! Very encouraging. What diet are you following? Sorry if you have already mentioned somewhere.

    • Yasmin
      Yasmin Bond January 19, 2016 at 5:13 am #

      Hi Lynn, sorry for the very late reply! The email that notified me of your comment went missing for a few weeks!
      How did your sons treatment go?
      Please tell him to be patient and try to relax – hard I know – but stress doesn’t help and worrying that the treatment hasn’t worked won’t do him any good.
      I kept a food diary and sometimes still do and compare week on week only, not day on day.
      Slowly, after about 2-3 months I started to see that each week my total amount of trips to the loo were coming down. I would initially suggest a pale diet approach and definitely no processed food or sugar. I still flare a little these days if I eat gluten free substitutes like GF pasta and cakes/ biscuits.. so even though I’m off gluten, I also see a huge improvement in symptoms when I avoid all processed food. I try and stick to raw food most of the time and cook with organic meats and vegetables.
      Lucky me this Christmas just gone was the best Chrsitmas I’ve had in four years – my stomach is much stronger now and I can tolerate a little alcohol and sweet treats. Please tell your son that he too will be able to enjoy food/drink and life again but to give himself time to heal.
      One of the most iddficult things for me at first was holding the implant. As the inflammation goes down this should improve. I also find that the best method of FMT for me is to do it in the morning after I’ve been to the loo and not to eat or drink anything before the FMT. Your colon will soak up the FMT a lot quicker if you haven’t had anything to drink and you’re a little de-hydrated. I think hold the FMT for 2-3 hours sometimes a bit more and don’t worry about all the reviews online telling your son to hold for 24 hours. The longer the better but 2-3 hours is fine.
      I know I’ve babbled on a little bit too much but hope that helps and feel free to ask any more Qs!!

  22. Lynn February 16, 2016 at 7:19 am #

    Hi Yasmin-

    Thank you for your reply. I did write to you on this site yesterday but not sure where it is. I’ll address some of the things you brought up from your posting on 1/19/2016. My son is 21 years old and UC has put a big impact on his college life and just his life and his families. He is doing the implants at home and is doing much better holding them in in the comfort of his home and eating the foods he’s use to. The colon prep was very hard on him so the 10 days of kick start didn’t show much progress. Also his diet was hard to maintain while in the Bahamas but he was compliant just went hungry a bit. He eats mostly SCD with a Paleo twist. I make all his food. He knows what to eat and not eat and does help with some of the prep of the food. The biggest difficulty we have coming up is the choice we are going to have to make in the next two months. He will run out of the implants we purchased in April. Do we fly to the Bahamas or the UK to get more or figure out our own FMT mixture? It’s so costly to purchase the implants let alone pay the price for flying to get them. Glad you are doing well. Your comments have helped tremendously! Yes, he does the implants just like you said and he is able to hold for about 2 hours. He has learned how to adjust his schedule with eating and school. It seems as though he holds off on eating until noon or 1:00 time for his system to settle. And then his day goes pretty well with less visits. The most noticeable change of the FMT treatments is he can sleep at night without having to get up multiple times. So this is healing in itself. He has been happy with the results. This has been the first time he has seen ANY change in the four years he’s had UC. Do you have any suggestions for us with getting more implants? We live in the US. He takes a couple of probiotics one prescription (not the VSL) and prescriptassist probiotic which I myself take and love it! He takes the prebiotic Bimuno. Also Excitaplus and a B vitamin. For insurance he takes an Imodium when he goes out.

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