Free iHaveUC EBOOK Signup Form


Surgery Soon

Me looking normal without any steroids

Me looking normal without any steroids

Introduction:

Hi my name is Beverley (or Bev, I don’t mind :-) ) I am a 30 year old married mother of four from Newcastle upon Tyne, England.

Some more about me:

I have been married for 10 years & have 2 boys (aged 14 & 6) & 8 year old twin girls. I started having problems & was referred to my gastroenterologist in 2001 & finally after 7 long years of being told i had IBS  in Jan 2008 I was diagnosed with Pancolitis….Yey!!!

Symptoms:

Toilet 5/10 times a day, urgency, pain, (no blood or mucus tho… 4 now)

Surgery Soon

I have finally finished my battle with colitis….. I’m not sure who the winner is??! Hopefully me!

I 1st experienced symptoms (the blood, diarrhea & pain) in 2001 (although nowhere near as bad as things got last year.) I spent years back and forwards having colonoscopies, flexible sigmoidoscopies, white blood cell scans ect and it always seemed to get missed, i was told i had IBS & at 1 point a GP actually told me (his actual words…) I was ‘barbecuing my insides through smoking!!’

Eventually in Jan 2008 I got my diagnosis.. Pancolitis… in a way i was relieved because i finally knew what was wrong (i am sure somewhere in my notes back then it will say hypochondriac!) then reality hit, & oh it hit hard!

Living with Pancolitis has overtook my life, i sometimes feel like i don’t even live it, i just exist.
between Jan 2008 & jan 2012 I had 7 flare ups, all of which involved the usual, prednisolone yey! Some flare ups lasted weeks, some months but eventually oral steroids + enemas & foam alongside my usual balsalazide seemed to do the trick, that was until june 2012.
I knew i was in a flare up & hadn’t been well for weeks, but tried to plod on (as we do) using enemas, foam ect & eventually ended up admitted to hospital on IV steroids for a week, i was home less than 2 weeks on oral steroids then got readmitted as steroid resistant & put on a trial drug… Ciclosporin.
I probably would have agreed to anything at that point but OMG!! the side effects were unreal! I ended up on the sick for 4 months & although my bowels eventually settled it was a really difficult time.

Me while on steroids

Me while on steroids

After finishing the trial I was started on Azathioprine alongside the Balsalazide & having a low immune system, i get every bug going as well as dealing with the usual day to day struggles with colitis. It wasn’t really until i sat & read all of the side effects of everything i’d been taking (the ciclosporin being toxic & the Azathioprine being listed as a human carcogen) that i seriously thought about surgery. I decided to write a list of pro’s & con’s, the pro’s list filled an A4 side of paper & the con’s list filled 3 lines!

I am sick of being a slave to colitis, sick of saying I’m sorry but mammy can’t do that, my tummy’s being naughty again’ to my kids.
I’m sick of taking tablets & I’m sick of being ill.

SO…. I met my surgeon last week & I am now waiting for a date for my op, a permenant ileostomy. Hopefully I will know by friday & look forward to a toilet free future :-)

Don’t get me wrong I am terrified of the actual op & the recovery process but surely I & my family will have a better quality of life with an ostomy.

The first thing my kids want to do is go to the beach for fish and chips without mam having to worry about running to the toilet, that in itself keeps me positive, thats how much me getting better means to them, a simple trip to the beach :-)
The first thing I am excited to do is go camping with the hubby and kids!! I cant wait :-)

So fingers crossed I will hear soon, I wish i could just wake up tomorrow with the bag & miss the op bit out but one last bit of pain will be worth the freedom :-)
I would love to hear from anyone with any advice after an ileostomy & also send my love and best wishes to all of you fellow sufferers xxx

Medications:

current…
Azathioprine 125mg
Balsalazide 750mg x 8 per day
colifoam enemas
pentasa suppositories

previous…
prednisolone (lots of times)
ciclosporin (3 month trial)
hydrocortisone (IV steroids)

written by Beverley

submitted in the colitis venting area





67 Responses to “Surgery Soon”

  1. Jen From UK
    JenMay 11, 2013 at 12:40 pm #

    Hi Beverley,
    Another UK UC suffering Mummy here… I see my GI on the 28th and having been in flare exactly one year today my first having had a horrendous time on pred, mesalazine, pentasa, budesonide and azathioprine I will be seriously asking for surgery too! My boys are 20 months and 4 years old and like you I’m always saying Mummy can’t my tummy is playing up!
    Wishing you lots of luck for a super speedy recovery and toilet free life :-)
    Jen xxx

  2. HennahMay 11, 2013 at 1:26 pm #

    Hi
    My name is Hennah I’m a mother of three who is having an ileostomy in the summer.
    The meds stopped working so well for me and my quality of life n things for the kids was terrible.
    Best of luck to you brave ladies hope things go really well
    Best wishes
    Hennah

  3. bevMay 11, 2013 at 5:05 pm #

    All the best to you Beverley!! I’m sure that you will be so happy when it’s all over and done with.

    Camping….yey!!

    :)

  4. Tom from Northampton
    TomMay 12, 2013 at 1:53 am #

    Hi Beverley

    My story practically mimic yours. Been on ciclosporin aswel up untill December.

    I had surgery last week. Surgery 1 of 3 if i decide to continue with the j pouch surgery.

    Everybody is different but my surgery, which was done keyhole went well and experienced hardly any pain.

    If you want my email address if you have any questions im more than happy to help

    Best of luck

    Tom

    • bevMay 13, 2013 at 3:13 pm #

      How wonderful Tom!!

      You now have a beautiful new life!!

      Congrats
      :)

  5. SheilaMay 12, 2013 at 11:14 am #

    Hello Beverly,
    Best of luck to you with your surgery. What a brave and smart decision!! I have a permanent ileostomy and no regrets, and best of all: No more COLITIS!!! The doctors are brilliant at managing pain and if you try to walk a little bit several times a day your recovery will go well.
    Sheila

  6. Beverley H
    beverleyMay 12, 2013 at 3:34 pm #

    HI Jen, thankyou :-) I really hope your flare settles & your GI respects your decision & you get your surgery :-) sometimes I think if it was just me would i consider the surgery? but its so hard when your kids have to go through so much heartache and letdowns, i wish you all the best & please let me know how you get on with GI :-)
    Hi Hennah, again thankyou :-) and good luck and best wishes for your surgery too, maybe we could swap notes after :-)
    Hi Bev, thankyou :-) Im hoping the camping will be as fun as im thinking (as long as the creepy crawlies stay away ;-) hehehe)
    Hi Tom, thankyou :-) my surgery will be keyhole too so hopefully wont be TOO bad :-) I havent spoken to anyone or read about anyone else being on ciclosporin, how did you find it? good luck with the next 2 surgeries if you decide to go ahead with jpouch, ive read great things about it but decided it wasnt 4 me, keep me updated how youget on :-)
    Hi Sheila, thankyou :-) its lovely to hear the positives and thankyou for your advice, Ill definately try :-)
    I got my date on thurs and its mon 17th june, Im nervous but also quite excited, ive had a really bad week and its like my bowel is reminding my why im doing this!
    Best wishes to you all :-) xxx

    • Jen From UK
      JenMay 12, 2013 at 11:07 pm #

      Hi Beverley,

      Thank you :-)

      Wow, a little over a month and it’ll be gone :-) thrilled for you! Really hope you feel better before then and things settle. But the end is in sight. Let us know how it goes,

      Lots of luck and best wishes,

      Jen xxx

  7. sunny capeMay 13, 2013 at 1:38 am #

    Hi Bev, I’m Bev too :) Just to wish you the best of luck for the surgery. You are very brave and I admire your positivity so much. I’ve had UC for about 12 years and am currently on methotrexate which I inject myself and then then revellex (remicade/infliximab.) My UC is ok but very seldom 100% brilliantly ok! And the injection makes me feel sick. So, I think a life without feeling sick sounds amazing and I wish you many joyful times ahead. I always get confused – the ostomy is the first step and then it’s possible to have the J-Pouch…but how exactly does the J-Pouch work? Is it a bag that is inside the body? Sorry, I’m just a bit clueless about the different options and how everything works.

    Love and light to your for the surgery
    xx
    Bev

  8. Beverley H
    beverleyMay 13, 2013 at 2:46 pm #

    Thankyou again Jen :-) 5 weeks today, not long now :-) I will let you know how it goes :-) & sending you loads of good luck for your GI appointment :-) xxx
    Hi Bev, Thankyou so much for you kind words :-) Mine will be a permanent ileostomy as I have talked things over with my family, my GI and surgeon & decided thats what would be best for me, although the j-pouch is right for plenty of others and ive read some great things about it I dont want to go through 2 or 3 op’s and I feel like living with the ostomy will be fine for me so everything will be removed and there will be no chance of a j-pouch in the future.
    Dont be sorry for asking, its nice to hopefully help :-)
    From what I have researched and discussed I understand that the rectum must stay in order for the j-pouch to connect to (which i wont have so cant go back from the ileostomy) The 1st step is the ileostomy, then the j-pouch is made, its not a bag, its made from your small intestine you could look on here:-
    http://en.wikipedia.org/wiki/Ileo-anal_pouch
    and also try googleing j-pouch images to help you get a better idea of how it works.
    My decision may not be for everyone, but I feel like im ready to say goodbye forever to the toilet :-) I wish you all the best for whatever choices you make in the future :-) xxx

    • bevMay 13, 2013 at 3:10 pm #

      I hear that! I would be happy with the bag as well. As little surgery as possible…that’s my motto!

    • Jen From UK
      JenMay 13, 2013 at 3:14 pm #

      Thanks :-) so pleased you and your family are all 100% behind your decision… Def something to consider xxx

  9. Michael Hurst
    MichaelKHurstMay 13, 2013 at 10:45 pm #

    Hi Beverly,

    It sounds like you’ve been through quite a lot. I know surgery sounds like a big relief to finally be able to be done with this illness. That was the feeling I had when I made the decision to prepare for surgery in December 2010. After 12 years of pan Colitis for almost the last 10 years I was physically and emotionally tired of fighting this illness, especially when the doctors told there was nothing else left to try and the other drugs were ineffective or had side-effects that sent me to the hospital. I also heard stories from some who had the surgery who seemed pretty happy about there lives now. But I still had some doubts, a gut feeling if you will.

    After months of preparation I ended up changing my mind at the last minute to try one last treatment option that had never been presented to me by any of my GI doctors over the years, even though an article with well-documented case studies had been published in the Journal of Gastroenterology in: fecal transplants. I also happened to luck out in that as my surgery date approached I started to get much better. The colo-rectal surgeon told me my blood albumin levels (protein) were low and I should boost them by taking meal replacement shakes and that I should also taper off of Prednisone, even though I was still in the middle of a flare. However I was able to taper off Prednisone a month before my surgery date and my energy and health came back up to levels they had not been at for years and I regained 20 lbs of weight I had lost in the previous months. Perhaps protein deficiency was why I wasn’t getting better between flares anymore.

    I started to wonder if surgery really was necessary and if it really would be an improvement in my quality of life. With my health now better I was doubtful, however I was told in the longrun it was worth it. The doctors told me the UC would just get worse, that my colon was too badly damaged to heal and regain elasticity. But it turns out they were wrong.

    I learned the same procedure I had just read about to treat c. diff related Colitis had been effectively used for Ulcerative Colitis and Dr. Borody had documented his cases in an article published in the American Journal of Gastroenterology. I wanted to know why no doctors had told me about this and presented it as a choice. However the more I read about it, I figured if Dr. Borody’s patients could do it, why couldn’t I and if it didn’t work I would be back where I started: facing surgery. I talked to doctors, Dr. Borody’s office would do fecal transplants for UC but claimed to not be accepting any appointments from outside Australia at the time. I talked to doctors in the U.S. and I had an appointment with one, however she said that getting approval from the hospital would be difficult and so I ended up doing it myself. For my own peace of mind, I thought that even if my attempt was not successful, I could at least go into surgery with no regrets knowing that I had truly exhausted all of my other options that I felt stood a reasonable chance of working.

    While it wasn’t always easy, and there were those who thought I must be crazy, within 6-7 weeks I suddenly had a full-on remission with the addition of some prescription drugs, the last blood in stool I have seen, by 3 months later I had no symptoms and a colonoscopy which showed substantial healing. Two years I am still symptom-free and have my health back without any drugs, I eat what I want without paying the price and I have my body still intact. While what I did is not for everybody, it proved to be the right choice for me.

    • bevMay 14, 2013 at 6:07 am #

      Great post as always, MichaelK,

      I am one of those people who does not believe that surgery need be the end result of UC. I think we aren’t given all the options that are available to us and that some get so sick and tired of feeling so sick and tired that they (we) inevitably opt for the surgery as final relief from UC.

      I almost find it ‘tragic’ in that we just don’t know the alternative things that are out there that can actually heal the colon!

      Keep spreading the word…and I will to.

      Bev

  10. Beverley H
    beverleyMay 14, 2013 at 4:06 pm #

    Hi Michael, thankyou for your response, I have looked into it in detail and believe it or not me and my husband were just talking about it last night! I am really pleased the fecal transplants worked for you :-) I think you are very brave for going for it but I decided it wasn’t for me.
    I agree with Bev that it is almost tragic having to go to such extremes to get better but personally I know i am making the right choice for many reasons.
    I lost my 16 year old brother in a car accident 10 years ago & I believe in living life to the full while we are here.
    As I said in my story I have a very supportive husband and 4 young children and along with me, they have suffered enough, I can not put myself through anymore trial and error treatments whether they are medical or herbal, even if I am symptom free for a time, I will always have the doubt in my mind… will it come back? I have the guarantee from the surgery that I will be UC free forever and that is what I and my family want most :-)
    I wish you all the best for the future & really hope you continue to be symptom free :-) xxx

  11. Michael Hurst
    MichaelKHurstMay 15, 2013 at 2:30 am #

    Bev,
    I agree, it does seem to be tragic that people are having surgery when they don’t know all of the options available to them. Certainly some of them are inexpensive, have minimal or no side effects and can achieve sustainable improvements better than prescription drugs.

    Beverly,
    I appreciate being called brave, although I truly believe that you are the brave one as are others that are still continuing to deal with this illness and drug side effects. What required bravery from me was not fear from using poop to treat myself, by the time I was facing surgery I had pooped my pants many many times over the years and gotten pretty efficient at clean-up. What required bravery, was to stand up to doctors telling me I was crazy to think it would work and being willing to challenge the almost godlike authority I had given to doctors by having confidence in my ability to accept full responsibility for my well-being, and to read and comprehend medical journal articles, weigh facts and reasons and my own experience of what I observed to be true in my case. Now while I have great respect for the rigors of doctors’ training, and there are some great doctors who are brave in their willingness to challenge the conventional wisdom in their field, I now always also research and verify it myself.

    As for being there for your family, and living life to the fullest, and being free of Ulcerative Colitis certainly no one can really argue with that. However the question is what is the best means to get there? Is surgery the only way or the best way and is the resulting quality of life better than other options, especially ones that do not permanently alter your body? It does seem that it does work for many people, based on the experiences they have shared. Although I doubt even the most positive person on here can say in perfectly good faith that they wouldn’t rather have a healthy intact large intestine instead of a j-pouch if given the choice. The problem is that the possibility of having a healthy colon without signs of disease is not considered to be an option by most doctors.

    While Ulcerative Colitis may be considered cured by doctors with removal of the large intestine. I consider having surgery to be the more brave option, considering all that it entails including in most cases facing at least 2 major surgeries, then being dependent upon others to care for you during recovery from surgery, then a bag on the outside of your body which has to be emptied 5 or 6 times a day, followed by more surgery, retraining your body to control bowel movements, and being careful with your diet to avoid obstructions all for the ideal outcome of 5 – 6 bowel movements per day, including for at least some time, at least one per night. I think facing that known possibility takes courage, although I know at the time it sounded like a sacrifice worth making while I was in the midst of a flare and felt too weak to do much of anything. However that started to change a little when I got better again, and the short-term sacrifice was also clearly followed by what I saw as a lesser but permanent sacrifice.

    At first I was sold on the idea of surgery, as the best of several known imperfect choices, right up until the last minute when I realized there was another alternative. The doctor and the patient videos and brochures made the possibilities sound so wonderful. I now realize that at first I largely accepted the doctors and surgeon’s side of the story without listening to any counter arguments or conflicting evidence in part because I wanted it to be true, no more illness, no more symptoms.

    I spoke to the daughter of a childhood friend of my Mom’s who was a few years out of college. While she was now happy and upbeat a few years later it turns out she had severe complications from surgery caused by ruptured stitches and sepsis which caused her to miss a year of college and have more surgeries. While she was now happy and upbeat about 5 years later, in spite of occasional complications from pounchitis and encouraged me to go for it, even though the complications for her had been life-threatening.

    As I prepared for surgery and had just gotten back to my parent’s house after meeting with the Ostomy nurse, where I saw the ostomy ring and pouch and the practical way to care for it that it really hit home was I was about to do and had more tests to see if my blood albumin levels and red blood cell counts were now high enough to allow for an optimal recovery from surgery. They were still pretty low but now just above the minimum threshold.

    However when my Mom handed me a print out of the Wikipedia entry for Ulcerative Colitis, 11:00 at night, when I was scheduled to go to Jacksonville the next day. Wikipedia had not even been invented when I was first diagnosed and back then once I learned the basics I bought into the notion that there was nothing I could do, so I turned my treatment over to my doctors and tried to think about it as little as possible. However I read the entry for UC and I saw a reference to fecal transplants being used for Ulcerative Colitis “Treatment of Ulcerative Colitis using Fecal Bacteriotherapy.” I was floored, the cases were similarly treatment-refractory just like mine was, they were well-documented, positive results came pretty fast and risks were minimal and very management by testing donor blood and stool. And in something I could not believe, the results were sustained from anywhere from 1 – 13 years and counting! How could my doctor have not told me about this?

    I started to wonder what else they either knew and were not telling me or just didn’t know about even though it was in published medical journals in their field. I stayed up all night until almost dawn reading through research. I also read about potentially severe consequences from surgery which while unlikely were definitely there. While most were not life threatening, many of the same problems I was having with Ulcerative Colitis would still be there, including bowel obstruction and infection of the j-pouch. It looked like doctors were understating the problems and overstating the benefits. Rather than curing the illness as the doctors said, I would be trading one variable problem for another chronic yet more predictable problem. I also did not like a passage I read which said that a two or three stage surgery process with temporary diverting ostomy was done in part so that patients would be more compliant and more careful once the j-pouch was connected. This also had me outraged, to realize that there were doctors doing this as one surgery with some believing this was a safer better way than two surgeries, while my surgeon only presented doing two surgeries as an option.

    The conclusion I came to after reading the research was that while in many respects life after surgery would be better than life during a severe flare of Colitis, however for the immediate future and following 6 months to a year it would result in a significant drop in quality of life, followed by risks of significant complications down the road too.

    As I weighed my decision, either go ahead with surgery now so I can get started with my recovery and hopefully have my life back on track 6 months from now or wait on having surgery so I could try the fecal transplants first. Or on the other hand I could try fecal transplants first, which would have relatively minimal negative side-effects compared to my existing illness and minimal risks of infectious disease were very manageable with donor testing. If it didn’t work I could have surgery later, however if I had surgery I couldn’t later try the fecal transplants or anything else for that matter. When I looked at the actual facts the biggest draw backs were what will people think and how was I going to find a doctor to do it for me?

    Weighing the two possibilities I realized that if I tried the fecal transplant I would know pretty soon whether it was working or not. With the fecal transplants Dr. Borody’s patients had gotten noticeable improvements in their health very quickly and were symptom-free within a matter of days or weeks, with many patients symptom-free and drug-free within 6 weeks to a few months later. Not only that but the results had been sustained once the new bacterial colony had stabilized and the intestines healed. I also couldn’t find any published medical articles where fecal transplants had actually caused severe life-threatening complications, nor any reason why there would be any as long as donor’s were tested for infectious diseases. While by contrast there were some significant risks from surgery that were well-documented, even if the odds of a life-threatening problem were low.

    For me the prospect of having made an irreversible decision by hastily going along with what everyone else seemed to want me to do while not first trying something which would have less of an impact on my body, could restore my health more quickly and was not irreversible just didn’t make sense, and I feared living with regret and without my large intestine without being able to ever know if it would have worked or not.

    14 weeks after I had started the fecal transplants I had a colonoscopy, and it was amazing to see the healing. During the the fecal transplants I worked a job, went out on dates, out at night, even swimming, whereas with surgery I would have been recovering from surgery with an ostomy bag. By the time I had my colonoscopy, about 7 weeks after a sudden remission of symptoms, it occurred that this was about the same time as I would have been about to undergo the 2nd surgery to have the j-pouch reconnected, yet instead I had a healing colon and mostly normal poop. The GI doctor, the same one who had prescribed surgery, was at a loss for an explanation, saying maybe my illness was changing to be more like Crohn’s Disease. Of course if he had been right about being Crohn’s Disease that then it would have meant that having surgery would have been the wrong choice for me. However I think it was clear that it was in fact healing, after years of extensive, deep ulceration throughout my colon. Instead of potty-training myself to go 5 times a day I didn’t even have to think about it anymore, the illness and symptoms were just not there anymore! Given that contrast I am very glad I decided to wait on surgery for a few months to give this a shot first. If you wanted to you could give it a shot while waiting for surgery, if it works there is no need for it, if it doesn’t work then you’ve got your surgery without adding any more delays. Heads you win, tails you win with no regrets!

    • Wendy
      WendyMay 15, 2013 at 9:31 pm #

      Michael, this is EXACTLY how I feel:

      “What required bravery, was to stand up to doctors telling me I was crazy to think it would work and being willing to challenge the almost godlike authority I had given to doctors by having confidence in my ability to accept full responsibility for my well-being, and to read and comprehend medical journal articles, weigh facts and reasons and my own experience of what I observed to be true in my case. Now while I have great respect for the rigors of doctors’ training, and there are some great doctors who are brave in their willingness to challenge the conventional wisdom in their field, I now always also research and verify it myself.” (leaving quotes on because I can’t indent).

      I would have no colon if I listened to my doctor who actually said I needed to see a psychologist because I questioned him!

      Beverly, whatever you decide in the end, I hope all goes well for you. Thanks for posting.

  12. NickWMay 15, 2013 at 6:18 am #

    Michael,

    Where did you find the steps, proper procedures, equipment, etc. — all of the information necessary to go about and do this safely?

    I have had UC (not c-diff) for 2 years now and have not found any remission whatsoever. Prednisone helps, but is certainly a band-aid solution as symptoms return not long after. I have tried different supplements (probiotics, L-glutamine, fish oil, olive oil, vitamin D, diet changes) and while some things help with symptoms, stable remission remains elusive. My GI is now peddling Remicade or Humira on me as a last resort before surgery. Like you, I would like to explore all options before these harsh drugs (which I believe are also “band-aid” solutions) or ultimately surgery.

    I live in Toronto, Canada, and in the past few weeks have started researching fecal transplant treatments. I am eager to educate myself as much as I can on this topic and hopefully find a viable way of implementing this procedure.

    Your posts are very informative and inspirational — thank you for your help.

  13. Graham from England
    Graham leeMay 18, 2013 at 1:51 pm #

    Hello Bev, Nick W

    Just a few points really, they may all be irrelevant but let’s not leave it to chance with such serious matters. Bev, were you having bad symptoms while you were a smoker? I presume you know all about how smoking provides remission for so many? It may be more hope than judgement but I feel we are much closer to the answers, even if the (NHS) doctors we see are not. I appreciate that many of us are young and do not want to throw away our youth but I always feel desperate for people to hang on. A friend of the family had the surgery for UC only to be told it was CD, this is not a unique story from what I can gather. I really don’t want to make this decision any harder for you but I do not trust our medical professionals I’m afraid. Whatever you decide, I admire you and your courage..

    Sorry to sound like an old record but was that real extra virgin olive oil Nick, plain olive oil won’t do much I’m afraid?

    • bevMay 20, 2013 at 8:17 am #

      Graham…when I was a smoker I had NO UC either!! Not a hint of it…I remember reading somewhere, once, that something in the smoke actually makes the colon (probably the gpood old mucosa of the colon) stickier? I’m sure it was something to that effect…

  14. NickWMay 20, 2013 at 5:10 am #

    Hi Graham,

    Although I have not posted too much on this website, I have been an avid reader for ~ 2 years since my diagnosis. Upon reading your initial comments and recommendations on olive oil, I jumped right on board and tried it. I can report that initially (with 3 tablespoons / day, morning, noon, night) my symptoms regressed. It actually got better slowly over the course of a month that I was ALMOST convinced that this was the trick and was only days away from sharing my story on here and being another acvocate for olive oil. I had only 1 BM a day, first thing in the morning with little to no blood. I was thrilled.

    But then something changed (I have NO idea what) and it seemed to have stopped working. Symptoms came back slowly and the olive oil has not been able to get me back to where I was. I still take it and have tried different, seemingly ‘better’ oils, but now it seems to have zero effect.

    If you have any further suggestions, I’m all ears. I’m looking for any natural help I can before I am forced to try my luck with Remicade or Humira.

    Thank you for taking the time to share your story and success with the olive oil treatment. People like Adam, Bev, and yourself provide incredible support for an entire online community of people who have to deal with this horrible condition (I simply hate the word ‘disease’). Thank you again.

    • bevMay 20, 2013 at 8:14 am #

      Hey NickW,

      What has happened to you always strikes fear in my own heart…we can get so ‘used’ to remission, that we can;’t even imagine going backwards…back to that dreaded condition. (I am totally with you….I have never and refuse to call UC a disease…and can’t call it that…it is a horrible condition).

      Are you positive that you can’t pinpoint anything that was different before you started having symptoms crop up again? I guess I don’t want to ever admit or think that it can just reappear ‘out of the blue’, even though it probably can…denial on my part, perhaps…lol…I just always think that there has to be SOMETHING…alcohol…an inadvertently taken advil ( advil can cause intestinal bleeding)…antibiotics…any other over the counter meds like allergy meds, cough meds…new supplements…I am going nuts trying to think of every little thing that could bring it on…

      Really, this can and does happen to any of us…and it scares the heck out of me. Sometimes I think that I live in a bit of denial, because I feel like I don’t even have UC at the moment. It’s sure easy to get comfortable. I needed to hear this, Nick…it’s a wake up call.

      I only wish that I could tell you what to do now….other than what I am doing, which I’m sure you are already aware of, ad nauseum…lol

      Bev
      :)

  15. Graham from England
    Graham leeMay 20, 2013 at 12:47 pm #

    Bev, Nick W

    Yes smoking has a great effect on the mucas in the colon, smokers have more of it. The colon must be where it is making the main difference because it doesn’t really help Crohns. I believe there is an immune system benefit too which cld be just as a stress reducer. I have heard this phrase reffering to UC before and I think it comes from the medical profession “The non smokers disease” (sorry I said disease).

    Smoking for UC seems like an anti depressant, when all else fails it can get you up, about and feeling normal. Sadly though, the problem is not truly going away and it is only a short term solution. We are still damaging ourselves though we feel fine.

    If you will permit me 1 more poor analogy? If my UC got bad I would take a “ground hog day approach”. Reinstating a healthy bowel by resuming smoking and then starting a new regimen (perhaps over and over) until I get it right.

    Nick, I am pleased that you had some success but obviously disappointed for you at the same time. I now take 4 per day and have switched oils a few times. It definitely still works for me but probably less than before. I have had Asacol for 3 weeks now and have not seen any blood in the stool for 2 weeks (1st meds in 14 years). I’m also convinced I finally have a good diet etc and am taking care of myself for the 1st time ever.

    Your point got me thinking.. I read some research a while back about “tea and toasters” having poor gut diversity, even those with a good but limited diet. Those with a wide, varied diet had much better health in old age and less diseases (oops). Given that each medication seems to work for a limited period and a wider variety of good/health food is best for us, does this suggest we need to use similar but different/additional oils? We hear about many oils with UC, emu oil, fish oil, krill oil. I have been taking salmon oil for a while now and it’s the only supplement I still take every day (+Evoo). There are so many individual nutrients and components in Evoo that must also be available in other oils, (doh more research)….

    I have not read this in full yet but it looks interesting.. http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?pagewanted=7&_r=1&smid=fb-share

  16. bevMay 20, 2013 at 1:11 pm #

    No worries, Graham…you can call UC whatever you prefer…tomato / to-mah-toe…lol…I’m just denying it is a disease…a little denial is okay, I figure…

    Yes, I too believe the whole ‘oil’ thing may just serve to ‘coat’ the good old colon and that is a good thing.

    Great post, Graham…the fact that you have changed your lifestyle diet-wise may be contributing to the asacol working ‘better’? I hope that makes sense…if I am reading your post correctly?

  17. Michael Hurst
    MichaelKHurstMay 20, 2013 at 3:59 pm #

    @NickW I go into some more detail on my website http://www.FecalTransplant.org and my book about my experience. Otherwise I went with published articles from Dr Michael Silverman and be Dr. Borody to guide me. I also spoke with Sky Curtis who interestingly enough lives in Canada and recently published a book about how she used fecal transplants or infusions as she calls them to successfully treat her son’s Crohn’s Disease.

    While I have not read the research behind why olive oil works, it stands to reason that the fatty acids could definitely help as an anti-inflammatory. Also by coating the intestines it could help foster the growth of good bacteria and protect the lining from irritation caused by diarrhea and associated muscle spasms.

    @Graham, Bev and Nick. Perhaps some of the benefit of smoking and / or nicotine is because of the anti-depressant and dopaminergic effects since it is a stimulant which helps elevate levels of dopamine and Norepinephrine. This might explain why Bupropion (brand names Wellbutrin, Zyban) was the subject of a research study to treat Crohn’s Disease, and was it so effective for me that it brought about the end of Colitis for me in July 2011. Since Bupropion also is used to help people quit smoking, maybe smoking and Bupropion work in similar ways to reduce inflammation. I wonder if anyone has done any research on whether nicotine patches are as effective as smoking?

  18. Graham from England
    GrahamMay 21, 2013 at 7:56 am #

    Simon,
    I know of a big drug company that was in R&D with a patch for UC around 10 years ago, its absence from the shelves suggests it was not a winner. On one of the last occasions that I stopped smoking, the patch doubled my “flare start” time from 3 to 6 weeks. Obviously a benefit but probably only 10 – 20% of the actual smoking benefit and not a remission provider for me as my symptoms got worse. I used to stick it on my tummy where the pain was. I currently carry nicotine gum for stress days but I cant say 100% that it helps, just using my (crazy)logic approach.

  19. Jen From UK
    JenMay 25, 2013 at 12:41 am #

    Hi Beverley,
    Hoping you’re well and things are progressing well towards your surgery date,
    Thinking of you and your family,
    Jen xxx

    • Beverley H
      beverleyMay 27, 2013 at 11:45 am #

      Hi Jen,
      Thankyou :-) I have my pre-op tomorrow & I cant believe 3 weeks today it will all be over :-)
      Good luck with your appointment tomorrow too, I hope it goes well for you whatever you decide to do :-) let me know how you get on
      Bev xxx

  20. Jen From UK
    JenMay 28, 2013 at 12:55 pm #

    Hi Bev,
    Hope the preop was all straightforward?! I’ve been referred to the surgeons… So we will see what they say! My husband is totally 100% behind me whatever happens :-) great to know. Thinking permanant ileostomy too but will keep an open mind.
    Take care and hope the next 3 weeks are kind to you,
    All the best,
    Jen xxx

  21. Beverley H
    beverleyMay 29, 2013 at 11:38 am #

    Hi Jen,
    Yes the preop was fine, it was just the usual height, weight & bloods then had an ecg (just because my heart still flutters abit since the steroids) & they gave me all the details for on the day, no bowel prep needed yey :-)
    Im so pleased your appointment went well and its fantastic having your husband behind you all the way, its been a massive help to me going through all the different emotions with my husbands help, theres days when i cry just because im scared but he reminds me why im doing it and gives me those much needed hugs :-) but theres more often days where cant wait to have it all behind me and start living again :-)
    Good luck with whatever decision you make :-) and im sure whatever you decide will be the right choice for you & your family :-)
    Take care
    Bev xxx

  22. Jen From UK
    JenMay 31, 2013 at 1:26 pm #

    Thanks Bev, so glad alls on for you and you are doing ok!! Just beginning to panic a bit, my consultants boss has asked for a colonoscopy as well as surgical consult… Is this normal?! It’s on the 8th July. No idea how long I need to wait for surgeon consult. Ironically this week the d has subsided somewhat, still 6+ bms but less loose ones. 100mg of Aza is helping that but I’m sick everyday and take cyclizine and metaclopramide to combat that. I can’t do it anymore and want surgery but do you think the Aza might be working and they will say they won’t help me? I take loperamide and codeine daily to slow things. Would you try and reduce them so colo gives an accurate result. Or would you not worry, enjoy the less toilet trips and focus on that I’m still steroid dependant (budesonide equi to 20mg pred) and that loperamide/codeine/Aza/pentasa and the pred gave me an ulcer so some omeprazole, vomiting daily and stil blood, urgency and pain. It was only 10days ago I was 20-30 bms a day
    Sorry for going on!
    All the best :-)Jen xxx

    • Tom from Northampton
      TomJune 1, 2013 at 4:32 am #

      HiJen

      Congratulations on making the decision to have surgery.
      Im 4 weeks post op and doing great.

      In answer to your question, when i made the decision to go ahead with the surgery, i was only having 1 or 2 formed bm’s a day but i had had enough of being on the cocktail of drugs much like yourself.

      Im only 24 and it was such a life changing decision but i do not regret it one bit.

      Good luck with your decision. Let me know if you have any questions.

      Tom

  23. Jen From UK
    JenJune 1, 2013 at 9:06 am #

    Hi Tom,
    Thanks so much for replying, so glad your surgery went well and you’re regret free! Are you in the uk? Ironically today has been a bad day again so no sudden remission for me lol Seriously want rid of this damn colon now. Hoping I can see a surgeon as soon as, this Azathioprine is definitely poisoning me.
    Many thanks, Jen

  24. Tom from Northampton
    TomJune 2, 2013 at 1:31 pm #

    Hi Jen

    Yes im in the UK. Live in the midlands. you?

    Hopefully the surgeon will be supportive and understanding. I dont see why they wouldn’t operate on you as the drugs 6MP and Aza long term are so destructive.

    Have you been diagnosed with Pancolitis? as in inflammation affecting your entire colon? Can’t see why they would want to do a colonoscopy as you obviously have UC which is being controlled with meds so maybe your consultants boss is just trying to save money. I dont know whether the cost of the surgery comes out of their budget or what but who cares. You obviously need it!

    Keep us posted.

    Tom

  25. Jen From UK
    JenJune 2, 2013 at 1:50 pm #

    Hi Tom,
    I’m in Buckinghamshire :-) I had a flexi sig in aug last year and they got as far as mid transverse without finding any clear colon so they diagnosed mod- severe “far reaching” ulcerative colitis?!? When they did that they said they would prob do a full colo when the flare ended… No such luck lol!
    Colo booked for 8thJuly… Will be having sedation this time but dreading it! Gave birth with no pain relief but seriously sucked on the gas and air through my flexi sig :-s
    Thanks
    Jen

  26. Beverley H
    beverleyJune 2, 2013 at 3:03 pm #

    Hi Jen,
    please dont be sorry for going on, i really hope i can help you even just a little bit :-)
    sorry for not getting back to you sooner, Im not sure why they would need 2 do a colo, I didnt get 1 but i’d had a flexi sig in july 2 but I also had a supporting letter from my GP so I think that helped.
    I was worried they would say no to the surgery but it was seeing a registrar instead of my GI once during the ciclosporin treatment that helped me.
    I was really down and i told him that if i had 1 more flare up that was it, i wanted surgery, and he said you do know that dont need to have a flare to have the surgery if thats how you feel, its YOUR choice, its YOU whos going through it on a day to day basis, even when not in a flare theres the constant worry of one.
    He told me some people cant handle the disease anymore for obvious reasons, others have had enough of taking the drugs on a day to day basis (like Tom) and just say thats enough.
    He also told me that i didnt need to be in a flare to get the surgery and it was a positive to have a planned surgery rather than it end up being an emergency as its much safer that way (less risk of bowel perforation & complications & also a better recovery rate after the surgery)
    I mean this in the nicest way possible but im glad your bowel is playing up now, theres nothing worse than being ill for weeks/months, finally get a flex sig/ Colo & they say everything looks fine, you just want to scream that its not fine, its actually far from fine! dont you.
    I hope regardless of what they see when they go in in july, they let YOU be the one to make the choice, if they try to argue, tell them about your young family and ask them how they would feel if their kids needed them & they couldnt get off the loo!
    Im sending you loads of luck & best wishes :-) & i’ll keep you updated when im all done too :-) xxx
    & Hi Tom, congrats on you surgery & doing well :-) 2 more weeks for me & it will all be over yey :-)

  27. MarkFNJune 2, 2013 at 3:42 pm #

    Hi everyone,
    I have just been reading through most of the comments here and it seems like a few of you are leaning towards surgery. Similar to Michael K, who has posted very informative and helpful information, I have now cured myself of the pancolitis I have had for the last 4 years by doing at home fecal transplants. I literally tried every diet/supplement on planet earth and went through the entire cocktail of pharmaceutical drugs available, which did work(remicade, azathiaprine, prednisone etc etc) but the side effects were simply not worth it in my opinion. I started the transplants about 2 months ago, proceeded with the transplants everyday for 3 weeks, and have literally been symptom free for the last 6 1/2 weeks. I realize 6 1/2 weeks is not a long time at all, and I do not use the “cure” word lightly, because when I say I have tried every diet/supplement/lifestyle alteration with marginal if any improvements, I know what it feels like to struggle with this “condition”…I really do not believe this is a disease it is simply just an imbalanced bacterial environment. Though I cannot say I have seriously considered surgery, I have certainly thought about the option as I literally was not able to function for the last 18 months due to the frequency/urgency. Even when I got the # of BMS down to a manageable 3 per day after I paid thousands to listen to a nutritionist for months and buy all his supplements, following his macrobiotic diet and making all these unnecessary lifestyle alterations, the urgency was still horrible and it basically prevented me from ever feeling even close to normal again, especially if I went out in public. Needless to say, I cant tell you how many times I have had to get out of my car and run into the woods and crap simply because the urgency was ridiculous…horrible way to live. I almost kinda want to sit here and bash this guy’s program/entire business model because I feel like in a way these “natural healers” can be just as bad as the doctors who want to hook us “sick people” onto their specific brand of supplements for the rest of our lives. Granted taking natural products is healthier than the drugs from doctors, but these natural healers need people to be sick and never be truly “HEALED” in order for them to continue to make money off the hundreds of dollars of supplements many of us buy per month in order to keep us in remission, or like me keep my symptoms manageable at best and not flared to the point where I’d need to be in the hospital(again). I feel like I am rambling on and not getting to the point but I would just like to say to the people here considering surgery that there is a legitimate option out there that is gaining ground in the medical community…FECAL TRANSPLANTS
    *Graham Lee posted a great article which talks about the complexities of the human microbiome and the role it plays in interacting with our immune system. I am not a doctor and I do not claim to be, but having read about all there is to read about this “condition”, and the fact that when all of us got diagnosed we most likely asked the doctor how did I get this and were told that there is no known cause nor cure, nothing else makes sense. I honestly do not think it matters whether or not people feel like they got the disease due to inheriting it from a family member, overusage of antibiotics, too much stress, poor diet, or a million other possible ’causes,’ the common denominator in every persons case of colitis is an out of balance bacterial environment in the colon. Fix the bacteria, get rid of colitis. I got colitis 4 years ago at age 23, never had any food allergies or didnt watch my diet whatsoever as I was very active and then all of the sudden I have this disease that I dont know how I got and there is no way to get rid of it? All the sudden I shouldnt eat gluten, soy, dairy, sugar products, cold drinks, fructose, raw foods etc etc etc as these are too hard to digest? In a way I almost never truly accepted the fact that I had this, I knew there had to be some way to get rid of it, and thanks to the internet, and reading about people who did fecal transplants, I had the knowledge/courage to do it myself. All I can say about doing FT is that after living with UC for 4 years and not being able to live anything close to a normal life, the actual procedure is so simple and easy and 100% worth it. I was so desparate I probably would have eaten crap if it got rid of UC, haha ok that may be a bit of an exaggeration, but I was literally willing to do anything.
    So basically for the last 18 months I have been following many strict diets and taking many supplements and never able to achieve anything close to true remission. I did the SCD about 3 times, GAPS, macrobiotics, paleo protocol, tried juicing, tried David Kleins natural healing which resulted in a few days of about 20 bloody BMS. I did fecal transplants and after 9 days I was symptom free, I did it for an additional 11 days or so just to make sure it that my colon was RESET. I can now eat or drink whatever I want. Went to a few weddings the past weekends and literally ate everything I wanted, drank excessively, and wake up and have 1 formed BM per day with zero blood/urgency. If I ever deviated from these strict diets in the past it would result in instant symptoms within 12-18 hrs so I basically never wanted to go out and socialize like I used to do pre-colitis. I do believe diet does play a huge role in this condition, and I do not look down upon those who believe that improper diet is the cause and a proper diet is the cure of colitis, I just think that the bacterial balance in the colon plays a much more pivotal role…probably like 99.999999%!!!
    I will not make this post too long and hopefully this will help convince more people about the efficacy of FT in dealing with colitis, especially if they are considering a life altering surgery. If anyone wants to know anything more about the transplants, how I did it, what I ate, how the whole process went etc etc please just post and I will gladly write it out. Also, Michael K has a great website which details his experience, but mine is a litte bit different because I did not have to use any antidepressants/ sleep aid drugs that he did. Hope everyone is feeling well.

    Mark

    • Jen From UK
      JenJune 3, 2013 at 6:37 am #

      Hi Mark,
      So glad FT has had such amazing results for you! I am so sick of colitis ruining my family’s life that I just can’t see an option right now that keeps my colon. Maybe if I didn’t have kids and lost a whole 13 months to the bathroom. Since my baby was 7 months I’ve watched his first steps and some of his first words from the loo. I feel like I can’t have this hanging over me forever, waiting to strike. I took 10 Imodium, the max codeine possible and had to stop the cortège on my mums funeral.
      You should def write your story in detail I’m sure that it will inspire and help lots of people :-) thanks for caring enough to post your success
      Best wishes for continued health and happiness Jen

  28. Jen From UK
    JenJune 2, 2013 at 11:25 pm #

    Thanks Bev, my GI was 100% for a surgery consult and said its all headed that way so a good thing my husband and I would rather o it electively now before it gets any worse. Losing my mum to colorectal cancer, it would seem she had undiagnosed uc (my GI thinks its def, she had arthritis,constant iritis and other eye problem), also seems to have helped. I’m scared to keep my colon not lose it. This colonoscopy is scaring me. Think I might try and see my Gp and ask her opinion. I need some new anti nausea meds anyways as cyclizine and metaclopramide only seem to work when taken together and cyclizine makes me too sleepy. Have lost 3 kilos this week so def need it sorting.
    Thanks for your support Bev and Tom we will see where we get bad colo or not! :-) do feel better for hearing your experiences x

  29. Michael Hurst
    MichaelKHurstJune 3, 2013 at 10:01 am #

    One thing I think it lost in this discussion is that the process of going in for surgery is a long one during which time the course of your illness and your knowledge of the treatment possibilities can change. During the weeks and months between the time when the surgery date is set and the actual date of the surgery you could already try something like fecal transplants and no longer have the illness. Without knowing what I was doing at the time I used L-Glutamine from the meal replacement shakes – based on the surgeon’s advice – and so I was in much better shape and able to taper off of Prednisone a whole month before my surgery date. This was combined with Apriso and mesalamine suppositories and 2 – 3 cups of pro-biotic yogurt per day which I made using VSL #3.

    When I decided to go for surgery in November 2010 after almost 11 and a half years of UC, I was in bad shape, no drugs, diets or pro-biotics had brought me sustained remission, I had lost 20 lbs which had never happened to me before. My body weight always stayed the same even with 60 mg of Prednisone or 15 + trips to the toilet a day, and it seemed hopeless. My first surgery plan fell through because the doctor significantly underestimated the healing time. This was after my parents suggested I call the office so they could plan how long to stay with me to care for me after surgery. The nurse gave me a much longer time estimate than the doctor had before. I realized I would need others to care for me for several weeks longer than I had originally thought so it was good that I called. So I changed it to Mayo Clinic in Jacksonville, FL about an hour from my parent’s house. Then I learned that someone I had spoken to who had the surgery was now suffering from Pounchitis this after having had a total of 3 surgeries because the first one resulted in torn stitches and sepsis.

    When I read the article from the Journal of Gastroenterology published in 2003 that fecal transplants had been successfully used by Dr. Borody to treat 6 patients of Ulcerative Colitis, I was amazed, but still guardedly optimistic. However I also continued to research surgery before canceling my date. I wondered if the doctor didn’t tell me about that option, and had significantly under reported the healing time for surgery that maybe I needed to take a closer look at the facts for myself. Ultimately while I was worried about the effects of surgery, I thought surgery would in the balance be an improvement in my quality of life a year from now after a short term loss in quality of life for much of the year after doing it. However I also knew since my blood albumin levels were still low, about the lowest they could be and still be considered healthy enough for surgery, my recovery might be slower and more difficult than average.

    However if I postponed surgery for 2 – 3 months to try something else first I could always still do surgery later. But if I did the surgery now then I couldn’t try any of the other treatment options later. While a post surgery life might be better than a flare of colitis, I think we can all agree that a healthy intact colon is much better than surgery if it really is possible. The doctors didn’t tell me it was, it was my own research and the case of studies of others I spoke to who gave me hope that it was and my own actions that proved it to be true. Certainly given the examples here by others is a possibility of keeping your colon without ongoing treatment, but I never would have known that if I ONLY listened to the GI doctor and the surgeon. These were the same doctors who didn’t think the problem was bacterial even though the addition of anti-biotics helped bring about a sudden remission several times, including my initial flare. It turns out I was right and I should have listened to my own judgment sooner. I’m glad I finally went with my gut while I still had one.

  30. Tom from Northampton
    TomJune 3, 2013 at 11:22 am #

    Michael

    I’m not saying im sceptical of FT but has it been documented at all that if FT is successful that you are “cured” of colitis for ever? It may work wonders and put you in remission but quite frankly that means nothing if flares could return at any time, and you are still at an increased risk of colorectal cancer later in life. I’m assuming you can’t guarantee you are personally cured of colitis whereas as I sure as hell am never going to experience another flare or ever get colorectal cancer.

    Given the sad news about Jen’s mother passing away from bowel cancer, I personally think Jen’s best treatment would be surgery.

    Call me a cynic but it’s well documented in medical journals and drug trials that around 10% of those taking the placebo in double blind experiments achieve remission. Given these facts, i’m not convinced that the people on this site that have achieved remission without the use of drugs, have achieved remission by any other means than simple good luck. I may be wrong but this site wouldn’t be here if these “cures” were effective for most as some would have you believe.

    Tom

  31. MarkFNJune 3, 2013 at 12:25 pm #

    Hi Jen,
    I can totally understand where you are coming from meaning that you have a family and UC is preventing you from living the life you should have with them. I only have a loving and patient girlfriend of 3 years who has been there to help me deal with the UC so I do not have as many people relying on me in the sense that you do…not even close. However, the known recovery time of surgery is minimum a couple months I would imagine if you have to undergo multiple surgeries and I truly believe that fecal transplants is the cure for UC. Something like 60% of a healthy persons stool is live bacteria, bacteria that when put into an imbalanced colon are able to recolonize and essentially make that colon 100% normal again. I understand and respect your decision to undergo surgery because you are right, you will effectively eliminate UC if you have no colon; I just think the long term side effects of losing a vital organ such as a colon might warrant one last attempt to heal yourself naturally. Colitis is a crazy and terrible affliction and I think everyone should explore all the possibilities out there before undergoing surgery. Nonetheless I wish you well as you prepare and undergo your procedure and a speedy recovery.

    Mark

  32. Jen From UK
    JenJune 3, 2013 at 12:38 pm #

    Thank you Mark :-) My husband is following this thread too and we will look into FT. My fear of cancer etc is to be considered… Nothing is decided yet. I would prob go for one surgery, ileostomy and be done with it. My boys are so young they won’t remember mummy, prebag and I’ve nursed my own mother to the end and know a bag doesn’t have to be a negative in your life. It can be a gift.
    Health and happiness to us all x

  33. NickWJune 3, 2013 at 2:13 pm #

    MarkFN — would you be kind enough to provide details (graphic as they may be) on the procedure you used for your FT? I am certain I’m not alone when I say this is something I would like to try before exploring other options and ultimately surgery.

  34. MarkFNJune 3, 2013 at 6:35 pm #

    Nick, after I read the Borody study which documented the cure of UC for those 6 people, I found that a few people had documented their procedures on the healingwell.com website. I ended up following the protocol that one guy had used because he too had been on the SCD diet prior to initiating his procedure. I felt like if I could mimic everything that he did I would increase my chances for success. So for about 2 months even before i had heard of FT, I had decided to retry the SCD for like the 3rd time, buying the ebook from the guys from SCD lifestyle and following the steps…I saw little improvement if any at all. I believe in the science and i feel like the SCD is a great diet in that it does a good job of ‘starving out the bad bacteria’ I just do not believe it does a good enough job at replenishing the gut with good bacteria. For those who don’t have severe UC, I think dietary changes are probably all that is needed, but for those who get a more severe case it is my opinion that the supply of good bacteria has been too diminished to ever establish the correct balance. Once I decided to try ft, I bought a bottle of “Klaire Labs Interphase Plus Enyzmes” along with the other necessary supplies(mini blender, fine metal strainer, 2 fleet 7.9oz enema bottles, latex gloves, gallon of distiller water, iodized salt, trash bags, and a luggable loo which is a portable toilet often used for camping…it’s basically a bucket with a toilet seat). For the week leading up to my start of the ft procedures, I would take the Klaire labs enzymes before I went to bed on an empty stomach. I would even wake up in the middle of the night and take another couple pills; the whole point of these enzymes was to eat away at my intestinal biofilm, basically the inner lining of the colon where the bacteria build homes and live, perpetuating a continual screwed up balance if you have UC…They must be taken on an empty stomach because they will digest food if you eat with them. Some people described intense cramping/gas after taking these enyzmes but i didnt really experience anything like that, maybe a little gas but not bad. I felt that because I did not want to take antibiotics prior to doing this, taking the enzymes would essentially wipe out enough bad bacteria and give the newly implanted bacteria the best chance at colonizing. I stopped taking these pills as soon as I started the transplants. My mindset was to do the transplants as long as I needed to until my symptoms went away and then do it for another week just to make sure. I know some protocols only call for 5 times but I felt like I wanted to do it 500 times to make sure. When researching FT, a lot of talk arises about the donor and getting them tested for infectious diseases, parasites etc. Luckily for me, I live with my 14 year old brother who would have a BM every morning before he went to school. I didn’t need to pay to get him tested, although kids nowadays you never know haha just kidding.
    So basically every morning he would go in the luggable loo and I would mix it up into 2 enemas within a couple hours. I always made sure, especially the first week, to try to clear my system as much as possible before I would do the enemas because the first 6 or 7 times I did it, taking the first enema would automatically make me crap it out. It’s important to make 2 bottles. I put 4 teaspoons of iodized salt into the distilled gallon of water for my saline solution. So i would just take the stool and pour enough water in the blender to make about 16 oz worth of smoothie…it’s disgusting I know. Often I would go to the gym and run on the treadmill or whatever to make sure I went enough times in the morning to make my colon as empty as possible before I did the enemas. After I would do the enema and be certain that I was going to be able to hold it in, I would walk my feet up the wall and do a headstand yoga-esque pose and wiggle my torso left and right and lean to the right to really make sure that the solution made its way all the up and across the transverse section of my colon as I had pancolitis. I tried not to eat that much throughout the day, especially in the beginning, because I felt that holding it in as long as possible was crucial to my success. My first week was actually not very successful, I kept a log…of the 7 possible attempts, I only held it in longer than 5 hours for 1 day and 3 of the days I couldn’t hold it in at all. I almost look at the first week I did the transplants as a total wash where I really just kinda learned how to do it effectively. Nevertheless, even though I really didn’t have successful attempts until about day 7, meaning I was able to retain the enemas for about 20 hrs, I was pretty much symptom free with no blood or urgency, more normal stool etc.
    Some things I experienced while doing the transplants was really loud stomach growling…kinda weird but in retrospect I truly think it was the shifting of bacteria. It wasn’t painful at all but it kinda makes you gassy, and it’s pretty much impossible to fart if you have 8oz of poop solution at the end of your colon so I always held it in but it was always very uncomfortable. I believe the most important thing about this entire procedure, moreso than the dilemma of whether or not to take antibiotics, diet prior to or during the transplants, possibly even the # of transplants, is making sure the inflammation/diarrhea/#of bms is down enough to be able to retain the enemas for as long as possible. If you poop out the enema shortly after taking it, its effectiveness will surely be limited in my opinion. I was in a mild flare for about 3 months prior to starting the transplants. I felt like had I not been in a flare at all the first week would have worked better, but then again, I probably would never have done this if I wasn’t in a flare. I believe taking any pharmaceutical drug in the short term is well worth it if it can aid you as you do fecal transplants.
    So that is basically it, I have continued to eat a scd/paleo diet because i love the way i feel/ look eating this way but now I can eat anything I want. I have had zero symptoms for the past 6.5 weeks and I have 1 formed perfect bm per day. As far as supplements that I now take, I take glutamine and fish oil in the morning, that is it. I have stopped the probiotics I used to take, the digestive enzymes, aloe, algae….all these supplements I used to spend hundreds of dollars per month with never any true way to assess their effectiveness. As I said initially, I feel the cause and cure of colitis is 99.99% bacteria. Although it is true that many of the lifestyle factors often attributed to the cause such as diet and stress play their part in altering the bacteria in the colon, making changes to your lifestyle such as healing diets and stress relief techniques are more band aids than an actual cure in my opinion. I realize my opinions on colitis may be different than most on here, but I feel like discussion, even if I am totally wrong, is not necessarily a bad thing. I now look at IBD’s and health from an entirely different perspective. I look at it like ones health basically falls into 2 categories…everything western/eastern medicine knowledge works to correct which is the body and its cells to some extent or another, and the second category being the bacteria in and around our entire self. As far as which category dictates one’s well being more than the other, it is my opinion that these unknown bacteria our medical community still does not know much about is more influential. I feel like the body is designed to heal itself, not be sick, and the only reason many of us with colitis are never able to get better is because we try over and over again to fix the wrong category (our cells) instead of trying to fix the bacteria.

  35. Michael Hurst
    MichaelKHurstJune 4, 2013 at 12:45 am #

    MarkFN bravo. It sounds like you’ve got this. Great documentation too! I also did what might have been considered overkill by going for 5 weeks with this.

    @ Tom I’m glad you are happy with the treatment option you chose to take and degree of certainty that you appear to appear to have gained from it. I can also understand that you would be a strong advocate of something that you feel worked well for you. I am a strong believer in decisions that the best decisions are freely made by people when they are truly aware of all of the options to choose from and their inherent pros and cons.
    As for the power of placebos, yes they are absolutely very powerful. I have seen figures that placebos often work at least 30% of the time when no actual physically active treatment was performed, on the flip side there is also a phenomena known as “nocebo” where a person can actually make a treatment not work because they strongly believe it will fail. It also seems reasonable to me that there may be other times when some combination of belief that it will work actually helps the medical procedure or drug to work.

    Placebos, “nocebos” and attitude are all part of the power of the mind. Given that the GI tract has the highest concentration of neurotransmitter receptors in the body it is no surprise that the mind and a person’s ability to manage their emotional state has a powerful and direct impact on what goes on here. That is why IBS is often treated using anti-depressants and anti-anxiety drugs as I learned from the psychiatrist who had treated me for ADHD and seasonal depression over the years. As I have discussed on my own website fecaltransplant.org and my story on this site psychiatric drugs had a very quick and direct physical impact on my gut which contributed to what I call my “cure.”

    However in addition to that, I also made a DECISION to beat the illness and “cure” myself. This was much more powerful than “remission” which didn’t really motivate me. Who can sustain a battle if its never going to end? Not me. Also remission as a word implies that you’re never really better, that you will fail and you can’t be cured. The use of the word sets you up for failure and helps create the psychopathology of the illness. However even with those psychological aspects included this wasn’t JUST positive thinking, it was also positive action based on documented medical case studies and the willingness to confront fear and uncertainty by trusting in myself and staying focused on the positive that I wanted and not my fears of what might happen. That is the gift I am truly grateful for and wish everyone to discover for themselves.

    Believe it or not like you I was quite the skeptic about “alternative” treatments, even though the “normal” ones didn’t work either. Before fecal transplants all of the treatment approaches I had tried came from doctors however the fecal transplants were different for me from doctors treatments and alternative approaches where the mechanism of action did not seem to make sense to me. With fecal transplants there was documentation published in a peer-reviewed medical journal. It also matches my experience with some past treatment successes that lasted for some time from anti-biotics and pro-biotics.

    Below is an excerpt from the research paper that I read 3 days before my surgery date, I believe this is the one Mark is referring to. The article started my research and lead to me canceling surgery to give this a try instead. “Treatment of Ulcerative Colitis using Fecal Bacteriotherapy” Borody et. al, Journal of Gastroenterology 2003 http://www.cdd.com.au/pdf/publications/paper17.pdf When I read this article I realized that my doctors had not made me aware of all of the treatment possibilities even from other doctors who had published in their own peer-reviewed journals when I had trusted them implicitly with my life and quality of life. I also started to become skeptical of what they said unless I verified it with my own research and that I needed to take full responsibility instead of just leave the decision to the doctors.

    Below I quote the first two paragraphs of the “discussion” section near the end of the article:

    “… Although these are case reports several observations can be made. All patients had documented idiopathic UC an absence of detectable infective agents. Complete reversal of UC was achieved in all 6 patient following the infusion of human fecal flora. All patients ceased anti-inflammatory therapy within 6 weeks and did not require further treatment during the extended follow-up period. After 1 to 13 years, patients remained asymptomatic with a health colonoscopic appearance and normal histology. though there is little doubt that UC can go into clinical remission, chronic UC can has not been known to spontaneously resolve both colonoscopically and histologically without relapse for up to 13 years, as observed her. To our knowledge, these 6 cases document for the first time the total disappearance of chronic UC without the need for maintenance treatment. This is an unprecedented finding that demands explanation through further research.

    Our cases differ from the remissions commonly seen in clinical practice. Remission in UC is a term describing significant clinical improvement often measured by an activity index. There is currently no definition of remission that demands colonoscopic and histologic normality with no recurrence after a prolonged period without medication. Perhaps in the future, if such a therapy can achieve prolonged absence of UC without maintenance drugs, the result should be considered a “CURE.”

  36. NickWJune 4, 2013 at 5:15 am #

    Mark — thank you very much for the additional information as well as your inspirational story. I am going to begin preparing myself as you did to start this treatment sooner than later. I’ll be sure to let you know how it works out for me. Thanks again!

  37. julieJune 4, 2013 at 6:38 pm #

    Hi Beverley,
    I have just had surgery for a permanent ileostomy, I am 9 weeks post op. I am a young 48 yr old mother of 3. Ilive in yorkshire, so not too far from you. I suffered uc for 11 long years, and like you i tried most or all drugs diets etc, the top and bottom of it is, it’s a auto immune illness that can strike at any time, often lulling us into a false sense of REMISSION. Well my experience taught me, there is no real cure at all, apart from surgery. My consultant told me my colon was one of the worst he had seen, i also developed diveticulitus so i had two evils, one causing runny poos the other causing constipation, NICE, NOT. I was in flair for 9 months solid with no hope of so called non existent REMISSION, i personally have no regrets at all, i know i have done the right thing.
    I will be totally honest, life with my baby Boris(thats what ii named my stoma)is not all hearts and flowers but i am still learning. I don’t know if yr having yr anus stitched up too, i did, oh boy hurts a lot. But i did not listen , so please rest, rest , rest it’s so important. The actual stoma itself is a breeze no pain at all and just 3 tiny hard to see scars that the surgeon glued so no stitches either. I am a positive person and wanted the surgery and just got on with it. It’s daunting at first but even now just 9 weeks on i would not go back to that life…. I am still healing due to my anus closure but i know its not forever. If you have anything you would like to ask me please do not hesitate i am happy to help or advise you anytime, you can e.mail me at jchannon1@gmail.com and i don’t think we are brave, i think we are sensible and want a different way of living instead of existing i am pain free of colitis and don’t poop my pants anywhere and everywhere no more nappies for me whoop whoop
    big hugs julie x

  38. Beverley H
    beverleyJune 9, 2013 at 11:51 am #

    Hi Julie,
    thankyou so much for sharing your experience with me, it sounds like you’ve been through alot :-(
    But I am so pleased everything went well for you (apart from the anus bit!) and that you have no regrets :-)
    I am having my anus stitched too and to be honest that is the bit ive been most worried about, but like you say, the pain is not forever and once its healed it will be like a new life :-)
    I cant believe its only 8 days until my surgery, its come around so fast, my emotions seem like they’re all over the place at the minute. I’m happy (and even abit excited) because i cant wait for it to all be over, to be totally free of colitis, it doesn’t seem possible! But i’m also scared, scared of the actual op mainly but fear of after it too and how everything’s going to feel.
    Thankyou again and thankyou for adding your email, there always seems to be new questions i think of :-)
    best wishes & speak soon :-)
    Bev xxx

    • Jen From UK
      JenJune 12, 2013 at 9:39 am #

      Hi Beverley, just wanted to echo the well wishes and give you my email, jenjen9982@gmail.com. I met with a lady today for a few hours to get the low down on life after surgery with a bag and it was uplifting! Sending a big hug and here if you want to chat/vent though I’m not where you’re at yet xxx

  39. julieJune 11, 2013 at 6:23 pm #

    Hi Bev, I want to wish you all the best during and after yr surgery, and hope you recover quickly. It’s a long haul but so worth it, been reading some replies regards the feacal transplant, I asked my consultant about the treatment, his reply was they don’t practice it as there is not enough research or evidence to support it. And also we uc sufffer’s have a increased chance of developing cancer 60 per cent higher actually, so I did not want that hanging over me. Anyway Bev good luck and let me know how yr getting on x x

    Julie x

  40. Michael Hurst
    MichaelKHurstJune 12, 2013 at 12:40 am #

    Hi Beverly,

    I wish you good luck with your choice. Since I was once in your shoes, I know how tough the choice was when it came to surgery. I wanted reassurance and certainty that I could get on with my life, and all of the health care professionals were telling me to do it. I was told that while my quality of life might be diminished from where I was when I was not in the worst of a flare that it would be worth it. I didn’t really hear anything about the downside from doctors and the patient I spoke to downplayed the bad aspects, even the college-age woman nearly died of septic shock and a ruptured j-pouch and had 2 additional surgeries over the course of a year to fix if was still positive about her experience compared to the worst of her flares. Speaking to her several years after the surgeries she was happy although admitted it was rough for almost two years. Later after my decision not to go through with the surgery I learned that she was struggling with pouchitis which had happened a few times in the past.

    However it later dawned on me the reason she was still so positive was because 1) There did not appear to be any viable alternative for her to live a normal life at the time and 2) The decision had already been made, and all she could do was try to make the best of things and be supportive of others in the hopes that this would be a good thing for them too. 3) People don’t want to hear something that conflicts with what they want to hear.
    It doesn’t normally make for polite conversation, especially amongst strangers.

    Individual patient stories aside the survey results of patient satisfaction were similarly positive, in spite of documented complications http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780072/ . However I’m sure none of those patients who had surgery were presented with an alternative way to be free of the illness while still having their body intact and avoiding complications from surgery. Most people are not going to want to be miserable and second guess themselves especially if there appeared to be no other option at the time they made their decision.

    However what if there is information about another possibility? Given some promising personal stories including two on this discussion thread alone as well as Dr. Borody’s patients and some other small studies that are just coming to light, that possibility of prolonged health over many years and maybe indefinitely without surgery is real however it could take several more years to build up enough research evidence for widespread changes to be made in how treatment is conducted for this illness. At the same time access to 1information is much greater now for doctors and patients than it was in the past and I think the process of changing established methods of treating illness is accelerating too.

    A look at the history of western medicine is illustrative of treatment practices once considered the “normal” best way of treating someone that are now considered to be un-necessary at best to other treatments which are now regarded as quackery to the point of killing someone. For example the first President of the United States George Washington died after losing half of his blood in an attempt to treat a respiratory infection. It may have seemed like a good idea at the time to bleed out all of the blood to get rid of the illness, however now that we know more about how the body works we can see it was a really bad idea …

    Or for a less extreme and more contemporary, relevant example, until the last 20 yeas or so peptic ulcers in the stomach and duodenum—the first part of the small intestine were thought to be caused by factors like stress and spicy foods instead of h pylori bacteria. Yet up until 1997 when a widespread campaign was launched in the U.S. to educate the public that knowledge – that ulcers were caused by bacteria and were treatable using anti-biotics was not widely available to the general public. This even though in 1984 a Dr in Australia actually infected himself with h pylori bacteria and cured himself using anti-biotics then published his findings. Even before 1984 there was some significant research however it often got lost or forgotten over the years before 1984.

    I wonder what decisions people made who were facing stomach surgery between 1984 and 1997? Back then access to information was much more limited and patients couldn’t seek out medical information as easily, nor share their experiences with other patients like they now can, so most probably did what their doctors told them to do. However would a person who had that information have rushed into surgery, unless it was absolutely necessary to treat an acute almost life or death situation, if they knew that a doctor had infected himself with bacteria to cause stomach ulcers and then by treating the bacteria had stopped the ulcers. Would they have still gone along with their doctor if he seemed unaware of this finding or was dismissive of it? Or would the patient have first wanted to try the anti-biotic treatment to see if it could work for them too? Would it have been sensible to head into surgery to remove part of your body when there were known well-documented risks and complications, without first exploring a viable alternative that had relatively few side effects that does not permanently alter the body which may eliminate the need for surgery? Sadly enough the sensible route would be to do what the doctor says, even though within even a matter of a few years that decision could prove to be outdated and surgery un-necessary.

    Once I found out that fecal transplants had been successfully used in documented published case studies I realized that I did have a choice. The evidence was slim but compelling. However rather than just trust the doctors on this one, who were unaware of Dr. Borody’s article I actually did some more research and weighed the pros and cons for these two decisions.

    Choice #1) Do the surgery now, with the promise that I would be cured of Ulcerative Colitis by virtue of no longer having the primary organ which was affected by the illness, be cared for by others while the stitches healed which means I can’t lift anything weighing more than 5 lbs for a few weeks, hoping that no stitches tear or become infected, while getting used to an ostomy bag on the outside of my body. Then 6 months to a year or so later go through a second surgery to connect the j-pouch, then some more rest for a few weeks to get over that while re-learning how to go to the bathroom, which would be 5 – 6 times a day for the rest of my life including probably at least once per night for at least the first year of the j-pouch, if all went the way they said it should. All of this with no possibility for positive change or way to undo it. There would be some dietary restrictions and a risk of pounchitis and other complications even including Irritable Pouch Syndrome once again http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780072/ I would have to pay extra attention to staying hydrated during exercise, I might have to fast before taking transcontinental airplane flights or major events away from a toilet. While colon itself could not be the problem since it just wouldn’t exist anymore apparently some of the same problems could persist including bacterial infections and IBS, just without the colon.

    While the odds for success after going through the process generally did look pretty good, it was going to be quite a process to get there. As for a guarantee, the most compelling argument for the surgery, in the short run there would be a significant decrease in quality of life and ability to work and care for myself and others. However would the longterm advantages make it worth it? Would the complications post surgery be less bad than pre-surgery? Probably yes, but would post-surgery be better than sustained remission / prolonged absence of symptoms / a cure without surgery.

    Choice #2) Delay surgery to try the fecal transplants first to see if they worked for me like they did for Borody’s patients at the time of the study ranging from 1 – 13 years and counting of being free of all signs of UC. The results were nothing short of miraculous, almost too good to be true, could it really work for me? The other patients of his had pretty severe, treatment resistant cases similar to my case, patients ranged from 5 years of illness to 20 years. However in spite of all of this signs of improvement from the treatment started almost immediately and most were off all maintenance medications at the 6 week mark.

    What clinched it for me was even if it didn’t workout I could always choose to go ahead with the surgery later, but once I had the surgery I couldn’t choose to do anything else later, unless it was to treat pounchitis with anti-biotics like Cirpo and Flagyl (again) or by using pro-biotics. What did I have to lose by waiting a few months to give FMT a definitive try first? I had the whole rest of my life to live without a colon. If it didn’t work all I had to lose was delaying the start of recovery from surgery a few months and potentially delaying the start of my life post-UC. Then if they didn’t I could always have surgery later if I wanted to. However if it did work I could be healthy and weaning myself off drugs instead of getting used to the ostomy bag and preparing to have the j-pouch re-connected. As it later turned out the time spent during the fecal transplants was not bad either, I was able to go about my normal life.

    I was already starting to lean strongly against surgery based on what I had read, but was still on the fence. It looked like in the longrun surgery would not be so bad even if the recovery process wasn’t so great. It wasn’t until I met with ostomy nurse days literally the day before my surgery date that it really hit home for me, and I finally decided to postpone it. Actually seeing the ostomy bag and hearing the details of the road ahead which I had largely choosen to overlook was hard and while I may have been overly dramatic it hit home that this was going to permanently alter my body too. I had a very strong emotional feeling then, that I wanted my body intact. Maybe this seems irrational or melodramatic to those who are happy with surgery, but I was thinking why would I put myself through all of this if I had another choice?

  41. vaughnJune 17, 2013 at 12:56 am #

    good luck today bev , not long now and you will have a life again, and if you need anything just give me a call

  42. Jen From UK
    JenJune 17, 2013 at 2:46 am #

    Thinking of you today :-) all the best! Xxx

  43. julieJune 17, 2013 at 5:18 am #

    My thoughts are with you today x x

  44. NickWJune 19, 2013 at 5:45 am #

    Just a quick update — Mark, I prepared for the FT in a similar manner as you did, and have done 3 FTs in the past 4 days (I would ideally have done 4, but unfortunately my wife who is my donor does not have to “go” every day).

    The first one went pretty well, and I was able to retain it in my body for just over 7 hours. We then missed a day, and I have done FTs each of the past 2 days but sadly was only able to hold it in for ~ 2.5 hours each time. There doesn’t appear to be any positive effects from this procedure quite yet, but I’m certainly not ready to give up. I plan to go for another week or so (hopefully everyday) and see where I am after that.

    One thing I did notice was that there was a lot of activity in my body after administering the FT. It sounded like there was a war going on in my intestines (not painful, but loud) which I thought was a positive sign because it echoes the experience that Mark had. I thought the bacteria were squaring off and trying to colonize. Unfortunately I don’t think the good bacteria have prevailed (at least not yet) because my symptoms are the same or slightly worse than a few days ago.

    Do you have any tips on how I can retain the enema for a longer period of time? I’m currently on 40 mg prednisone and it’s having absolutely no effect on me.

    I am going to keep trying because I really want this to work. Any other pointers would be appreciated.

    • MarkFNJune 19, 2013 at 6:47 am #

      Nick,
      Awesome man it sounds like you are on the right track. If you have only done 3 infusions in 4 days you are not nearly close to resetting the bacteria in my opinion. The first week I did it I basically screwed it up by not making 2 enemas the first few times because the first one would always make me have to go pretty much within a couple mins…and then when I did start making 2, I crapped that out about 3 or 4 times after a few mins that first week. Like you, I experienced loud but painless rumbling in my stomach throughout the day and it made me very gassy but yes it’s kinda hard to fart if you have 8oz of poop smoothie at the end of your colon haha. I didn’t experience total relief until about the 10th day of fts, and that came after about 3 days where I was able to retain the enemas all day/night for about an average of 21 hrs or so. I always made sure to go to the gym and run or do whatever I could do to get my system going as much as possible to have as many bms as possible before I would do a transplant, thereby reducing the likelihood that I’d need to go later in the day and clearing my colon as much as possibLe. There are things you can take like Imodium, gas x, or other similar products that help reduce diarrhea but I never took anything like that because I always felt like my symptoms would get worse when I used to take Immodium regularly. I think you just need to be patient and give it enough time, even if your only retaining the enemas for an hour or so per day, it will eventually take hold and you should be able to hold it longer and longer as your bacteria becomes more like your wife’s so the need to take other things can become unnecessary.

      I am now 2 months 100% no symptoms, I eat healthy but no longer super strict scd/gaps/paleo or whatever diet is out there. I can and have eaten all the ‘trigger foods’ that used to give me ridiculous blood/diarrhea which was dairy, gluten, all kinds of sugar even fruit sugar, raw foods, caffeine, soy etc etc with absolutely no problem. As you go through the fts, I personally found it good to stick to scd, or I didn’t eat any foods that used to cause me problems, because you want to reduce the inflammation as much as possible and give the enemas as much time to work. Are you doing like an inverted headstand after you take the enema? I think that is important to make sure it gets as far up there, regardless of whether or not you have left sided colitis or pancolitis…any degree of colitis means the colon bacteria is out of whack and I think it should all be reset. Good luck and just stay positive with it, it sounds like you are on the right track. Let me know if you have any other questions.

  45. NickWJune 19, 2013 at 8:09 am #

    Thanks for the quick feedback Mark — very appreciated.

    I am doing a headstand for the first 5 minutes or so after the enema. From there I move quickly to my already prepared couch where I have stacked pillows like a mountain and lie down with my feet and hips elevated.

    I have done SCD in the past with very minimal success. Like you, I bought the SCD lifestyle package and did the intro, through phase 1, 3, etc. I’ve actually gone back and done this 3 or 4 times and the only thing it seems to help me with is calming my insides down (less gut activity). Too bad this really didn’t translate into less BM frequency….. I currently eat gluten and dairy free and have been for a while. In general I think this helps me, but it’s hard to quantify exactly how much.

    I’ve considered Immodium, but have never taken it because I have read it can have costly side effects for UCers (toxic megacolon). So I think I will just stay the course and hope that it becomes easier to hold it in for a longer time. It just seems hard now because even with 40mg of prednisone in the morning, I seem to have to go to the washroom every 3-4 hours even without the FT.

    Thanks again Mark.

  46. Beverley H
    beverleyJune 27, 2013 at 3:08 am #

    Hi guys,
    Thank you so much 4 the love and best wishes, i am 10 days post-op and doing well :-)
    Squidgy (my stoma, named by my kids hehe) is fine, ive had no pain at all from it & its alot easier to cope with than I thought it would be, its early days yet & ive had a few mishaps but its not as scary as I thought it would be :-)
    My main source of pain is (yep you guessed it julie!) my bum! oh my god it is painful! But the best thing is that i know it will will heal & the pain will go away.
    I can already see a massive difference, no running back and forwards to the toilet, no sitting there for ages in agony :-)
    I cant wait until my bum heals to see properly the difference it will make to my life, I feel so positive about the future & I cant wait to start enjoying it :-) xxx

    • shelly in maineJune 27, 2013 at 3:36 am #

      Awesome Beverly…great update. :-)
      Continued health and healing, Shelly

    • Mike from Ohio
      Mike HJune 27, 2013 at 10:03 pm #

      Hi Beverly,
      Glad you are doing well. If I may ask why did you make the decision for a permanent Ileostomy? I have a loop ileostomy right now and compared to the end ileo that you have and that I had after my first surgery it sucks, but my J pouch is in and actually fuctions once per day until my final takedown when it will be used 100% of the time and my bag goes away.

      Yes, yes and yes to fish and chips. It is one of he first meals I had after my surgery and my body minus my colon absolutely loves them and does great with that meal. I always make sure that I empty my bag twice while eating out so I can have a comfortable ride home. Be very careful with your ileo. It is very easy and common to get a hernia around your stoma in fact I have read that most but not all that get the ileo will at some time get a parastomal hernia, I did hardly anything between surgeries and got a small one that was repaired when my pouch was created during my last surgery. they are not painful but you will notice a bump that will get larger around your stoma over time if you get one. Also depending on what time you go to bed do not eat two hours before bed and you should only have to empty once during the night but before you get used to your stoma I suggest getting up every two hours to at least check it. To many horrer stories about bags busting at night and making a poo mess all over you and the bed. After about 6 weeks you will not even know that you have your bag, you should get to the point that you do not even feel it there and at times forget to check to see if it needs emptied. Even though life with a bag isnt all that bad it will take some adjustment and it will affect your quality of life but it will be much better than life with UC. I can no longer wear belts because a belt has poped my bag of twicw while sitting down and I can no longer tuck shirts in because of the pressure that it applies to the bag. I highly recommend that you get a stoma belt. It will help hide the bag and give you more confidence to do things. Just make sure you get the right one because some of them suck and do not work by putting to much pressure on the bag itself. One more suggestion, when changing my bag I always take off the the entire system and then shower with my stoma fully exposed. It helps get all the nasties off of it and makes it easier to change and keeps my skin from getting to itchy. Just have everyting cut and ready to slap on after you dry off and apply the powder. Good luck.

      Mike

    • Paul NugentApril 25, 2014 at 6:16 am #

      Hi Bev,
      I am from Darlington , just down the road from you.
      I have Crohn’s colitis. Last Sunday my bowels just
      Opened up and loads of blood came out of my bottom.
      I started to feel weak but I managed to phone an
      Ambulance . I have had part of my colon removed and
      I think a small part of my bowel. I am feeling much
      Better ,although I still have a little blood when I go to the loo. I hope you don’t mind , I just wanted to share
      This with you. Warm regards, Paul.

  47. Jen From UK
    JenJune 27, 2013 at 3:31 am #

    Made me smile to see what a difference surgery has made to you already :-) all the best xxx Jen

  48. NickWJuly 5, 2013 at 6:15 am #

    Hi Mark and others,

    Another update — I have been continuing with the FTs (inconsistently mind you, maybe every other day on average) and my symptoms have definitely improved. My BMs are becoming less frequent, I can sleep through the night, and the urgency is not quite as insane as it once was. My stool consistency has been fluctuating — it was quite good last week, although still a little loose (but no D for the first time in months). The last couple days has gotten a little worse for whatever reason. I still have small amounts of blood too, but considerably less than before I started with this treatment.

    I am going to continue with the FTs and hope that improvements keep coming. I just wish that my donor was a little more regular so I could establish this regimen for several days in a row (I’m getting my wife to drink some prune juice!). Also, I’m now down to only 10mg of prednisone / day.

  49. NickWAugust 1, 2013 at 6:27 am #

    It’s been nearly a month since I’ve posted and my last FT was done on July 21. I feel great! I’m sleeping through the night, 1 and sometimes 2 BMs / day with VERY little to no blood. I’ve been completely off prednisone for nearly 3 weeks and I’ve done nothing but improve.

    While I couldn’t be happier with my progress, I don’t feel as if I’m “cured”….. at least not yet. I’ve steadily improved since my last FT which I held in for 21 hours. As I mentioned above, I still am having occasional blood with my BMs, but just a tiny amount. Usually bright red on the outside of the stool or up to a drop or two right at the end. So while I’m not symptom free, I certainly feel like I am. I feel better than I have in a long, long time.

    Mark – in your opinion, should I continue with the FTs until I am 100% symptom free (no blood)? Do you think there is anything left to gain?

    Thank you once again for any input!!

  50. MarkFNAugust 2, 2013 at 8:53 am #

    Nick….congrats on your success that is absolutley awesome. From my opinion, I do not think you need to do any more FTs. I think the fact that you are only having 1 or 2 bms a day is evidence enough that the bacteria has shifted in your favor. As far as still having a little bit of blood remaining…I think it could be for a couple reasons. The first is that you simply have to give it enough time to work itself out. This is very plausible because I do not know how long you were sick, personally I had colitis for about 4 years, but Ive read it takes one month to recover for every 3-4 months you were sick…meaning if you were sick for 1 year it would take 3-4 months for a total recovery of bowel function. However, I do not agree with this; I think the body is much more resilient than that. The second and most likely reason you could still be having blood is that you are constantly eating something that is giving you slight irritation. Personally, I had zero symptoms after 10 days of fts but then I began eating tons of eggs, I would eat 6 eggs every morning for breakfast. I started to get intermittent bits of red on the TP or stool every so often and once I stopped eating them the red disappeared. From my understanding, if you have any blood whatsoever there is still some level of inflammation going on in the intestinal wall. I think the fact that you are having only 1 or 2 bms per day means that your bacteria is correct since its not raging inflammtion causing tons and tons of bms and pain etc etc, but that you are still eating something that is causing you from healing 100%. It seems like you are about 90% of the way there but if I was you I would just reassess what you are eating. The great news is that you have made it this far and you most likely need to make a slight adjustment for a little bit to let your colon heal 100% and then you most likely will be able to eat the food/foods that could be causing the problem. I personally do not eat eggs, bananas, and almonds…I have found these tough to digest. Also maybe try not eating anything raw for a while or anything too cold, drinks or food, and see if that helps. Getting the colon to function totally normal in my opinion requires a period of time where we have absolutely no symptoms, probably only a couple of weeks not months and months like some may lead you to believe, in order for the colon to FULLY heal and then you can go ahead and reintroduce problematic foods and be fine. Hope this helps and congrats on your success its a pretty liberating and unbelievable feeling isnt it??

  51. NickWOctober 1, 2013 at 5:46 am #

    It’s been 2 months since I posted, and there really have not been any changes. I am still doing OK — only 1-2 BMs / day, but still a small amount of blood (just on the TP, or at WORST a drop or two into the bowl). I am on no prescription meds other than Mezavant. This is after a 2.5 year long flare after being diagnosed and never being stable off of prednisone. I haven’t taken any prednisone since June.

    While I still have to tinker with my diet and see if I can rid myself of the last little bit of blood, I do have another question: Will the urgency ever go away? I am having solid BMs, but when I feel I have to go, I have about a 5 minute window to find a washroom before it’s too late. Now, this is actually better than when I had nothing but diarrhea for a couple months, but the urgency has really not improved like I hoped it would.

    Can I get people’s opinion on this? Any recommendations? Do I have to solve the slight bleeding (thus the inflammation) before the urgency gets better?

    Thanks.

Leave a Reply