Ulcerative Colitis Tips


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

UC Newby

me not too long ago

me not too long ago

Introduction:

I was diagnoses with UC Oct 2012 through a colonoscopy. The GI wanted to put me on oral and suppositories and to have all vaccinations, as my immune system would be put to sleep. This sounded horrific to me and I refused all medication. I went to a Naturopath and pretty much went into remission within a month. Maybe a coincidence, I’ll never know, but I am now in a flare up that has rendered me on the couch and 3 weeks off work.

Some more about me:

I cycle as a hobby and participate in the odd charity ride. My last ride was 100km and within a week after the ride I had my flareup. I don’t know if this was a coincidence or is it possible that cycling aggravates UC? I have heard that restricted blood flow could be a reason for a flareup.

I am still on my Naturopath meds and have found a new doctor who is willing to work with me, who has just taken bloods and stool samples. My last doctor just wanted to send me back to the GI who would just want me on meds.

My daughter has turned into my Mum and tells me “now Mum if you don’t improve, what are you going to do?” “you will go back to the doctor won’t you and not go all natural on us”. My kids think I’m a bit of a non conformist and risk taker, but I think that’s just the way to get the best out of life :-)

Symptoms:

Currently I am in a flareup with the usual filling the toilet with blood, runny bowel motions, mucus and gas :( I am on the toilet approx. 10 times a day. When i have a bowel motion that is a bit of a strain, its like my injera are coming out. This time i have had back pain going down into my legs, which is strange, I didn’t have these symptoms last time.

Since being diagnosed with UC…

My active lifestyle has pretty much stopped and that’s depressing, I see a beautiful day outside and all I want to do is go out and cycle. I miss it!!! I feel my fitness slipping away and that’s depressing, I’m not getting younger, I’m 49 and before UC I felt i was getting fitter and fitter for much later on in life. I had goals set and I also feel them slipping away. I am in Australia and the doctors here don’t want to help you much in the doctor rooms, they are much more comfortable just sending you straight to a specialist. Sorry but I just think that’s a cop out. Thank god I’ve finally found a lovely lady doctor, recommended by a friend.

I have refused all medication so far and eliminated all foods and gradually adding foods back into my diet. It’s incredibly boring and honestly I don’t know how long I can eat like this. I haven’t been cycling for about a month now and am scared to get back on the bike because I felt that the cycling aggravated my UC.

Does anyone have any thoughts about cycling and UC? Because I am new to UC I am still naive about a lot, i hear many stories of hospitalization and very I’ll people and can’t imagine how bad it can be.

My doctor and others keep reminding me that if left untreated it can turn to cancer and you could lose your bowel and have a bag fitted permanently? Could anyone please give me some feedback about what they mean about ‘being left untreated’? I hear that many people have had UC for many many years and have not had cancer or colostomy bag permanently.

My biggest concerns are that the doctors telling me if I don’t take medication I could be in alot of trouble and I do hear that some people say that the meds don’t work for everyone anyway?

Medications:

I am only taking supplements, mainly enzymes, probiotics, slippery elm, chia seeds, soaked prunes and greens (wheat grass, spirulina, barley grass & chlorella). Experimenting with Fruits and vegetables at the moment, slowly introducing other foods.

written by Nefi

submitted in the colitis venting area




11 Responses to UC Newby

  1. Tom
    Tom August 18, 2013 at 12:20 pm #

    Nefi

    Depending on the severity of your disease, a flare left untreated could potentially cause toxic megacolon which can be life threatening. This disease is no joke so listen to your family and follow what they say. Ive tried all the meds, all failed for me and I had surgery 3 months ago and im doing great. I have no doubt that without trying meds when I did, there’s a chance I might not be here to write this.so be under no impression that it’s worth the risk of not taking medsnif you really need them.

    I cant really comment on the effects of cycling on UC but I imagine exercise would be beneficial. Not that I have ever felt like doing anything other than sitting on the loo during a flare.

    P.s it would be an ileostomy bag not colostomy. Having bag Iis not the end of the end of the world and i got used to it quickly and im 24

    Hope you get relief soon.

    • Nefi
      Keryn August 18, 2013 at 4:44 pm #

      Hi Tom,

      Thank you so very much for sharing your experience, I am happy you are getting better and are here to share your experience with me and others! Like you, I don’t seem to hear of meds working for the majority, but I understand what you’re saying about taking them if needed, good advice, thank you. I guess it’s hearing it for the first time from someone who has UC that I have taken notice – Thank You!! I will listen to my new Doctor, at least she’s taking blood samples etc., and is half interested.

      I don’t understand the bag, is it temporary after the first op?

  2. Kathy Prieto August 18, 2013 at 1:56 pm #

    If u want to go more natural- have u tried a good whey protein powder, coconut oil, glutamine? Also increasing ur probiotic would be good. May want to stop the greens and prunes as they may be aggregating the flare. Getting on a course of prednisone to control some inflammation is not a bad idea- not all drugs are bad for the short term. My husband was down to 100lbs and the prednisone eased the inflammation while the other things kicked in plus it made him want to eat. husband steadily improved with simple SCD yogurt and I added the glutamine, coconut oil , whey in it.( he flares when he quits smoking and now he uses 5 cigs a day and he has been flare free for 2 yrs). Everyone’s gut is different…. So it is a lot of trials with all the natural stuff. Look at old posts-one poster recommends extra Virgin olive oil- that has been his thing….

    • Nefi
      Keryn August 18, 2013 at 4:53 pm #

      Hi Kathy,

      Thank you very much for sharing with me. I have thought about the greens being too harsh and the prunes and possibly these contributing to my sensitivities. I have heard that Coconut and Glutamine have worked for many, I can try small amount of protein powder too. That’s a great idea putting it in yoghurt, I didn’t think of eating yoghurt either, I’ll put that on the UC shopping list too. My shopping list isn’t very long and it’s boring, so I really appreciate any new ideas- Thank You!

      Wow that’s interesting about the smoking, I gave up smoking probably about 6 months before I was diagnosed, makes you wonder if there’s a connection. I wonder why smoking helps, do you have any idea why smoking would be a benefit?

      Agreed extra virgin olive oil seems to be a hit with many.

      Thanks for all your great advice and I truly hope your husband keeps on keeping on…. You’re a wonderful support…

  3. Ken August 18, 2013 at 2:34 pm #

    Nefi,

    You can be active again. You may be able to do it without drugs. Many of us do. But go to the doctor. Figure out what works best for you.

    I started out on Asocal, but it never fully worked. I achieved remission by cutting back on sugary foods, and following advice of several folks on this board regarding supplements and probiotics. I’ve been well since January, and am very active. I’ve done 3 half marathons, and 4 triathlons this year, and at 46 I’m back where I was before I was sick. You can to. I’m nothing special.

    I eat anything now, but still try limit sugar (I love Cokes). I also try not over eat.

    You can ride while flaring. Pick a time you can go for a short ride shortly after using the bathroom. Find a loop that brings you back by your house every 10 or 15 minutes. Go at an easy pace. Then adjust as necessary as you figure out how your body reacts. Even a short ride daily will help you maintain fitness until you are in remission.

    Good luck and don’t give up.

    Ken

    • Nefi
      Keryn August 18, 2013 at 5:07 pm #

      Hi Ken,

      Yay I’m excited to hear that being so active is working for you, I’ll have to bite the bullet and go out. Truly I’ve been pretty tired and a couch potato, though lately I feel a little more energized. To be completely honest I’ve been scared to go out, just the thought of aggravating the flare freaked me out. Thank you, I will go out for short rides and do the loops like you said. Being use to 50km plus I just have to adjust my mind set on this one. I’m sure you know how that is…

      I have read so much great advice on this board, everyone is so amazing and helpful. I will also go back to my Naturopath and up the probiotics, I feel they are one of the keys to UC.

      No lectures here, BUT you do know what coke does to your insides :( it must really be stripping you of a lot of good bacteria and enzymes. Gees if you kicked Coke, I reckon you’d kick UC altogether…lol

      You’re doing something right, what an achievement so far this year..keep up the great example for us all

      Take care

      Keryn

  4. Catherine
    Catherine August 18, 2013 at 4:03 pm #

    Hi Nefi,

    Sorry to hear your story. Rest assured you are talking to people who understand about the fatigue, missing exercise and not wanting to follow the medical route.

    I do karate and jujutsu and have been away from training for 3 months earlier this year and am only slowly getting my fitness back, and it is very frustrating. Cardio does cause inflammation though, so you need to take it easy. There is some info on the connection here: http://scdlifestyle.tv/is-it-ok-to-work-out-when-youre-sick/

    On taking the natural route, I think it is still work having a doctor, even if you don’t do what they say – it gives you another source of information and if things take as turn for the worse and meds become necessary, you have someone who knows your background and things can be dealt with faster.

    All the best

    Catherine

    • Nefi
      Keryn August 18, 2013 at 5:32 pm #

      Hi Catherine,

      Thank you for your heartfelt wishes, and totally agree everyone here is awesome and so informative. Love it !!

      Spot on, totally agree with all you said, it is a relief that I have found a good Doctor that is actually interested in working with me, instead of just sending me off to specialists that want to drug me up.

      WOW what a great link, I saw the vid, funny guy and awesome info, I’ve subscribed to them, thanks so much!

      Well done with finding your balance with your Karate and jujutsu, I hope I can do the same, Ken above gave some great advice re going out and cycling for short loops close to home, well more to the point, close to my toilet…lol

      Thank you again for your support and info, love the website…

      All the very best

      Nefi

  5. jay jones August 19, 2013 at 1:48 am #

    Hi Nefi,

    I am in oz too, wanted to tell you to check out propolis.IT is natural comes from bee hives, if I get mouth ulcers or rashes during a flare the propolis fixes it generally overnight, tastes like crap but its great, you can get it from bee keepers or the compounding chemists. The liquid is best. Happy for you to email me at jaygee1632@hotmail.co

    • Nefi
      Keryn August 19, 2013 at 4:25 am #

      Hi Jay,

      Thanks for the great info. That’s Really interesting I’ve just started taking Manuka Honey, thinking it may help with it’s healing properties and natural antibiotic properties.

      I just emailed my compound chemist to see if they stock propolis, I’ve never heard of it so am really keen to try.

      I’ll let you know how I go.

      Thanks so much

      Keryn

  6. Joe Barrow
    Joe Barrow August 19, 2013 at 5:01 pm #

    Keryn again like everyone has stated I am sorry to hear about your recent flare-ups and how it is affecting your everyday lifestyle. Myself I stay active as well used to perform P90X then afterwards started to do Insanity which I fell in love with. Needless to say after being diagnosed last year in October I was not able to work out like I used to.

    In the long run my colitis ended up being severe and I lost my colon. Ended up with what is called a J-Pouch or in my case due to difficulties an S-Pouch. No regrets in having my colon removed I felt so much better afterwards again I’m not saying it’s for you everybody is different. Now as far as going natural I would not recommend honey. I used to eat a lot of honey especially local honey to help with my allergies. Having a high immune system killed me in the long run and honey will increase your immune system which ends up deteriorating the good bacteria in your stomach. Since my good bacteria was being destroyed by my immune system I had nothing to break down my foods. Virgin oil I found out helps a lot also Adam on this site sells a really good book that has all kinds of ideas for dieting which you should look into. Hope this helps and remember not everything will work for everyone for everybody is different.

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