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

How Much TP Does a UCer Use in a Lifetime

Juliet colitis Ontario Canada

me with my husband

Introduction:

I’m 37. Living in Ontario Canada. Originally from the south of England (UK). Was diagnosed with colitis in 2001 after a few years of symptoms. Things got pretty bad trying to get someone to take me seriously. I have had many different meds over the years. Been on Asacol (800mg tablets x 6 per day) for a long time now. I do not think they’re working. Moved to Canada 3 years ago. Had a temporary work visa for 2 years. Now going through process for permanent residency. Currently have no health coverage which is worrying and costly. Also not allowed to work or travel.

Some more about me:

I like to be active and outdoors. I love my dog, Maggie. She was a surprise gift from my husband almost 2 years ago. I used to enjoy cooking and baking. Not so into baking anymore as I can’t eat sweet treats anymore.

I used to be a dental assistant and part time bar tender. I gave up all that glamor to complete an honors degree in English Literature & Language with Creative Writing. Yes, I love reading and I write.

Symptoms:

Currently flaring right now. Have lots of bleeding. The dreaded diarrhea and cramping. No appetite even though I started on 40mg of prednisone! Feeling pretty down as I do not seem to have achieved wellness in the past 2 and half years. Looking into the SCD diet very seriously. I have pan colitis. Was originally diagnosed with right sided and patchy colitis.

How Much TP Does a UCer Use in a Lifetime

So after my first hospital stay back in 2001 it has been a rough roller coaster ride. I used to put my faith in what little information Doctors/Specialists gave.

I am sure we have all met our fair share of people who have forgotten why the joined the medical profession. I’ve been told diet doesn’t matter. That astounded me. I’ve been laughed at by GI’s when I’ve asked questions regarding alternative treatments. And no-one explained that each flare meant inflammation will cause more damage. I understand what chronic means, but I think it only recently hit me. This is not going away. This will get worse. I can’t keep taking these prescribed drugs either.

I got married on September 1st 2012. I was determined to not only look good in my dress. Also I didn’t want to be unwell and attempting many bathroom breaks. That’s just not happening in the dress I wore! So I did lots of research about diet, UC and health. I decided to do a candida cleanse. I bought a kit consisting of probiotics, psyllium, caprillyc acid and calendula. So you had a daily drink made of the psyllium and other 2 liquids. You also followed a strict diet. Very similar to the SCD, except they wanted you to abstane from meat/fish and fruit.

I felt great! Even after just a week. My BM’s were the most normal they’d been EVER! And regular too. I lost weight and I looked good. People I knew kept asking if I’d ‘had something freshened up’!! Meaning had I had Botox or fillers! After sticking to the strict diet for few months, I began to get chest pains. I also found it hard to breathe. I thought it may be the Asacol. We went out for the day as my mum was over for the wedding. I didn’t have my psyllium drink that day. I had no shortness of breathe or pain. These symptoms returned when I had the psyllium again. I of course have an intolerance to it. I also fell off the wagon and went back to including sugary and starchy foods. By Christmas I was flaring.

I have tried many different diets, herbal remedies, probiotics, etc. I feel that either things have not worked for me, caused a flare, or were just so hard to sustain in real life. I don’t want to lose my colon. I still like it, even though it seems to hate me. I feel the SCD may be my last chance to do so.

In the past, I never let UC get me down or stop me doing things. Right now I’m not feeling my usual up beat self. What do you guys do to change your mood? And does anyone have any insight for someone embarking on the SCD for the first time? Thanks guys :)

Medications:

Have had lots of different meds in the past. None of them seemed to work. Asacol seemed to have some ok results for a while but now I feel it’s making things worse. Had so many courses of prednisone but I can’t keep putting my body through it.

written by Juliet

submitted in the colitis venting area




12 Responses to How Much TP Does a UCer Use in a Lifetime

  1. Adam
    Adam August 30, 2013 at 5:11 am #

    Hey Juliet,

    Thanks for sharing!!!

    Wow, your 1 year wedding anniversary is coming up super soon! way cool:)

    Hopefully I can give you some hope. I’m coming up on my 5 year anniversary of my UC diagnosis, and just passed my 4 year anniversary following the SCD diet.

    There’s lots and lots of people who use this site who follow some sort of diet protocol or diet/supplement regime to help and control their UC. There are still more people using medications by ALOT, but that’s OK too. I for sure think that diet is a great way for many people to tackle the symptoms, and regain control of basically our lives.

    Tips…

    1) Keep a positive spirit as much as you can. Hard to do when there’s blood flying out of your butt, but its still very important. The colon is an amazing organ, and it can literally go to hell and back and still remember how to do its job properly.

    2) Make sure you have a doctor that you trust. You don’t have to see eye to eye on EVERYTHING, but as long as you trust him/her, that’s pretty important.

    3) As for diet changes and seeing results…. Be realistic. By that I mean have reasonable expectations. There’s a webpage on this site which includes stories of people starting the SCD diet: http://www.ihaveuc.com/category/specific-carbohydrate-diet/starting-scd-experiences/
    (read them, and see what others with ulcerative have to say)

    Finally, my firsthand personal experience with diet has made me really happy. It hasn’t been easy, but I am now officially going to have my first month of taking less than 1 poop per day, assuming I don’t drop 3 bombs today or tomorrow.

    My colon is cranking out rock hard craps once again (even though there were times when nothing but blood and mucusy white crap came out, and unfortunately I’m guessing you know what I mean).

    AND, to answer your real question… I am down to using about 1 roll of toilet paper per week (wife included). WAY WAY less TP then back 4 years ago.

    So hell the fricker yes, there is hope for us UC’ers for sure. Whether you do what I do or not, that doesn’t matter. There’s all sorts of ways to skin the cat here. And don’t discount for a second getting surgery. There’s plenty of folks who have shared their stories on this site who have gone that route, even our badass boy Blake who just shared again what’s up with him post 1 year after the big cut. you can real all his stories here: http://www.ihaveuc.com/author/blake

    I wish you and your family the very best,

    Adam

    (ALSO…if you need a superb masseuse in Ottawa who has UC just let me know. She’s way way cool and you’d like her for sure)

  2. Juliet
    Juliet August 30, 2013 at 5:33 am #

    Thanks so much Adam! So far this site has been informative and boosted my spirits. I am currently feeling much better than I did even a few days ago. I am making my way through the BTVC book now and it makes so much sense to me. I think being able to regain some control over your life is a big thing with UC. I am lucky to have such a loving and supportive husband too. I will keep reading everyone’s stories and keep you updated with my progress. I do not doubt it’ll be a long process but I am determined!

    Cheers!

  3. Don
    Don August 30, 2013 at 6:03 am #

    Hi Juliet! I am glad you are feeling somewhat better. I was diagnosed in 2007 with Pancolitis. I have heard the same thing from doctors about diet not having anything to do with this condition. My logical mind could not and would not accept that! After 5 days in intensive care and another 6 months of recuperating I began to flare again. That’s when I found the SCD diet and found that it made all the difference in the world. I saw immediate results. Unfortunately after 2 years on the diet I thought I was cured and strayed. I flared even more severely and ended up in the hospital again. Since then the diet has not worked for me. I believe the bacteria has adapted. I had to go back on Prednisone recently. 40mg/day was not doing it so I am at 60 now and feeling much better. I would definitely try the diet but make sure you are very careful when adding new foods after doing the intro. Add one at a time waiting at least 4-5 days to see how you handle them. It’s not easy but soon you will be enjoying some delicious things and hopefully feeling good. Good luck and thanks for sharing your story. It’s amazing what we go through. Only fellow UCers can really understand and relate.

  4. Juliet
    Juliet August 30, 2013 at 7:24 am #

    Hey Don!

    Thanks for your response and I’m sorry you’re going through tough times flaring again. I can sympathize with you when you say the diet is not working for you right now. I’ve felt in the past, when I’ve cut out certain foods for a length of time, then had the misconception that I would be ok to eat them once in a while! Big mistake. It seems I developed even more sensitivity to these foods. It usually begins with eating something like potatoes. What harm can potato do, right?!!

    I plan to take things very slowly and carefully. I’m not fooling myself in to thinking I can just rush ahead. Especially being on steroids, it can give you a false sense of security. I shall be abstaining from all sugars, including fruit and honey, to start with.

    We’ve all been in the denial stages and the I must be cured stages. I certainly won’t be rushing to give up meds, but this will be my long term goal.

    Thanks for your support. I hope our experiences can help each other in some way. :)

  5. Don
    Don August 30, 2013 at 8:51 am #

    I am moving ahead with my plan to do fecal transplants and will be starting in about a week or so after a course of Cipro. You can follow along by reading my blog here. http://www.blogger.com/blogger.g?blogID=3736443650074894652#allposts
    I am hoping this works for me as it did for Michael Hurst and I am following his protocol. It’s great to know we are here for each other. If I can be of any help let me know. I love this site! Thanks Adam! You da man!

    • Adam
      Adam August 30, 2013 at 4:37 pm #

      Don I wish you the very best with the fecal transplant therapy. And thank you so much for being such a positive person even during tuffie times. It means so much to so many:)

  6. Gail August 31, 2013 at 9:27 am #

    Hi Juliet (love your name by the way!),
    I am a Canadian born and raised in Toronto (now 57 yrs old), currently living 2 hrs north of Toronto, on the west side of Georgian Bay. I hope you are enjoying living here and have taken in some of the beautiful areas of the province. It must be extra difficult since you don’t yet have OHIP coverage but, I must say, our health care is not what it used to be anyways. There are some very good mainstream doctors but they rarely look “outside the box” and only know to treat people with drugs because that’s all they’ve been taught. I think you’ll be on the right track with diet changes. Personally, I highly recommend food intolerance testing (which is not covered by OHIP anyways – you have to go to a private clinic, like a naturopath). In the end, it can actually save money because you won’t end up buying food that it is a problem. For store-bought food, reading labels is a must. I did not have ulcerative colitis but my son currently has it (he’s on Remicade and won’t change his diet), my husband had it in the 90’s but it was so severe he had to have his colon removed and we didn’t know anything about it then and we have numerous other auto-immune issues in the extended family. I developed a bad rash a few years ago but I didn’t want to accept the steroids that the doctors wanted to give, so took it into my own hands. I got a homeopathic anti-fungal “medication” because I did think candida overgrowth was part of the problem. I cut out mushrooms and most sugar in order to “starve” the yeast. I didn’t do a “cleanse” but followed a candida “diet”. A good probiotic is essential too. At one point, my hands and fingers were so bad and swollen, I had to have my wedding ring cut off after 34 years. I am now back to normal (it took about 9 months to clear up). We eat gluten free, dairy free and mostly organic, fresh food. It’s amazing how many pesticides, herbicides and fungicides are in our food. We are told the amounts are “safe” but I’m not convinced that we really know how are bodies react to these things. Each small bit may be a safe amount but it is the cumulative effect that is harmful – who knows.

    Hope you are feeling better soon and happy first anniversary tomorrow!

    Gail

  7. Andy September 1, 2013 at 9:01 pm #

    Hi Juliet,

    Try mutaflor! It’s not your average pro biotic. And it’s very hard to get hold off. I had to get it shipped from Australia to China but it is available over the counter in Canada. I have been taking it for about 1 month and it had helped a lot as I seem to have become tolerant to pentasa. Basically it’s different to other probiotics as it is actually e.coli based. It is the only probiotics with proven efficacy against colitis and is a medical treatment it in Germany. It can also be q quiet cheap as it can be cultured in milk.

  8. Juliet
    Juliet September 3, 2013 at 8:27 am #

    Hey Gail,

    Thank you for your well wishes and sharing your story/advice with me.

    I do enjoy living here, will enjoy life even more when perm residency comes through and am allowed to work and travel etc.

    I had food allergy testing some years ago and discovered allergy to mushrooms as well as intolerances to certain foods. I think I need to be retested as things in my gut have changed. My friend is referring me to a good naturopath. I’ve always been interested in diet and nutrition so when told diet doesn’t affect your body and health, I just couldn’t accept/understand the logic there!

    I’m certainly with you on the gluten/dairy free diet and we always opt for the organic! Can’t wait to get a house so I can grow my own herbs and veggies. Maybe even keep a few chickens! I spend so much time reading labels in the store! It took me a while to realize the different labeling laws here compared to the UK. I know changing my eating habits in the past helped and it will again. I really wish your son would consider his diet too. It’s hard to begin with as you feel deprived and left out, but being able to enjoy some level of health is far more important and satisfying than what you feel you may be missing out on.

    Hey Andy!

    Cheers for the tip! I’ll have to get some eventually. From what I’ve been reading about probiotics I’m in agreement regarding the e-coli. I’ve just started making my own yogurt so introducing it slowly. It’s all about baby steps and allowing some healing! I’ve rushed things in the past and ended up back at square one!

  9. Holly in Virginia
    Holly September 3, 2013 at 12:14 pm #

    Hey Juliet,

    I’ve followed the anti-candida diet many many times before. I’ve used that to treat my chronic fatigue syndrome for the past 15 years or so (just a month at a time once or twice a year). I’ve never had to take psyllium fiber. For me it was mostly just avoiding yeast, fungi, sugar, fermented things, and limiting fruit. The only things I took supplement wise were anti fungals like undecyn. My GI thinks this postponed the UC from actually taking hold until this past year.

    I’m still using a lot of the ideas of the anti fungal diet for my attempt at making my own anti UC diet which is working pretty well so far. I am vegan so SCD isn’t an option. I have found that too much sugar makes everything worse and it’s not that hard to avoid vinegars and mushrooms. I’m off most grains so yeast isn’t really an issue either.

    Anyway, just saying don’t throw out the anti candida diet just because you can’t take the psyllium fiber. SCD is pretty much anti candida anyway so hopefully that will work for you.

    Best wishes from your fellow 2012 bride,

    Holly

  10. Ted September 3, 2013 at 5:35 pm #

    Hi, Juliet,Don, Andy and ucer’s in this site.
    And not forgetting Adam .Always there and sharing everything with us all.

    This year is my entering of eight years of UC. I have gone through a very bad time at the first stage . I was given heavy dose of steroid to stop my heavy bleeding. To be frank, predisone is not in my favour . Then doctor changed my medicine to Imuran. The combination of Imuran with Asacol works well for almost two years , until….I was naughty on my eating and drinking …..I got a flare up again. Then from there I was given Prograf (Tacrolimus). It works well . But it’s a bit troublesome cos’ have to go for blood sampling for the first one or two sections to measure the appropriate amount of doses. To take this medicine ,it’s wise to consult your doctor . Even though you can get it at pharmacy .
    To cut short my story here, with medication and adjusting on intake of food can help during my relapse..
    Oh yes, I am taking Asacol 400mg , nine tablets per day.
    Doc advises me to continue to take Asacol even I am under remission . That is to avoid risk of colon cancer.
    We may have bad times from now and then. But let us think positively and giving each other support and encouragement.
    Thanks for sharing.

  11. Juliet
    Juliet September 4, 2013 at 1:53 pm #

    Hi Holly!

    I’m with you on sticking to the main elements of anti-fungal diet. It is similar to SCD in many ways. Even when I’m ‘allowed’ to start introducing fruit, I’m going to hold of for a while longer. I’m also not going to add any dairy, except the homemade yogurt, for a long time too.

    I was vegetarian for many years and also vegan for some years after that. At the time I felt healthy. I ate nothing but whole foods and organic. Also did lot of juicing. I just feel that although my body was getting lots of nutrients, I was getting very little protein so my body was not able to repair itself. Eating meat and fish was a very hard decision and it still bothers me. We always try to get pastured and organic.

    I think sugar is a problem for everyone. Even those without IBD or autism, etc. refined foods such as sugars and grains eaten over long periods of time will eventually damage any healthy system. It’s accumulative I feel.

    Hey Ted!

    I don’t think anyone really likes prednisone! It has saved my life though. I’ve been on Asacol for many years as maintainence. All drugs seem to stop working eventually. A friend recently said, it’s not if you’ll get side effects, it’s when. You’re on the right track with diet alterations and a good positive outlook for sure. I guess all any of us can do is the best to keep symptoms at bay and keep smiling :-)

    Thanks for your support and comments guys xxx

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