Dazed and Confused about my UC

Intro:

23 years old and just got diagnosed this past December, after about a year or so of symptoms and not know what was up with my body!

Some more about me:

I’m Canadian and a little nail-polish obsessed. I’m also a total crazy cat lady and so not ashamed of it.

Symptoms:

Bright red blood at times, little to no mucus. I’m thankful that I don’t get the sudden urges most talk about, and go to the bathroom 1-3 times a day, but not normally… things are definitely not coming up roses. And I always have the sense that even after I go, there’s more.

Dazed and Confused about my UC

So, in October 2012 I noticed some blood when going to the washroom. Thought nothing of it until it didn’t stop. Went to a gastro specialist who just spoke with me and said it was nothing to worry about (sure!) and dismissed me. Finally went for a colonoscopy after noticing tons of recurring mucus and blood and having trouble going to the bathroom. The doctor who did my colonoscopy said that I might (might?!) have UC, but wasn’t sure and to go see a specialist, which I did a few months ago. He said I have mild UC based on my colonoscopy report and I’ve been on Salofalk ever since. Is anyone else on Salofalk? I’m kind of discouraged because I haven’t notice much change in the two months I’ve been on it, and though there’s rarely any mucus I still see the occasional bit of blood… and that totally worries me.

I want to change my diet as I think it’ll really help, I’m just so scared!

Is it stupid to say that I don’t want to give up all the foods I love (really, I don’t think I can live without bread)? I know I have to make a change, but I’m terrified I can’t keep up and I don’t even know where to start. One person says up your grains, another says no grains; one says this, another says that. I don’t know what’s right and what’s wrong anymore and I feel it’s keeping me from starting and sticking to a new diet. Where did you guys start? Any advice?

On that same note, many of you say you react to food and to be aware of what triggers a flare up, but I truly can’t differentiate when a certain food effects me or not. Is that normal? I feel no difference on a day to day basis. I’ve cut coffee and tea for two weeks, no difference. If I eat eggs one week and not the next, no difference. Do you guys really notice a huge, immediate difference when eating certain foods or not?

Are any of you gluten-free? I’ve heard that helps but, if any of you are, how difficult is it? I feel like gluten is hidden in just about everything. Has it helped you?

Also, is it normal that I’ve basically been in a flare-up since this whole thing started, back in October 2012? That’s over a year! Is that kind of crazy?

More than anything, though, I’m just scared the my UC is going to get worse, as it currently doesn’t seem to be getting better. I’m fortunate to have a mild case and hope that I can find some way to go into remission!

written by Natacha M
submitted in the colitis venting area

thanks for sharing Natacha! -Adam Scheuer, founder of iHaveUC

thanks for sharing Natacha!
-Adam Scheuer, founder of iHaveUC

Ask Adam:

“No questions, just want to say thanks for the site! As someone who has been recently diagnosed, it’s nice to have a resource like this with other people that know just what you’re going through.”

What up Natacha,

First off, I am pretty sure you are the first “Natacha” to use this site! Love your name and how you spell it(just wanted to throw that in). You’re the first out of the closet nail-polish obsessed UC’er, but surely there’s others here too.

What else…well, welcome to the site, welcome to the sometimes crappy but not always world of UC.

I know you didn’t have any questions for me, but I just can’t help to jump in here and give you some ideas/answers from my point of view with some of the q’s you wrote earlier.

First, here’s a post about salofalk supps from a while back from another UC’er you might want to dig into:  salofalk post link

You talked about how you’re super scared to change your diet, and I sure as hell don’t blame you.  I guess I myself wasn’t actually scared to change my diet, but I was more under the impression from my old GI doc that food was going to make no difference.  So, I simply believed what he told me over and over again and ate whatever I wanted.(and of course things continued to deteriorate and symptoms stayed…)

That said, sure, some people are scared to change their diet for a bunch of other reasons.  Lots of what you mentioned actually.  Come on, there’s so much info on the internet about what to do, not to do, eat, not to eat, la dee da right??  Scared, confused, fed up, pissed off, jacked up on steroids…, info overload.  You name it, treating UC is not easy, and conflicting views make it EXTREMELY HARD to make decisons.

Enough of that ramble, you mentioned “triggers”.  Again, this is never going to be the same all the time for everyone, and things even change with individual people over time.  For example, I used to think that coconut water really messed me up and sent me into a flare.  Well, I sure as hell don’t think that anymore as I’ve been drinking lots of it lately and feeling just fine.  And I could go on an on with personal experiences, the laundry list is big.  But lets step back here.  There are foods that I for sure would not eat.  Bread to name a biggie.  Beer to name another.  And there’s another long list.  And what might be on my list, may be on yours, or maybe not.  Much of it is trial and error.  But not all of it.  And if you follow the same principles of diet that I follow, there are basic groups of foods that you might avoid altogether.  (Things like grains whether gluten or not, starches, different dairy products…to name a few.)  I have listed out a bunch of meals that I eat in the cookbook I wrote, and for sure there’s a bunch of stuff I avoid like the plague in there.  Other stuff like high quality protein I eat all the time.  It’s based on the theory that we can manipulate our gut bacteria by limiting what we put in our mouths.  Simple as that.

Enough of that ramble.

Giving up food you love if you change your diet you mentioned.  That’s one that you will probably have to bite the bullet on if you do what I do.  No other way to sugar coat that question.  Is it tuff?  It’s not easy.  But when you see a rock hard crap fly out of you and don’t have to use a half roll of toilet paper to wipe your booty with bloody red stains on it…well, it ain’t so bad afterall.

Natacha, I wish you the very best no matter what you do.  Early days after diagnosis are always a major learning time.   You’re going to get real good at learning about yourself and your body(even more than you already are) and that’s a pretty cool side bonus of UC.

I wish you the best,

Adam Scheuer









19 Responses to Dazed and Confused about my UC

  1. Angela Rochelle March 24, 2014 at 3:59 pm #

    Years later after being diagnosed I have to agree with Adam. It’s all trial and error with the food/diet. I highly recommend keeping a journal of times and what you eat, then how it affects you. Trust me over time you will get to know your own body…even better than what doctors can tell you. But even things that don’t bother you may change over time. Just when you think you have it figured out everything changes. Best thing to do is have a sense of humor (Adam is great with that part which is why I love reading his thoughts) and never ever give up!!! Good luck with everything!

    • Natacha March 25, 2014 at 4:44 pm #

      Thanks so much, Angela! Definitely getting more into this diet thing and crossing my fingers it’ll help!

  2. Tara B
    Tara March 24, 2014 at 4:27 pm #

    Natacha,
    So glad you posted you story! It really helps to hear from others! I agree with everything you have said, alot of your worries were mine as well. I must say that I also am also obsessed with nail polish! :) I do my nails at least once or twice a week! Anyways about UC, I was also recently diagnosed in november. When I found this site it really helped a lot and everyone is so nice!

    My UC also doesnt make me go multiple times… Im lucky if I go one time a day! I get really constipated and wont go for like 3 or 4 days sometimes. The main thing I started that really helped me go to the bathroom normally was probiotics(Ultimate flora critical care)(Thanks to Bev)! I also take some vitamin D everyday. I have been a lot better but still need to make some changes. There is so much info out there but right here is where I found the best because it is people like us in our situation.

    I havent really started a specific diet…. yet… I am also worried about it and I love my carbs! I definetely dont eat them as much as I used to. I eat a lot more salads and veggies. The way I know something has messed with me is usually the next day I see blood. Like I can’t have steak :( I also have to cut out seeds from tomatoes, sesame seeds, stuff like that.

    I know how you feel, I was and still am scared and was depressed for a while, but I truly feel a lot better then I did in the beginning. It is really scary but you can do it! My advice is dont overwhelm yourself… Learn a little each day, but dont run out and try different things at once. Try one thing at a time. Hope this helps!

    Best of luck to you!
    Tara B.

    • Natacha March 24, 2014 at 7:23 pm #

      Hi Tara! Thanks for you kind words :) At least we have polish to distract us, right?

      Ya the whole food thing is definitely the most difficult for me, but I’ve realized that it’s just food… and while it’s awesome to enjoy it and indulge, it’s definitely not worth it if it means I’m going to be sick all my life. But one step at a time!

      Best of luck to you as well!

  3. Natacha March 24, 2014 at 7:20 pm #

    Hi Adam!

    Thanks so much for posting this and for your helpful comment. Since writing that post, I’ve actually gone vegan & gluten free (but have yet to give up bread!). It hasn’t worked out great for me as my symptoms haven’t gone away, but I’m thinking of trying out SCD next. Maybe bread really is the bad guy here… as totally sad as that is.

    Thanks again :)

  4. Adrian March 24, 2014 at 10:04 pm #

    Hi Natacha
    I’m Canadian as well, here in a small town 250kms from a doc that knows anything. Was diagnosed at 25, 12 years ago. had blood in my stools and would randomly get so constipated that I would end up in vomiting fits, got down to128lbs, I’m 175 now. Had lots and lots of pain, cramps, blood, I didn’t start out with much diarrea, the blood was the concerning thing. Much like you.
    12 years into this and I still have issues, was passing blood in February, now in march it’s gone, I didn’t change a thing! Have colonoscopy #7 happening in two weeks.
    Oily foods seem to be the biggest triggers. I was at a crohn’s and colitis fund raiser in Saskatoon saterday night, had some interesting conversations with fellow uc’ers and crohy’s, was more a stress reliever than a fund raiser. Even after 30 years people never forget how UC has changed their lives.
    So volunteer at a crohn’s and colitis event, it will help a lot with the stress! Its your body and your environment so you have to find your solution. Keep trying, keep a record of the food you eat and your stools.
    Just a side note, I’ve been to Japan, Singapore, Australia, New Zealand, Korea, Germany, Italy, Switzerland and the US. UC has forced me to see that life is short and to get out and enjoy the day

    • Natacha March 25, 2014 at 4:45 pm #

      Thank you for the tip, Adrian! I’ll definitely look into some events around my community. Best of luck to you!

  5. Julian March 25, 2014 at 5:35 am #

    Hi Natasha,

    I am the father of a Celiac and UC son. My son was diagnosed back in May of 2012, since then, our lives changed and things still changing. We went fron GI to GI up to a point where I disregard what they have to say since they know nothing (or they play dumb and just want to sell their drugs to cash in some money), my wife and I took my son’s health in our own hands and started the Specific Carbohydrate Diet (SCD).
    It is scary in the beginning, the changes are radical and you have to re-wire your brain for the new lifestyle (yes, no bread, no refine sugars etc…), you have to move from the Standard American Diet (SAD) to the SCD diet.
    Begin by reading very carefully the book by Elaine Gottschall Breaking the Vicious Cycle, read once twice and implement it carefully with fanatic adherence. You will heal in the long run! Attack the problem now if you want to keep your health.
    We put our son into remission in about 9 months. He bled for a long time until his guts healed. But, you only have two choices: meds and visit to GIs or the SCD diet.
    We have been doing it since Nov. 2012 to encourage our son (21 today) and he eats nothing but SCD compliant foods.
    You can search this forum and look how desperate I was… when I was looking for help I posted here originally…
    I even created a local support group where I live to help others with the same problem…
    You are welcome to write me if you wish and I can share more of my experience with this illness.

    Cordially,

    Julian
    Father of a Celiac and UC son
    Here to help anyone who needs me
    Non-GMO advocate

    • Natacha March 25, 2014 at 4:49 pm #

      That’s so kind of you, Julian. Just today I received Breaking the Vicious Cycle and I’m so motivated to get started! I truly believe it will help me out, especially after reading about all the success. I’m so glad to hear your son is in remission! Hopefully I can have the same success. :)

  6. Becka K
    Becky March 25, 2014 at 6:53 am #

    We are being poisoned with our western diet. These autoimmune diseases are on the rise and I worry about the future. So many people are sick, and the ages of diagnosis are getting younger. We need to get to the core of the problem. Inflammation. I have suffered with UC for 18 yrs now. My last flare did not respond to prednisone, however, I did not change my lifestyle either. This time is different. I am currently battling a flare with 60mg prednisone, but now I take an ultimate flora 150billion probiotic every morning with a swig of aloe vera. Then I juice cabbage, greens, carrots, etc. I follow the SCD diet and I feel the trade off between going to the toilet once or twice a day and seeing brown vs going 14 times a day and seeing nothing but bright red blood and pain is BEYOND worth it. I do not eat red meat, even though it has protein, it is very acidic and hard to digest. I have also found a doctor who integrates western medicine with eastern philosophy and does not “poo-poo” (to coin a phrase) my ideas, he actually advocates them & is doing a complete work up on me checking for allergens, all vit/min def, candida, organ function, etc. I have incorporated large doses of turmeric, included bromelaine, msm, betaine, dhea (to help my poor adrenal glands taxed by pred), B3, drink metagenics ultrainflammix 2 scoops/day, take apriso 4 pills 2x day, 20,000 iu vit d, Oregono capsules, calcium (to help my poor bones taxed by pred) and 5000mg high quality fish oil. I agree not everything works for everyone. My regime is strict, and tapering off the pred is always the tricky part, but this is working for me right now and I will do whatever it takes to keep my guts!

    • Natacha March 25, 2014 at 4:49 pm #

      Thanks for the input, Becky! Wish you the best of luck with everything!

  7. Charlene March 25, 2014 at 7:24 am #

    Hello
    I have been diagnosed with UC for over a year now, I take pentasa it stopped all bleeding and mucus. I am also diagnosed celiac;( that has been 4 years. I am on a strict gluten free diet.
    I have had 3 flare ups in 1 year, going through one right now, so am on predisone;( seems to help with energy and aches.
    I go to the bathroom pretty much every time I go. So 8-10 a day;(
    This weekend I ate out to many times and now am fighting inflammations In my intestines, Bloating is a understatement.
    I have not figured out trigures yet for my UC flare ups, I no seeds,peanuts, tomatoes, greesy, and spicy foods affect me, when I am flaring up. So I stay away.
    I no that say food is not the case I have been told, but you need to read your body, eat healthy.
    Natacha I recommend starting off really light, then Easing your way into foods.
    But I do suggest changing diet to figure out your own body, and for your own sanitary.

    Hope you will find a solution and see some results.
    Take care Charlene

    • Natacha March 25, 2014 at 4:51 pm #

      Hi Charlene. I know what you mean about not knowing triggers… I find that’s the most difficult thing to understand. Maybe with my diet change, I’ll know what works and what doesn’t. Hopefully you’ll start to feel better soon!

      • Charlene March 25, 2014 at 8:47 pm #

        Thanks Natacha
        Take everyday one step at a time!
        Thanks for the info Gail

  8. Sher March 25, 2014 at 10:19 am #

    NATACHA!,

    I too was anti- diet change for years, partly bc my GI said it had nothing to do with diet, huh.,.that a laugh, but 2 1/2 years ago I succumbed to the change and how glad I am.

    First of all I didn’t go reading every book and recipes on diet. I started with strictly gluten free only, which within 1 week bleeding stopped… Now don’t get me wrong I still had UC symptoms, but no blood which was great! It took a few months to have solid movements 1-2 a day.

    I thought I’d be kicking and screaming for bread, cakes, etc…. But once my symptoms starting resolving and energy came back I was like I’m on to something!!!! I have a nearby grocers that has gluten free everything! My bf doesn’t even know when I make gluten free pasta, etc. I eat rice dishes, corn shells, etc, you just have to be more observant about what your putting into your body, most labels say “contains wheat” after the ingredients… But maybe just start there, in a few months you can move on to SCD or whichever diet you may choose…. If you want!

    But keep in mind everyone is so different, our “disease” may be in different parts of our intestines, colon etc… So what sets me off or works for me may not do anything to you, but what I say is its worth a try! You deserve to feel your best… BTW, what exasperates mine is excess alcohol as I found out this fall… Still somewhat dealing with re-healing from that! Good luck dear!

    • Natacha March 25, 2014 at 4:52 pm #

      So happy to hear you’re not craving bread! Maybe I’ll be able to do it, after all :) Thanks for the advice, and I agree, everyone is different! All about listening to our bodies.

      • Sher March 25, 2014 at 6:10 pm #

        I learned to be creative! I loved sandwiches ( chicken salad) … So I use romaine lettuce and make wraps… Or I use gluten free crackers and add meat to top once you start feeling good I don’t miss bread… I did make good gluten free cornbread a few times this winter added butter and honey… Yum! May not be SCD legal… but I only have been gluten free….baby steps :-)

  9. Gail March 25, 2014 at 11:12 am #

    I am glad to see Julian and Charlene both mention celiac disease. I think that is definitely overlooked by doctors. It just so happens that today on a website called The Gluten Dude.com is a story from someone who wasn’t able to make it to a bathroom on time and had “an accident”. It’s surprising how many people are in the same boat and most UCer’s will relate. There is another website called The Patient Celiac. The woman who started that one is a neo-natal specialist (so a very credible doctor herself). On her blog, she relates her struggle to get a proper diagnosis, even while she was in medical school herself. Also, Jennifer Esposito, an actress in New York, has a website called jennifers way.org. She relates her long journey to diagnosis and she has a book coming out in May which should be very interesting and informative. She also operates a gluten free bakery in New York. These websites are worth checking into just for more food for thought.

    • Natacha March 25, 2014 at 4:54 pm #

      Interesting! While I was tested for Celiac (do not have it) I still think I might have an intolerance to gluten. But I’ll definitely check those sites out. Thanks!

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