Ulcerative Colitis Tips


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First Month with Ulcerative Colitis

Demi-RIntro:

I was diagnosed with UC, January 13, 2015 immediately after my colonoscopy. My symptoms started to appear the previous year, first in July – blood was present in my stool for one week, and then it went away. My second flare-up happened in October and it lasted for 3 weeks. Still I ignored it, I thought I was just stressed because I had houseguests. The third flare-up was December and by that time I said, “That’s it!”. I needed to have this checked.

Some more about Demi:

My ethnicity is Filipino (I’ve yet to meet another Filipino with UC, it’s quite a rare illness in our country!). I’m generally healthy – prior to being diagnosed with UC, I’d wake up early to stretch, drink warm water on an empty stomach for cleansing. I have a balanced diet and avoid processed food as much as I can. I typically put in 10,000 steps daily in my pedometer, drank 8 glasses of water/day. I used to treat myself to a daily glass of wine and some fruit and cheese prior to dinner. Love trying new restaurants. I don’t get enough sleep – I only get 6-7 hours a day.

Demi’s Describing Her Current Symptoms:

I’ve been free of symptoms for the past 8 days (Whew! Keeping my fingers crossed).

First Month with UC

Growing up, I remember my stomach was sensitive to sudden weather/temperature changes. If I stepped into a place that had terribly cold air-conditioning, it would trigger a bowel movement. When I was a teenager, I had a crush on my classmate and every time I would see him around campus, I’d get butterflies in my stomach and it would also trigger a bowel movement (thankfully I was over him after a week). I thought these episodes were normal but now that I have been diagnosed with UC, I wonder if there were earlier signs that I may have ignored.

I’m Filipino and UC is not common in our country. UC has changed my life tremendously because first, I knew I had to commit to a lifestyle change. I can’t drink or eat the way I used to, I would have to learn to say “no” to people offering me trigger foods, I would have to learn to say “no” to social events I don’t feel comfortable going to. If I have to dine out, I review the menu in advance and check the restroom situation – because you’ll never know!

I now have to be prepared anywhere I go in case I ever need to have a “restroom emergency” (at my worst I had 7 BMs a day). My emergency kit includes wipes, hand sanitizer, Poo-pourri Before-You-Go Toilet Spray (you can get this from Amazon, it’s amazing in managing odors).

I’ve had a sigmoidoscopy and a colonoscopy one month apart. At first my GI thought I had Crohn’s but after my colonoscopy she confirmed that I have left-sided colitis. As far as the colonoscopy I used Prepopik which tasted like lemon soda. Five days after the procedure I had painful cramps, I was gassy and my stomach made strange noises. I was assured this was normal and true enough after a week, it all went away.

I have a supportive husband who does his own research about UC, he helps me prep my food and he eats the same things on the FODMAP diet. We have cleaned our cupboard of junk and now check food labels diligently. I have my share of family and friends who throw different ideas and treatment options and it can be quite overwhelming but I know it’s their own way of showing they care.

I’m hoping that my condition does not get worse than it’s current state. I can’t imagine how I’d be able to work if it did! I also look forward to traveling more with my husband, I hope my UC doesn’t get in the way!

Demi Describes the Medications and Lifestyle/Diet Changes She’s Making:

I am currently on Apriso. Also taking Bio-K Probiotics, Fish Oil and Vitamin C supplements. During my first 3 weeks of being diagnosed, I removed dairy and gluten from my diet. Now I am shifting to the FODMAP diet (so far, so good). Still contemplating on whether I should try the Whole30 (Paleo).

written by Demi

submitted in the colitis venting area




apriso, filipino, fish oil

19 Responses to First Month with Ulcerative Colitis

  1. Rosanne
    Rosanne February 16, 2015 at 9:02 pm #

    Wow…I have had UC over 32 years. The first year I thought it was silly that I thought going into air conditioned stores triggered a potty run. I never mentioned it to anyone. Until now that you mentioned it Demi I think maybe there was a connection! We didn’t have A/C at home and I believe that temp change messed with my body. Back in the day…a lot of stores did not have public restrooms. That was very difficult! Thank you for sharing your story. I have had UC longer than not at this point. Diagnosed at age 28. yes…it is good to know all the bathrooms where you are going to be. And…don’t be afraid to tell anyone about your illness…you will be surprised how many others have similar issues. Good luck. You will be fine. AND…be sure to get a much rest as you can. Key to wellness.

    • Demi R
      Demi February 19, 2015 at 9:26 am #

      Dear Rosanne,
      Thank you for the words of comfort! I’m glad I’m not alone in regards to having a “temperature-sensitive” tummy. How have you coped for 32 years? Have you been in remission?

      • Meliza April 2, 2016 at 11:06 am #

        I am also a Filipino I am 32 years old,I was diagnosed with severe ulcerative colitis 1 month ago,I am on prednisone right now and next week il go on my next treatment which is remicade infusion,I lost too much weight,I was 114lbe bfore I got sick and now I am just 93lbs, it is so hard for me I was in and out of the hospital,It is so hard.

  2. Natalie February 17, 2015 at 3:43 am #

    Demi,

    I wish you a lot of luck and hope you will be feeling better in the near future. I was diagnosed with UC in October of 2011. I weaned myself off of Lialda and take Probiotics and Astaxanthin as per Bev’s advice. I have been in remission since (couple of years)….THANK GOD!

    Rosanne,

    Wow…..you sure have had UC a LONG time. God bless you! How have you been coping with UC all these years? What meds have you taken and are you on any meds at the present time? Are you presently in remission? Sorry for all the questions but I am really curious as to how you have been coping with this dreadful disease for 32 years!

    • Demi R
      Demi February 19, 2015 at 9:27 am #

      Thank you so much Natalie! What probiotics are you taking? Are you also on a special diet?

      • Natalie February 19, 2015 at 3:59 pm #

        Hi Demi!

        I am taking the Ultimate Flora 25 Billion live cultures. I’m not on any special diet and I’m able to eat ALMOST everything. I do, however, stay away from corn or corn products. I used to LOVE popcorn but haven’t eaten it since my diagnosis in 2011. I really miss it! I also stay away from alcohol. I will have a glass of wine on occasion.

        • Demi R
          Demi February 20, 2015 at 9:15 am #

          Dear Natalie,

          Glad to know that you can now eat almost everything! Also happy to know that you’re able to tolerate wine. I LOVE wine and used to have a glass every night. Just finishing my antibiotics now and look forward to having a little sip of vino. I hope it doesn’t trigger a flare. Currently on Bio-K Probiotics (30B). Thank you so much for the encouragement!

          Take care,
          Demi

  3. jay February 17, 2015 at 4:03 pm #

    Demi,

    I love that you mentioned about the AC I thought I was the only one that had an issue with this. I find the AC in the car the worst.

    Hope you continue in remission.

    Jay

    • Demi R
      Demi February 19, 2015 at 9:28 am #

      Thank you Jay! And I thought it was silly that I had that little quirk – didn’t realize a lot of people have that sensitivity!

  4. jess c February 18, 2015 at 8:28 pm #

    Hi Demi

    At first glance at your pic I knew you were a Filipina.

    My name is Jess and I’m a pinoy too diagnosed with mild UC last Dec 2013 in my first colonoscopy which I availed during my annual executive check-up. Doctor said there were scars in my whole colon.

    Prior to that I had occasional blood in my stool which was diagnosed before as caused by hemorrhoids. I had blood once or twice a year as far as I recall since 20 years ago. It can be a drop to around 5 drops but would disappear the next day.

    But I don’t rush to toilets and normally goes just once or twice a day in the morning for bowel movements. So except for the blood, everything seems ok.

    Until the colonoscopy. Doctor gave me antibiotic and probiotic for a week and treated it as bacterial. After almost a month, I noticed blood which I usually had once a year. The doctor started to treat me as a UC patient and gave me a month of prednisone and 2 tabs of Salofalk 500 4x a day.
    I think I got worse after this cause I started to have 3-5 days of blood every month but still no rushing to the toilet and maintained the normal 1-2x bowel movement. Blood presence became more prevalent like 2-3x a month.

    I repeated the colonoscopy last Mar 2013 and the scars were gone. Doctor said the meds did it. He said to continue Salofalk. Still had blood once a month which I really think is caused by the hemorrhoid. But can’t argue with your doctor!

    Last October, against the advice of the doctor I stopped the Salofalk and just continued on the Normagut probiotic and daily 5g of psylium fiber supplement (C-Lium) which I started right after diagnosis.

    Everything seems ok now and better than when I was on salofalk which by the way was pretty expensive too. Now I’m wondering if I really had UC or am I just in remission or is the blood just really from the hemorrhoid.

    I still have anxiety over this everyday especially whenever I go to the toilet and peek at my poo…is there blood? Thank God there’s none!!! Since stopping Salofalk last October I only had 2 drops of blood once this month. Better than the monthly and more often drops when under Salofalk. I really hope it’s just hemorrhoids.

    Btw, I’m a silent follower of this site and appreciate the sharing everyone does especially Bev who inspired me to take probiotics. This is a great site and cheers to Adam for creating it.

    I wish you well, Demi, and all the rest of our UC friends. I’m sure your UC will be as tame if not gone in a short while as our ethnicity is not really conducive for UC.

    Ingat!

    • Demi R
      Demi February 19, 2015 at 9:37 am #

      Hi Jess C,

      I am so glad to meet a fellow Pinoy here! Were you diagnosed in the US? Do you still eat Filipino food? I am currently on the FODMAP diet (which has been good to my stomach). The diet however, prevents me from enjoying Filipino cuisine. I can’t even think of one dish that I can eat with this diet!

      I can totally relate with you regarding the anxiety…after all every time you go the bathroom you’ll never know what’s in store. And of course you breathe a sigh of relief when it’s blood-free.

      What probiotics do you currently take? I hope you recover fully from your symptoms. Miracles do happen!

      Take care and thank you for reaching out. Maraming salamat!
      Demi

      • jess c February 20, 2015 at 8:14 am #

        Hi Demi

        I was diagnosed here in Manila where I am based. Since diagnosis I started to write down the food I take. I avoided bread and carbs except rice. I also kept away from dairies. I started to eat simple and tiny meals. No saucy ulam like kare-kare or mechado. I removed pork and beef and had mostly fish esp sardines and chicken.

        I think what is important is to take note of how your gut feels after taking whatever you put into your mouth. Write it down. Not every experience is the same for all. If you think some food make you feel bad then write it down in your “avoid list”.

        For me, I felt that the medicine wasn’t really working and might have actually been bad for me. What made me feel good was the fiber supplement called C-Lium Fibre and the probiotic named Normagut. I would have loved to try Bev’s Ultimate Flora 50B but I can’t find any here in Manila. I strongly feel it’s the probiotic that helped. The fiber supplement helped bulken up the poop. These 2 plus cautious eating made my symptoms disappear. Hopefully it stays that way forever.

        Take it easy and i’m confident things will turn out well for you and all of us who continually seek for better results.

        As a newbie I know you have many questions. Pls don’t hesitate to ask your kababayan. Btw, my brother in law who is a doctor based in Maine told me I am the only pinoy he knows to have been diagnosed with UC. So it looks like this is new to our race. My doctor here in makati med mentioned that there has been an increasing number of diagnosis but still not much.

        Well, whatever they say, I think we have good company in this site to help us improve our case.

        Ingat again

        • Elvie Richard July 4, 2015 at 1:37 am #

          Hi Demi and Jess,

          OMG I was just diagnosed with UC 4 days ago and I am Pinay! We live in a US military base in Tokyo, Japan so I was diagnosed here and their treatments are so conservative. I am still in a Tokyo hospital on steroid drip and Saline drip for my nutrition. I haven’t had anything to eat for 5 days! They won’t start giving me anything by mouth for another 2 days!!! Crazy! They said they wanted to reintroduce food back to my stomach slowly! I am so glad to find other Pinays here and would love all your tips! Right now I’m down to 5 BM’s in a 24-hr period but the cramps are still quite intense during BM and still bloody. I’ll take your advice on the diet and probiotics. I am on FB and would love to have a group going on there if you’re interested: Elvie Richard. Thank you!!!

  5. Caroline
    Caroline February 19, 2015 at 4:11 pm #

    Hi Demi!

    Sorry you get to join our club but I’m so glad it sounds like you are on the mend. This thing is such a journey of figuring out what works for you and it will be different than the magical concoction that works for everyone else. I think I have tried all the diets at this point but definitely focusing on whole foods/nothing processed is a great thing, probably for everyone! I have completed a couple of Whole 30s and love the simplicity of the plan – now I have been adding in some rice and small amounts of beans. So far so good – I feel better with the extra carbs and my tummy likes them too! :) Adding in resistant starch was a game changer for me, and you can do that easily on Whole 30 with green bananas, plantains, and cold potatoes. See what happens.

    I’m also on Apriso as well as Canasa – my ultimate goal until a few months ago was to be able to get off of those, and I started tapering off last year. Then Thanksgiving hit, and I got my 2nd big flare – it was very humbling and very scary. If I have to stay on those meds, I’m okay with it.

    Probiotics are fantastic – see what works for you. I am a big fan of VSL. :)

    Keep on feeling better!
    Caroline

  6. Demi R
    Demi February 19, 2015 at 9:04 pm #

    Dear Caroline,

    Thank you so much for sharing your story! It’s so encouraging to hear about Whole30 actually working for UC. I’ve been reading a lot about it but haven’t had the will to commit (not yet!). FODMAP is so restrictive but it’s doing me good so far. Can you remember what triggered your Thanksgiving flare-up? Glad you were able to get out of that!

    Take care,
    Demi

    • Caroline
      Caroline February 20, 2015 at 5:52 am #

      Hi Demi! Yes, FODMAP is tough….I was lucky that most of those items didn’t seem to be my issue but nightshades were a NIGHTMARE for me. I can handle them in small amounts now which is exciting! I think the Thanksgiving flare was a long time coming….I was bloated and had some blood for months before it hit but felt fine otherwise. I went through a lot of stress in October/November….that plus work travel and little sleep was a recipe for disaster for me. Good lesson in taking care of myself, even when times are tough! Keep us posted!

  7. Natalie February 20, 2015 at 12:56 am #

    Hi Demi!

    I wanted to be sure you saw my reply above. It is dated February 19th @ 3:59 pm. It got lost amongst all the other replies! :)

  8. Marc March 1, 2015 at 7:20 pm #

    Hello. Man your story sounded like mine.. I had symptoms an ignored them for the first couple times. I was diagnosed May 2013 and had colon removed Sep. 2014. It was long rough road but I am doing great now. Good luck. Hope you stay out of harms way..

  9. Nicar January 23, 2017 at 7:08 pm #

    Hi Demi!

    Hi also to Meliza and Jess!

    I’m Nicar and I have Crohn’s for 14 years. Wow im just so glad i found fellow filipinos who have IBD. I’m on infliximab for 6 years. So far so good.

    I really hope you will see this reply. It’s been 2 years since this thread is active. I’m really looking forward to talking to you. I will leave my email in case, you will read this…

    nicky_bart06@yahoo.com

    Thank you so much!

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