Ulcerative Colitis Tips


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New to Colitis – I Hate Public Bathrooms

Introduction:

24 Female, Diagnosed March 2013 after 8 months of horrible symptoms. First and last colonoscopy March 2013 . I am learning to deal and cope but would love to know more natural ways to control or minimize my symptoms.

Some more about me:

I am a hard working caring person . Very family and friend oriented. I’m pretty much an open book with those I’m close too so it’s no secret I have UC. Especially after excusing yourself to the bathroom 5 times in 1hr gets pretty obvious.

My Symptoms of Colitis:

Frequent bathroom trips, bloating, cramping, mucus, blood, diarrhea, fatigue, dehydration.

New to Colitis – I Hate Public Bathrooms

My story did start to long ago but I feel like I’ve had it forever. Began getting symptoms early last year lots of blood and cramping, unbelievable cramping mostly nights and mornings. I didn’t want to eat because I didn’t want to go to the bathroom anymore , I didn’t want to go out because I was afraid to embarrass myself . One thing to note is I hate public bathrooms. Now I have no choice and I can make friends with just about any toilet. When mucus and tissue with pools of blood (sorry for being graphic) started to come out I made a GI appointment . With my HMO it took me two months to finally get the colonoscopy to which I was diagnosed with ulcerative colitis. I was put on Asacol after a month I started felling better so I stopped taking it .

Just a month ago it came back with a vengeance . I have missed work and left early just because I can’t sit in pain and keep getting up . Luckily I guess, my supervisor has similar issues and is very understanding. It’s summer time and I’m constantly dehydrated but I refuse to stay in doors and miss my summer. I’m surrounded by amazing friends and family so I just decided to tell everyone and get it over with. It’s made things easier people don’t have to keep asking what’s wrong , now they just know and ask me if I need anything.

I am on dezicol now and been feeling a little better. What I’m afraid of is dating again . I’m newly unattached and my previous boyfriend was very understanding. Now I’m just worried if I go on a date in the future where’s the bathroom what if I’m in there too long what will that person think ? As much as I’m learning not to be embarrassed about my UC I still do worry . I also worry about my medication not being strong enough and taking steroids or having a part of my colon removed or even cancer. I don’t want to be on medication forever I want to know if there is anything natural I can do ? I try to eat healthier stay away from foods that upset me and exercise moderately . I want to try juicing I’ve been researching online but want to know if anyone has done it , is it more harmful? How did it take to your body ? What helps you that might help me ? I’m open to anything I just want to make my life easier with this.

I truly am inspired by other UCer posts and I’m comforted that I’m not alone. I never heard of UC before I was diagnosed and thought no one would know how I feel . I’m happy to have found this site . Hope everyone put there stays positive and is doing well !

written by Nik

submitted in the colitis venting area




15 Responses to New to Colitis – I Hate Public Bathrooms

  1. Adam
    Adam August 12, 2013 at 5:54 am #

    Dear Nik,

    Thank you for sharing your story, and I want to send you a HUGE congrats for telling your friends what’s up with your UC. Like you, I found life to be much easier once the big secret was out in the open:)

    As for food and diet, I’ve found some great success with applying the principles of the SCD diet.

    As for juicing, I’ve never tried that,

    Adam

    • Nik August 12, 2013 at 6:14 pm #

      Thanks Adam , you have an amazing site . I’m so glad I found it :) !

      • Adam
        Adam August 12, 2013 at 7:00 pm #

        Thank you and thanks as well for sharing what’s up and being a part of the community here:)

  2. John August 12, 2013 at 8:24 am #

    Nik,

    From my experience (7 years roughly) if you find a maintenance drug that works and keeps UC under control, it’s best to keep it going, stopping Asacol or other mesalazine drugs can trigger another flare…I should know.

    Steroids are for getting you out of symptoms and while they can unpleasant for some, they are worth trying if you are in a bad flare.

    Completely get the dating and embarrassment feeling. I’m in a new relationship and after 6 months together, I got the worst flare I’ve ever had….and living in a small flat with your new partner can be difficult for hiding the issues you have. But as with most women, she knew something was wrong and just wanted to help. Opening up to people is a huge relief and you’d be surprised at the support they give you.

    Really hope you find a natural solution and changes to diet can help some people. I’ve always eaten and drank whatever I wanted due to taking Mezavant XL everyday….means no worries about what you eat which is nice to help lead a normal life.

    • Nik August 12, 2013 at 6:13 pm #

      Hi John

      Thank you for your comment . I noticed a lot on the site that when some people stop it just gets worse . I will definitely keep up my medication this time around .

  3. Barb August 12, 2013 at 9:04 am #

    Hi Nik,

    As for juicing I am afraid to try that b/c I can not eat fruit or salads….any kind of roughage foods are a no no for me …..I have had UC for 15 years now and I take a probiotic in the morning (empty stomach) along with my meds and supplements then around 3 I take Lglutimine capsule. All this seems to be helping.

    I have also just started Visalus which is a powder that you sprinkle in with soy milk and you make it a milkshake they are loaded with protein and probiotics which is working wonders. I am hoping to lower my dose of ascal next week when I come back from vacation =)

    • Nik August 12, 2013 at 6:10 pm #

      Hi Barb,,

      Thank you for your comment I will have to look into Visalus . I’m looking to try anything new and it’s a plus that its a probiotic .

  4. lana August 12, 2013 at 4:50 pm #

    Hi Nik,
    I was also diagnosed with UC in march this year and it is hard trying to get my head around it. i refused to take anything apart from Salofalk suppositories, they seem to help a little. i am also preparing myself to do FMT in a few months. what helped me with frequent trips to the bathroom is slippery elm, L glutamine, probiotic and freshly squeezed carrot, lemon and spinach juice in the morning on empty stomach and navy beans for breakfast. i managed to get rid of diarrhea, blood and urgency and no suppositories for 2 weeks until i started antibiotic treatment for h pylori, which made me flare again. i am also gluten, sugar, soy and yeast free i don’t know if that helps but i thought it wouldn’t do me any harm.

  5. Nik August 12, 2013 at 6:11 pm #

    Hi Iana that gives me a lot to try and I’m happy for it . Thank you!

  6. Sharon August 12, 2013 at 7:13 pm #

    When you are new to UC, you feel like today is indicative of how every day will be from now on. That is not true. I have had UC for over 23 years. I have gone for long periods of time in complete remission where I have really not even thought about UC for a few years. It may be wise to focus on reducing your stress, figuring out how to manage your symptoms, etc before you jump back into dating. As for juicing, it removes the fiber so I would think it would be a great option to give your gut a break. I have considered it many times but havent actually tried it. I have also found several small meals a day is better than a few larger ones. if you arent already taking an iron supplement, I would start one right away. I am also a huge fan of probiotics which many people on this website swear by. Be careful not to make too many changes at once so that you can see what helps and what makes things worse. For me, I have a list of foods I know I can eat when I am flaring. I can give my husband the list or stock up on easy options that provide nutrients without too much pain. One of my favorites is a butternut squash soufflee by gardenlites. I keep it in my freezer along with frozen bananas for protein shakes.

    There are many ideas on this site. Take it slow and see what works for you.

    Sharon

    • Nik August 13, 2013 at 11:01 am #

      Hi Sharon

      Thank you for your advice . I think stress has played a large role in my flare up I try my best to mellow out but it’s so hard . I’m definitely still learning what is good n bad for me. I have a happy sad face journal . My bad foods get a sad face and my ok foods get a happy face . Works for me . Thanks again :)

  7. UC Family Boy
    UC family boy August 13, 2013 at 1:18 am #

    We should all write a book together on using public bathrooms!!!LOL

  8. Stephanie August 13, 2013 at 5:27 am #

    Do all the fad diets, listen to your doctors and have faith, I have 3 family members who medication worked on. 2 who had one flare and have never had it come back.

    I had mesazaline powders and suppository and steroids. I tried azathiprine. I had these 16 hour drips in hospital that were supposed to stop the immune system. I tried everything but I was losing blood and screaming in agony no doctors or nurses could prescribe me anything to stop the pain in case it split my bowel. I was told within a day what a bag was by my stoma nurse and reassured she would be there to get me through the medical side of coping with a stoma. I was then operated on the next day. its taken me a year but coming down with the disease at 23 and now 25 and feeling so healthy!

  9. Gemma August 14, 2013 at 3:33 am #

    Using the bathroom at work is the worst. We have 4 tiny cubicles all jammed together, when I was in a bad flare I would sit and wait till everyone had left then went for it, but sometimes you can’t wait/or the toilets are never empty and it is so demoralising when you have to walk out. I would sometimes spend ages in the toilet waiting for everyone to leave. They then installed one of these super fast air dryers which is so noisy so I used to time my “releases” with the noise. This was all great but the smell aspect is still embarassing. Then I discovered the disabled toilet which is fine but it’s right on a main corridor and you can hear everything through the door and there’s a big grid thing on the bottom of the door which you can see people’s legs walking past! So I always put the lights out and one day, sitting in the dark I used an extended umbrella to trigger the hand dryer then went for it! It’s actually quite funny looking back at it all, you’ve got to laugh.

  10. Nik August 14, 2013 at 7:31 pm #

    Hi Gemma

    Your comment was my day today lol . Having a sense of humor is always a good thing :)

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