Ulcerative Colitis Tips


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Tyraa’s Story

tyraa

a recent picture of me!

Meet Tyraa:

I am 33…. I have had UC since 2003….I work as a Rehab Tech….and have two wonderful children….i am trying to find away to take back my life…my UC

Colitis Symptoms:

I am currently having a “flare up” for about 3 weeks now…with the usual bloody watery stools….blood clots…pain in abds…god awful smell that comes from it….each flare up for me is different…this time i have to make sure I have a trashcan in front of me…cause i feel like I’m going to get sick….my mouth only waters….but so far…i never have gotten sick yet….my stomach is tender…bloated from time to time….different parts of my muscles ache….I’m tired…cold more than normal now sometime i eat a lot…other times…i wont eat anything..

Colitis Story:

I don’t know if this happens to anyone else…but its weird…as long as I am “not in my home”…that urge to go does not bother me.  I mean yeah, I feel bloated…have the pain in my abs and stomach….I have awful cramping that stops me in my tracks for a good 5 to 10 seconds before it stops….and I am just uncomfortable sitting…standing..etc…I have the worst smelling gas….and I always get nervous when I’m getting ready to pass gas….cause i don’t want to have an accident.

So far while out…have been very blessed….and lucky.

On my way home from work for the day….

it’s like my body knows…

It starts making what I call the “bubbling loud noise”…once I pull in the yard…I am rushing to get to bathroom….after my first bloody stinky….watery stool….I try to get whatever i can done…cause I know time is not on my side….I am usually in the bathroom off and on all night….and waking up for good in the morning….i know i need to get up earlier than normal…cause i am going to be in the bathroon for at least 30 minutes…No one in my family has UC…so I don’t really have any inside info on how to get it under control…after all these years….i will do good for about 8 months…than i’m right back with having flare ups…

No two flare ups for me are the same…

Seems like pain…symptoms etc…gets worst…as I get older…but butt hurts more…my right leg goes numb now…from using the bathroom so much…i not getting as much sleep….the cramping…pain wakes me up…and i pretty much know…I need to start heading to the bathroom….i get so mad…cause the urge to go is so strong….and I’m running for my life to get to the bathroom…and it seems to be only a teaspoon full of stuff that comes out…along with air…the entire time….I am sitting there…i look down in disbelief….I’m up for like the 3rd time at night night for this…wow….but…its all part of my flare ups….

Where I’d like to be in 1 year:

In remission!!!!! again…but with more tips…recommendations…ideas….from other on how to control UC…or how to ease the pain from flare ups.

Colitis Medications:

I am Currenly on Asacol 400 mg 3 tablets 3 times daily….and have been on asacol since 2003…over the years my doctor have played around with the dose…but found this one to work better….as a matter of fact..it works sooo good that i do tend to back away from it for a while…the longest I have been off was 8 months without any flare ups…but within the 9th month…the flare ups returned…so i had to get back on the Ascol…as well add Prednisone…
Currently taking Prednisone…does not appear to be helping at all…i have also added probiotics n multivitamin….will just be glad when it is over,,,,,

written by Tyraa

submitted in the colitis venting area




16 Responses to Tyraa’s Story

  1. julie November 8, 2012 at 5:46 am #

    Hi Tyraa,
    I too am currently in flare and have been for 4 months steroids not responding not even iv form. Been hospilalised for 12 days total and gotten worse not better. They wanted to remove my colon this time and i felt that sick i was resdy for it, although i was petrified i just wanted to feel normal, at the eleventh hour they decided to try anfliximab after some overnight thought from me, the drugs wear you down after ten years. Luckily so far so good symptoms have eased but not fuly yet. I have my 2nd infusion next week fingers crossed it continues to improve. The thing is this disease has a mind of it’s own and holds no prisoners, we have to be our own advocate and learn what works and what does not. I know eventually I will have the op cos 25cm of my colon is bad and it’s the tail end which is not good. I wish you all the best do you take probiotic acidipholus to help yr gut bacteria and L glutamine for yr immunity x

    • Tyraa
      Tyraa November 12, 2012 at 3:52 pm #

      Hello julie….I pray that things work out with you…i have never had a flare up bad enough to where i ever neede to go to the hospital or stay there…but with this…i think i may be on my way…i discontinued my probiotics…it seemed to make my flare ups even worst…after about 2 days of being off….i was back to havig a “regular flare up”…if there is suck a thing…I hate flare ups with a passion…I am the only one in my family to get them…so they dont understand why i go to the bathroom so much…or why i cant eat….thank you sooo much…for sharing your story with me…keep me posted….on your outcome!!!!!

  2. Richele
    Richele November 8, 2012 at 8:25 am #

    Hello Tyraa!
    I’m so sorry you are in a flare right now. I feel for you. It seems like we are all so closely related with our terrible symptoms! I can relate to everything you said. My stomach knows when we are close to home…. it seems like more often than not I am slamming the car into park and leaping out to run for the bathroom, fumbling with keys and bursting through the front door. The urgency sucks. My mouth waters too! I’ve never heard anyone else mention that, I always thought it was just me. The aches, the tablespoon of diarrhea, getting up to go all night long, not sleeping on the left side, the cramping, bleeding, hell… all of it sucks!
    I’ve been taking probiotics on and off as well and they seem to help a bit. My dr is talking about 6MP, which terrifies me. I haven’t responded to asacol and have developed an allergy to Prednisone. I really don’t want to take meds because I feel in my heart that I can get this under control with diet, but getting there can sometimes be difficult, right?? UGH! I am so afraid that one day I am going to blow it and need emergency surgery or something like that, at least that’s what my dr is telling me. Do they try to use scare tactics? Or is medication and surgery the best thing? Sometimes I just don’t know.
    Have you been tested for C-Dif? The horrible smell of C-dif bacteria is very recognizable. I’ve had it before and it’s the worst!
    Have you tried changing your diet? Yoga? I KNOW there is a natural way to cure or at least keep this disease under control!
    Best of luck and good health to you!
    Richele

    • Beth Yeatts November 25, 2012 at 6:43 pm #

      Diet is /has been my best defense so far in my journey to figure out what is wrong with me why is it so hard for the Doctors to give me a diagnosis when I see all of my symptoms pointing to same?
      I am ususlly aware of what my body is going to do and can tell when a hospital stay is fast approaching. The pain is unimaginable, the muscle cramps arms and hands but the last two hospital stays occurred within hours of me waking up with the bloody stools and throwing up. Once I’m at that point it just has to run its course and nothing, Nothing will stop it. My blood pressure, normally low, skyrockets out of control and I get very afraid of a stroke.
      I have posted with request for follow up on comments and wish you the best in coping. It is very stressful living with the unknown of when is it going to happen again.
      With Love and Peace
      Beth

  3. Jennifer November 8, 2012 at 8:32 am #

    Hi Tyraa,

    I too am in a flare. Been in this once since about July. After 2 hospital stays (one for 3 days and one for 12 days) I am finally down to 10mg of prednisone. I saw a naturopath dr back in September and I think his remedy is helpful. I take probiotics, enzymes, intestinal repair and aloe vera juice. All if these plus I removed refined sugars, dairy, and gluten from my diet. I have been feeling much better.

    I hope you start feeling better!!!!

    Jen

  4. StormCat42 November 8, 2012 at 9:06 am #

    Hello all!

    My story’s a little different, but I’m sympathizing all the way… My urges come while standing or shopping… Weird, I know, but let me explain… If I stand for a period of time, say more than 5 minutes, I can feel the urge beginning… (And let me tell you that the idea of standing in line to vote scared the bejeesus out of me!) And if I don’t start looking for a loo quickly, that standing is going to turn into a “run for the loo at full speed” event… (I’ve gotten so good at it, I’d like to start an Olympic event around it!) But it appears that over the last 10 years I’ve developed a sort of phobia for shopping… NO, not “oh my gosh I have GOT to go shopping for those new shoes” shopping… I’m talking food shopping…Necessity shopping… I loathe it… For instance, this past Saturday, I had to stop at 5 different shops for food, health items, etc… I had an attack as all 5 locations… Once I leave the store, I’m fine…

    To Richele, I’m currently on 6MP and Prednisone and have to say it seems to be working very well… They’re weaning me down off the pred slowly and it’s been so far so good… I’ve not had any side affects from the 6MP, although at one point I thought I was losing my hair… Thankfully I didn’t, whew! LOL I’m also taking probiotics and have two doses a day of Kefir… That seems to have made a real difference for me as well…

    Tyraa, Hang in there and know you’re not alone! When you’re up at night, at least a dozen of us are up with you! We should start a phone tree! LOL You’re a strong Lady and I know you’ll make it through this with your personality intact!! Thanks for sharing your story!!

    StormCat

    • Tyraa
      Tyraa November 12, 2012 at 4:13 pm #

      Thanks you for the kind word….I use my late night bathroom times to catch up on my “Words with Friends” games…I have a lot of non UCers…that hate me…because their phone almarms them….that its their move…I love it!!!!!!! Hope things work out for you as well…keep me posted on your outcome!!!!!!

  5. Christine November 8, 2012 at 5:27 pm #

    My body knows when I’m close to home, too. My UC doesn’t behave as well as your’s does in public, but it is most definitely worse at home. As I’m driving, the closer I get to home, the closer I get to having an accident. The urgency is unbelievable. I’m currently in the midst of my worst flare ever (Ive had UC for 4 yrs), so I can really feel your pain. And I thought it was just me whose body seemed to have psychic abilities! You’re not alone, and I’d love to know why that happens. Sometimes I think it’s the anxiety and anticipation of getting closer to home, but nothing I do to calm myself down has any effect. I hope you start to feel better SOON!

    • Tyraa
      Tyraa November 12, 2012 at 4:08 pm #

      Thank you Christine….I hope I feel better soon as well….like you said…its like your bodys knows…when its almost home…Gods knows once i reach the bathroom…i am crying out for god to let me get my bottoms off with no accidents…lol…I have had a lot of miss calls…but in the end made it….lol…I hate flare ups..lol…thank you for sharing your story…keep me posted with your outcome!!!!!!1

  6. Kerrie Byrne November 9, 2012 at 2:25 am #

    Hi.god it sounds like your going through a really rough time.iv just finally eased off my latest flare up one of many.lasted about a month this time.it started when I was on the way back from Rome I made the fatel mistake of sayin the day before that I had been good for while then bamm it came and bit me in the arse.iv cut out wine and spicy food I don’t know if it causes it but you do anything.been drinking peppermint tea regularly.im on asacol 800mg 3twice a day and my doctor said take it same time every day without fail otherwise it won’t work because it’s slow releasing.i also find that I am able to control myself more when I’m at work than when I’m at home or shopping.hope things ease up.

    • Tyraa
      Tyraa November 12, 2012 at 4:00 pm #

      Thank you sooo much for the advice Kerrie…I will try all of those suggestings….I am to the point..i really need to get some relief..uggggggghhhhh….thank you again…will pick up the tea…on my way home from work:-)

  7. Lisa OH
    Lisa Kapp November 9, 2012 at 7:21 am #

    Ugh! I have so been there. Unfortunately, my colon became toxic (no drugs worked at all) and had to come out before I had a chance to try non-medical options. If I were in your shoes, I’d try the SCD diet religiously and a STRONG probiotic – VSL#3 or something with 50 billion+ strains. Hang in there. I hope you feel better soon!!

    • Tyraa
      Tyraa November 12, 2012 at 3:57 pm #

      Thank you soooo much for the advice…I go back to my GI doc next Tuesday Nov 20, 2012…I will run all of the suggestings by him…God knows it cant hurt…thank you again…..

  8. Richele
    Richele November 9, 2012 at 8:13 am #

    It’s definitely psychosomatic at times! Stress triggers flares. Anxiety triggers accidents. etc…

    • Tyraa
      Tyraa November 12, 2012 at 3:55 pm #

      Hello Richele…I agree as well…that stress plays a big part…..

  9. Tyraa
    Tyraa November 12, 2012 at 3:47 pm #

    Thank you Jen….I am praying for this is over soon as well…I am glad you were able to find something that works for you….hopefully…when i can finally eat a full meal…lol…i may make changes as well….keep me posted on your outcome….

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