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My Colitis Journey and Chronic Disease Struggle

Meet Laura:

I am a 31 year old ER nurse from Ontario and I was diagnosed with Ulcerative Colitis 1 year ago. I am struggling with this switch over from nurse to patient and coping with a chronic disease but I am getting through it one day at a time!

Some more about me:

I love to be active! Running, hiking, traveling, enjoying the great outdoors! I am a bit of a control freak..so this ulcerative colitis thing has been difficult to say the least haha

Colitis Symptoms:

Just started prednisone and my symptoms have resolved after 2 days, hooray!

Colitis Story:

So I was previously healthy, active and loving life when I noticed some blood in my stools early last year. I wasn’t too concerned and thought this could wait until I saw my GP that summer for my physical. I was sent for blood work which led to a colonoscopy that August which I was extremely nervous for! Once those drugs went in though, I didn’t have a care in the world! I was diagnosed with left sided UC and started on Pentasa with great results. I was to wean off this after a couple of months, which I did, and my bloody stools came back along with some new urgency and cramping that I didn’t have before. And so it began…I believe I was in denial when my symptoms came back worse than before because it was another 5 months of attempting to up my Pentasa dose (with no results) before I saw my GI doc again. It was a miserable winter and when I finally saw him he put me on prednisone. Knowing all the nasty side effects of this dru g and seeing people on prednisone at my job, frightened me to say the least. I stared the prednisone anyways and experience dizziness and nasty headaches that would wake me up in the middle of the night and bring me to tears! It worked though! I was in a remission from June to October when UC reared it’s ugly head again! We have just had an IBD clinic open in our city with some great GI docs and I phoned my GP for a referral right away when my symptoms returned. I now have a great team overseeing my care and they have put me on another course of prednisone and increased my Pentasa. I am 2 days of prednisone and my symptoms have resolved! (yeah)! Now to stay positive and hope for the best! I am scheduled for another colonoscopy in January and have a bone density test set up, since this is my 2nd course of steroids this year.

I could never have anticipated the emotional toll this ride would take on me, and how extremely isolated and lonely this disease would make me feel at times. I think a lot about my future and the uncertainty weighs on me. My parents and boyfriend are my supports as I experience my ups and downs.

I am so happy to have found this outlet to share my story and to remind myself to stay positive, healthy and most importantly remind myself that I am not alone. Thank you Adam for this great site!

Medications/Treatments:

Pentasa worked great initially, but now the addition of Prednisone was necessary, which is a great and terrible drug.

I have also tried making turmeric tea and tried charcoal a while back which I didn’t see any improvements with.

written by Laura

submitted in the colitis venting area





9 Responses to “My Colitis Journey and Chronic Disease Struggle”

  1. Jen From UK
    JenDecember 5, 2012 at 10:55 pm #

    So glad you have a great team supporting you, it’s tough this newly diagnosed business! Really hope you find something that helps- I’m on pred and mesalazine and been flaring since may, just started lglutamine and probiotics on advice from this site… Certainly some encouraging results * she whispers with fingers and toes crossed!

    I’m starting scd soon as I’ve not found meds to help that much. Good luck! X

  2. Mylene
    MylèneDecember 6, 2012 at 10:48 am #

    Hi Laura !!

    I live not to far away from you !! I am near Montreal Canada and my son lives in Ontario. Where from Ontario are you from ? Nice to hear from someone closeby ;) I have had UC since 2007 and tried every drug under the sun and am now tapering off the nasty Prednisone and than Ill taper off the injection of simponi and hoping in the next year to be off all meds with the SCD which I have been on for 3 months now with the right supplements keeping a journal etc etc !! Anything to keep my colon cuz ya I am almost at the point of surgery ! I have seen mega improvements since I invested in this journey/diet. It is contested from my GI but he at least agrees that it cant hurt and knows my goal to be off all meds eventually. I went to a symposium recently forganized rom the Crohn and colitis foundation and we shall have soon an IBD clinic just like you ! That will be very helpful ! I sometimes feel alone in my quest so that is why I am grateful for these sites that provide info love and support. But it is also nice to know that there is also people nearby that go through the same thing ! I hope you get better soon ! Prednisone is not a good drug to be on long term and the GI that talked at the conference said that they are trying to eliminate or use only temporary that medication as it causes so much other damage !! If you need anything even if its just venting I am here !!

    Sending you positives vibes !!
    Mylène Savaria

  3. Lisa OH
    Lisa KappDecember 6, 2012 at 2:42 pm #

    Hi Laura. UC is yucky! I am glad that your body is responding to the medications and you are finding relief. My body never responded to ANY of the crazy drugs, so my colon became toxic & had to come out. Waiting on the last of 3-step jpouch surgery. I do remember that diet has something to do with severity of symptoms, and probiotics are really helpful. Thinking of you, hoping that your UC symptoms stay away for a long, long time:)

    Lisa

  4. bevDecember 6, 2012 at 4:01 pm #

    have you tried probiotics at all? I tajke a 50 billion strain one every morning on an empty stomach, along with fermented L- glutamine powder mixed in juice at lunch and I am in compkete remission….no meds at all!

    Give the probiotics a try….they work if you are diligent in taking them every day…forever! They took away the pain, the urgency, the loose stool…and every other symptom of my pancolitis (except the bleeding) that I have had for about 15 years. Prior to taking them, I had been on asacol all of that time, with various enemas thrown in here and there when I was flaring. They all failed to work…

    The L-glutamine heals the mucosa of the colon, so, no more bleeding either! Trust me…try it for yourself!

    Cheers:)

  5. Braj
    BrajabasiDecember 6, 2012 at 11:34 pm #

    Hey Bev,
    Did you consult your doctor for how to use L-glitamine powder. What is the dosage you are taking.
    Thanks,
    Braj

  6. bevDecember 7, 2012 at 7:23 am #

    Hi Brajabasi…

    No, not the doctor, the clerk at the vitamin store recommended the L-glutamine to stop the bleeding that I could not seem to get rid of. My doctor would never advocate a natural procuct….I wish! I am only taking one scoop per day, in some juice. The scoop is provided inside the tub of L-glutamine. You can take from one scoop to eight scoops per day, it says on the tub.

    Cheers:)

  7. LauraDecember 7, 2012 at 12:02 pm #

    Jen, Mylene, Lisa and Bev, thank you so much for the replies, advice and support! I am very leary of taking anything more than this prednisone to kick me into remission..so I am eager to try some probiotics and other ‘natural’ remedies! I don’t know too much about the different probiotics, so any advice on what has worked or hasn’t worked for you would be appreciated..I guess I have a little research to do! Mylene, nice to hear from a fellow Canuck! I’m from London, ON. Great to hear that you will be soon getting an IBD clinic too! They seem to be able to really look at the big picture and there is lots of research going on as well. Wishing you guys all the best!

    …I just booked a trip to Peru yesterday to climb the Inca trail to Macchu Pichu in May..so theres my motivation!!

  8. bevDecember 7, 2012 at 12:23 pm #

    Laura!

    I’m a canuck too! Born and raised in Toronto! Now, I’m living in beautiful sunny Penticton, British Columbia.

    Probiotics have quite literally SAVED me from taking any nore UC meds. I am not sure why they have worked so well for me, because I have moderate to severe pancolitis (whole colon). Maybe it’s the one I’m taking…maybe it’s when I take it? I can’t say for sure…but I do know that I could not be happier!! All of the meds made me so sick…my body dsays NO to them, it seems. When the doctor recommended prednisone and remicade…that’s when I went off the rails. No way, I thought…no way. I did alot of research on these meds and I just could not agree. Thank goodness I found this site, and went to my local vitamin store. It was there that an angel of a clerk recommended a good probiotic…for people who REALLY need it…ULTIMATE FLORA CRITICAL CARE by RENEWLIFE…I can’t say enough about it, and I should be making money from that company, because I’ve sure talked about them enough!

    Anyway, I take my one capsule first thing upon waking. Empty stomach. Then, I exercise…so I don’t put anything in my stomach except water, for about an hour after I take it. I must stress that the probiotic took every symptom away….except for a bit of bleeding. That bleeding was a tenacious p***k! Anyway, back to the vitamin/health store, where the same gal recommended fermented L-glutamine powder. She told me it heals the mucosa of the colon. Within two days, the blood was GONE. I was floored! Even the meds never did that! I take that before lunch mixed in some cranberry juice, or whatever juice I have kicking around. After a month of feeling so good, I went off the asacol that I had been on for more than 13 years straight! I actually felt even better after I stopped taking it, too. It was making me very nauseated, losing my hair, acne, tiredness, bloated…all things the doctor attributed to the UC itself. Bull****!

    The only other thing I take now is vitamin D, right after I eat fat…like lunchtime…because vitamin D is fat soluable, so much more easily absorbed with it.

    Cheers, and happy holidays my fellow Canadian!!

  9. LauraDecember 8, 2012 at 7:30 am #

    Hi Bev, your story is amazing! I am definitely going to give the probiotics a go..thank you so much for all of your advice. I worked out in New Westminister and Abbotsford for a while a couple years back. BC is beautiful! Thanks again, and Happy holidays to you too!

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