Ulcerative Colitis Tips


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Staying Hopeful

I was diagnosed in December of 2011 at the age of 33. I’ be been living with UC for 4 years, but I suspect I had it throughout my 20s and 30s and never had a diagnoses to confirm it.

Alexia W fs

My most recent scope was a sigmoidoscopy in December 2015 due to a recent flare.

I usually flare up in the Fall months. My most recent flare was after a trip to Jamaica in Novemember 2015 where I had contracted a stomach bug. My husband did as well. He recovered in 24 hours and I ended up in a flare.

OK OK…Some Good Background info on Alexia:

I am a 37 year old woman, working as a social worker in a local hospital. I work primarily with the elderly, homeless, addicts, and people in crisis. I enjoy my job and love helping others.

I have been married to my husband for 8 years and with him for the last 15 years. He has been by my side through every twist and turn UC has thrown at me. During my 20s and early 30s, I often coal wined of IBS symptoms, and just became a normal part of our lives, I often didn’t feel well or had stomach a upset or bowel issues. We just tried to work around it.

It wasn’t until I was diagnosed that we really had something to research and start figuring out.

We are huge animal lovers and have 2 dogs and recently lost 1 back in November. The ones we have left are geriatric and have their own issues. Sometimes in the mornings it’s a challenge to not only remember my medication and supplements but also their medications.!;)

We also love to travel, especially skiing and Las Vegas! These are yearly trips that are a must for us every year.

I am also lucky to have very supportive immediate family and I laws that have been more than acommodating for my diet restrictions at family dinners.

Symptoms:

I am currently in remission (I hope!) after my flare this past November.

I have had some mild blood in normal bowel movements a couple of days ago while on my current meds and stepping down my prednisone. I was started in 40 mg 8 weeks ago stepping down 5mg every week until this week-currently at 25 mg. my GP suggested staying on25 mg for an extra few days before stepping down to 20mg. Unfortunately, my GI specialist is away the entire month of January, so I was unable to contact him.

I am also on Salufalk tablets and suppositories daily.

When I started my flare in November, I had urgency, blood/mucus in my stool, but never had diarrhea. The most I would go to the washroom in a day would be 4x.

Staying Hopeful

My most pressing concern is weaning off of prednisone this time. I have been on presdnisone once before for a flare up in 2014 that showed a progression of my disease after my scope. I weaned off the prednisone with no problems that time.

I do worry about the time when Salufalk will no longer work for me and what the next class of medications will be.

I have a great GI Doctor who sees me in the office within days of calling with a concern. He usually books me in for a scope within the week as wel, if he can.

I have been fairly active and currently am on a ski trip. In the summer I usually run at least a few times a week and was able to run 5km at a time up until Novemeber of 2015.

My medications and disease have impacted my life in that I am mindful of what I eat and try to follow the SCD as closely has possible and keep track of food that bothers me. I know that I could do better with my diet ( can’t we all!) and I see this as a journey I will continue on for the rest of my life.

I have found this website very encouraging and appreciate all of Adam’s work in creating it. I also find the stories of other people going through the exact same thing comforting. It’s nice to be reminded when I am having a low momement and frustrated that I am not alone in this.

I have used mediation and positive self talk, as well as exercise to help keep me balanced. Mental and spiritual health is just as important as physical health for anyone, but I think especially so for those dealing with a chonic illness.

It is easy to get depressed and frustrated when I am not well, but I try to remember, that this momement will pass, tomorrow is a new day, and to focus on the positive moments.

Medications/supplements:

Salufalk Tablets 500mg x4 in the AM and PM
Salufalk 1000mg suppository at bedtime.
Prednisone 25mg for 1 more day, the stepping down to 20mg, then 15mg, 10, 5 every week.
Curcumin 300mg 4x per day. (Just started this 4 days ago)
Calcium 500mg per day
Vitamin D 2000ug per day

I have tried Intestinenew in the past, and believe it helped keep me in remission for most of last year.
I have stayed away from it for now, simply because I am on so much medications and supplements at the moment.

written by Alexia







Salufalk

12 Responses to Staying Hopeful

  1. Adam
    Adam January 24, 2016 at 3:27 pm #

    Hi Alexia,

    Thank you so much for sharing your story with us, and I hope the ski trip was a great one!!
    And congrats for bringing the symptoms under control, and an even bigger congrats to you for finding a GI you are comfortable and happy with, that for sure is super important for our tribe of folks since we end up seeing GI docs for the forseable future no matter how well things go. So good job all around, and wishing you the best on the prednisone taper and getting back to a more steady time with managing the UC. Your positive attitude will take you places that most medications can only dream of, so in combination you should be living the dream life this year::)) I think you will.

    And thanks again for sharing all you’re up to. (A nice long meditation followed by a pass out session on the couch is coming up for me:)

    Best to you and your fam,

    Adam

  2. Alexia W
    Aleixa February 5, 2016 at 11:29 am #

    Hello, this is Alexia again. Just wanted to ask how people successfully weaned off prednisone?
    What have you tried? Supplements/diet?

    I am down to 10 mg from 15mg as of Tuesday Feb. 2nd (stepping down 5mg every 7 days with a starting dose of 40mg back in December.

    I noticed mild symptoms start when I stepped down from 25mg to 20mg which lasted a couple of days and then I was fine. Now I have stated again with mild symptoms with light blood in the stool for the last 3 days. No other issues, no urgency, one normal bowel movement a day, no diarrhea, no mucus.

    I know in the grand scheme of things I am very lucky to only have the above symptoms, but it does worry me nonetheless.

    I have gone back to the SCD intro diet for a couple of days and just added eggs today. I was going to have ground beef and squash for supper, but maybe I should hold off? I feel a bit lost and frustrated!

    I am still on Salufalk Tablets and suppositories, have increased my Curcumin doses to 2000mg per day ( split up between meals), calcium/magnesium 600mg per day, and Vitamin D 2000ug per day.

    I am not your typical UCer in that I have never had diarrhea with this disease and at my worst I dealt with mucus, blood, and formed bms. The most I ever ran to the bathroom due to urgency was around 4-5 per day. I have always been more at risk of constipation and I eat a fairly high fibre diet when I am well.

    Thanks in advance to any advice people may have.

  3. Alexia W
    Alexia March 6, 2016 at 2:28 pm #

    As of today, March 6th, I find myself feeling defeated. I have been put on 15 mg of prednisone with a slow taper, but after 6 days I’ve have had a couple of days of bleeding. I don’t think it will hold me this time and I’ve become steroid dependent.

    I’m doing the SCD intro diet for the 6th time since I’ve started tapering down on prednisone from 20 mg back in mid January. I don’t know what else I can do to help myself.

    Curicumin supplements have made me feel worse. So I have stopped.
    I’ve been making my own ginger tea which tastes great, but I don’t know how much it actually helps.

    I’m taking a scoop of the intestinew by Renew Life first thing in the morning before my other medications on an empty stomach. For those that are interested, here are the ingredients:
    L-Glutamine5000mg
    N-Acetylglucosamine200mg
    Gamma-Oryzanol (Oryza sativa – rice bran oil)125mg
    Cranesbill Root (Geranium maculatum)18.75mg
    Ginger Root (Zingiber officinale)18.75mg
    Marigold Flower (Calendula officinalis)18.75mg
    Marshmallow Root (Althaea officinalis)18.75mg

    It comes in powder and in capsule form.

    My next step for medications are biologics, which I want to avoid.

    I’m still on Salofalk tablets and suppositories.

    Thank you to all for your comments and your own personal stories. This website is such a great community of people; it’s nice to know we are never alone when dealing with UC symptoms and in the ugly middle of a flare up.

    • libby March 6, 2016 at 5:31 pm #

      hi Alexia,

      I want to apologize in advance for the typos I’m replying from my iPad. you didn’t mention if you’re taking a probiotic. i think the probiotic has helped me a lot. I started taking the renew life probiotic after I read Bev post on here back in 2013 when I was flaring. it helped a lot. I started flaring last yr around February and it only got worse until mid sept I started tweaking the dosage on some of my meds over the counter. I also took prednisone for 2 months, it didn’t really help so I still weaned off. I changed name brands in the probiotics, also went up on the dosage. around November/December I went back to renew life and up on dosage. just the end of February I went up to 100 billion and I have noticed a very good improvement! I also take Curamin (turmeric and boswelia) which I think helps as well. I tweaked dosages on that as well. I also take sulfasalazine and Canasa suppositories. it’s very scary and frustrating when in a flare, but I’ve learned now not to be afraid to tweak the dosages.

      wishing you a fast healing,
      libby

  4. Alexia W
    Alexia March 6, 2016 at 8:35 pm #

    Thank you Libby for your response. I have yet to try a probiotic. I tried one dose (Renew Life 80 billion) and had bad cramps after that. I never tried it again. That was a year and a half ago.

    I’m curious if you had any problems taking a probiotic while on prednisone? I keep reading it’s not recommended ( at least on the probiotic labels).

    I would be willing to try the Theracurcumin again, but not sure when would be the best time to take it. With a meal or without. Or space it out between my medications.

    Thanks again for your insight and input. I truly appreciate it.

  5. libby March 7, 2016 at 5:01 am #

    i took the probiotic while on steroids, i take it everyday and dont miss a dose. ive had cramping before but i dont think it was related to the probiotic. the curamin i usually take in the morning with out food. on the probiotic i think i started with the 50 billion and that helped me get into remission.

  6. Alexia W
    Alexia March 8, 2016 at 7:17 pm #

    Thanks again for your suggestions Libby. I’ll be picking up some probiotics tomorrow and giving it try.

    I’m on day two of the SCD intro diet. Some improvement from yesterday, but I am far from out of the woods.

  7. Alexia W
    Alexia March 10, 2016 at 10:09 pm #

    For anyone following this thread…I had a sigmoidoscopy today after caling my GI Doctor yesterday. I had an especially bad day with blood and cramping.

    So far, no changes except to increase the prednisone again to 20mg and slow taper 2.5 mg every 3 weeks. I have a follow up appointment in a month in the office.

    Overall, my doctor didn’t think it looked as bad as he or I had feared. And he would like to get me off the steroids sooner rather than later.

    I have kept up with all my other meds and started taking a probiotic in smaller doses and will increase over time. I continue to drink the ginger tea.

    I am also on day 4 of the SCD diet and I’ll be gradually introducing other foods.
    Right now I’ve been eating eggs, ground beef, carrots ( boiled), squash ( puréed), and chicken soup with homemade broth. These have been my safe foods for a long time. I’d like to expand to another vegetable and maybe some SCD baking ( no nut flours though).

  8. Monica March 16, 2016 at 12:03 pm #

    Hello everyone I am new to this thread and I am very glad I found you. All your information is so helpful. I have been suffering with ulcerative colitis for years but only 2,5 years ago I had a flare up which I manage to improve without the use of cortisone. Since December 2015 I have had bloody stools and consistently got worse until the urgency increased and I could not hold the Salofalk enema, as well as suppository. I was given Prednisolone, for 6 weeks starting with 30mg and wining down every week. I am on my second week at 25mg, but since two days I have been having terrible urgencies, even 15 per day, with pain and bloody discharge. I am also not able to eat, so I am only drinking Earl Grey tea with lemon, white bread toast, and boiled rice. Sometimes I can handle steamed seabags. I have been using RenewLife 50 Billion Probiotics and also Renew Life Super Critical Omega 3, as well as Calcium Carbonate and Vit D3 to contract the damage of the cortisonee to the bones. I am still not able to hold the Salofalk enema for more than 1 minute.
    I am literally homebound as I do have urgencies at any time. What is the average amount of urgencies per day that you have experience at critical flare ups? I am keeping a diary and I feel frustrated that this is not improving (ranges between 10 and 15) and because I am not eating properly I feel very weak.
    I am a very active and sociable person and this flare up is making me very anxious as I feel restrained. Do you think there is anything that I should also look at to help. I am so eager to get better. Thank you everyone in advance.

  9. Alexia W
    Alexia March 19, 2016 at 8:02 am #

    I never had problems with urgency or making several trips to the bathroom. On my worst days, I’m going a few times a day with blood and mucus.

    I have found that following the SCD helped calm my guts in the beginning. Bone broth, purred carrots or squash and chicken. I also are eggs for breakfast.

    Try to stay away from starchy foods and all grains in the beginning and slowly add foods.

    In my experience, everyone person with UC is different. I used SCD as a starting point as far as diet is concerned.

    I’m still on 20 mg of prednisone and salufalk tablets and suppositories.

    I have finally turned a corner, but it has taken several months.

    • Monica March 19, 2016 at 11:57 am #

      Thanks Alexia. After reading carefully all of your messages and also Adam’s book, I have realised that I sticked to bland food but the wrong one, since I concentrated on grains and starch. I have now removed all this and I will see how I go. I hope to see some improvement.
      I am glad you turned the corner. Although it takes time, i think it is a great achievement as things will get better.

  10. Monica March 19, 2016 at 11:56 am #

    Thanks Alexia. After reading carefully all of your messages and also Adam’s book, I have realised that I sticked to bland food but the wrong one, since I concentrated on grains and starch. I have now removed all this and I will see how I go. I hope to see some improvement.
    I am glad you turned the corner. Although it takes time, i think it is a great achievement as things will get better.

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