Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

UC will NOT Stop Me!

Introduction:

Hi! My name’s Ruthe. I work in a hospital as a phlebotomist and have also just started nursing school. I’m addicted to running, which often means that I run from porta potty to porta potty! Regardless of what my gut does,I have to run…it’s a matter of staying SANE!
Whistle Lake Mile 8

Ruthe at Whistle Lake Mile 8

My UC Symptoms:
I’m currently going through the worst and longest flare since I was diagnosed- about 15 years ago. I’m perimenopausal and wonder if changing hormones could be exacerbating the Ulcerative Colitis..doc can’t answer that one for me! I’m tapering prednisone, down to 10 Mg, but have that “oh no” feeling. I also take balsalazide, which has been my go to drug for years, but now feels worthless! Currently. I have cramping, urgency, pain and some diarrhea. Not a lot of bleeding or mucus, but before the pred, it was horrendous!

My Story:

I have the most amazing husband who is kind and understanding throughout this whole bathroom adventure. He’s often sat in the bathroom with me an held my hand while I sat and cried…I’m lucky! But he is all I. Have. We’ve become estranged from my family because I have a daughter who is mentally ill and a drug addict …life is incredibility stressful! It would be wonderful to have their support but this is not to be…at least right now. I do have several good friends who work in health care and are not grossed out when I tell them to” find me a potty before I crape my pants!” I’m sure you all know how rare that is! I’ve made it a point to be more open about my problem in an attempt to reduce the stigma, I attempt the same thing with my daughter’s situation.
UC has only slowed me down …so far. I’ve run 3 marathon’s and 9 half marathon’s, but with this last flare I had to stop running due to the pain. For three weeks I rested and nearly went crazy. I actually cried with joy on my first run back! I’m afraid for the future, especially because I’m getting older. I seem to be handling stress less effectively, which is (maybe) why this flare has been so bad!? I’m also afraid because I don’t have insurance and cant get scoped. Doc is pushing to get one done, but he did 33 biopsies with the last one, and just the biopsies are 80. Bucks a pop! That doesn’t count the actual procedure or the pathology! Ouch! I’m a starving student! Tuition is huge and there’s not enough left for even important things. I told my doc that I’d go to the UW and offer my gut as a learning tool in exchange for a free colonoscopy…he was not amused ;-)

Where I’d Like to be in 1 year:

I’d like to be symptom free in year! I start the paleo diet Monday and have high hopes!
I’d like to be running pain free-at least gut pain free’
Colitis Medications:
I have loved balsalazide! I hope it works for me again! In school I’ve learned that its a prodrug – which is a med that is inert until activated. Balsalazide is inert until bacteria in your gut go to work on it. For this reason it is not systemic and, for me, causes very few side effects. Unlike prednisone, which makes me want to eat EVERYTHING and want to kill my sweet husband!!! Lol

written by Ruthe

submitted in the colitis venting area



balsalazide, paleo diet

6 Responses to UC will NOT Stop Me!

  1. Katie June 27, 2012 at 9:12 am #

    Hey Ruthe! Props to you for all of the running and marathons! Even if you’re stressed out you seem to have a positive attitude which is great.

    I was wondering the same things about hormones messing with our systems. I was only diagnosed with UC a few months ago but notice the symptoms are always worse each time I’m on my period. I’m still decreasing steroids from the initial flare so never know which is the culprit for extra BMs per day. But whenever it’s “that time of the month” the extra bloating and cramping seem to throw my colon off whatever progress it was just making. Ugh! Maybe the chocolate cravings I give into have something to do with it also ;) (Just kidding, I’m pretty good with eating right..most of the time…)

    I was wondering if any other females had similar issues?

  2. Maggie June 28, 2012 at 8:12 am #

    Hi, Ruthe. As a ucer and post menopausal, I had no problems in perimenopause. There can be so many determined and undetermined causes but I don’t think hormones are one of them, after all, men have uc, too. Of course we know stress is a biggie, try drinking more herbal teas, like chamomile for relaxation, spearmint, and ginger. I’m sorry about your daughter, I’ve gone through troubles with my adult sons, too. Both are out of work and my oldest son got a dui and now has to wear some kind of ankle braclet that will detect alchohol in his system. We hate to see our children go through such tribulations. Like Kate says though, you seem to have a good attitude. You could try diet and supplements. I just got off a several month flare, still have some bleeding some mornings. Oh, yeah, do you have a heating pad? Try putting that on your tummy when you’re cramping, it really helps along with some herbal tea. Good luck to you.

    • Ruthe
      Ruthe June 28, 2012 at 10:21 am #

      Hi! Thanks for your kind comments. I’m going to try the heating pad for sure! Would have come in handy last night. I’m on day 3 of the SCD and feeling exceptionally miserable. Although I have to say, my UC symptoms are better already, I think? I only used the bathroom once yesterday, down from 7-8 times a day pre-SCD. But I’m not sure if it’s the very restrictive intro diet or that things are coming under control. What I can say for sure is that I have a lot of faith in this plan and have TOTALLY bought into it! 100%! I won’t change back to the way I was eating even if, after a few months, I find that it’s not helping the UC. I like eating “clean” like this and imagine it will be much better when I can add in more food.
      I really think, more than perimenopause, that stress is what’s messing me up right now. My daughter is home, after a long absence, and not doing well and it’s kinda like living with a live bomb. I’m going for a long bike ride today to burn some stress, but really need something else…I”m looking!
      Could any of you talk a bit about the “die off period”. I’m shocked at how horrible I’ve felt these past few days. It’s very hard to study when you feel like you’ve been battered with a base ball bat! Have you guys had the same experience? Is there any correlation between how sick you are and how bad your die off symptoms are? I keep trying to have a good attitude and think, “die buggers die”!! but it’s hard when I just want to stay in bed!

  3. claudia anderson June 29, 2012 at 8:36 am #

    Hi Ruthe~
    Please don’t give up the diet. The die-off makes you feel like you have the flu but after, you’ll feel better. If you stay on the diet you may have other die-offs as your body heals, slowly. It is not a quickie fix, but it is the only thing that will heal. (Your sweet husband will benefit from the diet as well) Stay on your meds as long as you have to. They will help support you as the diet does its work…you can always back off them when the time is right. Start taking probiotics & do some fermented food too (you can buy excellent & tasty naturally fermented pickles & saur kraut at health food stores). These will help so much with digestion! Right now, it’s just baby steps–but they will add up & make all the difference. Good luck!

  4. Adam
    Adam June 29, 2012 at 9:00 am #

    Hi Ruthe,

    I’m definitely concerned when people write in and talk about not being able to afford colonoscopy procedures.

    There are usually options though. I am not sure exactly where you are located, but I would suggest that you contact the local office of the Crohns and Colitis Foundation. They have always claimed to set aside amounts of money for people living with the condition who cannot afford proper medical care. You surely wouldn’t be the first to receive financial help with a procedure like a scope, and hopefully not the last either. Along with that, maybe you can ask your GI doctor what type of payment options he/she has for you too. Doctors are real folks, they understand that economic times can often be hard, especially for students, as they were once students as well.

    I’ll try to think up some more ideas for you, and I sure wish you the best.

    -Adam

  5. Ruthe
    Ruthe July 8, 2012 at 11:44 pm #

    Hi Adam,
    Thanks so much for the suggestion. I’ll check out the website and see if I can find what you’re talking about. My doc does have a payment plan, but I only work per-diem and it’s tough to have ANY bills, not to mention one that big when it’s coupled with tuition. I should just bite the bullet and go in debt tho…gulp!
    I did get over the die-off and really started to feel better, then decided to try some fruit. Big mistake! I feel like I’m back to square one. Today I had a lot of bleeding and didn’t make it to the potty in time – horrors!! But hubby had packed some spare scrubs for me in the car, so I was saved! I’m making bone marrow broth right now and have a lot of frozen chicken soup and a new batch of SCD yogurt cooking, so I’m ready for the intro to begin…again!
    I feel so strongly that I do not want to be back on meds. Of course I won’t rule it out, but when I think about the side effects of the meds, I can put up with the “side effects” of the SCD.
    I think my biggest hurdle right now is the stress. I had a HUGE test yesterday and just did not handle the stress very well…it’s becoming a theme. I’ve got to stop ’cause I’m making myself sick!!
    oh well!
    Thanks for all the encouragement!

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