Coming to Terms and a Little Sad About It

Anna from DCMeet Anna:

I was diagnosed with moderate Ulcerative Colitis when I was 19 years old and in my freshman year of college. After some serious doses of Asacol, it was under control in a few months and after a year, I weaned myself off of it and started natural therapies. After evidence that the disease had left my body, I proceeded to have four years of remission and returned to a mostly normal life and eating habits…until this past October (2012.) Since then, having not been on maintenance medication and letting my diet go, the disease has been back with a vengeance. Due to a very unfortunate filing error on UMD’s part, I now have no Rx coverage until JULY :( and can barely afford Apriso out of pocket and Asacol is out of the question due to its cost. So, for four months I have been taking VSL 3, Prednisone (40 mg now down to 10 due to glaucoma-like symptoms) and the Apriso… but the bleeding won’t seem to stop even with diet changes. Discouraged, at this poi nt! Just started the Maker’s Diet again. Hoping it helps but so far in week one of phase one, and my symptoms seem worse? C’mon!

Some more about me:

I’m a classical violinist living in the DC area! Conductorless chamber orchestra is my passion (it’s pretty great, you should know about it!!) I also have a food blog and really love baking a la Julia Child, but now being gluten-free, that’s been put on hold for a while. Figuring out a new lifestyle altogether, in fact!

Colitis Symptoms:

Bleeding, urgency, chronic fatigue… general feelings of needing to stay in bed? (haha.)

Coming to Terms and a Little Sad About It

Wishing Natural Remedies Actually Worked Like Conventional Medicine

I was determined not to let Ulcerative Colitis change my life and after that initial year of trouble, I really had convinced myself that it was over for me forever. But now that it’s back and I’m more discouraged about it and ridden with fear over it than I thought was possible, it seems to be changing me in quite a few ways. But, I will always remember the words of my first integrative doctor – she said that I could walk away from this and I should never own it as MY disease. I’m determined to figure out what this means.

Practically speaking, well, does anyone REALLY want to worry about crapping their pants when starting a new job or before walking out on stage? I don’t think so. Not to mention horrible pain. That never does well for hanging out with friends. And of course NO ONE wants to have to know where the bathroom is at all times… But I’m hoping to put all of this behind me soon. I just know it will take work. And if I can’t walk away from it? Well, I’m not ready to accept that yet! I just have to accept that permanent changes are what I need. Of that, I am convinced.

My family is super supportive but I do have a mom who really wants me off of conventional meds and only into natural things. I agree with her, but doesn’t the bleeding have to stop first?

My current worries are that Prednisone and Apriso are not actually helping with healing at this point… and honestly, I’m afraid to talk to my doctor because he is a big pusher of conventional meds with no regard for other side effects. But when you’re pooping blood, I guess there isn’t much choice.

I suppose this is a coming-to-terms for me!

Colitis Medications

Asacol – worked, but with side effects. If you can take it and come off of it like I did – I suggest that! Wishing I could take it now – why oh why does it have to cost SO much? Angry about that.
VSL 3 – I can’t tell when this is working vs not, but I believe in it due to the benefits of good cultures, since those of us with UC have very unbalanced flora
Apriso – Pretty sure it doesn’t work aside from keeping pain at bay? Or so it seems
Prednisone – If you’re really bad off, take it? Otherwise, stay away! Diabetes – glaucoma – God knows what else?
Acupuncture – SO helpful for pain

written by Anna

submitted in the colitis venting area

8 Responses to “Coming to Terms and a Little Sad About It”

  1. LynneMarch 5, 2013 at 6:18 am #

    Hi Anna,

    I’m sorry you’re struggling. Your story is so similar to mine (except for the classical violinist part!). I was diagnosed about 7 years ago and took asacol for awhile. You are the first person I’ve heard here who has mentioned The Maker’s Diet – a diet which I lean toward. I followed it at first, eventually stopping my meds, and was in remission for almost 4 years. Like you, I could eat whatever I wanted & eventually did let my diet slide, as well. When it seems like you’re completely healed, it is so nice to relax and enjoy little things again (like coffee, etc.). But, I, too, have begun to flare & have been very confused as to how I could be so very normal (my stools were worthy of framing) & then suddenly … not. I’m currently taking meds (entocort) to help me out of this flare (seems to be helping), & I’m also taking VSL, along with many other supplements. Unfortunately, I don’t have time to write much at the moment, but I’ve just started something new: oil pulling. I believe pretty strongly that UC is a bacterial matter and not an autoimmune disease. I hope you will find some encouragement here.

    lynne

    • Anna in DC
      AnnaMarch 5, 2013 at 8:39 pm #

      Hi Lynne! Thanks so much for your reply! Since posting this info a few weeks ago, I Have taken a different route (kind of out of force.) My UC has taken a turn for the worse and through research, I keep seeing the GAPS diet over and over in testimonials. I am beginning to understand that conventional medicine only treats symptoms and doesn’t provide true healing for our guts. The intro phase of GAPS is REALLY difficult and requires a lot of discipline, but two days into it and I know it’s something I Have to stick to and pursue from here on out. You should check it out, too!

  2. Caroline
    CarolineMarch 5, 2013 at 7:02 am #

    Hi Anna….sorry to hear you are having a rough time! I hope you feel better soon…UC is one nasty condition! I got diagnosed in January but my symptoms started in the fall when I started a new job. Great timing.:) Diet and probiotics have been helpful to me…I am following the paleo autoimmune protocol. I am almost done with the round of prednisone I needed to get me out of my flare, and my doctor put me on Apriso as well. Ask your doctor for a savings card on it…Apriso’s manufacturer has a discount card where it helps significantly with the cost. My first month was free and each subsequent month is only $10. Good luck…that stuff is not cheap!

    • Anna in DC
      AnnaMarch 5, 2013 at 8:43 pm #

      Thanks for the advice! And I have to say, since creating this post a few weeks ago, life has changed pretty drastically for me and my disease for the worse. The more research I do, the more I realize that these conventional medications only cover up the real problem while treating our annoying symptoms. Although it is a long road, you should really consider the GAPS diet. I just started the intro phase and it is very VERY difficult, but I really believe it will provide true healing! Check it out!

  3. ErickMarch 5, 2013 at 10:52 am #

    Hi Anna,

    I also have colitis(left side) was diagnosed two moths ago. I also have no insurance and currently a college student. The doctor gave free samples of asacol and canasa(suppositories), they both worked! Here’s the bad part, as you may already know, they are incredibly expensive and out of the price range of most people with out insurance. Here is the good news, I took matter into my own hands and decided to order my meds from Canada.i was able to get my canasa suppositories which are usually 500 bucks at u.s. pharmacy for $78 dollars from a pharmacy in Canada. So far I have been on solofak(Canada equivalent to canasa) for one week and they seem to be working fine so far. Let me know if your are interested and ill post a link.

    • Anna in DC
      AnnaMarch 5, 2013 at 8:46 pm #

      Hi Erick! As I’ve said to the other two – thanks for the thoughts and advice and in the last few weeks, I’ve taken a turn for the worse and have gotten serious about truly healing my colon instead of just masking the real problem with drugs. Have you looked into the GAPS diet? Check it out!! I have read countless testimonials of healing because of it – a tough road to hoe for the introduction diet portion, but I believe it’s going to be effective and now want everyone to look into it :D

      • PrudentPegMarch 6, 2013 at 5:51 pm #

        I use the Canadian pharmacy for my Asacol. I was diagnosed in October. I am on 4800 mg a day 3 800 2 x daily. The cost at my local pharmacy was nearly 1000 a month. Through the Canadian pharmacy only 350 with shipping for THREE months. I too am hoping for a more natural approach but I know the Asacol is helping me get it under control for now. Good Luck to you.

  4. bevMarch 6, 2013 at 1:00 pm #

    Hey Anna,

    I was on asacol for 14 years straight, and it helped at first, but as my UC travelled further up my colon, and the dosage was increased, it actually started doing me more harm than good! Unfortunately, it seems that all of the meds used to treat UC eventually fail. Prednisone can become a dependency drug as well, with it being the only thing that can control the UC symtoms, and it’s not a great drug to stay on, taht’s for sure. All of the UC meds are not healthy for us. I really believe that the only way to manage UC is to find the natural way that works for each one of us.

    I have gotten off all of them and now take a good 50 billion strain probiotic and the famed L-glutamine. Those two things, along with a couple natural anti inflammatories (vitamin D and astaxanthin) are somehow keeping me in remission! No kidding! There’s also some great things happening with extra virgin olive oil, that you can read on this site.

    Cheers,
    Bev
    :)

Leave a Reply