Please Hold My UC Hand



Intro:

I previously held a high paced job, and since my UC flare I’m just thanking G-d that I can actually work at all (never mind at a low pay low paced , not my style stuff)

Some more about me:

I’m from the Sunny South…though currently live in the wintry north . I feel like I’m going through a mid-life crises even though I’m only in my twenties : ( I like to feel in control…and life has been outta control. I am strictly kosher.

Symptoms:

urgency, blood, unformed stool

Please Hold My UC Hand

Hi UC people! I need someone to hold my hand here please.

To make a long story short I’ve had UC since 17 years, (been on and off the meds) and now at age 27 I’ve been struggling to get over a big flare, for the past year.

While I was younger my UC seemed like nothing more then a fly on my shoulder. As I got older, and the extra-intestinal manifestations symptoms of UC started to kick in , my life turned onto some passive war. I don’t know whats coming to me next!

While the doctors have long threatened me with humira, I had been staying on the asacol/lialda and sticking to diets changes.

And with the help of some chinese herb called leigongteng (which should never be taken without the administration of a TCM doctor), I was able to taper off the prednisone pain free.

About a month ago, I started a mild flare – the third of this past year : (

The doctor then added 6mp to my regimen. ( I was on that stuff in the past and still flared on it)
And now, my ankles started swelling : ( Thank G-d its winter , so no one at work has to know about this! Thank G-d I have a pair of boots that still close! )

Is Humira really my only choice now???
I feel like my immune system is already so low- my whole system is especially out of wack around a week before my cycle)- will I always be sick on the humira? Will I not be able to work with children?

What about getting pregnant and nursing on this toxic stuff ?
I’m scared!

——————

ps- i’m super confused about the foods I should/n’t eat because I have heard from way too many differing “alternative” opinions. I do keep a food journal and still can’t figure it out.  I currently take iron, folic acid, zinc picolonate, coral calcium and green algea

written by Sarah B

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Ask Adam:

“Please don’t post my email address, I am also changing my name . Thank you for your site!”

Hey Sarah,

Thank you for sharing your story and asking so many excellent questions.  Definitely you can rest assured that your email address is never posted to the site.  I request that all writers like yourself include your email address when you filled out the story, but that is only for me to use when setting up your account, and it allows you to automatically be emailed when someone posts a comment to your story.  And as for your name change, that’s fine too.  I’m sure many of the thousands of users of the site have used an alternative name for privacy reasons and that’s just fine.

To follow up on some of your questions, please take some time and read the “Pregnancy and Ulcerative Colitis Survey“.  Lots and lots of good info in there from 107 participants who’ve been there and done that.

Also, you might want to take a look at the medication reviews page.  There is a specific page for Humira you’ll see and several other reviews of medications which maybe you haven’t looked into yet.

And lastly, everyone knows I’m a huge personal fan of diet for treating my UC.  And although it for sure doesn’t work for everyone, it has allowed me to get off medications for the overwhelming majority of months since being diagnosed almost 6 years ago.  I eat mainly meats, vegetables, fruits and eggs.  Very very very little cheese, and never milk and quite a bit of honey.  For drinking, its mainly water and some coffee from time to time.  I’m in Atlanta, GA at the moment visiting family and last night we visited a Persian restaurant.  I ordered the chicken kabob and substituted the rice for grilled veggies.  OMG!  I think if there was just one meal to eat for the rest of my life, I could deal with that just fine.  Not sure of the spices they used, but YUM BIRD!

Good for you for journaling what you eat.  I know its hard to figure it out.  But its for sure possible.  You’ve got to be willing to cut out alot of food groups like grains and pretty much ALL processed foods.  And you’ve got to be willing to do alot of your own cooking.  But I think its been well worth it for me and a crap load of other UC’ers who have gone on the same diet plan.

best of luck to you Sarah!

-Adam









8 Responses to Please Hold My UC Hand

  1. Erik May 1, 2014 at 10:05 am #

    Hi Sarah,

    Sorry to hear about all your trouble. I’ve had severe flare ups off and on for the past 2 years. 6mp did the same thing to me – my ankles and legs swelled up so badly I could barely walk so had to stop taking it.

    Right now I’m on humira and uceris (a newer steroid). The flare up is finally ending but I’m thinking it’s more due to uceris – maybe you could try this out? Also, a new UC drug is coming out soon called Entyvio which I plan to switch to from Humira. It’s also a biologic though… so probably presents problems for pregnancy…

    Erik

  2. Jennifer May 1, 2014 at 11:02 am #

    Hi Sarah,

    I am so sorry that you’re going through this. I am preparing to go see a GI to find out if I have UC. I understand your fear, especially with Humira. That stuff scares me, too. I was actually talking to a woman who had UC but got it into remission by changing her diet. I just ordered the book myself to see if I can get a handle on what seem to be flares. Here is a link to the book, maybe you can try it and have success, too!

    http://www.amazon.com/gp/offer-listing/0969276818/

    I wish you all the best and please know you’re in my thoughts.

    -Jennifer

  3. Sarah B. May 1, 2014 at 1:17 pm #

    Thank you for your support!
    Erik , its interesting that you say the 6mp caused your swelling- by me the doctor didn’t think so – he just upped my dose from 50mg to 75mg , which I am currently taking.
    Thank G-d the swelling has gone- just in time for spring : )
    I just got THE SHOT for the first time yesterday – it wasn’t as bad as I thought.
    The rhuemotologist said I should follow up in two months.
    I haven’t spoken to my GI yet , though I’m finding it frustrating that the doctors don’t care about what’s written in the warnings ie- “don’t take Humira and 6mp together, as it can cause…” and “don’t take lialda and 6mp together as it can cause….”
    They tell me “not to worry…”
    At the end of the day they won’t take the blame, because its all written in the fine print.

  4. bev May 1, 2014 at 4:17 pm #

    Hi Sarah,

    Please remember…you do not have to do or take anything that you don’t want to. You are the boss….not the doctor. You have the right to choose and the right to say no, thank you.

    If your gut is telling you that these drugs are poison…listen to it!

    I do not and will not take meds any more after almost 20 years with UC. I treat mine with a good probiotic and L-glutamine. These work better for me than any of the meds ever did.

    Cheers

  5. Karen May 2, 2014 at 5:16 am #

    Hi Sarah
    Please try to incorporate the SCD diet into
    your life. You may be one of the folks who go
    into remission on diet alone. Even if you don’t
    completely stop the UC symptoms, you’ll
    be way healthier and less symptomatic and
    Need much less medication and probably
    never need biologics. ( other diets for
    inflammatory bowel disease would include
    FODMAP and GAP… and are in the same line
    as the SCD. ) Adam’s cook book would be
    a great intro to how delicious this diet
    change can be. Good luck Sarah :)

  6. Zach May 2, 2014 at 7:36 am #

    Hey Sarah,

    I was diagnosed at age 27, am now 30. For the first 2 and 1/2 years I fought my UC with Lialda, Azathioprene, and Prednisone. The only time I felt close to normal was when on high levels of prednisone. I tried diet along with all of this and although it did seem to help some, it didn’t by any means cure my symptoms of having to go 5 or more times per day. And I can’t say it helped for sure because of the constant up and down on prednisone. I had finally had enough and met with a surgeon. After consulting with her she actually suggested I give Humira a try. I had been on Remicade before but it seemed to stop working and I wasn’t completely back to normal on that either. Hearing the surgeon whose job it is to remove colons tell me that she would give Humira a try before going through with the surgery was enough to convince me to give it a shot.

    I am so glad that I did! I have not been on prednisone for 4 months now and feel the best I have since I before I was diagnosed. It seemed to take about a 8 weeks or so to really kick in but I honestly am feeling the best I have in years. I only use the restroom 1 or maybe 2 times per day max right now and it’s normal and formed. The self injecting pens are really easy to use and don’t bother me at all, especially now that I know what the real benefit of taking this medication is for me. Also, I’m not sick all the time. I’m smart about washing my hands but nothing out of the ordinary. Take it from someone who was mentally prepared to have major surgery to take care of the symptoms, Humira was worth it.

    My thinking also is so many great things are happening in medicine that if I can stay healthy long enough maybe they’ll come up with an even better treatment that has less potential side effects in a few years? Hang in there.

  7. Chris R May 2, 2014 at 4:30 pm #

    Well Sarah just to be quick with my experience with Humira. After trying everything in the book with meds. I took the plunge with Humira this year 2014 in January. I’m doing one injection every two weeks and have been blood and mucous free every since. I eat what I want and have nicely formed stools with no more than two bowel movements per day. Fingers crossed because I feel better right now than I have in a year and half. I have gained 20lbs that I lost when I was visiting the restroom 20 times a day and eating nothing. I do have lots of nasal congestion. I can live with it though. I was nervous about Humira at first but as of right now I’m more than pleased with my results. I would give it a try in your situation. Everyone is different and it may quit working for me one day or have horrible side effects at some point but for now I’m not looking back. Best of luck too you and hope your days get better.

  8. Sarah B. May 4, 2014 at 2:33 pm #

    Thank you again for your comments! I’ve found diet to help , and even when I was just in Lialda , I was going 1-2x a day.
    What I can’t seem to figure out how to live with is all the extra-intestinal manifestations of this illness- that is JOINT PAIN, and SEVERE FATIGUE. I seriously can’t figure out how to hold a normal job with this!
    I’ve opted for a $15 hour over my descent paying job, so that I can be on medicaide, because I’m scared of not being able to pay for the doctor visits, hospitalizations (I already had three) , and meds. ??? What do you all do?

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No matter what, colitis flares don't last forever, don't forget it:)