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The Life of a Traveling Patient

I'm Yael. diagnosed with UC in February of 2013

I’m Yael. diagnosed with UC in February of 2013

Intro:

Hi, I’m Yael and I’m 19 years old, diagnosed with UC in February 2013 after a year of heavy blood loss. I received 2 blood transfusions.

I was put on oral prednisone.It didn’t work. I was then hospitalized for a week, while they tried IV Prednisone- also to no avail. From then on it’s been 400 mg Remicade/2 months and 50 mg 6mp tablets/day. Thank G-d, I’ve felt fine since starting Remicade!

I had been away for school in Chicago when I got really sick, so I flew home to California where the diagnosis happened and my GI prescribed Remicade. I then flew back to finish school and got a new GI there so that I could continue my treatment

Then I went to Israel for a year, without knowledge of how I would get the Remicade that I needed (I know I’m crazy). In the end, I had to fly home to California for my first Remi (a plane ticket was cheaper!) when I returned to Israel, I became an Israeli citizen and got Israeli insurance in time for my next Remi.

This year, I am living in NY and I am currently up to my 4th GI doc.

Some more about me:

I enjoy writing and drawing whenever I’m not too lazy.

My pet peeve is when people refer to me as being “sick” or talk to me too much about my UC. I don’t let it take over my life and my mind, so it bothers me when others bring it up a lot.

Oh, and I’m in love with the land of Israel!

Symptoms:

Negative symptoms: I bleed (teeth brushing, waxing, plucking etc.) easily, I get headaches sometimes, and My stomach tends to feel weird (but that’s probably because I eat whatever I want).

Positive symptoms: a more positive outlook on life, and appreciation for the things that I do have.

The Life of a Traveling Patient

UC is a pain, and that’s the truth. I have a phobia of blood and veins, so it was real great when I found out that I would have to get poked by a needle every 8 weeks. Thankfully, I have come to realize that it doesn’t really hurt, and what hurts the most is getting all the tape of my arm in the end:). My veins are really difficult to get into, so I have this fear deep inside that one day they won’t be able to access my veins anymore because the few that they can locate will be all used up. Hopefully by that time I won’t be on Remicade anymore!

Another annoying thing is feeling limited in what I can do and when I can go on trips. I used to feel like the whole world was laid out before me, but now I have to work between Remicade dates.

Really, though, it’s all good. If I was given a challenge, it’s a sign that I can overcome it. It’s a sign that I have strength and capabilities that others not in my situation don’t have. That’s pretty empowering!
A great rabbi named the Rebbe Maharash once said that most people say (in regards to an obstacle) that if you can’t go under it, then go over it. However, the Rebbe Maharash said that you should just go over it from the start! Obstacles are only there to help you go higher.

I’m sorry if it sounds like I’m rambling, but this is seriously what keeps me going and I hope you can gain from it as well.

Now for question time. As I have said before, I am currently up to my fourth GI doctor in a fourth location. I’ve been on Remicade and 6mp all along, been doing just fine, and the doctors never said anything.
Suddenly, my new doc in NY tells me that I’m probably on an unnecessary amount of meds and I’ll probably be fine with just the 6mp and scratch the Remicade.

Of course, he is first going to look at my initial colonoscopy and do another one to see if I could handle it.
It was surprising though, and I’m so unsure about it.

Of course, I would love to get off Remicade, but if it’s working, isn’t it worth it just to stay on it??
Has anyone here been in a similar situation? Have you ever been taken off Remicade and been fine without it? Did you ever need it again and found that it didn’t work because your body built up antibodies?
Thanks everyone and thanks Adam for this awesome website!

(I’m currently on 400 mg Remicade every two months and 50 mg 6mp once a day.)

Medications / Supplements:

I was taking vitamin D and one Tum every day (for calcium) because I was told that people with UC can get bone issues. Later, I was told by a different doctor that it’s people with Crohns that it happens to. Now I’m not taking them as religiously as before, but vitamins are good either way.

written by Yael

submitted in the colitis venting area




4 Responses to The Life of a Traveling Patient

  1. Joe H
    Joe H. September 9, 2014 at 11:01 pm #

    Greetings Yael, Thank you for posting your story, it is very inspiring. You have such courage and strength to handle your condition and have such a positive attitude about it. My heart ached reading all the things you’ve been through. I hope something you read on this site will help you.
    Although I was misdiagnosed for sometime I think treatment for UC was stared early enough to get it under control. I’ve only experienced two flares since 2012, each lasting about three months. I was on several medication from the start, including Prednisone which worked for me. In December 2013, after my last flare, I started the SCD (Specific Carbohydrate Diet) and so far all is normal. I’ve been intrducing foods that are on the prohibited list for the last few months but being cautious and looking for any signs of a flare. I believe the probiotic “Ultimate Flora” have help me the most.
    On another note … I had the opportunity to visit Israel for two weeks in 2011, and I can see why you love it. Be well.
    Shalom,
    Joe

  2. Darlene September 10, 2014 at 11:04 am #

    Best wishes to you, Yael, as you travel the world while conquering UC! May you soon find the best and most suitable treatment that keeps you healthy and strong and doesn’t produce side effects. Read a lot about nutrition. The supplements that help me are Vit D, Calcium, Magnesium, and 1000 mg of Chlorella. Chorella made a dramatic difference for me noticeable just within 3 days of taking it.

    There’s a rabbi that I follow that you might enjoy if you don’t know of him already. He’s a native Californian that has lived in Jerusalem for many years. He has a website and his teachings and books are amazing. Rabbi Avraham Sutton. Look him up on the web. Sometimes Rabbi Sutton travels to the States to teach in NY and in Texas where I live.

    Shalom,
    Darlene

  3. Joe L. September 10, 2014 at 12:31 pm #

    My son also went to Israel last year on a gap year in between high school and college. We were told it would be better if he brought the Remicade with him. So he went to Israel carrying a lot of Remicade on ice packs. Treatments went well, but in January of last year he developed some sort of infection. After two hospital stays, I went there and brought him home at the end of February. I thought it was his diet and living conditions that didn’t work well with a person with a suppressed immune system, or that the Remicade was no longer working.

    He then came home and went to a “recommended” GI and to a naturopath doctor. Where he went gluten free and took lots of supplements. We went about 10 weeks after a remicade treatment thinking maybe he could live the good life and not need remicade. But he started to flare and we went back to the remicade and now added methotrexate as well. I believe my son will continue this course until it no longer works and then try another biologic.

    Yael, while my son was in Israel, he had dinner with a women, who is now engage to our cousin and involved with medical research. She mentioned that within 5 years there might be a cure for UC. We can only hope! Continue living the dream.

  4. laura Italy September 10, 2014 at 4:18 pm #

    Ciao Yael,

    I have been on Remicade for one year, Sept 2010-Sept 2011, and I was fine, I just noticed I was starting getting forgetfull ..I left my iPad on the bus, :-( so I decided to interrupt it. My GI did not agree, since I could not take Pentasa or similar since Having developed an allergy. At the end of Sept it will be 3 years that I am med-free. Yuuuuuuu!! :-)

    My diet has changed, vegeterian with Very little fish, no meat, no diary products..

    This year I was on a very challenging vacation, 2 weeks in Botswana in the parks camping ..My guts behaved very well, very proud of them.

    Feel free to ask me any other detail.
    All the best, and thanks for sharing

    Laura

    As supplement i am on Schlusser salts, homeopathic iron, calcium etc.

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