A little insight on my insides.

by on Monday, February 8, 2010 10:42
This entry is filed under: Jpouch Surgery

Hi I’m Jackie. I’m a 25 year old woman child from my native of Michigan. I have a bit of an interesting UC story so bear with me while I get my intro out of the way. I was officially diagnosed with UC in May of 2009, but had symptoms for easily 10 years. In October 2006 I was also diagnosed with Multiple Sclerosis. I’m a bit of an auto-immune allstar. Long story short in 2009 I was admitted to the hospital 4 times and the ER 6 times for my UC. Asacol gave me a pericardiac effusion resulting in a lot of pain and emergency surgery around my heart.

After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ’09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI them told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say  I was a bit conflicted.

I met with Dr. Remzi last Monday in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.

So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.

oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday :)

p.p.s. I make typos a lot. Deal with it.

These posts might also help out:

You can leave a response, or trackback from your own site.

16 Responses to “A little insight on my insides.”

  1. avatar

    Mary says:

    February 8th, 2010 at 11:09 am

    Hi Jackie, Wow…that is a lot to deal with. UC is one thing but adding MS to the mix changes everything. Surgery will help you live better without UC and you won’t be steriod dependent once the colon is gone which will be nice for you. We’ve all had the prednisone bloat – not the sexiest look is it?!

    [Reply]

  2. avatar

    Brevin says:

    February 8th, 2010 at 11:09 am

    Yeah but Pity Party cake cake tastes horrible, so you’re welcome!

    [Reply]

  3. avatar

    Mark says:

    February 8th, 2010 at 4:49 pm

    Hey Jackie, You know it is unlucky for you to have both UC and MS, those are two handfuls. Your immune system must be a fighter not a lover. I had UC and my older sister has MS and our doctors have loosely said it is genetic in our family to have auto-immune diseases, however, what doesn’t add up is that we don’t have rates of the big auto-immune diseases like cancer….so not sure my talking helps, just I thought it was strange you’ve got both when it is the same as my sister and me.

    [Reply]

  4. avatar

    Jackie Z. says:

    February 9th, 2010 at 6:22 am

    Yea I guess you could call me the lucky one. Whats really fun about it all, is that I’m the only one in both sides of my extended family with either disease. No one else has anything even close.

    [Reply]

  5. avatar

    lizz says:

    February 9th, 2010 at 10:59 am

    Wow, girl. You have really been through it, but you seem like a super tough cookie! I would hesitate to say that any doctor at the Cleveland Clinic is an idiot! You are in expert hands, and it doesn’t sound like you have a ton of other options medically. You don’t want to stay on Prednisone for many reasons. Humira has been my savior, but since you can’t take biologics, that’s certainly out. I had a three step too. If you need a venting pen-pal let me know!

    [Reply]

  6. avatar

    Colin says:

    February 10th, 2010 at 2:03 am

    I know I’ve told you this a bajillion times, but you picked the best in Dr. Remzi and the nurses at the CC. You can at least put *those* worries out of mind.

    [Reply]

    avatar

    Jackie Z. Reply:

    I think you’re possibly more excited for me to have this surgery than anyone else just so I stop IMing you with “so I have another question”…. thanks for all your help! Its too bad we wont cross hospital paths. At least not yet.

    [Reply]

  7. avatar

    Melissa says:

    February 10th, 2010 at 2:35 pm

    Wow, Jackie. You’ve been dealt a rough hand. You will feel so much better once you get rid of that diseased colon! Best of luck to you! I’m from Michigan too – I went through Royal Oak Beaumont, and I’ve had two of three steps done. Now I’m awaiting takedown. I don’t miss my colon one bit! lol

    [Reply]

  8. avatar

    Laminda says:

    March 2nd, 2010 at 9:42 pm

    Hi, Jackie, my name is Laminda. I am 31 and am from Michigan I was diagnosed with UC in 2000. In November ’09, I had a colonoscopy which showed a polpy that was precancerous. I was refered to Cleveland Clinic where I saw Dr. Bo Shen (who is awesome). He did another colonoscopy which came back “indefinite for dysplasia” as did the ones I had from Michigan. Anyway, we just got back today for Cleveland. We went to talk to the surgeon, Dr. Remzi. I wasn’t impressed with his “bedside” manner, but I have been told that he is the best in the world. I am trying to wrap my head around this notion of having my colon removed and having to have a bag. If I could do it without the bag, I wouldn’t have such a problem. Anyway, I was just wondering if you would like to talk sometime with someone that is going through what you are (well kind of, we are all going through something a little different but with similarities). Either way, good luck with everything you will be facing. I know that it is terrifying.

    [Reply]

    avatar

    Colin Reply:

    Laminda, I had the JPouch surgery performed by Dr. Remzi at the Clinic in November. I’m currently awaiting surgery #2 of 3 and while I agree Dr. Remzi isn’t the most warm and fuzzy of doctors, he’s actually a very nice man once you get to know him. He cares about about his patients and there is no one…*no one* in the world who can say they’re flat-out better than Dr. Remzi at performing this procedure. My cousin was a Gastrointerologist at both the Mayo Clinic and the Cleveland Clinic (the two best in the country at JPouch procedures) and she told me that, were she in need of this procedure, she’d want Dr. Remzi doing it.

    [Reply]

    avatar

    Laminda Reply:

    The reason I went to the Cleveland Clinic is because of the surgeons there. Even though I didn’t like Dr. Remzi’s attitude, when I have this surgery, it will definitely be Dr. Remzi that does it. As long as he is the best, I can deal with the attitude…:)

    So when did you have your first surgery? What kind of prep did you have to do before it? How did you feel afterward? What kind of horrible things can I expect?

    [Reply]

    avatar

    Jackie Z. Reply:

    Laminda,
    I would love to talk to you more about Dr. Remzi and all this jazz. Shoot me an email and we’ll chat! jackiezimmerman [at] gmail [dot] com.

    [Reply]

  9. avatar

    Jen says:

    June 19th, 2011 at 3:38 pm

    Hi Jackie,
    My name is Jen and I’m an RN in Seattle area. I work with many people who are dealing with UC, and other GI disorders, as well as help with teaching and performing Ostomy care for them. I also come from a family with a long list of auto-immune disorders. I just wanted to say that it gets better and I think from what you’ve blogged, that you are making a good decision and it will really improve your quality of life in many ways. I wish you the best of luck with your surgery, and thank you for sharing your story.
    -Jen

    [Reply]

  10. avatar

    Successful Nonprofit Fundraising says:

    February 25th, 2012 at 2:34 pm

    Awsome…

    I saw this really great post today….

  11. avatar

    Wp Coupon Generator says:

    February 25th, 2012 at 2:44 pm

    This is Awesome…

    I Really Enjoy Your Site…

  12. avatar

    harmon green says:

    April 20th, 2014 at 4:12 pm

    Whispering Misty

    So sorry you may pass up the workshop!

Leave a Reply