ulcerative colitis ebook

About to Become J-Pouch Jackie

That's me!

That’s me!

Meet Jackie:

Hello my name is Jackie and I am 30 years old. I am a 8th grade Science and Engineering teacher and I love my job even though UC is making it harder to do every year because you can’t just up and leave a class of 31 hormonal 13/14 year olds lol! I have had UC for about 9 years and it is getting worse and worse! I am grateful to have a wonderful and supportive family to get me through all of this because without them I would be lost!

Some more about me:

I absolutely LOVE exercise, working out and being outdoors! So I guess that it is nice that I live in WA because there is a lot to do outdoors! But as you can imagine UC gets in the way of my activities all the time! I am sick and tired of being sick and tired and really sad that my body isn’t in the shape it used to be or could be because of this stupid disease!

Oh and I LOVE my cats! Yep call me the crazy cat lady!! I have 2 Bengal cats Pete and Stanley and they are like my kids!

My Colitis Symptoms:

Right now believe it or not I have very little symptoms thanks to Humira and Azathioprine (maybe I shouldn’t be thanking them because they are destroying my body)!!! My hair fell out, I have acne, abscesses, extreme fatigue, severe joint pain a few days before my next dose of Humira, memory loss, a white blood cell count that is too low…just to name a few!

Becoming J-Pouch Jackie

Here is my UC history in a nut shell, and yes that is how I feel trapped in a nutshell lol:

1/2004 first time with blood and D! 3-4cm of inflammation from rectum up.

10/2006 4-5cm of inflammation from rectum up. Ulcerative Proctitis.

3/2008 4-5cm same as before but this time it was a little more stubborn!

06/2009 10-13cm from the rectum up and this flare was a little worse. Definitely UC.

5/2012 – Took antibiotics and got a C-Diff infection. They put me on Flagyl then Vancomycin. I still wasn’t getting better! I actually thought I was going to die! I was having bloody D every half hour and throwing up foam! I dropped 30 pounds in a couple weeks and my mom took me to the hospital! They ran TONS of test, the C. Diff was gone but my whole colon was in a horrible flare! They even tried to do a colonoscopy and couldn’t because as they said, “It looked like ground hamburger”!

To make a long story short its been a LONG and DEPRESSING year! I was put on Prednisone, Remicade and Azathoprine. They took me off Prednisone so I wouldn’t become dependent and told me if the Remicade and Azathoprine failed I would need surgery. Well the Remi and Aza combo didn’t work and they wanted to try Humira as a last resort and it is working for the most part (even though it seems like some symptoms are coming back slowly) but I hate being on Humira and Azathioprine the side effects are awful and I am on the highest doses! I am 30 they tell me I will need to be on these for life, how is that possible? Also, how can suppressing your immune system be a safe thing to do for a prolonged period of time?

I have tried it all including diet, probiotics, even these yucky meds and have scheduled a 2 part j-pouch surgery for June. I have had every test under the sun to make sure it is UC and not Crohns. I also have always had inflation from the rectum up which is another sure sign of UC and not Crohns. They tell me I will probably lose my colon eventually either due to failing meds (I am on the last meds before surgery), colon cancer or a flare we can’t get under control. I wish I could just stop taking my meds and be ok but I have had several opinions and they tell me that if I quit taking my meds I could flare quickly and be in worse shape than my previous flare and I NEVER want to feel like that again!

I hate having to make the decision between meds and surgery but the meds are SCARY!!! The side effects I am having already are depressing and scary. I just don’t feel like myself any more and I just want my life back. I am just looking for some insight and kind words. Deciding between meds and surgery makes me feel like I have to choose between being able to see or being able to hear, not an easy decision and definitely not a decision I thought I would have to make at 30!

My Medication History:

1/2004 3-4cm of inflammation from rectum up, gave me Mesalamine.

10/2006 4-5cm of inflammation. Developed allergy to Mesalamine this time around (rashes up and down both legs). Entocort and Hydrocortisone suppositories.

3/2008 4-5cm again but this time it was a little more stubborn! Tried Entocort and Hydrocortisone didn’t work, went to prednisone and it cleared up flare.

06/2009 10-13cm this flare was a little worse. Took prednisone but took months and increasing doses to get it under control! This is where I learned to hate PREDNISONE!!!

5/2012 – UC in all of my colon thanks to C Diff! Prednisone, with Remicade and Azathioprine. Finally, Humira and Azathioprine 175mg :-P

written by Jackie

submitted in the colitis venting area





27 Responses to “About to Become J-Pouch Jackie”

  1. stephanieMarch 7, 2013 at 10:46 am #

    Hi Jackie, I am exactly where you are in the process of making a decision. My heart goes out to you, this is the toughest thing I have ever had to go through. I too, am sick of the meds and their side effects and sick and tired of being sick and tired. I think it is so difficult for others without the disease to even imagine what we go through. Please post updates as to how you are doing and I will try to do the same. Education and sharing information really helps. Take care and good luck. :)

  2. Anna in DC
    AnnaMarch 7, 2013 at 10:52 am #

    I would HIGHLY suggest you schedule a phone appointment with dr. Cowan – it’s going to be expensive but it will be so worth it. Saving your colon if it can be truly healed would be wonderful for you!!! http://fourfoldhealing.com/

    • JovanaMay 2, 2013 at 9:06 am #

      Hi Anna,
      Did Dr Cowan help you with your UC?

  3. JasonMarch 7, 2013 at 11:21 am #

    Jackie,

    I was diagnosed last year and my UC got so bad that nothing worked, not even Remicade. I had the jpouch surgery and couldn’t be happier! The first few weeks after each surgery is definitely rough but it gets better very quickly. I am now two since takedown and feel great! I would definitely recommend it! Good luck!

    Jason

  4. Lisa OH
    Lisa KappMarch 7, 2013 at 11:34 am #

    Hi Jackie. I was diagnosed w/pancolitis Dec 2011, tried all the drugs, including Remecaid. Nothing worked & my colon became toxic, so out it came in Feb 2012. I had to have a 3-part jpouch surgery b/c I was so, so sick. It’s been a long haul and extremely tough at times, but I have to say that my jpouch works well, and it’s MUCH better than being on all the scary meds. Good luck to you!

    Lisa

  5. BarbMarch 7, 2013 at 11:44 am #

    Hey Jackie,

    I told all know all about your symptoms right now I am dealing with the c-diff situation. I am in day 9 of the antibiotics and hoping this all clears up soon.

    However, did you look into the Fecal Transplant? The doctor wants to put me back on the steroids and start Imuran but not sure if I am going down the route. I started taking probiotics and L-glutamine. So I am going to give this a shot and see if this helps. If not seriously looking into the Fecal Transplant.

  6. Lisa OH
    LisaMarch 7, 2013 at 2:10 pm #

    I’ve had cdiff 4 times. My GI is going to do a fecal transplant if I get it again.

    • BarbMarch 8, 2013 at 7:39 am #

      Hi Lisa,

      FOUR times !!!!!! OMG!!!! I can not imagine getting this again. Did the Flagyl work or did they have to put you on the other one?

      • Lisa OH
        Lisa KappMarch 8, 2013 at 8:50 am #

        Barb,

        I’ve always been put on Vacomycin, which makes it go away, but obviously does not keep it away. I was on IV flagyl in the hospital a couple of times a while back

        • BarbMarch 8, 2013 at 9:02 am #

          Yes that is the Dr’s next move (switch to Vacomycin) I have 5 more days left on the Flagyl I am still having direahea and blood it has slowed down but not completely gone…..does this sound like the flagyl is working?

          • Lisa OH
            LisaMarch 9, 2013 at 4:48 pm #

            Nope. You have been suffering way too long!! I wonder why they kept you on that for such a long time. It doesn’t seem right

        • BarbMarch 11, 2013 at 2:16 am #

          I am now in the hospital they are giving me that now along with potassium and liquid steroid.

          I just couldn’t take to anymore but I am starting to feel better :)

  7. Jackie
    JackieMarch 7, 2013 at 4:52 pm #

    Thank you so much for all of your kind words and input! It means so much to me to know that I am not alone. It is so scary to go through what we have to go through and I wouldn’t wish it on my worse enemy! I will make sure and keep you up to date on what happens with me. This web page is such a blessing because it isn’t just negative stories but positive stories with real people and real suggestions.

    As for my c-diff I was also told that if it ever came back they would do a fecal transplant at UW medicine in Seattle because it it out of the trial stage and has had 100% success rate for c-diff but unfortunately not for UC :(

    I am so done with this disease! It is such a pain in the butt….in more ways than one lol!

    • geaMarch 9, 2013 at 3:19 pm #

      i love you Jackie i told your mom you are the strongest girl i know your mom should draw strength from you you got an abundance of it. we’re all praying for you me, uncle chuck & nanna oxox

      • Jackie
        JackieMarch 10, 2013 at 11:53 am #

        Thanks Gea!!! Your words means so much! I try to stay strong but trust me some days I am far from it! I just know that God has a plan for me and that I have to trust him :) I am blessed with family like you to help me through it :) I love you! Uncle Chucky and Nana so very very much xoxoxox I

  8. SarahMarch 7, 2013 at 10:49 pm #

    Love you Jackie! And your amazing personality

  9. FrankMarch 8, 2013 at 12:31 am #

    Jackie, you know I’m there for you. You are one of the strongest people I know. To get up everyday and surround yourself with germ infested kids each day knowing that you essentially have no immune system is impressive. I know that I can’t know what its like but I definitely feel for you and as your friend, will be with you every step of the way.

  10. Nikki in Chico
    nikkiMarch 8, 2013 at 2:54 pm #

    Hi Jackie,

    Wow, you are beautiful and sweet and it is a tragedy that you have this tough decision to make. I have had UC for 16 years and have thought about surgery many times. It’s funny, when I was first diagnosed they told me my colon looked like hamburger too! What is with this disease? There is a root to what causes it. It can’t be just stress because little kids get it!

    Recently I changed my diet by cutting out starches and sugars and most milk. Basically I have eliminated everything that is suggested by the SCD to eliminate, except half&half. Gotta have that in my coffee. I bought the Yogourmet yogurt maker and started making my own yoghurt. I have been eating a 1/2 cup of it every day.

    What made me decide to change my diet was the fact that I was having a flare. I hadn’t had a solid poop for months even though I was on 6mp and Colazal. All that was coming out of me was mucus and blood. The cramping was terrible!

    I found this website and read up on how the SCD has been helping so many people. After about two weeks on my new diet my symptoms had really improved! I have been on the diet for about seven or eight weeks now and my symptoms are almost gone! I am confident that within a week I will be COMPLETELY back to normal. The blood is totally gone. All I have now is a tiny amount of mucus and very mild pain. I do hope that everything works out for you. I just thought I’d share my story because I am amazed at what the SCD has done for me. I know you said that you tried diet. Did you try the SCD?

    Fecal transplant would be my own personal next step, before opting for surgery. Everybody has a limit as to what they are willing to put up with. I am hoping that they find a non-surgical cure for this disease, and soon!

    Good luck.

  11. Jackie
    JackieMarch 9, 2013 at 5:22 pm #

    Thank you Sarah!

    Frank what would I do without you! I am totally lucky to have my BFF also be my coworker :) you have always been a great friend and for that I love ya!

    Nikki you’re so kind! Yes surgery scares me but I have tried it all throughout the years and now even when I try the SCD diet I have no idea if the meds are helping or if its my diet? But I am told not to go off the meds because I will flare like the last one or worse and I can’t imagine anything worse than my last flare. I honestly thought I was gonna die and so did my family. So I’m in a pickle!

    Eating healthy is a must for us UCers anyway! Even with my meds I can’t eat certain things and have triggers that will “flush” me within minutes! For example I can’t eat anything spicy! Not even a hint of spice or I am sick!

    Oh the joys of this disease lol!

  12. Ann mareeMarch 14, 2013 at 10:45 am #

    Have any of you guys tried mercaptopurine? I was allergic to everything for uc then I tried these which were prescribed by my doctor, and I recommend they are worth a try xx

  13. JApril 7, 2013 at 4:24 pm #

    Hi Jackie,

    I just had semi-emergency surgery for UC a little over 2 weeks ago, so right now I’ve got an ileostomy with the bag, but can have the J-Pouch done in the future if I choose to. So far, I’m feeling a thousand times better than I ever did before surgery. I’m a 29 year old male, diagnosed in January 2012, but had symptoms of UC since March 2011.

    Best wishes to you in the future.

    • Jackie
      JackieApril 8, 2013 at 9:00 am #

      Hello J!

      I am sorry to hear you had to have emergency surgery, I bet that was scary! But the good news is that you are done with the scary part and are now UC free! It only will get better from here on out! So glad that you are feeling better! I am scared to get my colon out but know that it has to be done and I am ready to take that sucker out and move on! I want to live my life to the fullest and am grateful that I have the opportunity to live in a time and place that surgery is an option! I hope you continue to feel better each day! Best wishes to you too!!!

  14. Emie
    EmieApril 7, 2013 at 5:35 pm #

    Hi Jackie!! Well I am so excited for you to have this surgery. I too live in Washington State, and now it is so nice to get out and enjoy its beauty again!! I had my surgery done at the UW by Dr. Sinanan, he is AMAZING!! I had my first surgery Dec 19th and my take down March 9th, life is great now! I battled the disease for 9 years always hoping and praying that some miracle would happen and I would be cured, well surgery has been that miracle. I too had tried literally everything with little to no success. This has given me my life back and I am so happy for you to get yours back too. The bag isn’t so bad, my best friends and family actually would forget that I had it so I’m sure no strangers knew I had it. I finally went on the big Ferris wheel in Seattle because I can now!! No way would I have gone up in that before surgery!! Best of luck to you, if you have any questions let me know!!

    • Jackie
      JackieApril 8, 2013 at 8:57 am #

      Hello Emie!!!

      Thank you for the nice message! I am so excited that you are doing so well and your story and message give me hope and help me see there is light at the end of the tunnel :) I am having my first surgery on June 10th and I am counting down the days! I am ready to be done with UC and all of the meds! I have been wanting to ride the great wheel as well and you have inspired me to get out there and do it!!! If I have questions I will definitely let you know!!! Best wishes to you and your new jpouch!!!

  15. BarbMay 3, 2013 at 8:20 am #

    Just checking in on everyone….How are is everyone doing these days?

    I am doing much better finally out of the hospital on the steroids and ascal able to finally eat something. Drinking some ensure Milkshake to get the muscle tone back that I lost.

    Hope everyone is doing well =)

  16. Mike from Ohio
    Mike HJune 27, 2013 at 9:33 pm #

    Has anyone heard how Jackie is doing. She should be about 3 weeks post surgery?????

    Mike

    • Emie
      EmieJuly 12, 2013 at 5:47 pm #

      Was wondering the same thing……….Adam?

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