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Kick UC’s…A!*&!

Intro:

My name is Tasha Cornett. I’m a 30 year old female from Northeast TN. I work in internal medicine and unfortunately know way too much about treating UC.

Tasha with her Fiance

Tasha with her Fiance

Some more about Tasha:

I enjoy running and eating delicious food. I spend most of my free time right now planning my wedding that will be this summer!! Woot woot!

Tasha’s Story:

I was first diagnosed at age 16. Took a couple months of asacol, got better, forgot about UC… For 11 wonderful years.
Then the mucus filled BMs started.

I had symptoms for a couple of months before I decided to see a GI. Finally had a colonoscopy which confirmed UC, only a small portion of my colon was affected at that time. I started taking Apriso. My symptoms continued to worsen. BMs were now super painful and I was losing a lot of blood. I left work (working in the ER) and drove to the ER near my house. My hgb was 6.1. Needless to say I was admitted.

So for the next two weeks I started IV steroids, abx, and bowel rest. I wound up with a PICC line and TPN for nutrition. When I left the hospital I weighed 82 lbs (pre admit weight was 105). I was started on Remicade after discharge and continued PO steroids.

I continued remicade for several months. I would go to the local cancer center for the infusions. Finally got used to the IVs, premedication which was 50mg of Benadryl, and basically sleeping the whole time. Remicade was not putting me into remission so Imuran was added. Still minimal improvement. I was now getting blood transfusions once a month. My GI suggested surgery but I wasn’t ready to go that route yet.

The remicade was discontinued, I then started Humira. The first time you use humira you have to inject yourself 4 times! Ah! It’s so hard to do that to yourself!! By this time my body was shutting down. I was working 12 hours shifts, getting blood on my days off, still taking prednisone (every time I tried to taper off my sxs became worse, it basically just kept me out of the hospital) and had awful side effects from all the meds.

I wound up having 2 skin cancers appear while taking Imuran. Also had an appendectomy and developed a DVT afterwards most likely secondary to my body being a giant ball of inflammation. My father passed away unexpectedly and I felt like entire world had came to an end. Depression is definitely not UCs friend. My BMs were now so painful that occasionally I was not able to hold them in. at that point I had exhausted conservative treatment and it was now time for surgery. My local GI referred me to Vanderbilt University in Nashville, TN.

Vanderbilt. How they have changed my life. I had another colonoscopy there bc there was some question of crohns vs. UC. They decided it was UC and also told me my colon had to come out… asap. I had a total colectomy Jan 15th and went home 2 days later feeling 100% better. The amount of energy I had was beyond words! Was it hard to get used to an ileostomy? Yes. I was very self conscious about it. My fiancĂ© told me over and over again it wasn’t a big deal… But I just felt like everyone knew, everyone could see it, and they were judging me…
I did get rather depressed but realized this is what was necessary for me to live and the ppl who love me could care less!

I called my ileostomy my “kangaroo pouch.” Became extremely comfortable with it, even cracked jokes about it…. Really funny ones. But of course I was ready to have it reversed! My condition and chronic steroid use caused me to have the J pouch surgery in 3 stages. Colectomy, diverting ileostomy with pouch creation, and then ileostomy takedown. My second surgery was August 14th. This was rather extensive so I spent a bit more time recovering. Luckily the third surgery could be done 6-8 weeks after the second so I had my takedown in October!!

Going to the bathroom was extremely painful at first. Your rectum gets sooooo raw. I still have days where I have quite a bit of pain but it’s nothing compared to what I had previously experienced. Also, after the takedown you have a pretty impressive hole in your abdomen! I have many scars and use Mederma like a full body moisturizer…but…I no longer take an entire pharmacy of meds, and I can go out in public without fear of an accident. I am so thankful for the amazing care I received and as cliche as it sounds I am just thankful to be able to be “me” again.

My first follow up appt since surgery is Jan 19th. I plan on going wedding dress shopping afterwards! My fiancĂ© and I have been engaged for quite some time and postponed our wedding secondary to all of the above events. I would also like to thank him for staying by my side and supporting and loving me through such a difficult time. I’ve been through a lot but I definitely still consider myself extremely lucky!

If anyone has any questions about any medications or procedures…or have any experiences they want to share feel free to contact me on Facebook!

and…..Kick UCs A$$




j-pouch, surgery

9 Responses to Kick UC’s…A!*&!

  1. Bev January 14, 2015 at 2:22 pm #

    That is definitely the ONE way to kick UC’s ASS!!!

    Good on you Tasha!!

    Enjoy your life now :)

    • Adam
      Adam January 14, 2015 at 2:44 pm #

      Amen Bev,

      Thanks so much Tasha for sharing your story and best of luck to you and your fiance with your lives. And BTW, super nice photo you shared!! great smiles you two:))

      –Adam

      • Tasha C
        Tasha C January 14, 2015 at 5:32 pm #

        Thanks for the opportunity! Thank you thank you!!

    • Tasha C
      Tasha C January 14, 2015 at 5:30 pm #

      That it is! Thanks for reading!

      • angelique May 4, 2015 at 8:08 pm #

        Tasha,

        You are such a strong, awesome person! I had the j-pouch surgery when I was 13 years old. I am now 24 & I still cant seem to live a normal life. The gas & gas pains/rumbles are still pretty bad and not to mention embarrassing. I have been taking lomotil this whole time which makes me very tired but it helps a little if I take it multiple times a day. Can you suggest any meds or diet changes that helped you after this surgery? Maybe you can let me know how your follow up went? My gastros keep telling me to keep taking lomotil and act as though I am lactose intolerant. Also, Adam if you have heard anything please feel free to chime in. :)

        Thanks!

  2. Caroline
    Caroline January 16, 2015 at 1:21 pm #

    Tasha,

    Great story – congrats on how well you are doing and your upcoming wedding! You will be a beautiful bride – best wishes to you! :)

  3. Kristin T
    Kristin January 19, 2015 at 9:14 am #

    Hi Tasha,
    Wow! You have been through a lot and have emerged strong! I’m sorry you lost your dad and especially while you were going through such a difficult time. Depression is definitely not UC’s friend and is worsened when the hgb levels are so low (I experienced this after getting a DVT late last summer). I am interested that you believe you got the DVT because your body was “a giant ball of inflammation”. I got a cortisone shot for a torn rotator cuff and subsequently got a DVT within 2 weeks. I was not even in a flare. However, for me, UC symptoms manifest themselves in inflammation everywhere from my sternum area (costochondritis) to my tailbone. This went on all fall while I was on aspirin therapy for the DVT and has only subsided in the last week as I am 2 weeks into a CLEANSE- no sugar, no dairy, no coffee, no alcohol, no nightshades. Tons of awesome vegetables, oily fish, all the good stuff.
    I would be interested to know from you, or others who have experienced this “ball of inflammation” feeling if the removal of your parts ends the inflammation or, will you continue to experience the side effects of inflammation without your colon?
    Congratulations on your upcoming wedding- how wonderful you are to have found such a great guy! I’m a Knoxville neighbor of yours!

  4. Ken January 14, 2016 at 6:48 pm #

    Great story and info. How are you feeling these days? Experiencing any issues? Any dietary restrictions? Pain? The first of my 2 surgeries will be in less than 1 month. Thank you!

    • Tasha C
      Tasha January 14, 2016 at 7:19 pm #

      I’m doing well! I look back at the past and cannot even believe that was my life! My follow up appts went great and I was told to follow up with my surgeon as needed. I will continue to see a local GI.

      I will be honest and say there are still some times where going to the bathroom is painful… 80% of the time it’s my fault. Like eating popcorn… Obv that’s not going to be great but I friggin love Smart Food white cheddar….. Downside is it definitely feels like glass shards coming out of your bum!! Also, anything with the slightest bit of heat to it… Burns burns burns!! Some things don’t digest too well so try not to freak out! I had black rice the other day and let’s just say it came out the exact same!

      Ok… Enough gross stories. There will be intermittent irritation as there is what they call a “cuff” (a small portion of your diseased rectum which your j pouch connects too) So you can still have flaring at that area… You might have very small amounts of bleeding from this area but nothing severe enough to need transfusion.

      Finally, I did get pouchitis once, but it resolved quickly with oral Cipro. Again, that’s only happened once since my surgery.
      I’m so excited for you to begin this process… It’s a long road but it is so worth it!! Wish you the best!!!

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