I am Done! (with ulcerative colitis:)

Kira lounging in the pool cooling off

Kira lounging in the pool cooling off

I am a wife, a swim-mom to 3 awesome kids, and a teacher. I was diagnosed with Ulcerative Colitis in 1995. I am throwing in the towel against this disease. My surgical consult is on August 15th

Some more about Kira:

I am a so cal beach girl (although I live inland now) I will get back to the beach some day! I was a triathlete and runner before UC took over. I really want to run a marathon some day. I hate having an annual colonoscopy!

Symptoms of my Ulcerative Colitis:

urgency, bleeding, cramping, 6-8 poops a day (which is actually pretty good for me!). Fear of leaving the house – if that’s a symptom.

I am Done!

I wasn’t going to share my story because this site has helped me realize I am just like so many other people who suffer from UC. So, what changed my mind? I found myself looking for someone who has gone through the surgery closer to my age, just turned 49.

I had my first symptoms when I was in my early 20’s. But it was embarrassing to talk about and the tests were a horrible experience! So when my symptoms went away I was thrilled I wouldn’t have to go through any of that again! Or so I thought. About 6 years later my symptoms returned with a vengeance. I was hospitalized, diagnosed with UC, given IV steroids and blood transfusions. I was put on oral steroids and TPN for complete bowel rest for 3 months. It worked. I took Asacol as a maintenance med and followed some simple diet guidelines. For years I was in remission with a few small flares after having my kids (they think this was due to hormone changes). I even went off all meds for a few years.

Things began to change in 2007, a couple of years after I started teaching. I flared in the fall. My doctor at the time didn’t do anything. I kept to a simple diet. In 2008 I had a bad flare where I dropped 20 pounds in a few weeks, went to a new doctor and was put on flagyl, cipro, and prednisone. I had to take 5 weeks off work. I probably should have been hospitalized, but I am stubborn and with 3 kids I just didn’t want to. Soon, I began to have symptoms in the spring too. My doctor wanted to add injections, but my insurance wouldn’t approve it for UC. To be honest I was happy because I wasn’t sure about it. I became steroid dependent, so in 2011 I agreed to try Remicade. With little results, I was soon put on the max dose and my doctor suggested I consider surgery. No Way! Fast forward to 2013 – I took this past school year off to see if the decrease in stress and activities would make things better. Unfortunately, this year has been as bad as the others, maybe even worse. I will save you the boredom of reading all the things I am suffering from. But I will say I am fighting C-Diff for the 3rd time! In April, I was going 20+ times a day and I called my doctor in tears and told him I just couldn’t fight this battle anymore. He agreed and referred me to a specialist in San Diego.

I saw the specialist in May. After reading through my history he made the statement, “that’s a lot of medicine with little return” and I just completely broke down. I am so tired of this disease and all that comes with it. I want to go back to work – I am going back to work next year. I cannot be running to the bathroom in the middle of a lesson and leaving 30 kids in a class room. So I am going to do it. I was terrified of surgery and “the bag” before I found this website. But here I have found stories I could not find elsewhere on the internet; Positive stories of a better life. The only thing I couldn’t find is the positive surgery story of someone over 40 (sorry if it is there and I just didn’t see it). My surgical consult and surgery were supposed to be in June so I could recover over the summer, but I couldn’t get in until August. I am very hopeful things will go well.

Thank you Adam! (my middle son’s name by the way)

I am currently taking: lialda, uceris, Vit D, probiotic, remicade, iron, vancomycin (for c-diff) I think that’s it

Ask Adam:

Have you heard of people who’ve had to have an anal manometry? I don’t think I can do it! Is it just because I am old? (because we all have urgency and accidents right?)

written by Kira

submitted in the colitis venting area





16 Responses to “I am Done! (with ulcerative colitis:)”

  1. AdamJuly 18, 2014 at 4:44 am #

    Hi Kira,

    Great question about “anal manometry”. I myself had never even heard of that until reading and afterwards researching that phrase/procedure online. So no, I’ve never heard from anyone who has experience with that. However, of the nearly 1,000,000 people annually who use this site, I’d be shocked if there weren’t any other UC’ers who have experience with it. As for urgency and accidents, I for sure think you’re right. Don’t “normal” people have that stuff too, right:)

    I did want to let you know that there is another section of the UC site which is in its early days. It is soley for stories moving forward from people who have had surgery. It’s address is here:

    http://surgery.ihaveuc.com/

    So you can check that out for stories moving forward, as that’s where I post them. And, there was a story written from a previous UC’er who opted for surgery who has had success AND is over 40. here’s the link:

    http://surgery.ihaveuc.com/j-pouch-surgery-gave-life-back/

    So best of luck to you, I know c-diff can be an awful nightmare, especially when it comes back as it sometimes does (did for me too so don’t feel alone:)). But you will get through it. You might want to give a read up to this post I wrote a while back that was a Q&A session with two doctors, and much is talked about curing c-diff in an “unconventional way”… http://www.ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/

    Thanks again for posting, and I’m so happy you are making good use of the site.

    -Adam

  2. John A
    John AugustatJuly 18, 2014 at 6:41 am #

    Hi Kira,

    I am 40 and have been dealing with UC for 20 years. I have not had my colon removed so I’m not able to help with a “life after surgery” story. However, I do share your mental exhaustion of dealing with a long battle and am considering surgery at some point. I am steroid dependent after trying all three biologics without success (Humira, Remicade, and Simponi). I am so done with this disease, the medications, supplements, affect on work, family, friends, and all the other crap (literally) that is part of having UC. I have mentally prepared myself to having a bag and life after a colectomy. I am afraid of the risks involved with surgery, but quality of life is what’s most important. I wish you luck in your endeavor, as I am likely to follow your path in the next 2-3 years. Best, John.

    • Kira H
      KiraJuly 18, 2014 at 11:15 am #

      John, you sound like you are where I was few years back. I hope you find something to help you. Maybe with all the new studies and some new medications being created you will find something that works for you! When I met with the specialist I think he was going to try some new medication combinations, but I am past the point of “trying”. Good luck to you and thank you for your support!

  3. Richard BrownsonJuly 18, 2014 at 7:48 am #

    My specialist is now uttering the words of surgery. I was concern about wearing a bag for the rest of my life but she’s explain that they can re-connected the intestines and will only have to wear the bag for a couple of months while it heal’s. All this means is that your poo will never be solid but you may need to go 2-3 times a day which will be come your normal routine. She’s setting me up a consultation with the surgeon to talk through the procedure and go over concerns I have. I suggest you do the same and see what your options are. I’ve still got couple more options of other drugs if my liver can handle them, but I’m not so put off my it now.

    Lets us know how you get on this would like to know your comes.

    • Kira H
      KiraJuly 18, 2014 at 3:00 pm #

      Richard, I had the same concerns about the bag, but after reading so many positive stories on this website I believe it will be better than UC. I should be able to get a j-pouch but we’ll see what the surgeon says. I will take going 2-3 times a day – way better than the 8+ I go now.. on a good day! I will absolutely try to keep you guys up to date as I know it has helped me to follow the stories of others on here. Good Luck to you too!

  4. PauletteJuly 18, 2014 at 8:56 am #

    Hi Kira
    Sooo sorry for you and all of us!
    I am in San Diego and see a leading GI specialist for UC. In remission at present after a 8 month flare. He had me on Uceris, mesalamine enemas and Apriso.
    I’m scared also, and even in remission hate leaving the house as I still have diarehea attacks when under stress.
    Please keep us informed on your surgery decisions. My thoughts are with you!

  5. Kira H
    KiraJuly 18, 2014 at 11:20 am #

    Thank you Paulette! Are you seeing Dr. Sandborn? He was so compassionate during my visit. Glad to hear you are in remission!! I know what you mean about leaving the house, just getting in the car makes me nervous! Hang in there and enjoy your remission – positive feelings may go farther than you think.

  6. PauletteJuly 18, 2014 at 12:03 pm #

    Kira
    I am seeing Dr Person with Sharp. He is also very compaasionate and returns all my calls when I am in trouble.
    So lucky to live here with this great medical care given the situation.
    Stay courageous whatever your decision leads you to!
    Thank God they make adult diapers for those potential mishaps!

    • Kira H
      KiraJuly 19, 2014 at 11:43 am #

      I have not resorted to diapers yet..haha but I just might so that I can go zip lining on my trip! I just thought I would be 90 before I went there!

      • PauletteJuly 19, 2014 at 2:22 pm #

        Ha ha I I never had to “use” the diapers but on trips I have worn them, and thrown them out empty! I suppose I wear them as a “security blanket”. I have become sooo paranoid since I got this humbling condition!

  7. PatriciaJuly 19, 2014 at 4:39 am #

    Hi Kira,
    Our stories are almost a complete mirror image of one another with me a couple of years further down the line. …but I made the decision not to have surgery after postponing two planned dates!!! Fear of the unknown, as with you I had no same age, lifestyle etc reference. BIG mistake, the past two years have been a nightmare of hospital admissions for intravenous steroids and a terrible physical decline due to steroids that sees me housebound and 42.6 kg and too sick to have surgery now anyway. I can help with the anal manometry, the results of this test help make the surgeon decide your options as poor control here rules out the j pouch. Having ‘accidents’ does not mean the anal sphincter is not working! I send you all the very best luck from the UK and strength, courage and determination going forward with your decision and new uc free future!!

    • Kira H
      KiraJuly 19, 2014 at 11:42 am #

      Patricia – thank you for your support and information. Your story makes me very sad!It also helps me believe I am making the right decision at the right time. I hope somehow you find a way to get better!!

  8. kJuly 24, 2014 at 4:52 pm #

    Wish you all the best as you move to surgery. It cured me nearly 40 yeas ago, and I hope the same for you. UC is such a cruel condition. How anyone has the courage and stamina to live with / through a flare is beyond me.

    There is a series of almost 40 videos on YouTube (at: ucandpsc) of a guy about 40 who had 3 surgeries to create a j pouch in 2012/2013. He is very detailed and pretty open about every step along the way.

  9. Kira H
    KiraAugust 27, 2014 at 7:21 pm #

    Here is a little update from me.. I met with the surgeon on August 15th. She is amazing and really put me at ease – except for saying I may be off work for 2 months (that’s brutal fora teacher to hear). I am hopeful it won’t be that long and I can go back sooner. I also let her know I had this fear that when they take out my colon it will be fine. I think it is because I went back on prednisone to get through my vacation and the beginning of the school year – so I feel pretty good (for me) right now. Who goes through major surgery like this when they feel good? But she thinks there is no way just after hearing what I have been through this year. She was very surprised I hadn’t done this sooner. Good answer!

    Well the office called last week and I am scheduled for Sept 10th. I am excited and terrified at the same time. I truly believe this is the best move for me. But it is still a scary one. I cannot wait to get off the meds and hope the side effects will go away!

  10. PauletteAugust 28, 2014 at 7:41 am #

    Kira
    All my prayers and best wishes for you to feel wonderful and free!
    Please keep letting know of your progress in the coming months!

    • Kira H
      KiraAugust 28, 2014 at 5:31 pm #

      Thank you Paulette! I will do my best to keep the site updated. It helped me so much to read others stories.

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