Making Peace with Ulcerative Colitis – March 19th Surgery

jpouch surgery

Introduction:

Hola! My name is Isabel! I was born in Mexico City but raised in the Bay Area (California). I am a 29 year old female, I was diagnosed with Ulcerative Colitis almost five years ago after giving birth to my beautiful son.

Symptoms:

Since I am tapering off of prednisone, the only symptoms I have are cramping.

Getting Ready For Colon Surgery:

I have been thinking of sharing my story for a long time. But, honestly I didn’t know if I could put into words what it has been the last five + years…

I was 25 years old 5 months pregnant when the “symptoms” started. It was Christmas day 2006 when I first saw blood in the toilet. Being pregnant (and having had two miscarriages prior) I got really scared and immediately went to the emergency room. I followed up with my OBGYN the following day and he prescribed me fiber thinking it could be constipation. Symptoms started occurring, at the time I thought they were just part of the pregnancy. Urgency and bloody diarrhea along with constipation became more prominent. My son was born 4 weeks early. My body seem to go back to normal after giving birth for a few months. Until, I went back to work. The stress from the new baby, work and life in general brought on a flare. I was admitted into the hospital. I had a blood transfusion and a colonoscopy. Diagnosis:Ulcerative Colitis.

At the time for one reason or another I was in denial. I thought that whatever I had It could be controlled, it had to be controlled. I was young, and in my mind young people don’t get chronic conditions. All of my energy and attention was concentrated on my son. When I was with him nothing else mattered, I didn’t matter. I felt great! Prednisone was the greatest thing ever! Or so I thought! Until… We discovered that after tapering off I became ill again. going to the emergency room several times… reality hit! UC was here to stay and wasn’t going anywhere. I found myself in this viscous cycle, I felt trapped and alone. I have lost count of the times that I had to be in the emergency room due to my symptoms. I build a love and hate relationship with prednisone. 5 years later present day, with countless trips to the ER 3 hospitalizations, I started remicade (had one infusion in December 2011) and I am faced with surgery on March 19, 2012. To this day, it has been the most toughest decisions I’ve had to make in my LIFE!

Ulcerative Colitis has changed my life incredibly. It has affected all aspects of my life. And that is why I am putting all my hopes in the Jpouch surgery. I want my life back! I am sick and tired of feeling sick. I am tired of living with the uncertainty, the depression the loneliness. Tis disease has taken 5 years of my life. It has taken time away from my son. It has stolen the opportunity for my son to have a sibling. Although, I have a wonderful husband who has been there for me in every step of the way I don’t want to continue like this!

I have UC but IT does not have me.!

On the positive side, UC has taught me that I am really lucky. That I have my soul-mate by my side who has been there for me and our son. That I am strong. That things happen for a reason. That after what I have been through, nothing seems impossible. That life is full of challenges, you take them and move on to the next one. That living with uncertainty makes you cherish the littlest things. That life is a B#&$ but I am a bigger one! (Literally with prednisone I have gained so much weight haha) For those who are out there, recently diagnosed or who happen to read my story. I want you to know that you are not alone. We are in this together. I have hope that soon someone will find a cure!
That I admire each and everyone of you because I know how hard this disease can be. And together let’s spread awareness. So we can start talking about poop without being so ashamed of it. Everyone poops!
Now my next challenge is surgery. I am scared to death. There’s days when I wake up and I ask myself if I am making the right decision. But, I have to make peace with UC. It has been my best friend for way too long.I hope everyone out there keeps me in their prayers on the 19th, because the power of prayer makes miracles happen!

“Waiting for the rainbow after the storm…”

written by -Izzy

My current Ulcerative Colitis medications:

Tappering off Prednisone before my surgery, currently on 5 MG
6 MP
1 Infusion of Remicade
Multivitamins

29 Responses to “Making Peace with Ulcerative Colitis – March 19th Surgery”

  1. AdamMarch 10, 2012 at 8:48 am #

    Isabel, you are so inspirational, amazing, and for sure you are going to have an awesome and incredible life coming up soon! I wish you the very best, thank you so much for sharing your beautiful story,
    Muchas gracias,

    Adam

    • Isabel
      ISABELMarch 12, 2012 at 7:28 pm #

      Thank you Adam! Really, thanks for the opportunity to share my story. It was sort of therapeutical actually. Thanks for the great wishes! I will keep you guys updated on my new journey!

      • AdamMarch 13, 2012 at 1:19 am #

        Good Luck Isabel!!! Will be thinking of you bigtime over the next week! Take care, and thank you!:) for sharing

  2. LizaMarch 10, 2012 at 11:45 am #

    Good luck and best wishes for a speedy recovery! I’m sure youre looking forward to a greater quality of life.
    I’m sure that is a hard decision, as I know, it has also been presented to me. I’m hoping Remicade will work; I’ve have 2 treatments & will have the 3rd on Tuesday. I’m tapering off Prednisone & the symptoms are returning which is having me worry. But I’ll cross that bridge when I get there.

    • Isabel
      ISABELMarch 12, 2012 at 7:31 pm #

      Liza: Thank you for the wishes and for taking the time to read my story! Yes! It was a hard decision. I only had one infusion of Remicade and decided to go forward with surgery. I just have a feeling that I would be making this decision sooner or later. I rather do it now and end my mysery. Wishing you stay on remission best of luck with Remicade!! ;)

  3. AliceMarch 10, 2012 at 1:40 pm #

    Good luck! I will send you “Distant Reiki” if you know what that is, prayers and good vibes during my meditation as well. Believe you are getting bathed in warm cascades of brilliant healing white light!! :D I’m not going to wait until the 19th.. sending the love right now! –That is Saturday March 10th 3:30 Ottawa Ontario time! I think 12:30 your time. And if anyone else ever needs it, just ask!
    Peace and Love, :)
    Alice (massage therapist and Reiki Master)

    • Isabel
      ISABELMarch 12, 2012 at 7:35 pm #

      Alice: Thank you for reading my story! And thank you soooo much for the good vibes and the love!! Feeling it already.. I have been very anxious and nervous at times. I will be thinking of the healing casacades during my meditation tonight! Hugs!!

  4. BevMarch 10, 2012 at 4:41 pm #

    That was very beautiful, Isabel…and I think surgery can always be the ‘right’ decision. You just have to make it so.

    Cheers, and all the best…I admire any of us who choose to say goodbye to this disease!

    Bev, in Canada:)

    • Isabel
      ISABELMarch 12, 2012 at 7:37 pm #

      Bev:Thanks for the compliments and for taking the time to read my humble story. And yes you are right I WILL MAKE surgery THE RIGHT DECISION! All the best for you as well! ;)

      • JonathanMarch 15, 2012 at 3:10 am #

        Isabel, how many stages will you be having the surgery in?

  5. AiyeshahMarch 10, 2012 at 5:31 pm #

    Hi Isabel,
    Thanks for writing about your “rollercoaster experience” with UC so far and sharing it with us!
    I think that we all know ,here on this website, the exact meaning of every single word you wrote!
    …but,although we all live side by side with UC, every time I read about somebody else’s experience, it’s as if I learned something new…as if it gave me a new awareness and a new strength to carry on!
    Thank you so much!

    A big hug…I’ll think of you on March 19th! Good luck!

    xoxo

    • Isabel
      ISABELMarch 12, 2012 at 7:41 pm #

      Hi Aiyeshah! THank you for the good wishes! Yes! Reading your guys’s stories has given me inspiration and strength to go forward with surgery! I will keep you guys posted… hoping I can inspire others to say good by to UC as well ;) .. Hugs!

  6. RhondaMarch 10, 2012 at 7:28 pm #

    I wish you the best of luck Isabel! March 19th will forever change your life and you will celebrate the new life that you begin that day. Feb 2, 2012 is that day for me. The amount discomfort I felt before the surgery was more than I felt a week after the surgery. Right away I knew that the pain I felt after surgery was different It was due to the colectomy and end ileostomy open surgery. Unfortunately I don’t have a ‘virgin abdomen’ (I’ve had 2 laproscopic surgeries and delivered 5 children vaginally) so I have to have 3 surgeries. I still have my rectal stump and need to lose 50 to 60 pounds because in the last 16 years of seeing multiple drs. and being on multiple medications I gained over 100 pounds. The years on Remicade were the best ones. I had built up antibodies to it an was having several side effects that made the decision to stop and have the surgery easier. I was scared to death and unsure but I can tell you from this side I have no regrets. May everything go wonderfully for you!

    • Isabel
      ISABELMarch 12, 2012 at 7:45 pm #

      Rhonda!!

      Thank you so much for your comment.. You have noo idea what it means to me. THe number one reason why I decided to go forward with the surgery is because there’s no certainty that Remicade will work for me. ANd if it does I don’t know for how long. I didn’t see a reason why I should continue to put my body through more and more torture, if eventually I would be getting the surgery anyway.! I wish you the best of luck with the new challenges you are facing! I am sure it’s rewarding to know that at least UC is not one of them! Hugs!

  7. AimeeMarch 11, 2012 at 2:18 pm #

    Wishing you the best of luck Isabel! Praying you get through your surgery with no complications and you recover quickly:)

    • Isabel
      ISABELMarch 12, 2012 at 7:47 pm #

      Aimee! THanks for the good wishes! I will be needing them. ;)

  8. JoanneMarch 11, 2012 at 3:34 pm #

    Good luck Isabel. Praying that surgery goes well and a speedy recovery. Please keep us posted on how you are doing

    • Isabel
      ISABELMarch 12, 2012 at 7:49 pm #

      Joanne:

      Thanks for the good vibes and wishes!! I will keep you guys posted! That’s a promise!! Hugs!

  9. James
    JamesMarch 13, 2012 at 5:20 am #

    Hey Isabel! I read your story and know how you feel about this @#$% disease! UC has drastically changed my life. I have been diagnosed with this disease since 1993 and have been “dealing” with it ever since.

    Sometimes I feel that I am going insaine because of this condition. I do not enjoy life as much as I would like to. I try to stay active, but with UC it sure feels like it is holding me back in many ways. I just would like the panic attacks to go away when I am out and about. I just am afraid that I will get hit with my symptoms in the most inoportune times.

    I know that this must have been a huge decision for you and I don’t blame you a bit. I too would like to get my life back. Who knows….one day I may have to have the same procedure done in order to get my sanity back!

    Good luck and keep us posted!

    • Isabel
      ISABELMarch 13, 2012 at 11:11 pm #

      Hi James!!

      I totally understand how you feel. I also feel like I am loosing my sanity.I didn’t mention it in my story but I haven’t been working for the past year and a half. I hate being a burden to my husband/family. I used to be very independent. It put me through a big depression. That is why I decided to go forward with this surgery. I have a five year old that needs his mommy. He is my inspiration and my strength to keep going forward. ;)

      I am so sorry that you have been dealing with this terrible disease for sucha long time. I hope you go into remission soon so that you can enjoy life again. Or perhaps try to find your inner strength to go forward with surgery! Perhaps that’s the answer! I found that breathing excersices helped my panic attacks! ;) I will keep you guys posted! Wishing you all my best!!

      Izzy! ;)

  10. pernitaMarch 15, 2012 at 1:39 am #

    Hi Isabel,
    I am pernita from India , am 39 years old and had U.C for 3 years of my life. i understand how you cross your fingers each day to face a it to be normal .i have two young kids too. i had my colostomy(surgery) done 10 months back. and trust me when i tell you that you will never regret it. I have my life back finally . i am taking care of my family the way i used to. things will go back normal.you are brave as you have faced the worst days from last 5 years. ITS TIME TO COME OUT OF DARKNESS. if you feel like asking or sharing any thing , am here for you. my email address is pernitasuri@gmail.com. Wishing you the best of luck Isabel! Praying you get through your surgery with positive healing.all my wishes are with you.

  11. CatherineMarch 15, 2012 at 6:05 pm #

    Good Luck with your surgery. I think you will be surprised how much better you feel. My 19 year old daughter had her first surgery 7 weeks ago. She feels SO GOOD! I wish the same for you!

  12. AmandaMarch 18, 2012 at 12:50 pm #

    Good luck, really hope it goes well. I am partly envious and partly not! Having had this disease since 2007 I am at the point of wanting to have surgery myself. Even if it means having a bag for the rest of my life I think that would be better than never knowing whether I am going to make the train journey home, or able to take the dog for a walk when there isn’t anywhere to go on the way!

    I’d love to know whether people get the same symptoms in that you can be relatively ok during the day, ie only going about 6 or 7 times but then up several times in the night? It really frustrates me that I am up at night so much because I am sure sleep is a great healer.

    Anyway, I wish you luck, my specialist won’t even try infliximab on me as he says it just probably won’t work for me. Am currently on methotrexate and just come off the steroids. I felt like I was getting better but considering I’ve been on it for over 6 months I don’t feel I am doing well enough. Its so easy to forget.

    Anyway, keep us posted, will send some Reiki healing your way tomorrow. And to anyone in the UK, I live in London in Balham and do massage and reiki and the Bowen technique and am happy to give a free treatment to anyone with UC as it would be great to swap stories.

  13. AmandaMarch 18, 2012 at 12:51 pm #

    Oh my website is http://www.amandarileytherapies.co.uk feel free to contact me. Cheers. Amanda

  14. Joseph
    JosephMarch 18, 2012 at 2:51 pm #

    I just want to say how excited I am about your big day tommorrow! Im sure you are nervous but ready to be normal. I’m meeting with a surgeon soon to get my surgery plans together. I can’t wait to hear all about it!! God Bless!!!!!

  15. AdamMarch 19, 2012 at 7:24 pm #

    Hey Isabel,

    Been thinking of you all day, I hope all is going well, and you are feeling SOOOO MUCH BETTTTTER!!!!

    Congrats on making it through, can’t wait to hear how you are doing:)

    Adam

  16. KellyMarch 24, 2012 at 9:51 am #

    Best of luck to you Isabel – I hope all went well with your surgery!

  17. AmySeptember 8, 2012 at 2:23 pm #

    Good luck with your surgery! I hope it makes you feel better! It sounds like you’ve been through a lot with your UC.

  18. JayneSeptember 9, 2012 at 11:29 am #

    As a UC sufferer for 30 years, refusing removal surgery three times and consuming handfuls of pills each day to control, never going too far in fear of lack of a restroom, road trips ugh! I did find relief from a product. What medicine couldn’t do for me in 30 years, this natural product fixed me in a year, have not had UC episodes in four years now. There is hope, comes in a can. Also when you have UC or stomach/intestinal disorders you tend to lack absorption of B vitamins, B-12 and B-6, esp. in pill form, liquid better…so be aware and have your dr. check your vitamin levels, this can cause you further problems with issues and nerve stuff. I can share the different things I use that helped me get beyond the suffering if anyone wants some resources for this horrid disease. Helps with Crones too. jeventbox@gmail.com Good luck, I feel for you.

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