Halfway to the Rainbow – Surgery on Monday

Isabel before take down surgeryIntroduction:

Hi Everyone! It’s Isabel! I shared my story back in March 2012(Making Peace with Ulcerative Colitis) and I am just checking in with you with an update! If you haven’t read my story I was diagnosed with Ulcerative Colitis in 2007 when I was 25 years old. After being on Prednisone for almost five years off and on and after getting one infusion of Remicade I decided to go forward with Surgery….

My Story with Colitis Surgery and What’s Next:

Rewind to March 19, 2012. A day that has changed my life for ever. I was a bit nervous but determined to do everything in my hands to have a better quality of life. The surgery that was supposed to last 3.5 hours lasted almost 7 hours. Yes! and this was only the beginning of several complications that came with my life changing decision. The team of surgeons found that my small intestine was 3 cm too short and that my pelvic area was very narrow. Needless to say that a Laparoscopic surgery was out the door and was stuck with a “C” section incision along with another one that ran up to my belly button. (4 Months later I found out through my surgeon that I would of been stuck with an Ostomy for life). Luckily they were able to stretch my small intestine to create my J-Pouch. Two days later I went back to the OR, unfortunately during the very complicated surgery my amazing Surgeon accidentally nicked my left Uterer. A stent(SP) was put i n and a catheter was installed. I was in the hospital for TWO weeks. Went home with a catheter and a Ileostomy. Feeling relieved to be home with my son gave me hope that all the pain and suffering was worth it. After my initial surgery I was hospitalized FOUR more times. For different reasons. Wound infections, renal failure, urinary tract infections etc. Thanks to our Wonderful Drug Prednisone and because I had taken it for so long, I had a hard time healing. For a month I had to carry a “wound Vac”, it’s an amazing therapy that facilitates healing. I never thought that the transition to the Ileostomy would be so easy .

Now, after two Pouch dialations and one anal resection (I believe this is what is called, is a procedure where they widened the end of my pouch taking some scar tissue out and stitching it so that it stays dilated) I am ready for my take down surgery on Monday September 10, 2012. To be honest all the pain, the tears and the endless nights have been WORTH IT! Yes! I had a hard time! Yes! There were times when I doubted myself! Yes! there were days when I wanted to die because the pain was soooooo bad! But never once did my husband left my side. He was always there. He has been my #1 cheerleader. I have found that I have amazing friends and a wonderful family. And for that I am thankful! I am here to tell you my journey.. It has not been an easy one. But thanks to my determined team of surgeons, my family, friends and even strangers I have been able to overcome any obstacle that has been put in my way. I have one last obstacle before I move on. THE TAKE DOWN! And I will accept the challenge with a smile. To be continued…..

Where I’d like to be in 1 year:

I would like to be working. Enjoying life with my family, planning our vacation to the Beach!


Multivitamins! Yay!!

written by Isabel

submitted in the colitis venting area

16 thoughts on “Halfway to the Rainbow – Surgery on Monday”

  1. Isabel,

    You are one super inspirational person, and I can’t thank you enough for sharing an update to you original story. You’ve been through so much already, and in such a short amount of time, you’re going to be able to move past all this and get on with your life and planning an awesome vacation to the BEACH!!

    I hope that your story rubs off on a ton of other UC’ers who are wondering about what can possibly happen with surgery as the ultimate treatment for the disease, and although its not always easy, its great to know that you are keeping your eye on the prize and moving through. BEST OF LUCK TO YOU MONDAY!! Gonna be thinking of you until we hear from you again.

    Feliz Vida Nuevo despues Lunes!!

  2. Isabel-
    This story hits very close to home, you are in my thoughts and prayers as you hopefully go through your last surgery. In January 23, 2012 I had a colonoscopy done to figure out why I was so severely sick, and turned out that I had UC. February 5th, I was admitted to the hospital due to severe stomach pains and a 104 fever, on February 12th after a week stay in the hospital and many many tests later, Sunday at 12am they found out that my colon had perforated in three different spots and if they didn’t go in and do emergency surgery right away, I could have died from sepsis. All that you write about in your story above, I CAN RELATE TO! Although my surgery wasn’t an option it was the only way to live, it was horrible, I had a several complications as you said you had, I was on a VAC for 6 weeks, I was so sick prior to my surgery I couldn’t keep food down and everything was passing right through me, so when it came time for my body to start healing it had a difficult time, my wound would not heal therefore I was issued the VAC to help my wound close.
    I have a huge scar on my stomach as well because Laparoscopic surgery wasn’t an option either for me. I had developed a fistula (infection) at the wound site because of that I was on a PICC line to feed me nutrients for 38 days, I wasn’t allowed to eat solids or semi-liquids (I lived off water and popsicles), in order for the fistula to heal I had to rest my intestines. I ended up losing a lot of my hair and I became very skinny and sickly.
    I have a semi-permanent illeostomy because at the time of emergency surgery they said with in 6 months I would be able to have reversal surgery and have a Jpouch made.
    That is where I am now, going back and forth to the University of Penn having tests and blood work done to see where I stand in regards to reversal surgery. I have another appointment this coming Thursday Sept 13th, I am hoping they finally have an answer for me. I am hoping that I can have the reversal surgery, but their major concern is that my small intestine isn’t long enough to make the Jpouch and reconnect me. Its very scary to think I have to go through at least two more surgeries in order to live without an Illeostomy. I am also very young like yourself, I am 27, recently engaged and looking forward to having children in the future, although this surgery due to how intense it will be and they will have to remove more of my large intestine they said they will have to go through my uterine wall and that most likely I will have complications with getting pregnant.
    The illeostomy bag is not fun but it saved my life, and like you said its a huge decision to make to have surgery or not. Reading your story really made me think if I want to go through the stress of surgery again. Its strange how the man upstairs talks to us, and how the weekend before I go and make my big decision to go through the reversal surgery, your story was in my “Inbox”.
    Again I am thinking about you and I know that you will be sitting on the beach soon enough on vacation with your family!! Positive thoughts!! If we can make it through the first surgery nothing will stop us from continuing our strength and persevering!!

  3. Hi Isabel, I want to say thank you for your story and wish you the best of luck on your operation! You will be just fine! I too have UC and going through alot lately, now I’m on prednisone and 6MP.. I was on Remicade infusions but they had to stop it because I had an alergic reaction. My doctors also recommended surgery, Im going to see if 6mp can help me first. Please keep us updated.. God Bless you and my prayers are with you.

  4. Isabel, Wow! I never read your first story, but I am amazed at what you’ve already gone through, and also Brett. Both of you are very strong women who inspire others with your fortitude and desire to live life to the fullest. I had surgery six years ago, and I remember after I was admitted through the ER, the risk of perforation was really high. Like Bret said, sometimes you have no choice. They put me on more of our fave drug, yes, Prednisone, but it gave them time to hold off on the surgery until the risk of perforation had passed. Poor Brett didn’t have that option.

    After a week, they were ready to operate. No choice. My surgeon and my team were fantastic! My surgeon looked around to find an acupuncturist for me afterwards to help with pain; he let the team know they were to work with my naturopath and they gave me arnica (sub lingual) in the recovery room…. What I want to share, Isabel, is how having a positive attitude going into surgery REALLY helps, and you have that! Get organized—your husband is a rock star ;)—bring things to the hospital to make your room homey, bring slippers, and stuff. I did a lot of prep before—arnica and other forms of homeopathy—to aid healing, and I used the morphine pump and followed the pain meds very carefully. If one drug makes you jittery (like the Oxycodeine) tell your doctor right away (they switched me to Percocet), and reintroduce foods carefully, keeping a journal. I ate like two eggs a day b/c I was craving them (I hadn’t eaten. Solid food in three weeks and weighed 117 (I’m 5 foot 8). A long journey, but I followed a plan and got tons of support (we didn’t cook for two-three weeks after thanks to my friend, Anne, who organized the food donations!).

    When they went in, they found a whole area tha didn’t show up on the CAT scan— I had a fistula that went from the ileum over to the Sigmoid color, so they ended up taking that all out, along with a very large growth, called a granuloma, that had embedded itself into the wall of my large intestine.

    3 hours later, I was done. My surgeon was so proud of himself, having created an ileo-secal valve, and it was like a combo of plumbing and carpentry in there! STAY POSITIVE ISABEL. (And Brett, don’t rush it…. You might not be ready!) I have to say, my quality of life improved so much! I could travel, go to the beach (!) and not get sick with a flare; I have a vertical scare that had totally shrunk and faded—I am not ashamed of it! I have friends who have ostomies, and wear their bags outside of their bathing suits (in matching fabric!). I am so inspired by the Paralympic games. We, as uc-ERs (I also have Crohn’s) have a lot tobe proud of — we go through so much, and we are tough, and strong, and support each other. My best to you, Idabel! WhenMo day mor Inc comes, I will say a special prayer, to God and to the Buddha, for your protection and healing. My mantra going into surgery was “White light healing, inflammation gone.” I kept saying that to myself. I also brought photos of my kids and various talismans (holy water from Lourdes my Mom gave me, a rock with a circle around it, a tiny Buddha…stuff like that!) with me into surgery (they let me!). You will do really well, I can imagine you on that beach already!

  5. Lots of times in the past I have felt alone in the hospital and going through what many of you talked about above…sometimes wondering if my time was up literally. and being in so much pain, I really didn’t care if it was the end. All I know is if that day ever comes again and things go south, I will always remember the strength that all of us share in our stories and it will help me get through whatever I am facing, even if it is not UC related. Thank you all for that and stay strong!!!! Steve

  6. I hope all goes great for you. It’s always something I think about, especially in a flare. When your surgery is done will the pouch be On the inside or on the outside of the body?? And how much of your colon was involved??

  7. I’m so sorry you had so many complications. My daughter had 2 surgeries. The first was the colectomy with ileostomy. The second to construct and attach the jpouch. The first surgery was done when she was still on Prednisone. The second was done once she was totally off the steriods. The difference in healing between the first and second surgery was remarkable. She is doing so well- and so will you. Her scar extends from her pelvic bone through her belly button, and she wears it proudly. It reminds her how strong she discovered she is.

  8. Amy in South Carolina

    Hey Isabel & all my fellow UCer’s out there! I have read SO many of everyone’s posts but been unable to respond until hearing Isabel’s story. I am not going to bore everyone, or utilize your energy best saved for future fun, with all my ‘deets’ (as my silly daughters say for details) but I will say I had the EXACT surgeries for a total abdominal colectomy with the end result being a J-pouch. It changed my life for the better, @ least comparing to the times I was flaring or “having a bad bowel day”, no doubt! If I had to go back & choose, I think I’d make the same decision. In general, I am a happy, outgoing, ‘glass is half-full’ Mom, wife, friend, Christian, daughter, niece, sister, etc (you get the picture) but I feel a strong sense of responsibility & compassion to tell you that life, post-operatively, isn’t (for me, at least) always doable. I had my surgeries done from August 1995-December 27th, 1995. To this day, I struggle with Pouchitis, adhesions, nerve damage, bowel sensitivity & obstructions. I feel so bad writing this but, as I said, I’ve never written before & feel a sense of responsibility to share. I had excellent, experienced surgeons who did a great job (I was active duty Air Force, @ the time, living 1500+ miles away from our support system. 2 yrs into marriage with a 9 month old when all my health crazy took place). I have found Biofeedback to not only be positively life-altering but beneficial as much as the Methadone the docs now have me on for all the severe nerve damage. As time goes on, I have found my “pains” have become exacerbated with age, I’m now 41. I work at staying in shape, it’s not easy between the pain I still feel & the lethargy from the meth but it helps my mind be stronger & more positive than the hurt. I would love to share much that I know, both personally & professionally, until 2 years ago I spent my adult life as an EN. Being on my feet so much without hydration led to too many obstructions so I’m home, with our youngest, full-time. If I can be of any help, I’m a great resource & always willing to lift you in prayers, please don’t hesitate to e-mail me. Wolverinefan@sc.rr.com. & everyone, don’t forget to join the CCFA (Crohn’s & Colitis Foundation of America), they are the ONLY group dedicated to finding treatments &, one day, a cure for our diseases. Thanks for your time everyone, in love, light & peace……..Amy

  9. & b/c it’s so late on the East coast as I’ve been typing these responses I forgot, twice, to let Brett & Isabel know that I am praying for you both this week!! Your decisions & surgeries are MAJOR but God’s bigger! Isabel, this was the briefest surgery & had the quickest recovery time for me. Stay strong, focused & remember “you’re almost there!!” Brett, try not to make an instant decision, if possible. Come home, gather your thoughts & feelings, lay all of it on our Lord & feel what the answer for you is. I am truly lifting you both in prayer everyday this week! <3. <3

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