3 Year Anniversary of J-Pouch….LOVE IT!

Introduction:

Shanna, 39 yrs old, mother of 2 boys (age 11 and 13). A GI nurse and physician extender at a busy GI practice for 16 years. I joke and say I caught UC at work :) Three years ago I decided that I was done with meds and had the surgeries for a j-pouch.

3 Year with a J-Pouch:

I was diagnoses with Ulcerative Colitis in 2005. I was an RN at a busy GI practice. All day long I would ask patients about their bowel habits and honestly could not have told about my own because it was such a non-issue. Then one day I started having severe Left Lower abdominal pain. This followed with episodes of BMs with nothing but blood for about a week. My colonoscopy only showed ulcerative proctitis. I started out with Canasa suppositories and then quickly had to move up to enemas. When I still did not respond, I progressed to Asacol. Six months after my 1st colonsocopy, my 2nd revealed that the colitis had spread throughout my entire colon despite high-dose Asacol. When on Prednisone, I would be fine, but I could never get off. I had what is called Steroid-dependent colitis. In 2008, I was referred to an IBD specialist who recommended Imuran and Remicade. I did a bit better and was able to get of Prednisone, but then after the 6th dose I was flaring a gain.

That’s when I decided to go ahead with a J-pouch. I did my homework and found a surgeon who did it laparoscopically. She was great. My first visit she spent an hour explaining the surgeries and what to expect. I left that appointment that day and still put off the surgery for another 4 months. I just wasn’t ready to give up on my colon. But, I kept getting sick, flu, pneumonia, strep throat, bronchitis, etc… You name I wold catch it. My immune system was so compromised from the drugs. My last colonoscopy even showed dysplasia (cells turning in to cancer). It was time…time to take it out.

On March 3rd 2009 (3 years ago) I had the first of my j-pouch surgeries. After about a week, with no BMs and using the ostomy bag, I was hooked.

I LOVED my ostomy bag.

No more running the toilet. Just empty the bag 3-4 times a day. I almost put off having the next surgery.

My j-pouch is 3 years old. It takes about 9 months for it to “mature”. I can now eat what I want (yes… even salads and fruits) and I only have 4-5 BMs a day. No more urgency. I can hold a BM up to a couple of hours if needed. I only take Immodium and Pepto and make sure I have plenty of fiber (Benefiber is my favorite).

I know that surgery is a HUGE decision. But, it was the right decision for me.

written by Shanna

submitted in the Colitis Venting Area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

j-pouch, ostomy

12 Responses to 3 Year Anniversary of J-Pouch….LOVE IT!

  1. Bev March 8, 2012 at 6:15 pm #

    Hi Shanna!

    Boy, that all sounds so good! I have about had it with this disease. I only want the surgery if I can have it laproscopically as well. What were the considerations for that? What made you a good candidate for it, if you don’t mind me asking? Like, what were the criteria for it to be done laproscopically?

    Cheers to you, and thanks for sharing,
    I am truly delighted for you!
    Bev:)

  2. Hannah March 14, 2012 at 12:31 pm #

    Hi Shanna – you are inspiring me…Ive had UC since I was 10 (36 years now) I refused surgery at age 16 – it was not as sophisticated as it is now. I’ve tried all the drugs and have not been able to recover from the fl;are which began last April. I think I am steroid dependant now – along with my weekly Humira shots. I’m not seeing significant improvements. I also want to hear about how you were able to get it done laproscopically.
    thanks for sharing!
    Hannah

  3. Catherine March 16, 2012 at 1:27 pm #

    Hi Shanna

    I love reading positive surgery stories like yours. My 19 year old daughter had a coletomy 7 weeks ago. When she is completely off Prednisone she will have the jpouch surgery- hopefully May. Like you, she couldn’t get off the steroids. She would taper down to 10 mg and the flare would rage again. This went on for 10 months. She wasn’t just on prednisone. She was also on Colazal, 6MP, Remicade infusions, and mesalamine ememas. When nothing worked, surgery became necessary. She feels so unbeliveably good now. She doesn’t mind the bag. It’s a small trade off for the health she’s regained. She is excited about life, now. I hadn’t seen that for 3 years.
    Could you please let me know what the purpose of fiber is with the jpouch?

    Thank you
    Catherine

  4. Katie March 30, 2012 at 8:42 am #

    Thank you so much for sharing!!!! I’m about to have my 2nd surgery and have been a little scared about whether I made the right choice or not, but hearing your story confirms that I definitely did! I’m glad hear everything worked out so well for you :)

  5. Heather May 5, 2012 at 1:02 pm #

    Shanna,

    I definitely relate to your story. Thanks for posting. I was diagnosed in 2003 and my progression w/ the disease if very similar to yours. I’m fine on prednisone but when I taper I flare. Started Remicade last fall. Did well in the beginning but started a flare the week leading up to my 6th treatment. Back to prednisone this week, yuck. I also have 2 boys, ages 5 & 7. Life is too busy to run to the toilet all day. I am to the point of considering surgery. I figure why not get rid of my colon while I’m 35 and fairly healthy. Eliminate the inflammation & cancer risk. I would like to talk to you more about the surgery and daily life after surgery. Are there a lot of surgeons who do the procedure laparoscopically?

  6. Wendy
    Wendy May 23, 2012 at 10:17 pm #

    I am gong to the Mayo Clinic for a consultation for the purpose of having surgery on teh 25th of June. Reading this helped. I’m stills cared out of my mind and worried about my decision, but it does help reading this. Thanks.

  7. Julie September 7, 2012 at 12:26 pm #

    Hi Shanna….

    Iknow this was written a while back but like everyone else I would like to know about the laparoscopically also. I’m not usre if I’m even at the point of surgery but I want to know all the options out there. Like you, I am sick of this disease controlling my life, I’ve had it for over 27 years….

    My email is juliehurley55@yahoo.com

    Thank you!

  8. Jed
    Jed October 27, 2012 at 8:03 am #

    Hey Shanna,

    As everyone else has said, thanks for sharing. It’s always interesting to ‘hear it from the horses mouth’ as it were. I’ve done much research on having surgery for our condition (UC) and there are more than a few stories that make me think twice.

    Of course it’s different for everyone.

    I was wondering about what you said in regards to be able to ‘eat anything’ you want – does this apply to fast food, chocolates, cakes, sweets etc???

    Hope all is still going well and hope to chat soon. Thank you.

    Jed.

  9. sue sekular September 26, 2013 at 7:18 am #

    Would like to know if anyone else has most if their “urgent” need to go moments at night. It seems I fine in the daytime but as soon as I go to bed, I;m up every 2 hours to “go”. Also, I’m taking a 9 hour trip by plane and want to know if anyone has any secrets on how to prepare for possible “urgencies”.
    Thanks in advance for any help.
    Sue

    • UmmE June 17, 2015 at 8:48 am #

      Omg same situation, i feel like my bed is a laxative, as soon as i lie down to sleep,that’s it, i have to go & have such broken sleep which doesn’t help our situation. Regarding flying,best wishes! I usually try not to eat at all (i know this is so bad but for me it is the only way) & take imodium. I do take supplements like bee pollen, pee propolis, royal jelly & maca to give me energy.

  10. Trevor April 10, 2014 at 5:39 pm #

    This may or may not help anyone but I’m 18 and last august was diagnosed with uc, I was gonna be starting quarterback my senior year, and start n basketball and baseball, then the first week of school I got really sick and was in and out of the hospital, had a colonoscopy and started several meds, and time has gone on and I’ve lost 30 pounds and weigh only 120 now, and am skin an bones and have ended up in and out of the hospital and nothing was working, so 2 weeks ago, had a meeting with a surgeon and a week ago had an ileostomy, I went home after 3 days in the hospital and I’m in love with my decision even tho I have to wear a bag for a while, I will have 2 more surgeries, roughly 6-8 weeks apart, a total of 3 in all due to being on a high dose of prednisone for the last few months, but after a week out of the hospital I feel almost like a normal kid again and I have my health back and can eat relatively what ever I want! The surgery, even tho I have 2 more to go and a long road ahead is the best decision I’ve made this far!

  11. Joni June 7, 2016 at 11:41 am #

    I don’t have bleeding, at least not yet, but I’ve had IBS for 10 years. Unbelievable pain, nausea, vomiting. diarreah. I’ve been in the hospital at least 6 times. I have not been on prednisone yet and I’m still trying to deal with it the best I can. I find that types of foods do not seem to make a difference. Anything I eat can cause a flare. I take Citrical daily and an Immodium every morning, which keeps me safe during the day. Also, I take an enema every morning because the Immodium causes constipation. Also, whenever I get the first cramp, I immediately take an Immodium. By being very diligent with these precautions, I am now able to go through the day without a diaper. My heart goes out to all of you whose condition is far worse than mine. If mine gets worse, I will definitely consider surgery

Leave a Reply