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Took the final plunge...had surgery this past Tuesday :)

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Ulcerative Colitis
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Posted 7/16/2010 10:32 PM (GMT 0)
Hi guys,

I don't post on here often, but I do post every once in a while.  I've suffered from UC since 11/2008 and the last year and a half have been pure hell.  I've been on sulfasalazine and mesalamine medication available to no effect (I even had side effects from some of the mesalamines).  The only medication that helped some was prednisone, but I was hesitant to remain on it long term, and I was unwilling to try Imuran and the biologics due to the risks.

I decided to have surgery, even as many surgeons talked me out of it (some said that most people wait years before making that decision--sorry, I didn't want to go through 10, 20, or 30 years of hell) and others told me that my inflammation wasn't that bad.  Well, I feel it day in and day out, and while some days were great (only 3-4 BMs) other days I couldn't get out of bed due to the pain and I was going 10+ times a day.  Cancelling events and appointments due to the unpredictability of this disease got old.

I traveled to South Florida to meet with Dr. Avraham Belizon at the Minimally Invasive Colon & Rectal Surgery Center in South Florida.  We discussed my situation and he didn't question my pain or decision.

I didn't have the j-pouch operation.  Instead, I had a one step procedure called ileorectal anastomasis, where my entire colon is removed except for my rectum, and my terminal ileum is attached to my rectum.  I had minimal disease in my rectum (most surgeons said they saw inflammation that was 5-6 times worse than mine in the rectum) and I was fine with this surgery on the condition I'd have to undergo lifelong maintenance of the rectum due to active disease, but this was fine with me--the alternative would be lifelong maintenance of the entire colon right?

The surgery was performed at Delray Medical Center (Delray Beach FL) this past Tuesday.  I woke up from surgery in a lot of pain and very sore, but I'm recovering quickly--I was just discharged today, 72 hours after the surgery, and I'll be staying at a hotel in Boca Raton until I travel home later this weekend.

The surgery took 4 hours and I have 5 cuts, about an inch each (one to take out the colon, and the other 4 for connecting my small bowel to my rectum).  I'm still recovering, but I already feel like I have a new lease on life.  No more abdominal pain, and I already have energy--although I have to be careful--I'm still recovering :)

Just wanted to let everyone know my situation and let you know there are other surgical options besides the j-pouch and the permanent illeostomy.  If you have minimal rectal inflammation, you may want to consider the one-step procedure I had to spare your rectum.  It will give you greater control.  Right now, it's the intial days after my surgery and I just started on solid foods yesterday, but I'm having 4-5 BMs a day.  The surgeon said that in time, that should be reduced to 2-3 BMs a day.

Thanks everyone for the support and remember--if you ever feel hopeless, there is a cure out there there!  And new surgical options and advances in laparascopic surgery make it an easier decision than ever before.

As for me, I'm ready to move on with my life: law school next fall, dating, and more.

CollegeGrad85

dx with UC 11/2008

Currently on: Align Probiotics, Garden of Life Probiotics, multivitamin

HAVE TRIED: Sulfasalazine, Apriso, Lialda, Asocal, Prednisone

One-step colon surgery on 07/13.  Now, on my way to recovery!

Posted 7/16/2010 10:52 PM (GMT 0)
I'm happy the surgery went well and I hope you get a speedy recovery!
Posted 7/16/2010 10:54 PM (GMT 0)
Wow, wonderful to hear that you're already feeling so much better. I am sure things will only improve from here on out. I have a lot of rectal inflammation so I don't think the procedure you had would be an option for me but it's always nice to read about success stories. Hope you continue to gain your energy back & heal :)
Posted 7/16/2010 11:33 PM (GMT 0)
The best of luck to you and I hope and pray for your complete recovery to health. My inflammation was always in the rectum, never traveled past those four inches. My colon looked pretty good, only some diverticulosis. However, the surgeon told me they had to take out the entire colon along with the rectum because UC could travel further into the colon if just the rectum were removed. I tried the entire gamut of meds over the last twelve years....6MP, Remicade, Humira...I was prednisone dependent.

My operation was called total colectomy with perm ileostomy. Wish I could still poop out of that rectum which I had for 63 yrs, but it is not to be . So before the inflammation could turn into the big C....I bid my rectum adio.

Take care and God bless.... good luck with school~
Posted 7/17/2010 2:39 AM (GMT 0)
That is great, hope you have no more problems and make a quick recovery. I agree with you I was diagnosed in March of 2009 and this hasn't been fun. I'm on remicade and the side effects scare me to death. It isn't healing my colon. I've been told I will need surgery. Glad to hear a good story. Thanks for sharing.
Posted 7/17/2010 5:49 AM (GMT 0)
Oh wow, that was a fast decision, surgery and now on your way to good recovery is an amazing start to your new life!

REgarding the mild inflammation at this point....I'm assuming rectal meds will become part of your regimen? I do agree, it's better to deal with a smaller area if it remains mild.

Please keep us posted as to how things go with you and how you're adjusting, etc.

quincy
Posted 7/17/2010 12:20 PM (GMT 0)
Glad you're doing well! I was also diagnosed in 11/08 and had the surgery in 12/09 (I did have bad symptoms for over a year prior). There is no reason to suffer for years just because other people do! Two years of flaring was enough for me!
Posted 7/17/2010 2:49 PM (GMT 0)
Glad that you are doing well...keep us informed as to how are doing in the future. Thanks for your story!
Posted 7/18/2010 11:57 PM (GMT 0)
Many thanks for sharing your surgery decision with us. It's interesting to hear of ileo-anal anastomosis now being done as one-step with small incisions. Another forum member, UCRick, posted a good while back about his older procedure, where just a part of the rectum was left in to reconnect. His doctor expects him to take a 5-ASA med daily to protect that section. It took him about a yr to feel well enough for a trip abroad, but then he wrote us that he finally went (some place rugged) & had a good time in his fifties or so. Best wishes for your future plans! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/22/2010 6:01 PM (GMT 0)
Hi guys--
An update: I've had a minor setback: after being released from the hospital, I started having nausea and vomiting after eating and became dehydrated. The surgeon reviewed my wounds and noticed I had a wound infection from where my colon was taken out (which is more common than not). Gauze and padding were inserted deep in the wound that needs to be changed out daily and I was prescribed a 10-day course of a specific antibiotic. Good news is that I'm now holding down solid food and feeling good again. I'm having about 6-8 BMs a day right now (no blood) that tend to be less formed/more like diahrrea, but I was told this is normal as it will take a while for my system to get used to my new plumbing. In the meatime, the doctor recommended I take a fiber supplement and immodium to slow things down until everything stabilizes.

I'll keep you posted. I'm hoping this wound infection heals quickly. Thanks for your prayers and support!


CollegeGrad85
Posted 7/23/2010 7:26 AM (GMT 0)
Just what you didn't need....glad you're on meds to get the infection under control and that you're not vomitting as you were before.

Definitely keep us posted...

q
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