UC to J-Pouch Story

Posts Tagged ‘permanent ileostomy’

Sarah’s Permanent Ileostomy

Posted by sarahbiggart on December 28, 2008

My Ostomy Story

 

 

 

My Story begins in February of 2000, 3 days before my Husband and I were to leave on a 7-day Mexican Cruise celebrating our first year of Marriage. We attended a Birthday Party that night at a local Mexican restaurant and I had to leave the table over and over again with terrible diarrhea, just nerves about the cruise I told myself. The cruise was wonderful, but the diarrhea continued and I was pounding extra-strength Pepto the entire time, it did not help at all, just the foods I am not used to eating I told myself. Back at home the painful cramps and diarrhea were still bothering me and a trip to the doctor was met with “Well, you were in Mexico” It started before we even left I explained in vain. Multiple ER visits for dehydration and visits to GI specialists followed, stool samples were given, blood was taken and finally a colonoscopy gave me an Ulcerative Colitis diagnosis 3 months later, I was 23, newly married, and very sick.

 

Over the next 5 years I tried multiple medications, Prednisone, Immuran, Asacol, Lomitil, Rowasa enemas, nothing gave me relief. Also over those 5 years I had a child, though advised not to, and continued working, I run a group home caring for developmentally disabled adults. But pooping my pants in public and paranoia that surrounded being in public and begun to take their toll, I was not the happy person I once was, the UC was controlling my life, as much as I tried not to let it, I had become it’s prisoner.

 

In June of 2004 I had another Colonoscopy, I had been doing some research and had learned about j-pouches. In my groggy state during the colonoscopy I remember looking on the monitor and seeing my colon, it was a bloody, pus filled ulcerated mess, my insides were rotting inside of me, I told my GI right then and there that it needed to come out. I found a CR surgeon that I liked and scheduled a 3 step, possible 2 step j-pouch surgery for September 24, 2004. I woke up with a total proctocolectomy, rectum and colon removed, no j-pouch formed, my rectal stump (anus) intact, and an end ileostomy…A BAG!

 

I never went back and had the j-pouch done, as I came to the realization as I lay in Hospital recovering, I was laying in the Hospital recovering, I was not jumping up to use the bathroom. My recovery was not easy, I had some complications, but once I got back on track, I felt my old self, my true self returning. I was able to be the Mother my son deserved and needed, and the Woman my Husband had married in the first place. Yeah, I had a bag hanging from my belly…so what? At least I could sit through a movie, wait in a line, and hold my sleeping child in my arms, things that were not possible for me before.

 

 

One of the things that also has helped me on my journey has been my involvement with the UOAA, it started when I heard about the 2005 National Conference to be held in Anaheim, CA. Since Anaheim is only about 90 minutes from our front door, I decided that my Husband and I should attend, it will be good for us I thought, and we would probably never go again.  Well that Conference was a life changer for me, I already was confident and secure with my ostomy, but did feel alone.  Walking into a room with hundreds of other ostomates, and specifically about 75 other Young Adults with ostomies was one of the most empowering moments of my life, and really changed the course of my life, it gave me a new focus.

 

Since then I have become the Vice President of the Ostomy Association of San Diego, and continue to serve in that position, traveled to Irvine, CA, Chicago, IL and Cleveland, OH twice for UOAA (United Ostomy Associations of America; www.uoaa.org) and YODAA (Young Ostomate and diversion Alliance of America; www.yodaa.org) Conferences, and plan on attending the UOAA’s 2009 National Conference in New Orleans, LA. This past summer I was a volunteer Counselor for Youth Rally (www.rally4youth.org) a Summer camp for kids 11-17 with ostomies, diversions, IBD and bowel and bladder incontinence. I always look forward to spending time with my “second family” the people that I have met along my journey. We all share an instant bond and connection, we have walked similar roads and understand what the other has been though, you won’t find pity, but you will receive support, love and understanding.

 

Looking back, of course I wish I never got sick and would never want to have an ostomy, but this is the path my life has taken. I choose to find positives and lessons in everything, and make it my mission to reach out to other people helping them find acceptance and happiness with their ostomies just as I have.  I feel that support is very important, when it comes to ostomies you have to seek it out, you would never know another person on the street has an ostomy or diversion, so using the internet and support groups is a wonderful resource and I encourage everyone to learn more, whether at a local support group meeting or online on the wonderful discussions boards available, especially at http://www.uoaa.org.

 

As for me, I continue to run the group home, my son, Hendrix just started Kindergarten, and my Husband and I are about to celebrate our 10 year wedding anniversary. I continue to have great adventures and good times, we have traveled, my son and I take Kung-fu, I swim, snorkel, ride my bike and live a happy and active life. My ostomy does not hold me back; it has given me back the life I always wanted.

Hiking with my Family on the Road to Hana

Hiking with my Family on the Road to Hana

 

 

 

 

 

 

 

 

 

 

 

 

 

 Me, swimming in Maui, HI

Me, swimming in Maui, HI

 

 

 

 

 

 

 

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Posted in UC | Tagged: , , , , | 7 Comments »

Surgery Photos: Rob’s Story

Posted by mark on August 1, 2008

 Please Welcome our New Guest Blogger Rob B.

Rob Headed into Pre-Surgery Testing

Rob is headed in for surgery on Aug 8, 2008 for removal of jpouch and to gain a permanent ileostomy. His story is different than Mark & Carter’s because he had colon cancer many years ago, and it damaged his rectum area, leaving him with the option of a perm ileo to simply get his life back.  Below is an excerpt from Rob, and we’ll be adding photos and text of his journey as it happens.   Be sure to send him your support, he has a long journey of physical and emotional healing ahead!

 

Rob’s Story Explained:  “My Colon was damaged due to radiation I received 17 years ago but I’ve been on a medication called lomotil.  It controls B/M’s but unfortunately not all the time. I have had my shear of accidents so I can relate to Marks story when he was up on the lift and had an accident.  You see my problem is also with my Sphincter (the anal muscle that holds everything up and in). Because of the cancer they had to removed a large portion so I have no control of any B/M’s. I can’t even feel when I’m having one. I’ve been surviving because of the medication. It hasn’t been pleasant. I need my life back so I have to go for the permanent ostomy.”

Keep visiting we’ll keep updating with text and photos on Rob’s page:  Surgery Photos: Rob B’s Story

Posted in UC | Tagged: , , | 1 Comment »

Most FAQs: J-Pouch or Perm Ileo

Posted by Megan on June 20, 2008

People often ask how did Mark decide to have a J-pouch or Permanent Ileostomy?  And people often ask this question because we are told there is a high risk of complications, long recovery time, etc…But what we think is that this is a really complex question because there are so many factors weighing in, so obviously your surgeon is the best one to talk with about this.  Nonetheless, if you look over Mark’s journal you’ll see he didn’t miss that much work, we document all his timelines of when he got back to work etc.  And he had no real complications.  Where on the flipside there are some people who have a really rough recovery.  You must do your research and understand the good and the bad 100%.  People have complications, and we learned that looking and getting support in this process at www.jpouch.org.  It is so important that you understand Mark’s journey is only 1 way the surgery and recovery can go, so here are some resources to get you started making a fully educated choice:

 

(1) Here is what Patients and family say about the choice:  Jpouch vs Ileostomy 

(2) Here is the Medical Reasoning from CCFA  by — Linda Wasmer Andrews, Dec 2005:

“Which is Better: IPAA or Ileostomy?

Today, an IPAA is the procedure of choice for many ulcerative colitis patients who need a proctocolectomy. The big advantage of an IPAA is that it allows people to keep having bowel movements through the anus. Typically, they defecate about six times a day, and the stool has a soft, putty-like texture. On the downside, problems sometimes develop with the pouch. One possible complication is pouchitis, an inflammation of the pouch that can cause diarrhea and abdominal cramps as well as whole-body symptoms, such as fever, dehydration, and joint pain. The inflammation is treated with antibiotics.

Another potential complication of an IPAA is bowel obstruction, or blockage, which leads to crampy abdominal pain with nausea and vomiting. This problem can usually be treated with bowel rest and intravenous fluids. However, about one-third of people who develop a bowel obstruction need surgery to correct it. Also, in 8% to 10% of people who get an IPAA, the pouch doesn’t function properly and has to be removed. When this happens, surgical conversion to an ileostomy is necessary.

An IPAA isn’t right for everyone. A permanent ileostomy may be the best choice right from the outset for some people with ulcerative colitis, such as those who have low rectal cancer or an anal muscle that doesn’t work. It turns out to be the only option for people with Crohn’s disease who have their colon removed. In such cases, it’s good to know that people can lead long, active, fulfilling lives with an ileostomy, too. “It’s the difference between sitting down to have a bowel movement and standing up to have one,” says Dr. Rafferty. That’s no trivial distinction when you’ve been having bowel movements the same way all your life, but many people who have been through it say that the initial adjustment wasn’t as tough as they had feared.

Here is a Video that is really well done that talks about making the decision for surgery, and her two step surgery is shown and discussed.  Technical and emotional are both addressed.  Really Recommend to Watch!

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Getting Healthy Story #2 – Chelsea

Posted by mark on June 7, 2008

Here is the recent post from a young woman who literally has been to hell and back with her UC, failed jpouch and now perm ileo.  The brilliant thing about this post is that in the face of all her health issues, she has found renewed health and she is a true inspiration story.   Let us explain, having a permanent ileostomy is worst case scenario for a “failed” j-pouch, and when you read things like this, it helps you to remember that a perm ileo will give you your life back.  

According to CCFA only:

“About eight to ten percent of patients will have pouch failure, which requires removal of the pouch and conversion to a permanent ileostomy.”

Posted in permanent ileostomy | Tagged: , , | 8 Comments »