UC to J-Pouch Story

Posts Tagged ‘Ulcerative Colitis’

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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Marc Jacobs has UC

Posted by Megan on November 24, 2008

I was recently reading the November 27, 2008 issue of Rolling Stone Magazine, and they did an article on the famous fashion designer Marc Jacobs. The article is really interesting and talks about his story of living with UC – it is excellent that someone so high profile is willing to talk about their disease. My only concern though is that in the excerpt below, it seems some of the info about the disease may not be fully correct (i.e. the indication he has UC because of poor diet and smoking…that may not be fully accurate way to portray the disease). Excerpt from The Deep Shallowness of Marc Jacobs by Vanessa Grigoriadis:

“Jacobs didn’t take care of himself when he was out of rehab. He chained-smoked, ate poorly and soon developed ulcerative colitis, a stomach ailment involving the chornic inflammation of the large instestine (his father died from complications relating to this disease). “It was really debilitating,” says Jacobs. “I was in a lot of pain, and it kept getting worse, with more outbreaks and flare-ups. I lost so much time every day in the bathroom, uncomfortable and ill.” He relasped in 2006, but decided to try a different way to address his problem: He hired a nutritionist who advised a drastic lifestyle change, with no sugar, dairy, coffee or flour, plus exceercise, macrobiotic food, a nap and sunshine every afternoon. “Instead of Wendy’s five times a day at weird hours, and Coca-Cola after Coca-Cola, now I’m drinking six bottles of water, green vegetable juice and wheat-grass shots iwth giners,” he says laughing. (Grigoriadis, 2008, p. 136)

Here is a video with an interview with Marc Jacobs, showing how eats healthy, he even takes VSL#3…

Video from Style.com of the fall/winter 2007 Marc Jacobs Fashion Show below.  People living with UC achieve great things. Hopefully, Marc will do public advocacy for UC since it affects him and affected his father.

Reference:  Grigoriadis, V. (2008, November 27). The deep shallowness of Marc Jacobs. Rolling Stone, Issue 1066, p 61-65, 136.

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HI EVERYONE!

Posted by pixiesndust on November 23, 2008

before it all began
before it all began

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is yesac87@hotmail.com

sick times

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

big face

Casey’s Blog and Photos Here

 

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Jpouch Images

Posted by Megan on September 2, 2008

Images via John Hopkins Colon Cancer Center

These excellent 4 part illustrations from John Hopkins Colon Cancer Center clearly explain the Restorative Proctocolectomy (Ileoanal Pouch Procedure) that Mark had.  The surgery is also called IPAA for short, and the Ileoanal Pouch is the long name for Jpouch.

Hopefully, these clear drawings will help you understand the procedure, and the John Hopkins Colon Cancer Center site offers illustrations of the other possible colorectal surgeries. Their focus is on colon cancer and not IBD, but the surgeries definitely overlap.

Photos via:  John Hopkins Colon Cancer Center

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Mark 9 month Jpouch Update

Posted by mark on August 8, 2008

9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry.  Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again. 

BMs in 24 hour:  Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go.   I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same.  Here is my BM schedule for those of you interested: 

2 BMs when I get up and start my day  (don’t eat breakfast)

1 BM after eat Lunch

1 BM before dinner

2 BMs after dinner before bedtime

1 time in the middle of night between 3-4 am

Gas:  Simply put, I am pretty gassy.  My gas may be from metamucil or what I’ve eaten.  I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine. 

BM noise in the bathroom:   Sometimes it is quiet but sometimes it does sound pretty splatter like. 

Weight Gain & Body Changes:  My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo https://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay ) Megan likes to tease me about my “middle-age bulge” – she thinks its funny.

Sexuality:  I have some again, thank goodness!  UC days it seemed sex wasn’t a huge interest.  Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well.  And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days. 

Medicines:  2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time.  What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn.  Therefore, the goal for me is to keep the BMs more solid.  The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.

Drinking Alcohol:  The big question asked is can drink with my jpouch?  And the answer is YES, I do.  Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer.   Red wine and thats been fine.  Crown Royal and Coke doesn’t bother me either.  Other than that I haven’t tried many drinks.  Also, I don’t tend to drink so much that I’m drunk, just more causal.

Hemorrhoids:  Mild

Butt burn:  Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker. 

I LOVE MY J-POUCH – I HAVE ZERO REGRETS!  Mark

 

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Best Case Scenario

Posted by Megan on July 18, 2008

Here is some food for thought for those heading in to or pondering “elective surgery.” Instead of pondering and dwelling on what are all the possible complications of surgery, why not consider what is the BEST CASE SCENARIO?  Why do we always see the “worst case scenario” and why was it a revelation to me that seeing life from what is the BEST CASE SCENARIO would really make a lot less anguish in life.

My Mom is having surgery on her eye for glaucoma, and she is currently in a state of fear. All she can say is “what if the surgery goes wrong and I lose sight in my eye?”  A rightful fear, for sure – however, I never hear her say, “80% of this surgery works and removes the pressure from the eye and can solve the problem.”  Right now she is so involved with fear that she can not see BEST CASE SCENARIO, she will only see worst case scenario.

I just know that when we were coping with Mark going into to surgery we spent so much energy (as in years) dwelling on what could go wrong, and almost refusing to see what could go right.  As you know, his outcome has been all the scenario of “what could go right” so we wasted spent so much energy worrying about what could go wrong.   Of course, I know in retrospect so much easier now to say to you “See best case scenario”but seriously, don’t forget to see your “best case scenario options“.

Awareness of impermanence is encouraged, so that when it is coupled with our appreciation of the enormous potential of our human existence, it will give us a sense of urgency that I must use every precious moment” – The 14th Dalai Lama

 

Photo via: Fanboy30

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A picture speaks 1,001 words

Posted by mark on July 14, 2008

Below is a photo of Mandy and her friend simply having fun and NOT letting her ostomy get in the way of water skiing and living life. 

“haha all taped up and ready to go!  my friends taped my bag to my stomach so it wouldn’t fly around…and my friend Kevin taped his stomach so I wouldn’t be embarrassed lol”

A picture speaks a 1,001 words

A picture speaks a 1,001 words

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Tony Snow: Dies at 53 yrs

Posted by Megan on July 12, 2008

July 12, 2008:  Tony Snow has died from colon cancer, he was 53 years old.  Tony Snow served as White House Press Secretary for Bush, and other republican political ties. This post isn’t about politics, but the politics of IBD rather. This post is about the fact that he UC for 25 years.  After living with UC for 25 years, he found he had colon cancer, eventually the cancer spread to the liver which ended his battle.  In 2005 he had his colon removed from cancer, and in 2007 was back in care for an abdominal growth. 

Click here:  Tony Snow on CNN

Click here:  Tony Snow on Wiki

Click here: Tony Snow on www.jpouch.org Forum Discussion

 

About the risks of UC/CD becoming Cancer:  Since I am not a medical professional on this topic, I’ll only provide you with the links to proper sites so you can get accurate information.  Click here for the  CCFA Update on Colorectal Cancer: Knowledge is Prevention .  This is a webcast, article and brochure about the topic, and discusses what are the risks of colon cancer and IBD, etc…

PDF Brochure Click Here:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients

Excerpt from Brochure page 2: 

 

 

 

“Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic diseases that inflame the digestive or gastrointestinal (GI) system. Specifically, ulcerative colitis inflames and causes sores in the colon, while Crohn’s disease can inflame any part of the GI tract, including (in some cases) the colon. If you have had inflammation of the colon, you are at a higher risk for developing CRC than the general population (unless your inflammation is limited to the very bottom of the rectum). If your Crohn’s is limited to the small intestine, you are at a slightly increased risk for cancer in the areas that were inflamed. Even if your disease is in remission, you remain at risk.

The two factors that are associated with increased cancer risk are disease duration and the extent of the colon involved. The risk for CRC doesn’t start increasing until eight to 10 years after you develop Crohn’s disease or ulcerative colitis. People whose entire colon is involved have the greatest risk, and those with inflammation of the rectum only have the least risk.”

Please cllick here to keep reading and gaining accurate information about the risks:  Bringing to Light the Risk of Colon Cancer for Crohn’s and Colits Patients 

 

 

 

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CCFA Billboard

Posted by mark on July 11, 2008

CCFA Billboard, Tucson Arizona USA

 Looks like “times they are a’ chaning” if CCFA is posting billboards to bring disease awareness.  Hopefully you’ll be able to see the billboard details, but the female in the photo is sitting on the toilet and resting her head against the wall with her eyes closed.  It’s a pretty powerful image.  The text reads “Crohn’s disease and ulcerative colitis can be overwhelming.  We can help!” 

My sister told me about this billboard, and I told her she had to photograph it for us to share with others. This is so great because not so much for those living with the disease but so that others affected by those with disease can see that it really is a problem!  The billboard is up in the city limits Tucson, Arizona USA (greatest city in the world).  Thanks Erica for the great photo!

If any of you have great photos that are about IBD awareness you should send them and we’ll share them with our readers!

Photo by: Erica (Megan’s Sister)

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Carter’s Surgery Photos

Posted by mark on July 7, 2008

WELCOME CARTER to the UC to J-POUCH BLOG – NEW BLOGGER INTRODUCTIONS!
Carter S. (22 years old) has been generous enough to share his story and surgery photos with our UC to Jpouch Story readers. 
Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    
Be sure to send him comments and welcome him both the blog and his new life with a J-Pouch.  He tells an incredible story (he’s a great writer as well 🙂  We are so happy to have Carter sharing his story with us and with ya’ll.

 

Carter.S with shirt over ileostomy bag

Carter.S with shirt over ileostomy bag

Here is the link to his story and more photos   Surgery Photos and Story: Carter S.    
 

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