UC to J-pouch to Crohn’s

by on Wednesday, January 7, 2009 3:52
This entry is filed under: Photos

Meet LizI guess it all started when I was about 15 years old. I had been to my grandmother’s house for a visit, then dance class, then the non-stop vomiting and uncontrollable bloody diarrhea started. I begged my mother to, “please, please not take me to the hospital,” but by the time she was dragging me only by sheer determination to the car (vomit bag in tow), I was too weak, too tired, and too scared to fight. At the ER they gave me fluids, a prescription, and dismissed me a few hours later with “gastroenteritis” or food-poisoning. I missed a week of school.

Cut to a year later. I am now 16. It’s the summer before my junior year of high school. I’m in the basement making a scrapbook for my grandfather for his birthday. I get up to use the restroom and when I stand up there’s blood running down my leg. Several trips to the doctor later, when I’m lying in a hospital bed after my first of many colonoscopies, I am told I have ulcerative colitis. The disease is explained to me, I am given a few prescriptions, and when I am stable, I am released and sent home.

Being a teenager with a bowel disease is not an easy thing. It is embarrassing, but beyond that you are just trying your damnedest to be normal. It requires a lot of effort, and a lot of denial. I don’t think I was ever in remission with my disease. When I learned what Prednisone did to me, what it meant for me, I lied to my doctors about my symptoms to avoid taking even more. Once a pretty, tiny dancer, I’d ballooned up thanks to the steroids. I didn’t feel like myself and I didn’t look like myself. I began getting acne from the drug, and there was always, always blood in the toilet. It was this way for years. I was a dance teacher. The drugs and the disease began affecting my abilities and my passion. Now, I’m sure I was depressed, but too much in “fight or flight” mode for the emotion to register.

When I went off to college, I had regained determination. I had a 4.0 my first year, but I went out very little with my friends. I just didn’t have the energy for it on top of everything else. Sharing a bathroom with all the girls on my dorm floor was tough too, but I did it. My sophomore year in college, my health worsened. I was seeing a new gastroenterologist, on new medicines, basically maxed-out on a version of every drug available for UC at the time, and I was still sick. I went to the bathroom roughly 30 times a day, maybe more. There was always blood. It had become my new norm. That, and the excruciating pain that I described as writhing, twisting, cutting pains. I would literally double over sometimes because it felt like someone was stabbing me with a knife in the abdomen. It got to the point that I could hardly leave my apartment, or get out of bed. I was so weak from blood loss, fatigued from the inflammation, depressed from the disease, and what my “life” had become. I thought about suicide as the only way to escape the pain and suffering, but I knew I’d never do it. I didn’t want to die. I wanted to live again. I began to pray because I literally did not know what else to do. For about one month, God gave me rest. I went into an unexplained remission for the first time since my diagnosis and it was amazing because it gave me the perspective I so desperately needed. When my symptoms returned a fast and furious as ever, I decided it was time to think about surgery and get that horrible, diseased colon out of my body.

I maintain that it is the best thing I’ve done health-wise for myself. I felt immediately better, and although I had some complications throughout the next two “J-pouch” surgeries, I was so pleased with the results.

After more complications, my surgeon and new GI discovered that I had Crohn’s. I thought my world would come crashing down because for years my mantra had been, “Well, at least it’s not Crohn’s.” Yet, in hearing those words, “You have Crohn’s disease” and realizing that I’d had it all along, I stopped living in fear of “what if” or “what could” and realized that it didn’t really matter what I had or what it was called as long as I felt okay today. I’ve since had more up and downs and more surgeries, but I’m still better than I’ve been in years. Living with a chronic auto-immune disease is not easy. If you don’t have a paranoid personality, it will teach you to have one. My great, supportive friends and family have gotten me through it; so has my new-found faith. Having a J-pouch with Crohn’s is a daily battle. I know how important it is to be forthcoming with my doctors, to be aware of my physical and mental health, and to be an advocate for these diseases. I am on more medications than I can count, but I don’t mind. They help me to live a more normal life. I try to take it day-to-day, count my blessings, and live each day to the fullest, because all any of us have are sweet moments. Of course, sometimes I am bitter, cynical, and you will probably see that come out from time-to-time on this blog. Overall I am just grateful to have the chance to make a difference in this world and be a voice for those with IBD. Thanks to Mark & Megan for setting up this great blog and for giving me this opportunity.

Blessings,
Liz

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10 Responses to “UC to J-pouch to Crohn’s”

  1. avatar

    ACash75 says:

    January 7th, 2009 at 10:29 am

    Thank you so much for sharing your story! I totally related to your comment about the disease making you paranoid. So true, so true. And I too feel grateful for the chance to make a difference in this world.

    Abby

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  2. avatar

    Candy says:

    August 31st, 2009 at 12:53 pm

    Thanks for sharing your story Liz. My 18 year old daughter is in the same condition as you. She also went through the UC diagnosis, J pouch, and now Crohn’s. It’s been an emotional train wreck for the whole family. She begins biological drugs this Fri. (9/5) with hope it will give her some relief. She’s away at college and does need to come home every couple weeks at first until she’s able to give herself the meds on her own.
    Until I read your blog I felt like my daughter was the only one to go through all these levels of illness and then to end up at this point. Thank you for letting me know she’s not alone. Candy

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  3. avatar

    Greg Elmore says:

    September 22nd, 2009 at 8:02 pm

    Thank you for sharing your story it was a blessing. I was in the best shape of my life at 19 when I completed six months of training in the Air Force at San Antonio, Texas. I was excited about my first assignment near Frankfurt, Germany. I was in Germany less than a month and I started bloody diareah and weight loss with bad abdomen pain. I was an ocean away and scared to death. I was a security policeman and had post with no latrine in sight. I would pack my Air Force form 1 (TP) in my alice pack and go where ever I was. This was 1986 and I was told it was either UC or Chrohn’s. They treated me until the first Gulf War and before I went to Saudi a Colonel coded my records and I was retired with Ulcerative Colitis and Anemia . I picked up Federal Blue Cross found a support group and a surgeon to perform the illeoanal pull through surgery. I went form my my normal UC 160 lbs to 220 I am 6’4″ tall. I started my family now I have four beautiful daughters. Along the way I have been diagnosed with an anticoagulation factor in my blood because they found messenteric (blood clots) thrombosis. Then a couple months later a came down with Rheumatoid Arthritis (RA). Back to my old UC friend prednisone, they tried Enbrel, then Remicade, and now the only drug my RA responds to is Humira. This all happened twenty two years after my J Pouch surgery. Recently I have been bleeding from my pouch after a stint in the hospital for a blockage in my bowel duct and stomach and my anemia rearing its ugly head. So an exploration of my J Pouch shows ulcers and inflammation so now I could have Chrohn’s Disease. This vs Pouchitis in which occurs usually twice a year since my surgery. I am keeping my faith too walking with the lord makes everything possible and everything much easier. Thank you for this blog. Please anyone reply if they are collecting autoimune’s I was adopted so I really don’t know my family history.

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  4. avatar

    patti says:

    September 19th, 2010 at 11:38 am

    I had ulcerative colitis in 2000. I had surgery,had my entire colon removed and now have a j pouch.

    For the last 6 months,I have had extreme diarherra,and unable to sometimes control my bathroom habits/shall I say.

    Can you get Crohns disease and or IBS even though you have had the colectomy and have a j pouch?

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  5. avatar

    Lu-ann says:

    August 1st, 2012 at 5:16 am

    My son just recieved those words too.He is so tired of fighting.It has been10years of suffering,I wish he could talk to you,your blog helps but he sees no light at the end of the tunnel.i am trying to be strong for him but I hate to see him all the time in pain.Help me to be strong for him.No words I say helps.The ups and downs he feels I feel.Im hoping his therapist can help him.

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  6. avatar

    Neal says:

    November 9th, 2012 at 7:25 pm

    Wow a very brave story. I got it when I was 18 around Christmas time. I had the same issue. Uc than colon cancer than j pouch than crohns. My question for you is what do you eat? Please be careful with prednisone. I’m almost off of it and it’s been scary and crazy. Do you take any probiotics?

    Thank you for your time and hope you stay healthy

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    avatar

    Lizz Reply:

    Aw thanks, guys :) I don’t do Prednisone too often anymore.  I eat basically whatever I want, but I cut down on all meats because they don’t seem to process well.  Same with large amounts of dairy.  I will eat a small portion when I’m craving something, but I try to eat whole foods, fruits, veggies, etc. I do many small meals a day, eating slowly with lots of water. I love veggies but too much of anything for me=unhappy pouch. I like to take a walk after meals because I feel it helps things move around.  I do yoga a lot which helps my pelvic floor issues and joints/overall mental/physical health.  I drink kombucha a lot which has probiotics.  Occasionally, I’ll do acidopholus supplements.  I’ve been through much more, so check out recent posts for more recent info. Best of health!

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  7. avatar

    Lora says:

    April 9th, 2014 at 11:03 am

    Hello, I’m 33-diagnosed with UC @ age 4-total colectomy @ age 5, Jpouch @ age 6. I’ve fought pouchitis for my entire life, tried every antibiotic. I’ve tried Humira, Cimzia, Remicade. Today had more scopes, stomach is great, small bowel is great, j pouch is not so great. Ulcers, mucosa, inflammation, stricture. I’m ready to get it ripped out. Also have Celiac Disease. Feeling like I was born with a bad gut!

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