Friday, June 11, 2010

Ulcerative colitis

We are home and we are exhausted. I got about 2 hours of sleep last night and today has been pretty crazy. All 3 kids are sleeping so I am going to get horizontal ASAP.

The doctor confirmed that right now Sophie has ulcerative colitis with a possible later diagnosis of Chrohn's. We will have the biopsy and blood work results back mid to late next week.

I would like to thank all that have lifted our family up in prayer over the past week. Your love and support means more than I can express. Seriously, I am so thankful for all of the kind words, prayers and messages that we have received.

Now here is the description of Ulcerative Colitis for those who would like to know:

Copied from

Ulcerative colitis and Crohn's disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s can affect any part of the digestive tract. To learn more about Crohn’s disease, see the topic Crohn’s Disease.
What is ulcerative colitis?

Ulcerative colitis is a disease that causes inflammation and sores (ulcers) in the lining of the large intestine, or colon. It usually affects the lower section (sigmoid colon) and the rectum. But it can affect the entire colon. In general, the more of the colon that’s affected, the worse the symptoms will be.

Ulcerative colitis can affect people of any age, but most people who have it are diagnosed before the age of 30.
What causes ulcerative colitis?

Experts are not sure what causes ulcerative colitis. They think it might be caused by the immune system overreacting to normal bacteria in the digestive tract. Or other kinds of bacteria and viruses may cause the disease.

Ulcerative colitis is not caused by stress, as people thought in the past. But if you have ulcerative colitis, stress can make it worse.

You are more likely to get ulcerative colitis if other people in your family have it.
What are the symptoms?

The main symptoms are:

* Belly pain or cramps.
* Bloody diarrhea or an urgent need to have a bowel movement.
* Bleeding from the rectum.

Some people also may have a fever, may not feel hungry, and may lose weight. In severe cases, people may have diarrhea 10 to 20 times a day.

Ulcerative colitis can also cause other problems, such as joint pain, eye problems, or liver disease. But these symptoms are more common in people who have Crohn’s disease.

In most people, the symptoms come and go. Some people go for months or years without symptoms (remission). Then they will have a flare-up. About 5 to 10 out of 100 people with ulcerative colitis have symptoms all the time.

Ulcerative colitis sometimes leads to more serious problems. It can cause scarring of the bile duct. This can lead to liver damage. In rare cases, severe disease causes the colon to swell to many times its normal size (toxic megacolon). This can be deadly and needs emergency treatment.

People who have ulcerative colitis for 8 years or longer have a greater chance of getting colon cancer.2 Talk to your doctor about your need for cancer screening. Screening tests help find cancer early, when it is easier to treat.
How is ulcerative colitis diagnosed?

To diagnose ulcerative colitis, doctors ask about the symptoms, do a physical exam, and do a number of tests. Testing can help the doctor rule out other problems that can cause similar symptoms, such as Crohn’s disease, irritable bowel syndrome, or diverticulitis.

Tests that may be done include:

* A colonoscopy. In this test, a doctor uses a thin, lighted tool to look at the inside of your entire colon. At the same time, the doctor may take a sample (biopsy) of the lining of the colon.
* A barium enema X-ray or an X-ray of your belly to show pictures of the colon.
* Blood tests, which are done to look for infection or inflammation.
* Stool sample testing to look for blood, infection, and white blood cells.

How is it treated?

Ulcerative colitis affects everyone differently. Your doctor will help you find treatments that reduce your symptoms and help you avoid new flare-ups.

Doctors often prescribe medicines to reduce inflammation, such as:

* Steroid medicines. These can help reduce or stop symptoms. They are only used for short periods because they can cause side effects, such as bone thinning (osteoporosis).
* Aminosalicylates. These can be used to reduce or stop symptoms (sometimes at the same time as steroid medicines). After your symptoms are under control, you may take these medicines to help prevent flare-ups.
* Medicines that control the immune system (immunomodulators). You may need these if your disease is severe and aminosalicylates don't keep it from flaring up.

Some people find that certain foods make their symptoms worse. If this happens to you, it makes sense to not eat those foods. But be sure to eat a healthy, varied diet to keep your weight up and stay strong.

If you have severe symptoms and medicines don't help, you may need surgery to remove part or all of your colon. Removing the entire colon cures ulcerative colitis. It also prevents colon cancer. But it does have some serious risks. Still, most people who have surgery are glad they did.

How will ulcerative colitis affect your life?

Ulcerative colitis can be hard to live with. During a flare-up it may seem like you are always running to the bathroom. This can be embarrassing and can take a toll on how you feel about yourself. Not knowing when the disease will strike next can be stressful. Stress may actually make the problem worse.


Joanne said...

Ugh, I am so sorry. You must be exhausted. I pray that they can find a treatment that works for little Sophie and she will start at least feeling better soon.

Continuing to send prayers your way. In the mean time, hang in there and try to get some rest. - Mo

Hi Laura,
I'm so sorry your family is going thru all this. I'm glad you're going to get some rest. My Dad was diagnosed with ulcerative colitis when he was a teen, and I'd love to share all that our family has learned thru the years that help manage it. The good news is that it's a manageable condition. Diet is really important. When my Dad really isn't feeling well, he eats lots of arborio rice, pasta, and potatoes with olive oil or butter and parmesan. The brat diet is great for flare ups. It's very soothing on the stomach. Baked apples are also great. I'd be happy to talk to you, and my Mom who manages my Dad's colitis like a pro, would be happy to talk to you too. Best wishes

Meri said...

I'm exhausted reading that. So much to take in!! I'm so sorry Laura...I'll pray that they will find a successful treatment plan for your Super Hero Sophie.

connie said...

I am so sorry, I will continue to hold your family in my thoughts and I hope that you also get some much needed sleep my friend.

Hang in there and we are all here for you.

I am so sorry I will keep your daughter and family in my prayers.

I'm so sorry, I don't even know what else to say. I'll be keeping you all in my prayers and hoping there is better news on the horizon for her condition. I'm a phone call away if you need anything.

Hugs to all of you.

AjsMommy82 said...

Oh I'm so sorry!!! Poor little Sophie!!! I'll pray that you guys can find some medications that work well for her little body and that she wont have to deal with many (if any!) flare ups!!!

My sister started out with ulcerative colitis and "chose" to have her entire colon removed and most of her intestines and then had a later diagnosis of Crohns. She works full time is married and has been able to lead a very "normal" life in spite of these rotten diseases and I know Sophie will too!

Hang in there!!! (((Hugs!!!)))

Oh, Laura, I'm so sorry! I hope that a diagnosis brings treatment and I hope the treatment brings relief to your beautiful little Sophie. I'll continue to keep you in my thoughts and prayers!

alix said...

Big hugs mama Laura. Like mentioned before, it can be managed. It is all so overwhelming right now. Make sure you get the rest you need and take care of yourself.
You are in our prayers

Amy said...

Dang Laura...seems like so much for a little one. Yet....we know how it goes. You will be amazing and Sophie will plug her way through this like a champ. LOTS of ((HUGS)) and prayers being sent your way as you begin another journey!!

Penny said...

Big hugs to you Laura - I am so sorry. I am sending prayers and healing thoughts your way. Love to Sophie and to you. Hang in there.

April Ann said...

We are sending lots of love your way Laura. You handled D- your family will handle this too. We will all be here to support you.


Heidi =) said...

Our kids and their health is something that is so hard to let go of and trust God with. From what I have learned from your blog, you have an amazing family and this little bump in the road will not keep your beautiful little girl from growing up to be nothing short of amazing! I'm continuing to lift your family up in prayer as normal takes on a new look yet again.

Wendy said...

Much love you you....what an incredible blessing your children have in you for their mother.

While, I feel a sense of relief that the "C" word wasn't confirmed....I'm still just heartbroken that sweet Sophie is dealing with this mess.

Please keep us in the loop. I imagine this will bring and entirely new perspective to your blog...along with many new friends to help you walk that road.

Unknown said...

Love to you and yours Laura. Thank you for the informative post and I have been thinking of you guys over this past week.


phonelady said...

Laura remember when I was dxed with the big d it was a considered a death sentence , well I am still here and healthy as a horse and Sophie will be too . I am keeping your family and dear sophie in our prayers . stay strong and they may have gotten something wrong so just hang in there . God is good and all will be okay . Im keeping you guys in my prayers .

LaLa said...

Thanks, Ladies - - - your words, thoughts and prayers mean a ton!

Amanda said...

You have a lot on your plate! I am so sorry for Sophie's diagnosis.

I was originally dx with Ulcerative Colitis and later Crohn's. I do have to say that the first couple of days as I read about all of the things that can happen I was soooo depressed. But, even though I have been considered a severe case, most of those horrible things have never happened to me (fistulas, resections, etc.)

I have had some bone thinning as a result of steroids, but I take calcium supplements in addition to a prescription and have regained bone mass.

I was pretty sick after my first two babies - sick enough to be hospitalized the second time - but the disease never endangered my baby and was easy to control while I was pregnant.

After I was hospitalized I started a drug called Remicade that has been life changing for me. It is like I don't even have Crohn's Disease any more. I think it is more of a last resort when other treatments don't work, but it has been amazing for me and for my sister, who has a dx of Ulcerative Colitis.

I hope I'm not overwhelming or boring you, I just wanted you to know that I have been able to have a pretty normal life and have been able to have children. I know that doesn't take away the sorrow of seeing your baby girl suffer. You and your family are in my prayers (I have a little Sophie too).

Oh Laura - I'm so sorry! It's just not fair, is it? I know you'd take this from her in a heartbeat if you could. Your family is so lucky to have you. I know it must be overwhelming right now but I also know that YOU will handle this with the grace and strength and endurance that you have Nate's D. We will continue to pray for you all and pray that you find successful treatments for Sophie that enable her to have a very healthy, very normal life. ((hugs)) to you, sweet friend!

I am so sorry to here about your daughters diagnosis. I cannot imagine how you are all feeling now. Fingers crossed that all will settle back down to 'normal' and you all have a wonderful summer. Hugs to you all.

Kirsten said...

Oh Laura, I'm so sorry to hear about Sophie's diagnosis! Hopefully the UC won't develop into Crohn's. Neither diagnosis is a good one, to be sure, but maybe the UC will be easier to manage. My dad has Crohn's, and like Amanda, who commented above, he is now on Remicade to control his symptoms. Certainly not a cure but it does ease the pain some. My folks would probably be happy to talk to you about this diagnosis as well as their experiences when I was diagnosed w/T1 at 21 months. Hang in there!

Tracy1918 said...

Just wanted you to know that I'm still praying for you and Sophie. I pray that doctor's will figure out how to clear up all her symptoms quickly.

You are a great mom. Sophie is blessed to have you in her corner. : )

Karen said...

I'm so sorry you have to deal with this. I'll keep you all in my thoughts - especially little Sophie. (That was my grandmother's name!)

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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