Protein-Losng Enteropathy

MBombardier · Post by **MBombardier** » Fri Jul 27, 2012 8:56 am

A dear friend found out yesterday that her 5yo son has protein-losing enteropathy. He was born with a severe heart defect and has had several surgeries. He spent his fifth birthday in June in the hospital recovering from the last surgery, a Fontan procedure. The enteropathy has started since the Fontan procedure.

My friend has celiac, and had Joshua tested. He has a gluten sensitivity gene (not celiac). She took him GF last year to prepare for the operation, but they can't afford for the whole family (they have many children) to go GF so there is continual cross-contamination.

The father is a civil engineer who works for the government, but they have stunning medical bills from on-going problems not only with Joshua but a couple of adopted children.

I have a tendency to look at my own health issues and feel some self-pity because I'm mourning the care-free life I used to live. Then something like this brings it home to me that I am truly blessed that my health problems are relatively minor, and that my loved ones are healthy and happy. I am grateful.

desertrat · Post by **desertrat** » Fri Jul 27, 2012 10:39 am

Marliss,

Beautifully said! We all tend to look at the world we once had and mourn. It is only natural. Then, like you, I look around at others who are suffering so much more, and I have to think "There, but for the grace of God, go I".

Every day and night I give thanks and praise to my Lord and Savior, who has graciously and lovingly given me three wonderful children, the gift of living in America, and the knowledge that " I can do all things through Christ which strengthen me." Philippians 4:13.

Yes, I am truly blessed.

Mandy

Zizzle · Post by **Zizzle** » Fri Jul 27, 2012 12:19 pm

In so many respects, we are the lucky ones...

carol1946 · Post by **carol1946** » Fri Jul 27, 2012 3:43 pm

Such a small world.....My grandchild number 7, Ember, turned 1yo on the 13th. She was diagnosed with total aomulous pulmonary venous return at 2 days old and went through surgery at 10 days old.....a definite little fighter. We have been truly blessed, but continue to pray that she stays well.

Today I received an email from daughter number one, advising that her husband's brother was just diagnosed with colon cancer.....praying that it is in the early stage. Today I feel like my CC is just small peanuts.

When diagnosed with CC, my GI said that the good news was that I would never get colon cancer. Any thoughts???

Sending prayers to you and yours,
Carol

Zizzle · Post by **Zizzle** » Fri Jul 27, 2012 9:04 pm

When diagnosed with CC, my GI said that the good news was that I would never get colon cancer. Any thoughts???

I sure would like to believe that, but knowing how little doctors know about MC, I wonder how they can be so confident that we're not at excess risk. On the one hand, colon cancer seems to happen to people who don't empty their colons often enough. That's not our problem! On the other hand, doesn't all chronic inflammation have the potential to lead to cancer? I suppose we have statistics on our side so far, and the cumulative experience of this group...no colon cancer cases that I'm aware of. Can anyone confirm that?

Lesley · Post by **Lesley** » Fri Jul 27, 2012 11:12 pm

When things are really bad for me people tend to say "it can't get worse". Well, it always can, and I let them know it. My kids and their kids are well and happy!
I have lost so many close people in the past years. My closest person in the world died of breast cancer 3 years ago. Her mother, age 94, lost her sister (nearly 100) last year. She is so handicapped, and yet she carries on.

Yes, it can be worse.

Polly · Post by **Polly** » Sat Jul 28, 2012 5:49 am

We know that those with celiac are more prone to a cancer (lymphoma) of the small intestine. But I have never heard that MCers do not get colon cancer. If it's true, maybe it's because we have more frequent colonoscopies, since it is the early removal of polyps during the procedure that prevents them from developing into cancer. FWIW.

Polly

Gayle · Post by **Gayle** » Sat Jul 28, 2012 8:58 am

When diagnosed with CC, my GI said that the good news was that I would never get colon cancer. Any thoughts???

Hi Carol1946,

According to Mayo Clinic (and American Cancer Society) – statistics indicate that a diagnosis of MC does NOT bring with it an increased possibility/probability of colon cancer. Therefore, there is NOT a recommendation for increasing the frequency of the routine SCREENING colonoscopy in a person with MC. The recommendations for people with the other IBD’s are different.

As we didn’t hear exactly how your Dr. phrased this statement – is not possible to know exactly how that statement was made.

But I would believe that is what he/she was trying to reassure you of.

However, your chances for developing colon cancer ARE the same as the population in general. You are NOT immune from the possibility of colon cancer by virtue of having a diagnosis of MC. However, the presence of MC, by itself, is not a reason that SCREENING colonoscopy should be recommended more frequently than for the general population.

Next time you have a chance to talk with this Doc, ask for clarification of what you heard him/her say.

Cheers,
Gayle