THINGS I NEVER THOUGHT ABOUT:

If you are a parent of a child with an ileostomy, you probably have many questions and concerns. When the surgeon said your child needed this surgery, your first reaction may have been, “Is this the only choice?” Your doctor no doubt assured you that the ileostomy was necessary to save your child’s life. You may have felt shock.

You may have asked yourself, “Why did this happen to us?” Talking to a good friend, your doctor, clergy, ostomy nurse, or the parents of a child who has an ileostomy helps. This will prepare you to help your child adjust to the ileostomy. Deal with your own feelings first, then you may give your child the emotional support he or she needs.

If you are feeling guilty or responsible for your child’s illness and surgery, this is a normal feeling for parents. You may think that your dreams have been shattered and may wonder if your child will be able to do the things that others do. Most parents worry about their child’s life span, ability to work, adjustment to living with an ileostomy and in later years, marriage and family. These are normal concerns of all parents facing major changes in their child’s life. (My poor mother- I love you mom)

When your child is in the hospital, be there as often as possible. Being in the hospital and having surgery are frightening at any age. At this time your child is especially vulnerable and needs to feel wanted and reassured about your love. You being there makes him/her feel secure.

Be prepared for how you will feel seeing an opening on your child’s abdomen with bowel contents running into a pouch. Your first reaction, in your child’s presence, is vitally important and must be as positive and casual as possible.

If your child has a fever or other symptoms, don’t panic. He or she will have all the aches and pains that other children have. When in doubt, call your physician.

~I am wondering now, what my parents really went through. My mom had 7 children by now. My dad and stepdad really weren't involved in my care, she did it all alone. I'M REALLY SORRY MOM.

Onto embarrassing moments: You may be worried about the response others may have to gassy noises. You will find that these noises sound louder to you than to others and may sound like stomach rumbling to them. If you are embarrassed by these rumblings when others are nearby you can say, “Excuse me, my stomach’s growling.” If you feel as though you are about to release gas when you are with people, casually fold your arms across your abdomen so that your forearm rests over your stoma. This will muffle most sounds.Check with your ostomy nurse about using oral products such Beano. ~Beano has become a close and personal friend of mine. LOL ~This was a very toughie for me during high school. Imagine just having had this surgery done, not knowing the major causes of it in order to stop it, and being in many quiet class rooms. You wonder why I had a breakdown?

Foods: Lord, having to get started with this is tough. Everyone will be different. For me, so long as I stayed with a soft diet, or meat, I was okay. Vegetable are rough, literally. If you love vegetables, as I do, you must chew very well ! You will usually be the last one sitting at the table during holidays or cookouts. Special occasions, I always want to taste everything. There were many things I was advised against eating, but I usually TRIED them anyhow. I learned over the years what I could eat when I was at work or before, and what I should wait to eat on the weekend. Seriously. You need to schedule your favorite but "unadvised" foods. Otherwise you WILL have problems.

Some More Information about Familial Polyposis:

Colorectal polyps

A "polyp" is a somewhat indefinite term, which simply means a growth on the lining of the intestine. Most polyps are completely benign (i.e. not cancer). Nevertheless, polyps are important because the most common types ("adenoma," or "adenomatous polyp," "tubular adenoma," or "villous adenoma")~this is what I had~ are precancerous. That is, the polyp may transform into cancer if it grows large enough. Although most polyps do not turn into cancer, most cancers probably do arise from initially benign adenomas. Therefore polyps, when discovered, should be completely removed.

Even if a biopsy (small tissue sampling) of a polyp shows that that it is benign, it is possible that there is in fact cancer in another portion of the polyp that was not sampled with the biopsy.

Almost always, polyps can be removed by means of colonoscopy. This is a long flexible telescope that can be passed via the rectum up throughout the colon (see colonoscopy, below).~I had to have this done about every 3 mo. until I finally had surgery because of the extremely large size of my polyps and the fact that the #'s of them had quadrupled~

Small instruments can be manipulated through the colonoscope to remove the polyp.

Colonoscopy is usually a brief outpatient procedure. Occasionally, a polyp may be too large to remove with colonoscopy. In that case, surgery is usually recommended to remove the polyp.

Any individual who has had a colon adenoma removed is more likely than average to form polyps again, in other areas of the colon. Because polyps are precancerous, polyp-forming patients are at higher than average risk for developing colorectal cancer in their lifetimes. Therefore periodic checkup colonoscopies are usually recommended for these patients, in order to detect new polyps as they appear, and to remove them. By doing this, the risk of colon cancer can be significantly reduced. For that matter, patients who have ever had colon cancers removed have the same increased risk of forming colon adenomas, and are at excess risk for forming new, second colon cancers in their lifetimes. Thus, periodic checkup colonoscopies are usually recommended for colorectal cancer patients, just as for polyp patients. Occasionally, polyps may turn out to be "hyperplastic polyps," instead of adenomas (this determination is made by sending the polyp to the pathology laboratory and studying it under a microscope). Hyperplastic polyps are not premalignant, so future checkup colonoscopy is not required for these polyps.

Adenomatous Polyposis Coli

Adenomatous polyposis coli (APC) is also known as "familial polyposis." This is a genetic(inherited) condition in which a multitude of adenoma polyps is present in the colon. There are usually well over 100 polyps present, which is too many to remove by colonoscopy. ~now enters MY total colectomy~ Sometimes there may be precancerous polyps in the upper intestine also. Rarely, there may be "desmoid tumors" in the abdominal wall or inside the abdomen.~these, thank God, I didn't have~ These are poorly understood tumors, which sometimes act benign and sometimes act malignant. Because of the numerous adenomas in the colon, APC patients have a 100% chance of developing colon cancer in their lifetime, usually before age 40. For this reason, the colon should be removed soon after the diagnosis is made.

The options for surgery are the same as for ulcerative colitis (see below). APC patients should have their offspring checked for the condition, since there is a 50% chance of passing this on to children. Usually the checkups begin in the early teen years and are done by colonoscopy.

~My daughters have been going to our local Children's Hospital for the past 6 years, on a bi-yearly basis, to have colonoscopies done to keep in check for polyps. We have been very blessed. In the next few months they will be having genetic testing done (blood drawn) to see if they even carry the gene. What a relief! If they are in the clear, no more colonoscopies for several years.

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=fap

Now onto my pregnancies: This is just in my case, and I am curious to see if anyone else had this problem; the area in which they had removed my rectum caused my uterus to drop severely. A "tilted uterus" they called it. And it never dawned on me, all those years of trying to get pregnant, that that would really be the only problem I was having in conceiving. We had tried everything short of IVF. That was our next step. Then I was watching a movie one day and got an idea. LOL I just had to come up with a device to help the impending sperm get to their destination. I won't really say, unless through private email, what that device was, but IT WORKED!!! I had no problems whatsoever during my first pregnancy. It did get a little tough emptying that pouch when my belly got so big I couldn't see my feet. I am serious, no problems. But when it came to the delivery, that extremely tilted uterus gave us fits. The babies head would not come up out of that little space the removed rectum had created. And because I didn't have my birthing coach present, we had to turn to a ceserean. ~If you have a good coach, you will probably never have that problem. I wasn't high risk, but my Dr. would not let me perform all the tricks that would have prevented the ceserean without her. *On January 15, 1992 I gave birth to a beautiful baby girl who weighed 8 lbs. 8 oz. and was 21" long. Larissa Leahnn.

 More than likely, throughout your pregnancy, your OB will educate him or her self about your ileostomy. Knowing how things are wired up now inside of you is important should they have to perform a C-section. So don't worry.
My OB cut right along the scar line from the Ileostomy surgery. I was not familiar with any of this and did worry about that a little, but it actually healed quite nicely.
I breastfed my baby. And I don't know about anybody else, but man did that hurt. When you breastfeed, your uterus will contract from quickly shrinking back to it's original size.
I seriously ended up weighing less, 3 weeks after delivering, than I did before I became pregnant.
So be prepared, but breastfeeding is always best for your baby.
For myself though, and this may not be the case with everyone, I began to lose calcium from my body.
I was told by my PCP that it was all due to my ileostomy. It was tough enough for "me" to get the calcium I needed on a regular basis, let alone getting it to a baby through breastmilk. So I was then started on a regimen of daily vitamens and supplemental calcium.
I started losing fillings from my teeth, and my teeth began to crack and break. By the end of my daughters first year, I had to have several teeth pulled and had to wear a partial plate to replace them.

I was happy with just one child. We had tried for a few years to become pregnant, and had even began the adoption process. So we were feeling pretty blessed.
When Larissa was about 18 mo. old, I learned that I was pregnant again !  Wow, you couldn't have imagined how happy I was.

 With the depletion of the calcium from my body happening the way that it did, a second pregnancy had me very worried. I worried constantly that the little miracle growing inside of me wasn't going to get the nutrients that it needed to grow properly. By the 8th mo. of this pregnancy, I had to have all of my top teeth removed and most of the bottom.  I was feeling pain in all parts of my body as bones were softening, and cartlige was wearing away.
I was taking pre-natal vitamens along with extra supplements throughout.
But through ultrasounds I was relieved to see that "she" was thriving. I would worry about "me" after I got her safely into this world.
Two weeks past my due date, again, I was sent into the hospital to have my labor started. It was a Sunday evening. I knew what to expect, though I did have a different OB at this time. But I wasn't going to back down. I was going to do everything I could to have a natural delivery. We had practiced and planned. By Monday evening, things were going very slowly. So my Pitocin was upped and gel had to be used to soften the cervix in hopes of helping the labor along at a little faster rate. 
Tuesday morning things were slowed down so that I could take a break, walk around, and have something to eat finally. At first it didn't bother me, I was concentrating so hard on what was going on. But I had gotten up to go to the bathroom and nearly fainted from my glucose being so low.
Throughout all of this, in the back of my mind, was this fear I had had throughout my pregnancy. In the beginning of the pregnancy, before I even knew I was pregnant, we had had a fire in our kithchen. Our washer and dryer, along with soap and bleach, were in our kitchen area. There was a fan blowing in the kitchen, so the flames swooped against the cupboards and back in a rage, engulfing the entire kitchen, chemicals and all. I had gone to the side of the house and brought in the water hose to try to stifen the flames. I just needed to get to the fire extinguisher on top of the fridge. The fire was a result of an overheated, and forgotten, pan of grease. Water and grease do not mix in a fire.
I had inhaled many chemicals that day. I was treated momentarily by the fire and rescue crew (including my neighbors Pam and Steve Carletti) with oxygen. I was alright. So I thought.
Once I found out I was pregnant, I was in constant fear that something was going to go wrong with my pregnancy as a result of all the chemicals I had inhaled. For a few mo. I had had the recurring nightmare that I was going to die during delivery. A fear that I had shared only with my friend Pam.
And there Pam sat, on day 3 of my labor, by my side, leaving at home her own 2 year old with his daddy Steve, to be by my side and reassure me that everything was going to be okay.
Wow. I had some good friends back then.
Late Tuesday afternoon, early evening, the Pitocin was turned back up and my water was broken by my OB.
Then the labor REALLY began. With Pam on one side, and my husband on the other, we got through the epidural and performed every trick we could think of to get that baby in position and out.
I dialated from 3 to 8 in a matter of 4 hours that night. The trick was to get on my knees, head of the bed up, arms and head leaning against the top of the raised bed, my tummy hanging low. At about 6 am, the nurse came in to check me. I was fully dialated and the baby's head was already entering the birth canal. She was right there, ready to meet us.
I remained in that position, even as the nurse checked my progression.
In comes the OB, he says " turn over and lie on your back so I can check you".
Big mistake.
I still wonder to this day why he couldn't check me in the position I was already in, just like the nurse did?  I was even prepared to deliver her that way. But so many of todays OB's are in such a hurry, they want things done their way only.
Needless to say, we had already gone over 24 hrs. of having had my water broken, and the baby was beginnig to stress, so onto the surgical room we rolled.
March 30, 1994, Chelsi Renea was born.  19" long and 9 lbs. even.
Good thing I didn't have to try to push that butterball through, was what I was thinking when I saw her. LOL
This cesarean healed well also. And Pam, thank you from the depth of my heart for being by my side for 4 days straight. When we got to the room and they brought Chelsi in, Pam was the first to hold her. It was the least I could do.
Having support, good support, before, during and after a pregnancy when you are an ostomate is important.
A mother has small fears anyhow during her pregnancy, and having an ileostomy adds even more.
Keep yourself educated about any problems or concerns which could arise when you are an ostomate.
I know it's hard to eat well with this problem. But do what you can to insure that your body gets what it needs, for you and for the baby.
Don't be worried about a C-section.  But do try to inform your OB of all of your delivery plans. Include them. Make sure though to understand that you may want things to go a certain way, but your OB usually always knows best.

Get involved with your nutrition needs early on after having any ostomy surgery. Work especially close to a certified nutritionist if you choose to become pregnant, before, during and after. Know what your risk factors are.
I have talked with a few ostomy moms since then. Some had a much easier time than I did. Everybody's body is different. Just get to know your own on an intimate level.
The only daily,bothersome result that I incurred with having been pregnant was stretch marks. I had stretch marks in only one area, around my stoma. Strange I know. But at some point and time, they may interfere with the adhering of your pouch.  At this point I became very familiar with any kind of "fill in" type pastes or gels that I could get my hands on. It's the one part of your body that you really cannot apply "stretch mark reducers" of any kind. I relied heavily also on the Hollister brand wafers. If I let them set out and become room temperature, soften just a little, when I slowly applied them, they pretty much would sink into the small folds of the stretch marks, sealing up any ridges that might otherwise allow leakage from your pouch.
You may want to explore your family history, and be tested to see what the risks are of passing along your health problems.
I didn't do this. I was on a path of proving my "normality". It was very selfish of me. And I pray with all my strength, that the DNA tests that both of my girls are about to have, come through with flying colors.
And even then, will there children be effected?
With my FAP, it is unknown as to it's origin. I've been told that it was just a freak accident of a mutated gene.
But I will always worry and wonder if I did the right thing by having children.
I would never trade them for anything in this world though. It will be through my trials and errors though that I will be able to educate my girls about this disease. IT IS HEREDITARY.
If you should have any of the problems that I have had since the birth of my children, early on, please do all you can to turn things around for the good, for your's and your childrens' sake.
Be healthy. Be blessed.

Anita