Crohn's disease and Timmy's Journey

Tim's date with a pill camera

2012-12-13T16:21:00.001-06:00

Tim had his first experience with a pill cam a few months ago.

The capsule is the size and shape of a pill and contains a tiny camera. After a patient swallows the capsule, it takes pictures of the inside of the gastrointestinal tract. The primary use of capsule endoscopy is to examine areas of the small intestine that cannot be seen by other types of endoscopy. This type of examination is often done to find sources of bleeding or abdominal pain.

Tim tolerated the pill cam well. He swallowed it easily. He has had much practice from swallowing vitamins and medications on a daily basis. Although Tim did not go to school the day of the pill cam study, he was not in pain or uncomfortable. The setup is pretty bulky and he did not want to alarm his classmates.

The pill cam revealed he has ulcers in his ileum. He was prescribed a steroid that targets the ileum. However, this treatment did not work.

Therefore, he is scheduled to receive an endoscopy next week, which doctors believe will help get to the bottom of what is causing his blood loss.

I hope so. We are really frustrated and tired at this point.

Although Timothy is feeling better overall, he is experiencing intestinal bleeding, which causes severe anemia. Aside from blood transfusions every two weeks, he is also receiving Remicade every six weeks. To no avail. He is still not gaining weight or thriving.

Low-Residue Diet for Crohn's

2012-12-13T16:06:00.001-06:00

We are looking at different options to supplement Timothy's diet. Although he is growing in height, he has not gained much weight in the last year. In fact, he weighed 68 pounds when he was diagnosed with Crohn's last year. He now weighs 62 pounds on a good day.

I purchased some V8 Fusion and other high calorie juices today with the hope that he will actually like them. He does not care for Ensure or Boost. I am also looking into putting him on a a low-residue diet, which involves eating more easily digestible foods. A low-residue diet may reduce symptoms of Crohns; however, it will not cure it.

A low-residue diet is a diet in which fiber and other foods that are harder to digest are restricted. High-fiber foods include whole-grain breads and cereals, nuts, seeds, and raw or dried fruits. In other words, Crohn's patients must steer clear of many of the foods that are considered healthy.

Residue refers to undigested foods, including fiber, that make up stool. If intestinal walls are inflamed or damaged, digestion and absorption of nutrients and water may be impaired, depending on the location of disease activity.

In some people with Crohn?s disease, the small intestine may also become very narrowed. The idea behind a low-residue diet is to reduce the number and size of bowel movements you have each day, thereby lessening painful IBD symptoms such as cramping, diarrhea, and gas. However, it does not affect inflammation or the disease itself.

A low-residue/low-fiber diet may be recommended for short-term use during disease flare-ups or following surgery to help with recovery.

Grains include crackers, pasta, cooked cereals, and white breads without seeds.
The skin and seeds of many fruits and vegetables are loaded with fiber, so peeling skin and avoiding seeds is part of a low-residue diet. The following vegetables can be eaten on a low-residue diet: carrots, mushrooms, green beans and mushrooms. Fruits include: bananas, cantaloup, canned or cooked fruits without seeds such as applesauce or canned pears.

Timmy Update

2012-04-16T16:59:00.001-05:00

Timmy's health continues to improve. We feel very blessed that his medication is working well. Recently, he received his fifth Remicade treatment and an iron infusion, which have both improved his health tremendously. In fact, his recovery is miraculous. His stomach symptoms have decreased significantly and he is no longer tired and grumpy. :-)

In addition, we were very pleased to learn that he has grown two inches since his last treatment eight weeks ago! Doctors predict his health will continue to improve as he continues this new course of treatment. I am very optimistic about his health going forth.

Beginner's Luck at Today's Cub Scout Derby Race

2012-03-03T22:35:00.000-06:00

Timmy and Bill received their first taste of a Cub Scout Derby race today and enjoyed some beginner's luck. Thanks to help from their Cub Master, Bob White, and Augie, aka "Pops," their cars were expertly designed. Bob helped them shape the cars with a table saw in his professional wood shop, while Augie polished their axles and spray painted them a shiny black.

The boys did their part by making them look cool with stickers and exhaust pipes that I purchased for them on E-bay. Their projects took about four days to complete.

Both boys were nervous and excited the day of the big race. Upon our arrival, we discovered that Bill's car was too heavy and Timmy's was too light. A Cub Scout parent volunteered to drill 23 holes in it to make it lighter. This strategy was not enough, and he had to also remove one weight.

To remedy Timmy's weight problem, another helpful parent added two washers to his car. After each participant made similar adjustments, the boys were ready to race.

The competition was very stiff, and we were worried that their cars would not measure up. However, in the end, Bill placed first overall. While Timmy placed third overall and for "best design."

In Bill's acceptance speech, he acknowledged everyone for the role they played in his success. He was very thankful and happy about winning. The boys look forward to participating in derby races in the future, and they hope that today's wins were not a fluke.

The Power of Touch: Treatment for Rheumatoid Arthritis

2012-03-01T19:41:00.001-06:00

Occasionally, Timmy's rheumatoid arthritis flares up, especially when it is cold or he participates in strenuous activities. When this happens, he is often in so much pain, that he has a hard time walking. Unfortunately, pain relievers do not usually work. But one thing that I have discovered that does work is massage therapy. I usually slather on some Icy Hot, then massage his achy muscles and joints for five to ten minutes. Following each treatment, he is usually pain free for several hours.

Through my research on how to make Timmy feel better, I have learned that human touch plays a vital role in our health and overall well-being. In fact, the caress of another person releases hormones that can ease pain, clear the mind and provide relief for other ailments.

Numerous studies have shown that with an ample amount of massage that is composed of various strokes can eliminate a person's stress level dramatically. In fact, after a massage, the amount of stresses secreted in the body through various hormones decreases.

Without a doubt, the human touch is powerful.

Top Ten Hints that Timmy is Better

2012-02-26T17:28:00.001-06:00

10. He is flashing his dimples again.
9. He is beginning to talk a lot like he used to.
8. He plays outdoors with his friends.
7. He is more outgoing.
6. He is nicer to his brother.
5. He has his sense of humor back.
4. He is less grumpy
3. He can play basketball the whole game without getting overly tired.
2. He is optimistic about his future.
1. He is messing up our family photos like he used to.

Iron Infusion for Crohn's Disease

2012-02-20T12:33:00.001-06:00

Tim's iron infusion to boost his hemoglobin level was a success. He received it on Thursday and reported feeling much better almost immediately. Further proof was provided by his performance at his basketball game on Saturday.

While we thought it might take several treatments for his health to improve, his endurance appears to have improved right away. While he is usually tired throughout his basketball games, following the infusion he played the whole game without taking frequent breaks.

We are amazed and very thankful that this treatment worked. He has five more iron infusions left, which are spaced out over several months. We pray that Tim's health continues to improve.

Timmy's Latest Remicade Treatment

2012-02-18T12:35:00.000-06:00

I wish I could say Timmy's latest Remicade infusion happened without a hitch. But I can't. Complications began when his vein gave out, and the nurses had to start another IV. Unfortunately, by the time they finished his treatment, it was too late for him to get his iron infusion. They wrapped up his IV, and we went home.

Day two was better. Timmy got his iron infusion first thing in the morning, and it went well. He didn't have an allergic reaction or any other complications. He required a stronger iron supplement than pills at this point because his hemoglobin marker is at a level 6, when it should be around 13.

He will receive a total of six treatments, which should boost him to a healthy level for an 8-year-old boy. We will see if it helps with his fatigue and shortness of breath.

We continue our journey and hope for the best. Even with the complications, it is worth it because Tim is doing much better. If I were in Timmy's shoes, I would want Remicade infusions. They appear to be working very well.

Choosing a Healthy Diet for Crohn's Patients

2012-02-15T13:55:00.001-06:00

My picky 6-year-old

Some of our favorite foods that are off limits.

One of the hardest things about living with Crohn's disease is eating a balanced diet. We constantly test snack and meal options with my son to find a combination that agrees with his taste buds and stomach. The task is even more difficult because I also have a 6-year-old who is also a fussy eater.

Infusing fruits and vegetables in our diets is my biggest concern. Growing up, my mother always preached the importance of eating rainbow-like variety of high-fiber foods such as fruits and vegetables, but I have found that those foods actually aggravate my son's condition.

In fact, when symptoms of Crohn’s disease flare up, many dietitians encourage patients to eat a bland, low-fiber, white-flour diet for relief. Potato products, bread and bananas were least likely to cause problems for people suffering symptoms of Crohn’s disease, according to a 2006 study from Utrecht University and University Medical Center, Netherlands.

During my son's latest flare, smoothies, meal-replacement drinks and soup worked best. He was able to consume them with less discomfort than he experienced with solid foods. We later introduced solid foods slowly. Unfortunately, he lost several pounds in about six days. Not good for someone who is already underweight.

Triggers can vary and Crohn’s patients are advised to keep a food diary to track what they are eating and how they respond to it. Food diaries should include quantity, time and symptoms experienced.

For tips on some other ways to avoid and soothe symptoms of the disease, read 11 tips from top experts.

Crohn's diet tips
http://www.ehow.com/way_5297066_crohns-disease-diet.html

How to avoid flares
http://www.ehow.com/how_2088564_diet-avoid-crohns-disease-flareups.html

2012-02-13T12:16:00.001-06:00

I haven't given a "Timmy update" lately because I've been very busy with school and Timmy & William's activities - i.e. Cub Scouts and basketball. Timmy has made some progress since he began his Remicade treatments several months ago. In fact, he was doing very well until two weeks ago, then he had a flare. We are not sure what caused it, but it could have been a virus or the increase iron, as prescribed by his hematologist. We lowered his dose of iron and it took about five days for the flare to subside. In the meantime, he missed four days of school :-(.

He gets another Remicade dose and his first iron treatment on Wednesday, which we hope will boost his energy and oxygen levels. Although it has been the best treatment for Timmy so far, I am concerned about the side effects of Remicade, and I am looking at other alternatives. The scariest side effect is the possibility of lymphoma. Previous studies have shown that patients using the medication are slightly more likely to get it. However, right now it is keeping him alive. If he takes no medication, he does not have an appetite, has frequent bowel movements and is in constant pain.

On the bright side, Timmy is doing well with the treatment. His personality is similar to his pre-Crohn's days. His sense of humor has returned, and he is doing very well in school. I will continue my research, and hope and pray that he continues to get better. Maybe a new, effective treatment will present itself one day.

Timmy Update

2012-01-07T17:02:00.001-06:00

Timmy received his second Remicade treatment last week.

The treatment takes about three hours to complete. He stayed occupied by reading books, watching a video and listening to music on his MP3 player.

I am happy to report that he is doing much better, His hemoglobin, albunum and inflammatory markers are better. He will receive another treatment in four weeks, then every eight weeks. He no longer has to take medication in between treatments, which is great!

However, he is taking a prenatal vitamin to help boost the Iron, riboflavin and other vitamin levels in his body. His energy-level is improving.

The side effects of the treatment are daunting. However, I believe Timmy's quality of life without it and the prolonged use of Prednisone are much worse.

We will continue this course of treatment as long as it works. Thanks to everyone who is praying for him. Your kind words and thoughts are appreciated.

A Timmy Update

2011-12-22T11:28:00.000-06:00

It took a few days, but I am finally seeing a difference in Timmy's overall energy level. He missed school Tuesday, attended half a day yesterday and half a day today. He was excited this morning about his school's Christmas party and giving his teachers their Christmas gifts!

The best news is he is no longer taking prednisone. Yay! His doctor weened him off the prescription as soon as possible to prevent the onset of a calcium deficiency and mood swings, among other side effects.

In the midst of this stressful holiday season, I am trying to remember to be prayerful, patient, humble and thankful for whatever comes my way. Timmy is much better and my entire family is blessed!

Timmy's blood transfusion and Remicade experience

2011-12-20T09:00:00.001-06:00

Timmy's remicade treatment and blood transfusion went very well. Both should make him stronger. He has been very tired for the last few weeks because of his anemia. He will receive another treatment in two weeks, then four weeks, then every eight weeks.

In between his treatments, he will not have to take medication. Thank God for this.

Remicade has the potential to turn his life around and heal his gut, which means fewer trips to the bathroom.

We need a miracle this Christmas. I am praying that yesterday's treatment enables Timmy to begin a new, healthier, more carefree life. I give God all of the glory.

Please pray for strength for our family and endurance for Timmy. Crohns has changed our lives, but particularly his. He has been so brave and strong.

Timmy's Doctor pushes for remicade and blood transfusion

2011-12-18T09:22:00.000-06:00

Timmy's doctor is pushing to give him a blood transfusion and remicade infusion. His hemoglobin is low, he is very anemic and his inflammation markers are up.

He has been been dealing with crohns colitis for almost a year. The biggest problem right now is we can't ween him off prednisone and Methotrexate, which have both left him tired and vitamin depleted.

I am a little worried because I have heard horror stories about blood transfusions. However, he is so tired and moody, he might benefit from an additional boost. I will continue my research and turn to God for strength and guidance. We are all tired.

Crohn's disease has taken a toll on the whole family.

Painted Bobcat Ceremony

2011-12-14T22:10:00.000-06:00

Timothy and William received their Bobcat patches during a Painted Bobcat Ceremony. Augie and I participated by painting their faces with colors symbolizing Cub Scout principles.

The ceremony is as follows:

BLUE is from the sky. The paw print of the Bobcat is the spirit of the bobcat. This reminds you to do your best on the Cub Scout Trail.

YELLOW is from the sun. The marks under your eyes will help you see the light of the Cub Scout trail and they symbolize the bright spirit of Cub Scouting.

WHITE is for purity. The mark on your nose helps you know right from wrong as you go along the Cub Scout trail.

RED is for courage. The mark on your chin reminds you to always speak the truth.

GREEN stands for the spirit of nature. The marks on each cheek will guide you to live in harmony with the great outdoors.

Then Timothy and Bill painted our noses with a white stripe.

We were told:

WHITE is for Love and guidance, your parents are always with you in your heart and in your spirit. They will always do the right thing and will help you achieve all your Scout goals and keep you on the track of life until you are a man and can soar with the Eagles.

The ceremony was short and sweet.

Cub Scout Christmas Celebration

2011-12-14T21:44:00.000-06:00

Timothy and William celebrated Christmas Cub Scout style recently during their troop's annual Christmas party. Their troop leaders gave them a stocking full of gifts, including a derby car, pencils and erasers. We also enjoyed pizza, cake and a tossed salad.

Most importantly, the boys received their Bobcat patches, the first of many!

So far, Timothy and William are really enjoying Cub Scouts. I was surprised by the content discussed at each meeting. They are learning practical skills such as how to tie a knot as well as the importance of patriotism, cleanliness, Godliness and friendship.

The boys are a part of a small troop, which is good because it offers the feel of a close-knit family. Everyone is friendly and eager to become friends.

In January, we will embark on our first camping/fishing trip. Augie, Timothy and Bill love to fish so it should be awesome. I am a little nervous about this endeavor. I've never slept outside before. Stay tuned... It shoud be interesting. :-)

Fave family photo

2011-11-28T05:51:00.000-06:00

This is one of my all-time favorite family photos. It depicts the happiness Augie has brought to our family. I took it during a visit to the Woodland Spring's Nursing Home.

The kiddos were leary about visiting the facility, but they made a connection with a younger patient who was there after sustaining a brain injury during a motorcycle crash. They now know nursing homes are not only for elderly people.

This was take-one. The second photo certainly turned out better.

The Smurfs Movie - A Teachable Moment

2011-11-28T05:45:00.000-06:00

Augie and I took the boys to see The Smurf's movie Saturday. We all loved the movie. Timmy and Bill were introduced to one of my childhood favorites that I enjoyed watching with my younger sister. At first I did not want to see the movie, but watching the trailer convinced me it would be worth the time. I'm glad I saw it. I was able to use it as a teachable moment.

Here is the storyline: When the evil wizard Gargamel chases the tiny blue Smurfs out of their village, they tumble from their magical world and into ours. While in New York City, the Smurfs must find a way to get back to their village before the evil Gargamel tracks them down. The movie chronicles their adventures during their short stay in the Big Apple.

After the movie, I talked to the boys about the different personality traits people have and how it takes all types to make the world flow smoothly. Although some personalties are more desirable than others, they are not less important.

It was easy for them to see the value of Papa Smurf and Brainy Smurf, but harder for them to grasp what Grumpy Smurf and Narrator Smurf contribute to society. Both boys wanted to know what they add to life. I explained that like people we encounter in life, they all served a purpose in the movie. For example, although Clumsy Smurf was always getting into trouble, he spread cheer with his lovely flowers and in the end, he helped the group make it home. Narrator Smurf kind of served as a reporter or historian--he recorded what was going on in their lives in real-time. His importance was illustrated by the fact he was one of the last Smurfs to make his exit. Grumpy Smurf was the hardest character to explain, but I told him that grumpy people often serve to keep everyone on their toes. Without grumpy counterparts, many people would be less inclined to do what they are supposed to do on a daily basis.

After I explained this to them, they were satisfied and a little wiser about how things work in life and that is "smuft-tastic."

Timmy Learning to Live with Crohn's

2011-11-14T08:36:00.000-06:00

Timmy chose to be a ghoulish skelaton because that fit his personality

Timmy and I had a long talk last week. Afterwards, we both agreed it is time for him to get on with his life.

I was ready to give up and let him continue to be grumpy and depressed (blaming Crohn’s disease for stealing my child) until one of my colleagues helped me realize that the "real Timmy" was still there -- I just needed to help bring him back. She told me that her son was diagnosed with juvenile diabetes at age 12, and his personality changed briefly. Eventually, he learned how to cope with his illness, and he became himself again. Today, he leads a "normal" life.

With this in mind, I sat Timmy down and we had a log heart-to-heart talk that involved some crying and fussing, but it was worth the effort. We talked about the importance of him not feeling sorry for himself and bringing the old Timmy back. He agreed that the old Timmy was still there and he would work on being more cheerful.

Once Timmy started working on being happy, it became easier. Yesterday, he announced he is ready to play basketball again. Yay! I am excited about his future and his testimony that is developing!

I am glad we sent the sad Timmy away.We will truly let go and let God have His way!

Gray hair and Crohns

2011-11-14T08:28:00.000-06:00

We kind of suspected Timmy was getting a few gray hairs, but because his hair is thick and curly, we were not sure how much until this weekend when he got it cut really low! Wow! It is about two-thirds gray. And it's really pretty and silky.

Even Timmy likes it for now. He was especially proud when his grandpa told him he was prematurely gray just like him. That gave him someone with whom he could identify.

We are not quite sure why it happened -- based on my research-- it could be from a vitamin B-12 deficiency or a side effect of Methotrexate.

Whatever the reason, we are taking it in stride. If Timmy becomes concerned in the future, I told him I will dye his when I dye my hair each month. He was okay with that. In the meantime, welcome to the gray hair club Timmy!

Bill and Timmy's first place pumpkin

2011-11-07T20:53:00.000-06:00

Timmy and Bill won first place in Spring Valley's sibling's category for their pumpkin, Fly Guy. Bill came up with the idea and Augie and I helped him execute it. We used green floral styrofoam balls painted white to create his huge, bulging eyes. Foil covered cardboard served as his wings. As a finishing touch, Augie painted the pumpkin tan and attached a foam nose.

Fly Guy turned out pretty cute. Timmy and Bill were happy when people actually recognized him.

The Fly Guy series contains some of his favorite books. It details a friendship that transpired after a boy and fly meet and form a beautiful friendship. Using puns, slapstick, and silly drawings, bestselling author/illustrator Tedd Arnold creates an easy reader that is full of fun.

The Ramirez Family's Halloween 2011

2011-11-02T01:53:00.000-05:00

We had a great time this Halloween!

Augie, the kids and I went Trick or Treating in the neighborhood, then passed out candy at home. Timmy dressed as a gangster skeleton, while William was a ninja. Augie and I stuck with our 70s theme.

The biggest surprise I experienced was seeing one of my former students Trick-or-Treating in our neighborhood. She was visiting her sister who is one of our neighbors. It is a small world, indeed!

We were all amazed by the number of Trick-or-Treaters who stopped by our house. Traffic was very heavy on our street. We passed out five bags of our own candy, then gave away some of the candy William and Timothy collected. Finally, I told the boys to shut it down. We could spare no more candy. :-) That was when Halloween 2011 ended for the Ramirez family. Great times with family and friends.

Kari Schmidt, one of my former students, was our surprise trick-or-treater!

Handing Timmy's disease over to God

2011-10-25T10:52:00.000-05:00

After having a short pity party today, I became more determined than ever to hand Timmy's disease over to God.

I was saddened about his anxiety over speaking in a PTA musical today. Prior to having Crohn's, he was very confident and eager to speak publicly, now he's very hesitant to do anything because of his stomach issues. This realization hammered home how much the illness has changed his personality and life.

I felt helpless. My previous beefs have been with society and humankind. I often write about injustices such as racism and sexism -- and in the process, I usually feel better. This time is different. I am powerless...

Who is to blame? Why Timmy? Why now?

Gone is the happy-go-lucky boy who entered my life eight years ago. In his place is a sullen, cynical stranger who ponders what "really makes him happy." Before, “happiness” was playing outside with his friends, eating chili and cookies. Now, most of the time, he is too tired to play outside, and grease and sugar make him gravely ill.

Of course, I talk a good talk and tell him to focus on the positive. We are blessed that he is alive. Nevertheless, we all know that his quality of life is not very good right now. In addition, we are afraid of the unknown.

I grieved for the old Timmy this morning. After I finished, I called on God for strength. In doing so, I came to the realization that both Timmy and I have to be more determined than ever not to hand his life over to Crohn's disease, but to keep him in God's hands.

After asking for forgiveness for my lack of faith, I felt better. Temporarily...

Deep breaths Timmy...controlling Crohn's-related vomiting with breathing exercises

2011-10-21T06:57:00.000-05:00

Timmy has recently learned that he can cut down on vomiting by taking deep breaths. My mother taught me some deep breathing exercises when I was growing up to help with anxiety. The same exercises have helped Timmy cut down on Crohn's-related vomiting significantly. The key is to take deep breaths from the diaphragm, hold and then release. It really works! He has gone from throwing up at least twice a day to not at all. His meds are the same.

Slippery Elm and Crohn's

2011-10-03T12:33:00.000-05:00

Timmy's weekend went well. He only vomited once the whole weekend, which is good for him.

In addition to his regular medication, we are trying Slippery Elm in a liquid form. It is black and tasteless. I usually mix it with water and he drinks it without protesting. Before I decided to give it a try, I did some research on the Web. Here are some interesting facts and Web sites that I found helpful.

According to the Web site, http://ibdcrohns.about.com/od/cdbeyondbasics/a/vitaminsuppcrohns.htm., slippery elm (Ulmus fulva) has long been used as a remedy to treat gastrointestinal distress. Slippery elm supplements are actually made from the inner part of the bark of an elm tree, and comes in a variety of forms such as tablets, capsules, powder, tea, or lozenges.

However, the site, states it has not been studied extensively for use in Crohn's disease, but the authors of one study did find that slippery elm has enough antioxidant effects that it warrants further studies.

Another Website, http://botanical.com/botanical/mgmh/e/elmsli09.html, offers this description of Slippery Elm Medicinal Action and Uses: Demulcent, emollient, expectorant, diuretic, nutritive. The bark of this American Elm, though not in this country as in the United States an official drug, is considered one of the most valuable remedies in herbal practice, the abundant mucilage it contains having wonderfully strengthening and healing qualities.

It not only has a most soothing and healing action on all the parts it comes in contact with, but in addition possesses as much nutrition as is contained in oatmeal, and when made into gruel forms a wholesome and sustaining food for infants and invalids. It forms the basis of many patent foods.

Slippery Elm Food is generally made by mixing a teaspoonful of the powder into a thin and perfectly smooth paste with cold water and then pouring on a pint of boiling water, steadily stirring meanwhile. It can, if desired, be flavoured with cinnamon, nutmeg or lemon rind.

His regular medication includes half an immodium, a fourth of Prednisone. So far, it appears to be helping.

This makes an excellent drink in cases of irritation of the mucous membrane of the stomach and intestines, and taken at night will induce sleep.