Crohn’s 101

When I first started this project I had a clear and precise way I wanted to approach it.  I was going to start with the online encyclopedia at school to get some general information.  From there I was going to begin looking at the information available online.  I wanted to ask an online expert but that did not work very well.  Then with the appointments with my husband’s specialist he helped me find out some books that he recommends.  So I got advice from an expert directly. 

I have to admit I was not looking forward to making a graphic organizer.  I thought it would just be another step to get done, and I had never used one before during a research project.  But now that I used one I definitely think I would use it again.  I think I used it at a great point within the research a well.  I used it to help organize all of the information I had at the weaving stage of this search.  When it came time to develop my project, wrapping, I used this organizer to determine what information was put onto the slides.  I did add a couple of slides, so I did jump back to the weaving portion momentarily to complete the project.  This is one way I can say that I will incorporate into further research. 

Another way it has changed is simply the realization that it is okay to bounce around in the process of obtaining information.  It is okay to be at the weaving stage and go back to wondering when new information is presented.  Research is not linear.  It is also, okay to alter the initial questions asked in wondering.  As the amount of information is found the knowledge on the topic will change and your initial questions may change with that (broaden).    

Wow, I think I have it all done.  I cannot believe it.  I know the ending project was only worth a few points of the entire project 1, but I just felt as if I needed to do it right.  I could not only do it half way.  So it is about 21 slides long, fyi.

A few challenges I ran into while doing this project was initially figuring out how to find the information I needed.  Crohn’s disease, did not show up a lot of times when I used search engines.  I had to use the broader term of inflammatory bowel disease and then narrow it down from there.  Eventually I did find some sites that dealt exclusively with Crohn’s disease. Another one was when I tried to use an online ask an expert it was a bad experience.  I signed in and the operator at the site asked me a bunch of questions and then said, “How can I help you.”  Well I typed in my first question the operator immediately typed back one moment.  All I can say is one moment doesn’t end up being 30 minutes and the operator ending the chat session.  I did not even want to try again.  I was completely frustrated with that situation.  So instead I used sources that were closer to home.  My husband’s specialist gave me some great books to look into.

One of the strengths of this project is my background in science.  I actually was a Biology major as an undergrad and used my elective courses to obtain my education certification.  So when some of the sites and books got into more technical word usage, I could still understand the majority of it.  And with my experience as a teacher, I think, I was able to present the information in way that people could understand.  (I am keeping my fingers crossed on that one)  Another strength was that since he was just diagnosed his specialist was very eager to help us.  And when I told him I was going to do a project on it that is when he started to give me books to check into to help understand the disease.

A weakness I think I found is that there are not a lot of pictures to aid in the understanding of the material.  I mean there are a few, but I thought I would find a lot more on the internet.  Some of the material would have been easier to understand if a picture example would have been available, especially to the visual learners.

I think the only thing I would have done differently with a similar investigation is perhaps try a different ask an online expert.  I did get frustrated pretty quickly with that experience. 

My personal experience is very similar to those that students would do in my classroom or media center.  The first is they want to do the best they can.  And that is what I wanted to accomplish here as well.  Secondly, the students will probably go through many of the emotions that Kuhlthau expresses in her observation of children while doing research.  They will go through the frustrations, the feeling of being overwhelmed, not knowing where to start or go from a point, and the relief when they get the final project done. 

Unlike the students though, my personal experience may be different in that some may not have the personal connection to the topic as I did.  Even if they pick the topic they may see it as just another grade not a way to become a lifelong learner.  Another way this may not be similar to what the students experience is that with this project I had complete control over what topic I wanted to choose.  Most students may experience an inquiry project but it will not be completely free, it will be either guided or controlled.  However if they were allowed as Callison points out that by working together, “Students, as information scientists, and teachers as instructional media specialists, engage in processes that can excite them to learn more.”

With my topic of Crohn’s disease I was really worried about finding a connection to multiple grade levels.  The good thing about this topic is that most students have been or are affected by diseases that family members, friends, or neighbors have or have had.  And because of this, my topic could be tied into the school curriculum. 

 For the seventh grade science student, I could give the students the opportunity to pick any disease they want to learn about.  Have them go through the process much like I did and then pick an end product of how to present the information to the class.  We may even be able to podcast the best ones (or maybe even all of them because then they can show their parents what they have done).

Standards covered:

Science

7.4.12 Explain that viruses, bacteria, fungi, and parasites may infect the human body    and interfere with normal body functions.  Recognize that a person can catch a   cold many times because there are many varieties of cold viruses that cause          similar symptoms.

7.4.13 Explain that white blood cells engulf invaders or produce antibodies that attack invaders or mark the invaders for killing by other white blood cells.  Know that         the antibodies produced will remain and can fight off subsequent invaders of the     same kind.

7.4.14 Explain that the environment may contain dangerous levels of substances that   are harmful to human beings.  Understand, therefore, that the good health of       individuals requires monitoring the soil, air, and water as well as taking steps to    keep them safe.

7.6.1 Understand and explain that throughout history, people have created        explanations for disease.

English/Language Arts

7.5.3 Write research reports that:

• Pose relevant and focused questions about the topic.
• Communicate clear and accurate perspectives on the subject.
• Include evidence and supporting details compiled through the formal research process.
• Document sources with reference notes and a bibliography.

For fifth grader science students, I would give them the chance to research a disease that has been cured or helped by medicine that has been discovered by a scientist.  The students describe the disease but then focus on what the scientist has done for humans in curing the disease.  The students again could choose an end product and how to present it to the class.

Standards covered:

Science

5.1.3 Explain that doing science involves many different kinds of work and engages      men, women, and children of all ages and backgrounds.

5.1.4 Give examples of technology, such as telescopes, microscopes, and cameras, that          enable scientist and others to observe things that are too smll or too far away to          be seen without them and to study the motion of objects that are moving very      rapidly or are hardly moving.

5.1.5 Explain that technology extends the ability of people to make positive and/or      negative changes in the world. 

English/Language Arts

5.5.3 Write research reports about important ideas, issues, or events by using the        following guidelines:

• Frame questions that direct the investigation.
• Establish a main idea or topic.
• Develop the topic with simple facts, details, examples, and explanations.
• Use a variety of information sources, including firsthand interviews, reference materials, and electronic resources, to locate information for the report.

Social Studies

5.5.6 Read accounts of how scientific and technological innovations have affected the   way people lived in the early United States and make predictions about how   future scientific and technological developments may change cultural life.

When I was typing up my last entry, of wrapping, I think I crossed into waving at the same time.  Not all of it mind you, but some of it.  I will share this with classmates and especially my family.  My children and I will no doubtedly use this information everyday of our lives from now on.  Since this disease is chronic, it will never go away.   I would also communicate my ideas and project to others that are recently diagnosed with Crohn’s disease.   

As I mentioned in the sixth W, wrapping, 149 people in 100,000 have IBD.  That means it affects many different families and people in the world.  If this information can be used by any of these people, friends, and/or family then I accomplished what I set out to do.  It is here to strictly inform and perhaps give them a starting point to do their own inquiry to learn more specifics about this disease.  So maybe a good combination of this information is this blog and the slide show I made to present the information.  If the problems I had in finding the information aids them at all or prevents them from feeling frustration then I hope they read the blog.  Then they will know not to type in Crohn’s disease by itself, but to use colitis or inflammatory bowel disease. 

Below is the link to a power point presentation I made with the information I found about Crohn’s disease.  Feel free to access it anytime you want and give it to any friends or family that you feel would benefit from the information.  Feel free to ask me questions if you need further explanation.   

https://oncourse.iu.edu/access/content/user/tuchtman/Crohn_s%20Disease.ppt

I believe there are several ways I can present the information I found on Crohn’s disease.  I think I could make a research paper but that would end up pretty boring.  I could make a video but then I think it may come across as something that listeners would find a great way to fall asleep.  This is mostly because of the medical terms, drug names, and general sensitive nature of the disease.  A journal would work, but I think that is kind of what I am doing with the 8W’s.  Although I am not including all of my information I have found.  A newspaper article would be good too.  Design it as a story that would print in a medical journal.  A slide show would be good too.  I could list the most important information on short statements and include a picture or two.  And a webpage would work as well.  Then anyone looking for the information could find it.  

I think though I am going to make a slide show.  I am confident in making them and I can have some fun with the animation of the slides.  I believe with my background in science I can make sense of this information and when presenting this to others I hope I can explain it in ways that others can understand. 

This information is extremely important to me.  My husband was diagnosed with Crohn’s disease only weeks ago.  I feel it is my responsibility to help him in every way I can.  This includes finding out what causes the disease, complications that could happen down the road (hopefully not), and how I can ease the symptoms with his diet.  After researching this topic I found that 149 people in 100,000 have IBD.  That means it affects many different families and people in the world.  If this information can be used by any of these people, friends, and/or family then I accomplished what I set out to do.

Kuhlthau states at her website on the Information Search Process, that in her last step, “the sixth stage, feelings of relief are common with a sense of satisfaction if the search has gone well or disappointment if it has not.  The task is to complete the search and to prepare to present or otherwise use the findings.”  And I have to admit, I am feeling this right now.  I am completely happy and relieved.  I know that I have the information, it is organized in my graphic oraganizer (http://www.gliffy.com/publish/1599536/), and now I only have to make the slide show to present it to everyone. 

This personal inquiry has helped me find a lot of information about Crohn’s Disease.  I am glad I ended up choosing this topic over the other ones I considered.  When I started to think about the information I had gathered I was thankful that I have a science background.  Some of the information given was technical and I could go a lot deeper into the current research and still understand it.  But I wanted to focus more on the basics for this project.  I wanted my questions answered first. 

To analyze the information I don’t know if I want to make lists or a flow chart.  I think either one would work.  Normally, I am a list maker.  I have to do this so I can remember everything I need to get done.  But this time I think I am going to try a graphic organizer from http://www.gliffy.com/.  I can honestly say that I don’t remember ever using one of these to organize my thoughts.  Just wait a little bit and I will get this done.

Okay, I am all done.  That was great.  I really liked how it took all the information running in my head and put it into an organized manner. This is a fantastic way to get everything ready to make a final product.  It is not set in stone, but it really gives a jumping point for me.  I can see using this again.  Feel free to look at it yourself at  http://www.gliffy.com/publish/1599536/.  Kuhlthau states at her website on the Information Search Process, “As knowledge states shift to more clearly focused thoughts, a parallel shift occurs in feelings of increased confidence.”  I can completely relate to this now.  I was feeling a bit uncertain if I had the information I wanted or needed.  As Kuhlthau says more information doesn’t always mean that the feeling of uncertainty will go away, in fact it probably will increase it.  With the use of the graphic organizer I think I can make an easier shift to the wrapping phase.

One of the first hurdles I had to figure out is the difference between Crohn’s, ulcerative colitis, and inflammatory bowel disease (IBD).  IBD is a group of inflammatory conditions of the gastrointestinal tract, usually the small and large intestines.  The two main categories under IBD are Crohn’s and ulcerative colitis.  Both cause inflammation of the parts of the digestive tracts and are marked by an abnormal response by the body’s immune system.  Ulcerative colitis is when the colon is inflamed and the small intestine continues to function normally.  It is contained within the colon mucosa which is the inner most lining of the colon.  Crohn’s disease is the inflammation of the intestines and can affect all the layers within.  Find this out was enlightening.  Then it became easier to differentiate between the information I found.  Below are some other definitions I came up with.

antibody – a protein normally present in the body or produced in response to an antigen which it neutralizes, thus producing an immune response.

anti-inflammatory – a medication used to prevent or reduce inflammation.

colectomy -surgical procedure to remove part or all of the colon.

colon mucosa – the inner most lining of the colon.

colonoscopy - a diagnostic procedure in which a long narrow flexible tube is inserted into the rectum and then advanced to the cecum. 

duodenum – the beginning portion of the small intestine, starting at the lower end of the stomach and extending to the jejunum.

fistula – an abnormal connection between two organs, such as between bowel and bowel, bowel and vagina, bowel and bladder, bowel and urethra, or bowel and skin.

ileum – the third and lowest section of the small intestines.

sigmoid colon – lower third of the colon or large intestine.

terminal ileum – the most distal part of the small intestine.

remission -  state in which a patient’s disease is inactive.  Unfortunately this is usually not a permanent state.

Many of you may have heard of irritable bowel syndrome (IBS).  From the information I have read it is not the same as IBD, Crohn’s, or colitis.  IBS can cause many of the same symptoms such as diarrhea and abdominal cramps but it is not caused by inflammation like the IBD’s.  (The inflammation eventually causes ulcerations and bowel injury)  Most of the issues involved with it relates to the colon or large intestine, that is particularly sensitive and reactive to certain foods and stress.

When I made this organizer I tried to bring together the information that made sense.  Under nutrition I read a lot of information about what people with Crohn’s should and should not eat.  And believe me, there is a lot!!  And now I know how this is going to affect my husband, Dave.  Because of how food is digested in the human body many patients become malnourished.  When food is digested the nutrients are absorbed in the small intestine, because of the inflammation that occurs with Crohn’s disease this does not happen properly.  So many patients need to take supplements (especially vitamin B-12, and D) to help offset this.  Many of the sites said that the patient needs to pay attention to their diet.  If something is eaten that causes an increase in their symptoms this food should probably be avoided in the future.  These foods are labeled as “food intolerances.”  Instead of the normal 64 ounces of water a day that most people need those with Crohn’s need a minimum of 70 due to the poor absorption of water in the large intestine.  Generally, there are few items that need to be limited: greasy or fried foods, pork products, milk or milk products, caffeine, alcohol, and high-fiber foods like nuts, seeds, corn, popcorn, and various Chinese vegetables. 

These are a few examples of the information I have gained from my personal inquiry.  I am already applying this to our daily lives and living with this disease.  My husband jokes that he is not going to be too happy about some of the foods that is getting cut out of his diet (the caffeine).  That is when I ask him if he would rather spend his day in the bathroom?  But I tell him he is not going to get a television in there so don’t even ask. 

Books:

Banks, P. A., Present, D. H., & Steiner-Grossman, P. (1983). The Crohn’s disease and ulcerative colitis fact book. New York: Scribner.

Sklar, J. (2007). Crohn’s disease and ulcerative colitis: An essential guide for the newly diagnosed. First year series. New York: Marlowe and Co.

Warner, A. S., & Barto, A. (2007). 100 questions & answers about Crohn’s disease and ulcerative colitis: A Lahey Clinic guide. Sudbury, Mass: Jones and Bartlett.

Movies:

Films for the Humanities (Firm). (2000). Inflammatory bowel disease Coping with Crohn’s and colitis. Princeton, N.J.: Films for the Humanities & Sciences.

Golder, J., DiGregorio, R., Yip, M., & Verdi-Rose, C. (2008). True guts Struggle & triumph over Crohn’s disease and ulcerative colitis. Sherborn, Mass: Aquarius Health Care Media.

Lerner, E., Lerner, A. C., Douglas, P., & Miles, V. (1998). Coping with Crohn’s & Colitis. Cutting edge medical report, 1125. Boca Raton, Fla: Information Television Network.

E Books:

European Crohn’s and Colitis Organisation. (2007). Journal of Crohn’s and Colitis. Supplements. New York, N. Y.: Elsevier Science. http://www.sciencedirect.com/science/journal/18739954.

Zonderman, J., & Vender, R. (2000). Understanding Crohn disease and ulcerative colitis. Understanding health and sickness series. Jackson, Miss: University Press of Mississippi.

Websites:

Crohn’s & Colitis Foundation of America at http://www.ccfa.org/

National Digestive Diseases Information Clearinghouse at http://digestive.niddk.nih.gov/

Living With Crohn’s Disease at https://www.livingwithcrohnsdisease.com/livingwithcrohnsdisease/crohns_disease/inside_crohns.html

HealingWell.com  at http://www.healingwell.com/ibd/

          Article: Care and Feeding on a Crohn’s Diet  http://www.healingwell.com/library/ibd/gray1.asp

Crohn’s Health Center at http://www.healthcentral.com/chronic-pain/crohns/?ap=1003

Teens with Crohn’s Disease at http://pages.prodigy.net/mattgreen/

Crohns-Disease-info.com at http://www.crohns-disease-info.com/

I Hate IBD (Inflammatory Bowel Disease) at http://www.ihateibd.com/

Crohn’s Online at http://www.crohnsonline.com/

Crohn’s Disease Info Center at http://www.shafran.net/crohn/

Websites that link to others:

Patientcommunity.com at http://www.patientcommunity.com/

Crohn’s Disease at http://www.crohns-support.net/

Crohn’s Disease Ulcerative Colitis Inflammatory Bowel Disease at http://qurlyjoe.bu.edu/cduchome.html

Online Encyclopedia:

Benkov, Keith J. “Crohn’s disease.” World Book Advanced. 2009. [Garrett
Middle School.] 4 Feb. 2009
<http://www.worldbookonline.com/advanced/article?id=ar272170>.

Hanauer, Stephen B. “Inflammatory bowel disease.” World Book Advanced.
2009. [Garrett Middle School.] 4 Feb. 2009
<http://www.worldbookonline.com/advanced/article?id=ar276270>

I now have a ton if information on the topic of Crohn’s disease, and I need to synthesize it a bit.  From the websites I printed off information that directly dealt with the questions that I asked.  Then I highlighted the important information from that.  I did the same thing with the ebooks.  Since I could access them online it was easy for me to print off the material that helped to answer some of my questions.  While I watched the movies I made notes on them, so I could come back to the information later without having to view the entire movie again. 

 I went through a couple of the sites and used the Evaluation Wizard.  What I liked about using this is that once you pick the website you want to evaluate they give you questions to answer on the sites.  If you choose objectivity it says “How broad-minded or biased is the content?”  There is a space that you can write notes on each site.  I found this really useful, especially for the sites that were made be individuals and not organizations.  The books themselves I looked at the authors, and when were they last updated.

One of the pieces of information I found was a page at the Teens with Crohn’s Disease website that has some recipes that better for patients with Crohn’s. (the whole lactose thing)  So for me, I think I need to try them out.  So what I plan on doing tonight is running to the grocery store to get some of the ingredients for them.  Then on Wednesday I can make something.  But now I have to decide which recipe I want to try.  I am worried about making something and my children absolutely hating it.  But at the same time I don’t want to have to make two meals a night.  I guess all I can do is try them out.  If the kids hate it then don’t make it again.  You know just thinking out loud on paper, I could modify it on a small level.  So if I make meatloaf one night, I can make part of if the old fashioned way and then take some of the meat to make an individual meatloaf for my husband.  Oh wait, my mom used to do that when my dad was first diagnosed with diabetes.  She made individual meatloaves.  I could do that.  Then everyone gets, what looks the same, even though Dad has a special one.  Woo hoo!!

Now that I have some information how am I going to tie it into what I already know?  Well I can honestly say, I don’t know anything about this topic other than seeing the side effects it has on my husband.  The diarrhea and the severe cramping are the most prevalent symptoms I see in him.  I want to be able to help him not just say what I know about his disease.  “The skills they demonstrate go far beyond recitation and regurgitation.  Students listen and question, visualize and connect, examine and challenge.” (Stripling)  As I read through this information something is coming apparently clear, I don’t think he has a severe case of Crohns.  Everything I read says the symptoms can range from mild to severe.  And most of the severe cases are nothing close to what he is experiencing.  That is a relief.  I will have to ask his specialist on how we determine what is mild and severe. 

Wow, I just read over one of the things I printed off.  And I just read about that people with this disease is that there may be loss of appetite with subsequent weight loss (http://www.ccfa.org/).  This explains so much.  I didn’t see that the first time I read over that.  So when he isn’t hungry it isn’t him just being stubborn or joking around.  Which a lot of times I think he is joking because in 2 hours he will be snacking on something.  I wonder if that could happen too.  I mean one moment your not hungry and a few hours later you are?  I will have to try to find that answer.  I think I just went back to wondering . 

Okay, I know I made a list of words to use but this is frustrating.  When I type in Crohn’s disease, Crohns disease, or Crohns I don’t get a lot of information, even when I use a lower case c.  I got one site called National Digestive Diseases Information Clearinghouse.  However, when I type in colitis I get more information hits on the internet.  They do mention Crohn’s in most of them.  I did get a great site from this search called Crohn’s & Colitis Foundation of America.  Wow, what a ton of information here.  I am doing the happy dance now!  Another is Teens with Crohn’s Disease at this site, ran by Matt Smith.  He is a young man that was first diagnosed with Crohn’s when he was 13.  Anyway, on this site he has put a ton of different websites all dealing with diseases of the intestines.  

I guess I need to narrow the focus or maybe it is broadening the focus to see how these two are related (Crohn’s and Colitis).  (If they are related)  So my search strategy will need to change.  In fact, most of the articles also mention inflammatory bowel disease (IFD).  I think I will broaden the search to that and see if I can get more information.  A connection I am starting to make is that they are all related.  IFD is a broad topic that includes Crohn’s and Colitis as specific types under it.  That is a great connection.  That will help with the information I am getting. 

I am finding very quickly that by going to some of the initial sites I can check out links they have as well.  (A type of networking if you will.)  I remember finishing up my undergraduate work and one of my professors telling me once you find an article check out who they used as references.  You could find a lot of different information that you don’t have and that can be useful to you. 

It is funny as I am getting the information I am already thinking ahead and how I can incorporate things into my final project.  I am jumping ahead to weaving….  I know researching is not linear, but I hope it is okay to jump that far ahead.  Not to mention I am glad I kept my questions pretty broad.  Because with the onset of more information I can narrow down if I want to or keep it open.  I know on a few of my questions like the genetics questions I think I will have to narrow it a bit because of the information I have received.  Not to mention the question I had on treatment and/or medicine.  I guess it depends on how you look at it.  So I will need to group this question into different if and then statements. 

As of now, I am feeling pretty confident on the information I have found.  Now that I know how the terms Crohn’s, Colitis, and Inflammatory Bowel Disease fits together.  Yes, I know at the beginning of this blog I was frustrated but it is getting better. 

There is a feature I have found that allows me to chat with a specialist in this area or I can email the site questions and they respond back.  I have discussed some questions with my husband’s specialist in a type of interview, all the initial information that is given to a patient.  I know I will be calling for other questions as well.  I also have found books, ebooks, and movies on this topic.  The ebooks are great.  I can access the information right away.  The movies have not been too bad, kind of on the technical side but still informative.

Where to start?  Now that is the question.  I think I am going to start at a broad topic and move into the questions I want answered.  I know there are a lot of different diseases that involve the intestines and I don’t want to get confused.  Not to mention I don’t want to get information that leads me to the wrong disease.  I think at first I am going to try a website I learned about in another SLIS class.  It is called the Librarians’ Internet Index.  It is designed to keep an eye out on the internet and websites.  Graduate students are the watch dogs and make sure that the links coming up are reliable.  From here I hope to get a lot of hits on Crohn’s.  Also, we have an online encyclopedia at school I will search on as well. 

I know the basic questions I want answered are: what the disease is, how this will affect my husband, how can it be controlled/cured, and can it be passed on to our children.  I know by finding answers to these I will end up with other questions.  But I need to get some initial questions answered first.  That is why I want to start with general sites, move in toward more specific ones (like WebMD), and from books to more specific articles maybe on the most recent research.  I hope that makes sense. 

I can find a lot of information on the internet I just have to be sure they are reliable sources.  I also want to see if there are books on the subject as well.  That should be solved with a trip to the library to see what they have on hand that I can check out.  Another source I can use is the specialist that my husband is seeing now.  I am sure he will answer any questions we have.  

Words to focus on:  Crohn’s Disease, Colitis, inflammatory Bowel Disease, and digestive disease.

People to focus on: Gastroenterologist, doctors, patients, and researchers.

Things to focus on: diets, genetic links, symptoms, stress relation, and medication. 

Ideas to focus on: treatments, new drugs and medicines.

Let’s see what happens with this.