How to learn about Crohn's at a steady pace. PLEASE HELP

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Jermaine
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/24/2010 4:45 PM (GMT -7)   
Hello All,

I know learning about any type of disease its stressful especially because theres so much to learn. If I plan to help my best friend out I want to be prepared and knowledgeable. Ok so guys how would I go about studying Crohn's? For example should I start with leaning about the gastrointestinal system so that I can have an idea od what organs are primarily involved in this disease or should I start out with something else. I have a books and the internet all the tools I need. But its so stressful cause Im so impatient and want to know all that I can as soon as I can. Please help cry

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/24/2010 5:14 PM (GMT -7)   
Read old posts, learn how we really feel. It's good to know the basics and anatomy, but the real hardship of the disease goes beyond the cold facts. So, if you read the situations that the people on this forum have discussed, you will learn a lot. Good luck...
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 8/24/2010 5:32 PM (GMT -7)   
I think that you found the single most important site on the web! sr5599 is right, we speak openly here and that will help you to understand that your BF is not alone. As much as I tell my BFs, I did have a hard time admitting to even them all of the embrassing things that I was living through, but being able to come here and talk helped me to open up slowly to some friends and family. (now when I say I need to leave or rearrange plans they are so understanding.)
If your friend does not already know about this site, tell them! I was lost before I found this site. The people that I have "met" here have helped me to move forward by offering a life line when I need answers and/or support. I also feel rewarded when I can offer any small amount of info or support to some one else.
And Congratulations for taking the lead and wanting to know more. Your BF must be a specail person to have someone that cares so much to ask, learn and be there for them.
I also found the Mayo web site a good starting point, but each person is different, with a different combination of symptoms and levels of severity, and even those very from day to day depending.
Good luck in you search but your most important tool is going to be your shoulder and your ears. ( I know my BFs have loaned me those in the past and I was happy to have someone there to hold me up!)
Diagnosed Endometriosis 1998
Crohns 2008?
Drugs:B-12 inj

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/24/2010 6:07 PM (GMT -7)   
Crohn's disease sucks for many reasons- pain, nausea, embarrassment and a feeling of being an outcast in some cases. The best thing for you to do for your friend is to be there for her to talk about it. I appreciate it when my friends ask me questions, rather than try to give me advice when they don't know what Crohn's feels like themselves. The most annoying thing is that Crohn's disease can progress very differently from one person to the next so it's impossible for someone to say how the disease will affect them. Medications work to decrease the activity of the immune system because Crohn's disease is much like allergies, except we don't know what causes the symptoms. Crohn's is very frustrating because symptoms are unpredictable- during the day I could be fine and then have a painful and exhausting evening or vice versa or could last a week. I've lost touch with so many friends because I have to cancel on social functions last minute many times.

A few key facts are:

Crohn's disease is an autoimmune disease of the entire digestive system, although it varies which regions of the digestive tract are affected from patient to patient. Crohn's disease symptoms, much like allergies, can flare up and then go into remission. No one knows why flare ups occur or how to prevent them. Flare ups can include diarrhea, frequent bathroom trips, fatigue, cramps, and pain, which can include joint/muscle pain.

When you are first diagnosed with something that changes you life the way Crohn's does, you go through the stages of grief. It's important to understand your friend's emotional needs and know that this is life changing for her.

Crohn's is not curable, and all the medications have side effects and dangerous risks. We take them because we have to. Your friend might have to switch from one medication to the next and that's difficult because it feels like you are a guinea pig sometimes. Diet and lifestyle (exercise and de-stressing) are known to help, but nothing can prevent a flare up. There are plenty of diet suggestions online, but everyone is different.

Lastly, since being diagnosed with Crohn's disease 2 years ago, I've really had to open up about talking about poop. I always enjoy a good poop joke.
26 years old. Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8586
   Posted 8/24/2010 8:39 PM (GMT -7)   
Learning about the gastrointestinal system is frankly overkill, unless you just happen to be highly interested by that side of human biology anyway. Anyway, it's not just the GI system which is involved in Crohn's, it's also the immune system: Crohn's disease results from an interaction between the two. In a nutshell, your idiot immune system gets it into its head one day that the (friendly) bacteria, food, and other harmless bits and bobs which lurk in your colon are foreign invaders and starts merrily attacking your GI tract. Short of bashing it over the head with a hammer (via immunesuppressant drugs), there is no way you can 'tell' your immune system not to attack.

Anyway, if you want to learn about Crohn's, there's more than enough info on the internet to be starting off with. Just google Crohn's and various medical sites, charities, forums, etc. will come up. All the reputable medical sites will contain pretty much the same categories of info: causes, epidemiology, symptoms, medications, complications, prognosis, etc. For a basic outline they're usually pretty good. For significantly more in-depth/technical stuff, you will have to cast your net wider and be prepared to trawl through sometimes heavy-going research papers - when you can find them published in full, that is. Obviously, for personal experiences, there is nothing to match forums. You're already at the best forum for Crohn's, but there are others.

And finally, if you get really into your subject, there are books. Tens, if not hundreds, of them >_>. (Just look on Amazon.)

Good luck, and hope your friend doesn't have Crohn's too badly. (That's another thing, by the way: don't assume that Crohn's is an automatically severe disease. It is for some, but not for everybody. You do tend to hear doom'n'gloom stories online, but that's the nature of the beast: the more ill you are, the more likely you are to post on a support forum about your illness.)

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 8/25/2010 5:44 AM (GMT -7)   
Jermaine, you are a really good friend. There is no way to be totally prepared because there are just so many different factors between patients of IBD. Not all cases are the same, not all suffer the same symptoms, not all are on the same med treatments. It's a crazy wicked disease with tons of ups and downs and emotions.

Here I am 11 years after my Daughter's diagnosis still learning everyday by logging into Support Boards. No better info than from those who are already been there, done that.

I made a mistake when my Daughter was first diagnosed to read everything I could and it was pretty darn scary. Much of what I had read did not pertain to my Daughter's case and still doesn't, but some of what I read has come to past as she has gotten older.

Lots of good info here and lots of good info at the CCFA website (Crohn's Colitis Foundation of America).
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/25/2010 7:17 AM (GMT -7)   
Check out the CCFA.ORG, you will find lots of info there. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/25/2010 2:51 PM (GMT -7)   
This might be helpful too...It was a free book once upon a time ago, given by one of the pharma companies...I actually have the printed book version...but I think this is quite helpful...
books.google.com/books?id=81ZQQKbhZu0C&dq=00+Questions+and+Answers+about+Crohn%27s+Disease&printsec=frontcover&source=in&hl=en&ei=YGoAStOLJou-MqnJ0eQH&sa=X&oi=book_result&ct=result&resnum=11#v=onepage&q&f=false

Jermaine
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/25/2010 4:57 PM (GMT -7)   
I have decided to began by learning about how the gastrointestinal system works. I believe that by doing this I can differentiate from what is suppose to be from what is not suppose to be once I began reading about IBD.One of my main references is:


VIEW IMAGE
'Crohn's Disease and Ulcerative Colitis: Everything you need to know
(Revised Edition)
By Fred Saibil, M.D.'

I have also decided to join the Crohn's and Colitis Foundation of America. Its actually quite exciting smilewinkgrin

Jermaine
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/25/2010 4:59 PM (GMT -7)   
Becoming undone said...
This might be helpful too...It was a free book once upon a time ago, given by one of the pharma companies...I actually have the printed book version...but I think this is quite helpful...
books.google.com/books?id=81ZQQKbhZu0C&dq=00+Questions+and+Answers+about+Crohn%27s+Disease&printsec=frontcover&source=in&hl=en&ei=YGoAStOLJou-MqnJ0eQH&sa=X&oi=book_result&ct=result&resnum=11#v=onepage&q&f=false


Im actually waiting for this book to be sent to my city's library so I can check it out :). What a consequence.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/26/2010 7:43 AM (GMT -7)   
One other tip Jermaine, Crohns can affect each in different manners. There are some things that may be similar, but other things that are individual to each of us. Just fyi:)
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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