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Crohn's Disease

Posted: July 25, 2006 5:16 pm
by carolinagirl
Just found out my 21-year-old nephew has a "mild" case of it. I just talked to him on the ride home from the hospital. They didn't know WHAT was wrong with him, intense abdominal pain. He has been there for four days, on morphine, antibiotics. He's finding out about the new low-sugar/low-fiber diet he's going to have to switch to.

I know Buffett Bride has mentioned her friend who has this. Any advice or info?

Meanwhile, y'all please lift up Philip with prayers and phin power. Thanks!

Posted: July 25, 2006 5:20 pm
by tikitatas
Good thoughts and phin power from Nova Scotia!

Re: Crohn's Disease

Posted: July 25, 2006 5:28 pm
by Mick The Pirate
carolinagirl wrote:Just found out my 21-year-old nephew has a "mild" case of it. I just talked to him on the ride home from the hospital. They didn't know WHAT was wrong with him, intense abdominal pain. He has been there for four days, on morphine, antibiotics. He's finding out about the new low-sugar/low-fiber diet he's going to have to switch to.

I know Buffett Bride has mentioned her friend who has this. Any advice on info?

Meanwhile, y'all please lift up Philip with prayers and phin power. Thanks!
Crohn’s disease is an ongoing disorder that causes inflammation of the digestive tract, also referred to as the gastrointestinal (GI) tract. Crohn’s disease can affect any area of the GI tract, from the mouth to the anus, but it most commonly affects the lower part of the small intestine, called the ileum. The swelling extends deep into the lining of the affected organ. The swelling can cause pain and can make the intestines empty frequently, resulting in diarrhea.

Crohn’s disease is an inflammatory bowel disease, the general name for diseases that cause swelling in the intestines. Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as irritable bowel syndrome and ulcerative colitis, it can be difficult to diagnose. Ulcerative colitis causes inflammation and ulcers in the top layer of the lining of the large intestine. In Crohn’s disease, all layers of the intestine may be involved, and normal healthy bowel can be found between sections of diseased bowel.

Crohn’s disease affects men and women equally and seems to run in some families. About 20 percent of people with Crohn’s disease have a blood relative with some form of inflammatory bowel disease, most often a brother or sister and sometimes a parent or child. Crohn’s disease can occur in people of all age groups, but it is more often diagnosed in people between the ages of 20 and 30. People of Jewish heritage have an increased risk of developing Crohn’s disease, and African Americans are at decreased risk for developing Crohn’s disease.

Crohn’s disease may also be called ileitis or enteritis.

Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. The goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like abdominal pain, diarrhea, and rectal bleeding. At this time, treatment can help control the disease by lowering the number of times a person experiences a recurrence, but there is no cure. Treatment for Crohn’s disease depends on the location and severity of disease, complications, and the person’s response to previous medical treatments when treated for reoccurring symptoms.

Some people have long periods of remission, sometimes years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime. This changing pattern of the disease means one cannot always tell when a treatment has helped. Predicting when a remission may occur or when symptoms will return is not possible.

Someone with Crohn’s disease may need medical care for a long time, with regular doctor visits to monitor the condition.

The most common complication is blockage of the intestine. Blockage occurs because the disease tends to thicken the intestinal wall with swelling and scar tissue, narrowing the passage. Crohn’s disease may also cause sores, or ulcers, that tunnel through the affected area into surrounding tissues, such as the bladder, vagina, or skin. The areas around the anus and rectum are often involved. The tunnels, called fistulas, are a common complication and often become infected.

Sometimes fistulas can be treated with medicine, but in some cases they may require surgery. In addition to fistulas, small tears called fissures may develop in the lining of the mucus membrane of the anus.

Nutritional complications are common in Crohn’s disease. Deficiencies of proteins, calories, and vitamins are well documented. These deficiencies may be caused by inadequate dietary intake, intestinal loss of protein, or poor absorption, also referred to as malabsorption.

Other complications associated with Crohn’s disease include arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones, or other diseases of the liver and biliary system. Some of these problems resolve during treatment for disease in the digestive system, but some must be treated separately.

Hope that helps!!! Phin power from the BN nation!!!

Posted: July 25, 2006 5:54 pm
by CapnK
I've got a cousin who has a severe case but has successfully managing it with careful eating. Recommend that he educate himself on this, there's a lot he can do without meds.

Posted: July 25, 2006 5:56 pm
by springparrot
(((Philip)))

Posted: July 25, 2006 8:38 pm
by carolinagirl
Wow, thank you, Mick, for the detailed response. Philip was adopted at birth, so they don't have much, if any, family history. I'm copying all that for a family email to the rest of the aunts/uncles/etc. That helps tremendously.

Thanks, too for the diet advice, CapnK. I talked to Philip on the way home from the hospital, and he is pretty bummed out about the new diet, but he realizes that is key to his health. The poor kid never ate much, and he was finally putting on some weight.

And thanks for hugs and good thoughts, SP and TT!

Re: Crohn's Disease

Posted: July 25, 2006 9:55 pm
by PHAW Webmistress
carolinagirl wrote:Just found out my 21-year-old nephew has a "mild" case of it. I just talked to him on the ride home from the hospital. They didn't know WHAT was wrong with him, intense abdominal pain. He has been there for four days, on morphine, antibiotics. He's finding out about the new low-sugar/low-fiber diet he's going to have to switch to.

I know Buffett Bride has mentioned her friend who has this. Any advice or info?

Meanwhile, y'all please lift up Philip with prayers and phin power. Thanks!
And this is mine and HappyShark's cousin :( she's been dealing with it since she was a kid.

Phin Power to Philip!!!!!

Posted: July 26, 2006 6:19 am
by flipflopgirl
Phin power and lots of prayers to Phillip!!!!! There is a lot he can do with diet!!!!! He might want to check into see a registered dietician at the hospital where he works!!! Maybe they can give him a food plan to follow that will not bother his crohn's and help him keep his weight up! Best of luck to him!!!!

Posted: July 26, 2006 8:12 am
by Mick The Pirate
Hey Carolinagirl,

No problem with the info!! :pirate:

I was pre-med at Penn State before graduating.

As others out here have said, diet is key!!!

There may be no need for meds, only a revamped diet via a nutritionist.

Diet alone can ward off many of the symptoms!!!!

Usually however, there is a need for some type of medication or medications to correct the body's balance.

I'm sure I speak for all of us BN'ers.......

May the power of the fin be with Philip!!!

If I can be of any more help just pm me and let me know!!

Posted: July 26, 2006 11:27 am
by comtnfish
my cousin has this too - he's not so great about following his recommended diet however..... :-?

Posted: July 26, 2006 11:38 am
by buffettbride
First off, best thoughts for your cousin. Crohn's Disease is wicked awful. Lots of discomfort; no cure. It doesn't kill ya, but it makes you wish you were dead.

My friend Melissa has had great success with Remicade treatments (http://www.remicade.com/global/index.jsp). Remicade is an intravenous treatment (of what, I'm not quite sure), but it's delivered very similar to how Chemo is delivered. She started the treatments just over 2 years ago, and recently had to double the dosage during treatments to help increase it's effectiveness (like anything, overtime you have to up the ante to keep reaping the benefits).

She's never been super strict about her diet and hasn't seemed to have any ill-effects from it. Basically what the recommended diet does is decrease the work your guts have to do digesting food that may cause irritation on the coming-out side.

She spent many years in and out of hospitals and on and off steroid treatments (like, more than 10 years of this) before she was diagnosed. She even had her large intestine removed before anyone figured out what it was.

EDIT:
Oh yeah, I forgot the part about fistulas. I know she's had surgery a few times to remove them and did her fair share of donut-sitting. I think this was probably the worst and most painful part. (Melissa is very much a princess/girly girl so of all diseases a person could have, this was probably the most humiliating a sweet thing like she could get).

My best word of advice is to make sure he has good health-care coverage, because his medical expenses will be a life-long concern to ensure he gets the treatments he needs.

There was some kind of legislation a while back about funding for IDBD research. I'll have to check and see how that's doing.

Posted: July 26, 2006 8:30 pm
by carolinagirl
flipflopgirl wrote:Phin power and lots of prayers to Phillip!!!!! There is a lot he can do with diet!!!!! He might want to check into see a registered dietician at the hospital where he works!!! Maybe they can give him a food plan to follow that will not bother his crohn's and help him keep his weight up! Best of luck to him!!!!
Thanks flipflop! He doesn't work at a hospital... He was a patient there with his inflamed colon. He's just 20 or 21 and going to school. They gave him a diet to follow, and he's pretty bummed about it. He has to give up the burgers, fries and sodas. Thanks again for your support.

Posted: July 26, 2006 8:32 pm
by carolinagirl
Thanks Mallory and Renee for the word about your cousin/friend. This stuff sounds horrible.

Thanks fish. I appreciate everyone's support.

And Mick, I copied what you posted to everyone on my sister-in-law's email list. I'm still getting thanks for all the info, and for all the care and concern from this board.

Posted: July 26, 2006 8:33 pm
by cocotel
hello carolinagirl
albert and maria are sending many prayers for phillip tonight
as a recpient of phin power and prayers from many here i know what it can do! :P

maria

Posted: July 28, 2006 3:00 pm
by Big Red Parrothead
When dealing with Crohn's, "mild" is a very relative term. I've been there and I wouldn't wish that pain on Hitler. I ended up having surgery for it 8 years ago and (knock on wood) have been symptom-free since then. I watch what I eat and take a maintenance dose of an anti-inflammatory.

Diet is one of the biggest things. Unfortunately, most Crohn's patients have different things that set them off. For most, it's fiber. For others dairy. Wheat products or grease for still others. There's really not a good way other than trial and error. :( But definitely start off with the low-fiber diet.

For me, stress and lack of sleep were also bad news. If I got overly tired, my whole digestive system would just shut down.

I certainly wish him the best of luck.

Posted: July 28, 2006 3:57 pm
by parrothead216
Ohio Phin Power and Prayers for Phillip! Crohn's can be rough, but the important thing to remember is as everyone said ......Diet! He needs to understand what happens, so he can avoid the things that trigger the inflammation.

Also, don't ignore alternative theraphies. The important part is maintaining the balance in the system! God Bless you all! :wink:

(((((((((((Phillip & Family))))))))))

Posted: July 31, 2007 10:46 pm
by chippewa
Nice article about a 12-year-old boy with Crohn's in today's Free Press.

http://www.freep.com/apps/pbcs.dll/arti ... /707310303

Posted: July 31, 2007 10:58 pm
by nutmeg
North coast phin power on the way.

Posted: July 31, 2007 11:10 pm
by carolinagirl
Wow... this thread is a year old. Thanks for reminding me what was going on with my nephew Philip a year ago. I just emailed his mom that article.

Philip has been managing it pretty well. His mom had MRSA last month, but got over it in four days! Thanks for all the phin power. :)

Posted: July 31, 2007 11:16 pm
by IrishPirate
Your nephew is most definitely in my prayers. We have been dealing with this awful disease for almost 5 years now. My son was dianosed when he was 11. He started with a fistula and snowballed into severe symptoms. He has never had a "remission" but we are always hopeful that it will happen. He is steroid dependent, so the Dr's are trying to keep him off them. Remicade is no longer effective. Colonoscopy showed severe inflamation even after high doses twice as often. His last blood work showed that he is malnurished(Common w/this disease) and enemic, so now he inserts an NG tube every night and gets his nourishment from a formula pumped into his stomach overnight. He hasn't had any "real" food in a week. He's the type of kid who wakes up asking "whats for dinner?" This is very hard on everybody involved, we pray that this therapy works, its so hard to see a kid in pain. Not everybody has it this severe, and some have it worse. It's a nasty disease!
My only advice is be compassionate! Phin Power for your nephew! :wench: