Anyone have Crohn's Disease?
 

My little sister was just diagnosed..

I don't, but my best friend/roomate does. If I remeber correctly, one or two of my chapter sisters has it also.

She can't eat anything greasy, red meat and a BUNCH of other things. She takes meds every day. Its really no fun when she does eat something that bothers her, or if she forgets her meds :(

Re: Anyone have Crohn's Disease?
 

My oldest daughter was diagnosised with Crohn's disease a couple months before her 18th birthday. She has a fairly moderate case. That was 8 years ago.

I strongly suggest contacting the Crohns and Colitis foundation for helpful information. http://www.ccfa.org/

She has flair ups..but an interesting thing we have found, is Crohns effects a LOT OF people. There is a lot of research...but like with any chronic disease/disorder, I think the sufferer's mental attitude has a lot to do with their overall health.

My daughter has used it as a crutch (unfortunately) whenever she doesn't want to do something (like get a job..but I digress). My husband's coworker has it pretty bad, and he always manages to get along.

Watch your diet, avoid alcohol and smoking, and certain medications (Ibuprofen) and remissions can be longlasting.

Good luck

supposedly if you ingest hog whipworm eggs they'll help keep Crohns in remission.
http://www.newscientist.com/news/news.jsp?id=ns99994852

My aunt has a severe case of Crohn's and has had most of her intestine removed. She highly recommends the book Breaking the Vicious Cycle by Elaine Gottschall. About two years ago they told her that she had precancerous cells on what was left of her intestine and that she was going to have to have surgery again. She started the diet and within 6 months those pre-cancerous cells were gone and she was able to go off most of her meds (which she'd been on for about 20 years).

I don't have Crohn's but I've read the book and follow a similar diet. I highly recommend checking it out if you have Crohn's, Celiac's, Autism, IBS or Colitis.

Welcome to the world of pre-existing-chronic conditions! No matter how good you feel, it will always hang over your head. I was diagnosed in 1992 - was treated w/steroids & sulfa drugs for about a year. I had never heard of it before--the doctors didn't know what was wrong w/me until my dad made an offhand remark about being glad it wasn't ileitis (the old name), and then they knew what to look for (grandad lost 7 feet of his intestine to Crohn's apparently). Now, I hear about people I know getting diagnosed all the time.

I lost alot of weight when I changed my diet according to what the doctor said (no high fiber stuff, no red meat, no spicey foods, no caffeine, no dairy). Took myself off the steroids b/c I didn't like the side effects & started a vitamin/herb regimen in 93, which was really helpful. Got pregnant in 1994, and have been in remission since then.

My advice - try to stay as de-stressed as possible & figure out what foods trigger flare-ups. Shrimp causes flare ups for me, so I just don't eat it (even though I miss it!). Other than that, I don't think about the disease anymore, except for routine physicals....

I'll have to check out that Gottschall book, though.

My co-worker's husband has it... on the one hand it is a sad thing, but on the other hand he is relieved to finally know what has been causing him so much pain lately.

EDIT: Fixed typo.

I have IBS, which is related, but (I think) not as painful as Chron's! Almost anything can trigger me. I had a teacher that had it and he was in the hospital for nearly 2 weeks once.

Can you tell me how Chron's and IBS/IBD differ?

Crohn's is a inflammatory bowel disease (an IBD, not to confuse with IBS). IBS is more of a spastic disease.

Actually Crohn's is an autoimmune disorder that falls under the inflammatory bowel disease classification. There is a considerable body of research being published as of late that indicates Crohn's may actually be the result of a parasite microism, causing the autoimmune response.

Inflammatory Bowel syndrome ALSO falls under the IBD umbrella. Many times IBS is a precursor to colitis, which generally happens before Crohn's Disease.

The hospitalization that my daughter had when she was diagnosised lasted 3 weeks (she did get to leave on a 4 hour pass to go to her prom, complete with IV and mother escort). She had been having tremendous pain and started bleeding in her colon. With out being indelicate, but her bowel movement looked like someone had opened a vein in the toilet. Scared me to death.

She has bled internally a couple of times bad enough that she has come within a breath of being transfused. When she was expecting my grandson, she spent 16 of 39 weeks in the hospital for flair ups.

I'm confused, if IBS falls under the IBD umbrella then what's the difference? :confused: I thought the absense of blood in the stool, weight loss, and fever is what separates IBS from IBD. And those symptoms are the result of inflammation and ulcers, right? So, I assume that the inflammation in IBS is not as severe as Crohn's?

OK, so what you're saying is that Chron's is caused by some sort of autoimmune problem while IBS is more of a structural problem? The reason I ask is because I had some tests run last year that showed that I had some sort of (unspecified) autoimmune disease. I never went back for further testing-shame on me! I've tried tx for IBS but they don't seem to make much difference. Even doing things like cutting caffeine, greasy food and other traditional triggers, I still have problems. I'm wondering if I was misdiagnosed. Anyone have any stories to share??

Yeah, IBS is NOT an autoimmune disease. I would definately look more into this. You can look up Crohn's in Yahoo health and WebMD to see if your symptoms match. Look up Ulcerative Colitis too, I don't know if it's an autoimmune disease, but it is related to Crohn's. Get a second opinion. Some doctors don't know jack.

from the Crohn's & Colitis Foundation of America

http://www.ccfa.org/research/info/aboutcd

Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

Crohn's and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD).

Because the symptoms of these two illnesses are so similar, it is sometimes difficult to establish the diagnosis definitively. In fact, approximately 10 percent of colitis cases are unable to be pinpointed as either ulcerative colitis or Crohn's disease and are called indeterminate colitis.

Both illnesses do have one strong feature in common. They are marked by an abnormal response by the body's immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn's disease, however, the immune system reacts inappropriately. Mistaking food, bacteria, and other materials in the intestine for foreign or invading substances, it launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. When this happens, the patient experiences the symptoms of IBD.

http://www.ccfa.org/research/info/aboutuc

Neither ulcerative colitis nor Crohn's disease should be confused with irritable bowel syndrome (IBS), a disorder that affects the motility (muscle contractions) of the colon. Sometimes called "spastic colon,"+or "nervous colitis" IBS is not characterized by intestinal inflammation. It is, therefore, a much less serious disease than ulcerative colitis. IBS bears no direct relationship to either ulcerative colitis or Crohn's disease.

In addition to the IBD, there is always the secondary inflammation that almost always accompanies these conditions.

In my daughter's case, she has pretty severe arthritis in her back and legs, causing significant pain. In fact her structural pain from the arthritis made diagnosis virtually impossible until she had the bleeding episode. She was treated for almost 3 years for a "back injury" only for us to learn it was all Crohn's related.

http://www.ccfa.org/research/info/complications

The complications of Crohn's disease and ulcerative colitis (collectively known as inflammatory bowel disease, or IBD) are generally categorized as either local or systemic. The term "local" refers to a complication involving the intestinal tract itself. The term "systemic" (or extraintestinal) refers to complications involving other organs or complications that affect the patient as a whole -- rather than just the bowel.

Systemic complications -- which include fever, weakness, and loss of appetite -- are a reflection of the inflammation in the small intestine and/or colon. But there are also some people with IBD who suffer from certain types of arthritis, skin conditions, inflammation of the eye, liver and kidney disorders, and bone loss. Of all the extraintestinal complications, arthritis is the most common. Joint, eye, and skin complications often occur together. For unknown reasons, the extraintestinal or systemic manifestations may predominate in children and even overshadow the intestinal symptoms, which may make diagnosis even more difficult.

Someone I knew in college had Crohn's disease. She had just been diagnosed a couple of months before her freshman year, and hadn't quite come to terms with it. She kept eating the wrong things and having to go to the hospital. :( She just couldn't accept that there were certain foods she needed to give up if she wanted to stay un-hospitalized. I feel sorry for her and anyone with Crohn's or related conditions - I would die without my spicy foods, red meat, and caffeine!

New News
 

http://news.bbc.co.uk/2/hi/health/4091881.stm

Parasitic worm hope for Crohn's

Crohn's disease affects 100,000 people in Britain
Parasitic worms may be an effective treatment for the inflammatory bowel disorder Crohn's disease, research in the US suggests.
A University of Iowa team found most of 29 Crohn's patients who swallowed a type of parasitic worm over a 24-week period showed an improvement.

It is thought that helminths, such as roundworms and threadworms, may prevent Crohn's in the developing world.

The research is published in the journal Gut.

What they are trying to do is to create a sort of anti-inflammatory response.

Dr Alastair Forbes
Crohn's disease rates are relatively high in the developed world, where few people carry helminths.

But in the developing world, where it is relatively common for people to harbour these worms, rates of Crohn's are much lower.

In the developing world it is common for the worms' eggs to contaminate food, water, air, faeces, pets and wild animals.

And they are also found on toilet seats and door handles. Once inside the body, the eggs usually lodge in the bowel, where they hatch into worms.

Unlike other parasitic worms, such as tapeworms, they do not cause disease, and do not invade other parts of the body.

In the latest study, 29 adults with moderately active Crohn's disease swallowed 2,500 whipworm eggs of the species Trichuris suis - commonly found in pigs - every three weeks for 24 weeks in total.

Most of the patients had had their symptoms for around four years and standard treatment had not worked.

Impressive results

Five patients dropped out, but halfway through, 22 patients had experienced a significant improvement in their symptoms, with 19 of them having no symptoms at all.

By the end of the study, all but one had shown an improvement, with 21 reporting no symptoms.

There were no signs that the worms had caused any side effects, but people also taking drugs to suppress their immune system at the same time tended to fare better.

Crohn's disease is caused by an excessive immune response to normal gut bacteria, and the researchers say that helminths suppress the immune response and consequently dampen down inflammation.

As such they might provide a simple alternative to current medications, or could be used in combination.

They stress that the worms' eggs are shed in the stool, but cannot colonise another host until they have been incubated in the soil for several weeks, and so are unlikely to pose a public health risk.

However, they accept that larger trials are needed to confirm their results.

Dr Alastair Forbes, a consultant gastroenterologist at St Mark's Hospital, London, and spokesman for the National Association for Colitis and Crohn's Disease, said the research was interesting, but still at an early stage.

"It makes sense. What they are trying to do is to create a sort of anti-inflammatory response," he told the BBC News website.

"It seems remarkable that some people are prepared to be infected with worms, but the fact that they are says a lot about how poor current treatments are."

However, Dr Forbes said more work was needed to ensure the therapy was safe.

"People with Crohn's tend to have leaky bowels, so something that would not normally get into the circulation might do so in somebody with the disease," he said.


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I don't know how I missed this thread the first time around. I have Crohn's Disease and have posted about it numerous times before.

The foods that trigger Crohn's are very individual. For me, it's nuts, chocolate, onions and alcohol that can really spike a flare. However, when I am in total remission, I can eat anything I want, and this is what my gastroenterologist says too. When in a bad flare, the number of foods I can't eat grows tremendously. Some people have a hard time with nightshade veggies (tomatoes, potatoes, onions). It varies greatly. CCFA claims that no research has ever found a diet link to Crohn's.

I was initially mis-diagnosed with IBS by my primary care doc, but after trying every IBS med out there, she finally sent me to a GI who did TESTS and found out it was Crohn's. This was after living on popsicles and jello for 5 months and losing 65 pounds. After trying every Crohn's med then, nothing could repair the area that was inflamed and damaged so I had a re-section of the terminal ileum and ascending colon. I went into remission for about a year when I started to have trouble again. After blood tests to find out if my meds were at a therapeutic level, we found that my levels were low and increased my meds. I'm now pretty much in remission again. It's hard to remember to take my meds when I'm feeling good (because I take so many pills a day!) so then I backslide and then get good about taking the pills again (not TEH PILLS). I also had to get Vitamin B12 shots but now I have this cool nasal gel that I inhale for my B12 and it's more convenient. The sad thing is, when I was trying to lose weight (and succeeding), it turned out it was because of the Crohn's. As soon as I went back into remission, I gained a bunch of weight again, eating the same foods. You absorb so little when in a flare that your metabolism gets all screwed up. And I actually thought my dieting was paying off then! UGH!

Dee

My sister-in-law was diagnosed with Crohn's about 6 months or so before her and my brother's wedding. It was really rough. She lost alot of weight. She finally started gaining some of it back a few months before, so she did fit in her wedding dress. She's been doing alot better now though... I'm sure it helps that she's a nurse, so she really knows what she's doing with everything.

My roommate has Crohn's. She was misdiagnosed several times with every possible thing you could imagine and it came to a head in college when she voluntarily checked herself into a rehab when a doctor misdiagnosed her with anorexia! She had to be rushed to the hospital one night, and had a pick line for about a month, and they figured out it was Crohn's. She takes lots of meds, and she's a pretty hardworking and cheery girl. It makes me mad to think she spent 2 years going to specialists and not being able to nail down a diagnosis, but she's doing well now.

My mom has colitis, and she's been living with it for a very very long time.

From the Crohn's Support newsgroup I frequent, it seems that most of us go through about two years of hell before getting a definitive diagnosis. Earlier diagnosis could lead to fewer surgeries if they could perfect this.

Re: Re: Anyone have Crohn's Disease?
 

perhaps she does so because of her anxiety about getting a flairup. i dont have it, but i have serious stomach issues otherwise and my anxiety/fear of having a stomach problem has had a serious impact on me getting a job too... its all the anxiety that comes from it. if you could get rid of the problem... things would be much differnt for us ):

I don't have it..but my dad and brother do. My dad actually had to have 7 feet of his small intestine removed. its really not that bad once you regulate it. my brother just takes this meds through an IV (Remicade) once a month or so and he gets along fine. I know so much about it cause I have been to the hopsital twice with him during his flare ups....but now that they both regulate it...it does not inhibit them in any way.

FYI- get second opinions as mentioned earlier in this thread because it took 5 different MD over 4 months to figure out I had IBS back in 1991 after questioning me about being prego etc (some MDs do not know much about IBD/IBS disorders. I had gas pains that the some pregnant ladies experience, cut out greasy, spicy, carbonated was very limited & did the herb tea thing and other herbs to calm the digestive track since the Rx med did nothing & still don't (for me anyway)

Weight loss is possible w/ IBS I lost weight and looked anorexic (sp? -have since gained it back but that is another thread). I do not go anywhere that doesn't have "facilities" & I had to have someone cover my classroom around 5 times for RR emergencies. I'm going to follow up to see if it is the start of colitis.

For not being a disease it SUCKs royally. Sorry for being winded.