What is Inflammatory Bowel Disease? Part One: Crohn’s Disease


I have been sitting here thinking about what to write and it hit me that I don’t think I have ever done a post on just what Crohn’s Disease or IBD is.  So, what better time then now to talk about it.

WHAT IS CROHN’S DISEASE?

Let’s start with IBD or Inflammatory Bowel Disease.  IBD is a broad term used for many diseases.  They are chronic and incurable disease and usually make life a living hell for many of us.  The two main diseases under the umbrella of IBD is Ulcerative Colitis and Crohn’s Disease.  I won’t get into Ulcerative Colitis or UC yet.  Maybe on another post.

Crohns

Crohn’s Disease was first described in 1932 by a number of doctors in a paper.  Because the author’s were listed alphabetically, Dr Burrill B Crohn was listed first and the disease got named after him.  The other doctors involved were Dr. Leon Ginzburg and Dr. Gordon D Oppenheimer.

Crohn’s Disease can affect any area of the digestive tract from the mouth to the anus.  It is most commonly found in the intestines and usually affects the end of the small bowel (ileum) and the beginning of the colon.  CD can affect the intestines in a number of different ways.  Of course, the most obvious is that there is inflammation.  It can affect the thickness of the intestinal wall.  One major thing about this disease is that it can skip areas.

SYMPTOMS

When active, there are many symptoms that can occur.  They can include some or all of the following:

  • Cramping and pain in the abdominal area
  • Rectal bleeding
  • Diarrhea
  • Frequent and urgent needs to move the bowels
  • Constipation – this can lead to an obstruction
  • Nausea and vomiting
  • Low grade fever
  • Weight loss
  • Fatigue
  • Night sweats
  • For women – a loss of menstrual cycle

Besides those symptoms, Crohn’s can cause extraintestinal manifestations including but not limited to:

  • Cataracts
  • Mouth sores and ulcers
  • Arthritis
  • Ankylosing Spondylitis
  • Sacroilitis
  • Osteoporosis
  • Gall Stones
  • Uveitis and Episcleritis
  • Pyoderma gangrenosum
  • Erythema nodosum

CAUSES OF CROHN’S

So what causes Crohn’s Disease.  Well, I wish I had a simple answer.  Truth is, no one really knows.  We know it is hereditary and it has been linked to a gene so we can say it is genetic.  Some say it is an autoimmune disease, which means the body is turning on itself and fighting something that isn’t there, however there has never been enough proof on this.  Some say diet will cause it but again, there is no one food or drink that can be linked to the disease.  Stress has been a factor.  So can environmental factors.  Truth is we really don’t know what the trigger for the disease is and the number of patients with the disease is growing every year.

So you suspect you might have the disease but you don’t know.  Well, the way to find out is to see a doctor.  For your initial diagnoses I would suggest seeing your internist first and let them rule out other illnesses and problems.  If they suspect IBD, then the next person to see is a gastroenterologist or GI.   They will preform a number of test and will most likely include a colonoscopy.  This entails inserting a think flexible tube called a colonoscope into your anus and up into the colon.  The scope has a small video camera on it and is used to take pictures of your colon.  Your GI will most likely take biopsies of your colon to test it for IBD as well as other issues like cancer.  While other tests are also used, like stool tests, MRI’s and sigmoidoscopies, the colonoscopy gives the best view of the intestines.

colonoscopy

Once diagnosed, you will go through many emotions.  You might feel like your life is over.  You might feel relieved to have answers.  You most likely will still feel sick because even though you are diagnosed, you haven’t been treated yet.  This leads me to treatment options.  Now as I said earlier, Crohn’s is not curable (as of yet) so you will have to be on some sort of medicinal treatment for the rest of your life.  I know some people will argue with me over this, but we won’t get into that just yet.

MEDICINES

As far as medicine goes, there are a bunch of different types.  For this I will quote from The Crohn’s and Colitis of America’s page:

 

Several groups of drugs to treat Crohn’s disease today. They are:

Aminosalicylates (5-ASA)

These include medications that contain 5-aminosalicylate acid (5-ASA).Examples are sulfasalazine, mesalamine,olsalazine, and balsalazide.These drugs are not specially approved by the Food and Drug Administration (FDA) for use in Crohn’s. However, they can work at the level of the lining of the GI tract to decrease inflammation.They are thought to be effective in treating mild-to-moderate episodes of Crohn’s disease and useful as a maintenance treatment in preventing relapses of the disease. They work best in the colon and are not particularly effective if the disease is limited to the small intestine.

Corticosteroids

Prednisone and methylprednisolone are available orally and rectally. Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn’s disease. (By “nonspecifically,” we mean that these drugs do not target specific parts of the immune system that play a role in inflammation, but rather, that they suppress the entire immune response.) These drugs have significant short- and long-term side effects and should not be used as a maintenance medication. If you cannot come off steroids without suffering a relapse of your symptoms, your doctor may need to add some other medications to help manage your disease.

Immunomodulators

This class of medications modulates or suppresses the body’s immune system response so it cannot cause ongoing inflammation. Immunomodulators generally are used in people for whom aminosalicylates and corticosteroids haven’t been effective or have been only partially effective. They may be useful in reducing or eliminating the need for corticosteroids. They also may be effective in maintaining remission in people who haven’t responded to other medications given for this purpose. Immunomodulators may take several months to begin working.

Antibiotics

Antibiotics may be used when infections—such as abscesses—occur in Crohn’s disease. They can also be helpful with fistulas around the anal canal and vagina.  Antibiotics used to treat bacterial infection in the GI tract include metronidazole, ampicillin, ciprofloxacin, others.

Biologic Therapies

These medications represent the latest class of therapy used for people with Crohn’s disease who have not responded well to conventional therapy.  These medications are antibodies grown in the laboratory that stop certain proteins in the body from causing inflammation.

One medicinal treatment I won’t go into, but has helped many, is medicinal marijuana.  It isn’t legal in every state so it isn’t an accepted practice yet.  However for people that have used it to treat their Crohn’s will swear it is probably one of the best things to help them.

Besides medicine, many people found by changing how they eat can help with pain and help bring on and stay in remission.  Again, there are a lot of different diets, like drugs, and there is no one diet that works for everyone.  Some of the biggest diets used though are the Paleo diet and Gluten Free diet.

SURGERY

When everything fails, and you just don’t get better, surgery might become an option.  With UC, it has become a sort of cure because once you remove the disease part of the intestines, you remove the disease.  With Crohn’s though, this isn’t true.  As I mentioned earlier, the disease can jump around and skip areas.  Surgery with Crohn’s is usually the last option because even if they remove the area that is bad, there is nothing from having it appear elsewhere.

Some things to know about surgery:

  1. About 70% of people with Crohn’s will at some point require surgery
  2. Approximately 30% of patients who have surgery experience recurrence of their symptoms within 3 years and up to 60% will have a recurrence within 10 years

Now there are a number of reasons to have surgery.  One reason is to help correct and treat for fistulas, fissures or obstructions.  Some people will have their colons removed and may get a J pouch or an ostomy.

Types of Crohn’s

Now you know a lot more about this one disease and I will now throw you a curve ball.  Crohn’s disease can be called a number of different names.  This is because they usually call it based on where the disease is and this can change over the years.  to best describe the names I will again quote from the CCFA:

The following are five types of Crohn’s disease, together with their presenting symptoms:

Ileocolitis

The most common form of Crohn’s, ileocolitis affects the end of the small intestine (the ileum) and the large intestine (the colon). Symptoms include diarrhea and cramping or pain in the right lower part or middle of the abdomen. This type is often accompanied by significant weight loss.

Ileitis

This type affects only the ileum. Symptoms are the same as ileocolitis. In severe cases, complications may include fistulas or inflammatory abscess in right lower quadrant of abdomen.

Gastroduodenal Crohn’s disease

This type affects the stomach and the beginning of the small intestine(the duodenum). Symptoms include loss of appetite, weight loss, nausea, and vomiting.

Jejunoileitis

This type is characterized by patchy areas of inflammation in the upper half of the small intestine (the jejunum). Symptoms include mild to intense abdominal pain and cramps following meals, as well as diarrhea. In severe cases or after prolonged periods, fistulas may form.

Crohn’s (granulomatous) colitis

This type affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others

So there it is in a nutshell.  You now know what I have been blogging about for a number of years now.  The one thing I do want you to take away from all of this is if you do get IBD…your life is not over.  Yes there are some that do die from the disease and there are others that have a lot of issues and problems and find living a major hassle.  For the majority of people though, we do what we have to and live our lives.  There is a lot of support out there and you just have to reach out if you want it.  The IBD community is really big and we love to support one another.

IBD vs IBS


Going through Twitter I see that April is IBS Awareness month.  Now I know, I have IBD and yes I know there is a difference between the two.  I thought in honor of the month, I would post this chart from The CCFA comparing the two.

IBS

I think people need to know that there is in fact a big difference between the two.  IBD or Inflammatory Bowel Disease is chronic and can cause some serious damage to your body.  IBS or Irritable Bowel Syndrome is a functional disorder that causes inflammation but no permanent damage.  The biggest difference, which isn’t on the chart because there are people that will disagree, but IBD can kill where IBS can’t.

IBD Workshop on Nov 8th 2014


Come one come all.  If you are in the Southern Connecticut area on November 8th, there is a free IBD workshop being help by my good friends at The Intense Intestines Foundation.

http://www.intenseintestines.org/ibdworkshop/

 

 

Intense Intestines Crohn’s & Colitis Workshop

We Will Beat IBD

The IIF team is excited to host our first Crohn’s & Colitis Workshop at Equinox of Greenwich on Saturday, November 8th. We will continue our mission to help as many patients with Crohn’s disease, ulcerative colitis and ostomies.

Where: Equinox Club of Greenwich, 16 Old Track Road, Greenwich, CT 06830

Date: Saturday, November 8th

Time: 1:00pm – 3:30pm

Cost: Free to first 50 participants (RSVP required. Reserve ticket by below)

During the first half of the workshop, our panel will cover a wide ranges of topics: pain management, healthy habits, living with IBD, surgeries options, the mental battle with IBD, and much more.

The second half of the workshop will feature a Q&A session. This will be a time for patients and their loved ones to engage with our knowledgeable speakers and learn more about Crohn’s disease, ulcerative colitis, and ostomies.

The panel is made up of an extraordinary group of people who know how difficult living with these diseases can be:

Dr. Freitas: Surgeon at Colon and Rectal Surgery Stamford and Stamford Hospital

Brian Greenberg: Founder and President of the Intense Intestines Foundation

Bob Baker: Ulcerative colitis patient and colon cancer survivor

Jessica Grossman: Founder of Uncover Ostomy

Join us for this free workshop for the Crohn’s disease, ulcerative colitis and ostomy communities. You can register below.

We look forward to seeing you there!

Goodbye To My Old Life


Good Bye

 

This happens to many people every year.  Many of them deal with it and move on.  For us with incurable diseases, it is a major issue.  I now have to deal with it and I am scared.  I am talking about changing doctors.

For years I didn’t have a General Practitioner (GP) and I was fine with that.  I have been jumping around from doctor to doctor and that really hasn’t bothered me.  I always had my GI I could talk to and help me work out any problems.  With my insurance, I can see any specialist without a referral so I felt like I didn’t need a GP.  My GI doctor is a whole other story.  I have been seeing this one for about 6-7 years now and have built up a great relationship with him.  If you read my blog you know some of the issues I have had and how caring my GI has been to them.

Yesterday I came home and saw a letter from Mt Sinai.  I thought it was junk mail and wasn’t going to open it.  Something made me though and I am glad I did.  It was a letter saying my GI was leaving.  I felt so scared all of a sudden.  I don’t worry so much about finding a new one because there are a couple of GI’s with Mt Sinai I know of that are really good.  What scares me is that I have to start over.  I have to share my entire history.  I have to work with a new thought pattern from the doctor.  Worst of all, I have to hope the new GI will approve the LDN I am taking.  That is what scares me the most.

I know in the long run, things will be fine.  I know I really shouldn’t worry as much as I am, but I can’t help it.  Going into something new like this always worries me.  It is just who I am.  Luckily, I have had some good support online from some great people.  They are helping to reduce my stress.

What I would like to know, is how many of you have had to deal with this and how did it turn out?  Did everything go smoothly?  What are your thoughts on changing GI’s when you have a great one?

I do have to say, I will miss my GI a lot.  Luckily he is actually moving closer to me. I just can’t get there and get to work in the same day.  He won’t have weekend hours so I don’t think I will be able to see him anymore, hence I have to look for a new GI.

Crying

Follow up to “Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food”


All our complaints over Dr Mitton’s comments made a difference.  Below is a statement she put out today.

 

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food


Junk Food

Now that I have your attention…the above headline came out today all over the internet.  It was from The Telegraph, a British paper.  The article can be found here – http://www.telegraph.co.uk/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html.

What I wish, is that people would really think before they speak…or type.  First, the claim is that antibiotics used early in life is causing the IBD.  Coupled with that is the intake of “junk food”.  My favorite quote comes from a Dr. Sally Mitton.  She says, “Definitely, if you have a lot of junk food before your diagnosis it actually makes it more likely that you will develop Crohn’s Disease”.  Really?  REALLY?  This is by far one of the worst statements I have heard yet on Crohn’s.  If I eat bad right before a diagnosis then that was the cause.  So by her reasoning, if you are petting a dog and suddenly have a heart attack, then the petting of the dog caused the heart attack.

I really don’t know how someone is allowed to put this in writing without any sort of empirical data to back it up.  So let’s look at my life.  Before diagnosis I hadn’t really had any antibiotics so that isn’t what killed my gut.  As far as junk food, I did eat junk food but I also ate healthy food.  And what about all the people who had IBD before mass-produced sugar products?  What is the reason they got IBD.

Oh wait, it’s coming back to me know.  IBD is genetic and hereditary.  It is something that gets passed down and is in our DNA.  I guess that well-educated doctor didn’t read those articles.

Dr Sally Mitton goes on to say that people can manage their disease by altering their diet.  Um…again not true.  Yes, food can play a role for many people.  But what about people who can’t touch food at all and have to go on TPN?  As we know, there is no one diet for IBD.  Everyone is different.

I swear, every time I think we are making progress with these diseases, something comes out to push us back.  How many people are going to read this article and believe it.  Now we are going to have to hear people say.. “Stop eating junk food and you will cure yourself”.  Ugh.  Ignorance.  I can’t stand it.

As far as the antibiotics go, does she realize that antibiotics are also a treatment for CD?  Hmmm.  It can cause it and then cure it.  Amazing.

Honestly I don’t know what is worse.  A doctor that believes all this, a reporter that will write the article or a paper that will print it.

Colonoscopy Time


Recently I went for a colonoscopy. This is by far the worst time of the year for me. Every year during President’s week in February I go in for a couple of hours to have my GI dr. look at my insides. This in itself is nothing for me. I am put to sleep and don’t feel a thing. It is the day and night before that really kills me. colonoscopy

Before you can get scoped, you have to be cleaned out. That means you have to take powerful laxatives that keep you in the bathroom all night. Growing up, I used to have to drink this nasty liquid from a gallon jug. Of course, I could never get the stuff down. It was by far the worst tasting stuff ever. Over the years they improved things…a little. Now there are choices. You can do this small bottle of phosphate soda which to me is also nasty. There are pills that are the size of horse tranquilizers that you can take. They are also nasty as they are very salty. The easiest form for most people and I think is probably the most popular one now is Miralax mixed with water, soda, Gatorade or any other liquid. However, I can’t get that down my throat either.
prep_meds_new
The prep is very stressful on my body and I get the worst nausea ever. I am sure a lot of it is mental but it is still there. So, my prep is very easy…as far as consuming goes. I take 3 pills of Dulcolax followed by another 3 about 4 hours later. Now I must stress…this is not a normal prep so please don’t do it unless you talk it over with your GI dr. Luckily, I don’t have many issues with my gut. I have no strictures and have had no surgeries. So, this prep method cleans me out fine enough. It does however kill my guts. It gives me the worst cramps and eventually the nausea is so bad that whatever liquid I drank that day comes back out. Once I am cleaned out, the dry heaves start. I get really bad and I feel like I am dying. I do know that it will pass and that thought alone gets me through it.

The other down side to the day before is that you can’t eat anything. You have to be on a clear liquid diet. That means Jello, broth, tea and lots of water. This year, I spent my prep day watching a lot of television. Of course what do I see every 2 seconds…but something advertising food. I watched tons of episodes of Breaking Bad and they were either eating or at a restaurant or having something to do with food. UGH!!!toilet

As you can see, I survived my ordeal. For me, this is a fairly simple procedure. However, I know for many people this isn’t easy. I feel for those people because I know I have it easy and yet it doesn’t feel simple. I have actually seen someone get a number of these scopes within a year. I can’t imagine doing this multiple times within a year. My heart really went out to this person.

My only advice I can give to anyone that has this procedure done is to keep your chin up. The day of prep is just that…a day. It is for one day only. As bad as it seems, it will be over soon. In fact, the prep is worse than the scope itself. So when you are sitting on the throne, doubled over in pain, just remember. Tomorrow, you will get some great meds and a nice deep sleep. And then you can wake up to some juice and crackers, go home and have the best tasting low fiber food around because after not eating for a day, everything taste delicious.