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

Jul14

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:

About 70% of people with Crohn’s will at some point require surgery
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.

Day 20 #NHBPM – Write about alternative treatments / regimens / medicine.

Nov20

This post will have a double meaning to it. It will serve as my post for National Health Blog Post Month and it will server as an update on my treatment. If you follow me, then you know what I am about to write about.

I want to talk a little about an alternative drug treatment for Crohn’s Disease that is growing in popularity. Now, it isn’t a supplement that is over the counter or some herbs. It is a prescriptive medicine but I say it is alternative because currently, it is not an approved treatment for IBD. I am talking about Low Dose Naltrexone or LDN.

Over the years I have tried every type of medicine for my Crohns. It started with the sulphur drug Azulfidine and has ended with the biologic Humira. I have done Prednisone, Dipentum, Azacol, Remicade, Cortiform, Lialda and possible some others that I can’t remember. None of these meds helped me and in fact I usually got sicker on them and developed other issues. With Humira I developed a bad case of psoriasis. After 24 years of traditional therapy, I was open to something new.

Naltrexone has been around for years. It is mainly used to help drug addicts get off drugs. It works by blocking the euphoric feelings from opiates. It was found that it can be used in a small dose, 4.5 mg compared to 50 mg, and still work. During a study on the drug it was found that by blocking these receptors, it was helping in the body fight off inflammation and heal itself. So a person can take Naltrexone in a low dose, not get major side effects and have it heal their IBD.

The downside to Naltrexone is that it is an old drug. It has been around for many years. This has made the drug very inexpensive. Because there is no money to be made on the drug, why would the pharmaceutical companies spend millions to research it? For a month’s supply I pay $15. I don’t even put it through my insurance.

So how well does it work you ask. Well, to start, the beginning is rough. There are some side effects in the beginning so beware. For the first 2-3 weeks, you will have insomnia. The drug works by kicking in your endorphins at night, around 3 in the morning. It will keep you up when this happens. You will also have very vivid dreams that seem extremely real. Don’t worry..this will all pass. Eventually your body gets used to the endorphin rush and you will sleep. In fact, Naltrexone helps with producing serotonin so it helps you to sleep better.

As for my use, I have been on LDN for about 2 months now. Overall I feel great. I can finally say that I am no longer in a flare, which started in early 2011. I was having a real rough time and even though going gluten-free helped, it never fully took me out of the flare. Now, I am feeling normal again. I go to the bathroom around 3-4 times a day…something I haven’t done in many years. My best day would be 8-10 times a day. I have no gut pain, no joint pains, no eye problems. My psoriasis from Humira is healing and going away. I am starting to feel like a normal person again.

On Monday, I saw my GI. As I have mentioned in the past, I am his first patient to use LDN. It is an experiment for both of us. He seemed very happy that I was doing so well. I am happy that I am well, but I am really happy because if I do real good on it, he might decide to use it as a therapy for other patients. This really makes me happy because not only does it open up a lot of doors for people who are in my situation, but the fact that I would be able to change a doctor’s mind on treatment options. I have always liked my GI as I felt he listened well and was open to new ideas. I wish other doctors would follow his lead.

Day 11 #NHBPM – Write about your favorite thing that is not health-related but likely improves your life

Nov11

My favorite thing that isn’t health related but improves my life. That is such an easy thing to talk about. It all started just under 3 years ago. I never knew what I was missing in life, and then, there she was. The most beautiful girl in the world. I never really wanted her but once I held her, my heart melted and I can’t even imagine life without her. I don’t even know how I lived life without her. She is my bundle of joy. I even remember her first words to me. They scared me. I was sitting on the couch, she was on the floor. She looked up at me at spoke. It took me by surprise because she had been home for about a week and nothing. Then this. I was scared because I wasn’t used to it and didn’t know how to take it.
Ok, you are probably reading this now and are a little confused. Well, here is a picture of my little ball of joy so you can understand me a little better.

This is my Sable. Now she didn’t always look this pretty. In fact, when we got her, she was 4 months old and only 4 pounds. She was underweight and had not come into her own

So how did this scrawny scrappy little girl become a beauty? By some TLC. It all goes back to just after Thanksgiving 3 years ago. We were driving around trying to find some shelters because my wife wanted to adopt a dog. However, we are both allergic so we wanted a poodle which have hair, not fur and don’t shed. They are more hypoallergenic. Problem is, no shelters had any poodles. Since we couldn’t find a shelter, we started looking at shops near us, but found nothing that we liked. Then as we are driving, she calls one place and they say they have one poodle and is sable color. We looked at each other, and we knew. We also had a name for her. When we got to the shop, I saw her right away. I walked over to the cage and she jumped up to play. My wife came over and she jumped for my wife also. They then took her out and we held her. She was so scared and shivered in our arms.

We bought her for a nice amount, but we look at it like we rescued her. At 4 months she was old for a pet store. She probably would have been put into a puppy mill to breed real soon. So now, we have her to live a great life. We never regretted getting her from a store.

So for the next week, she was very scared. She never barked and was very nervous. We talked to her and tried to play with her. Then that one day. I was on the couch and she was on the floor. She looked up at me, crouched down, butt in the air and barked. I didn’t know this was a play stance. She was finally warming up and wanted to play. I however got a little scared.

When I was a kid walking home from the library with a friend, a dog ran out of no where. I think it was a Labrador but I don’t remember. I just remember it was big. I had to be in my early teens. So this dog runs out and jump up on me, knocking me down. My friend jumped onto the roof of a car. I then here from a window of the apartment building we were next, “Don’t worry, he doesn’t bite!”. I got up and ran. I was so scared and ever since had been scared of dogs.

Over time she would eat, and we would cuddle. She started to gain weight and look healthier. I felt so lucky to have her. I would come home from work and there she was, jumping up on my leg so happy for me to be home. We would play with a ball which turns out is her favorite toy to play with. For such a little dog, she has a very big heart. We would of course spoil her and bought tons of toys for her. There were so many stuffed animals lying around that we started calling her area a jungle, and she was the queen.

And this is what happens when she is in charge. She kills her animals and let’s them know she is queen. Ok, this is a bad picture…she needed a grooming.

But over time, she gained her full weight. She runs all over the place. She loves humans and jumps on every one that crosses her path. And every day I come home, she is there to greet me. My heart melts when I hear her barking a greeting to me. No matter what my day was like, I have to forget it and spend some time in Sableworld. I can spend 5 minutes petting and scratching her. As soon as I stop, she wants more. She will nuzzle up to me and let me know she loves me. Some people say that dogs can’t love, that they aren’t capable of it. I disagree. Sable loves me and my wife. When we are gone, she is sad. When we are near, she is never happier.

This is her now. Fully grown. When she looks up at me with those eyes, I get all mushy. I can’t believe how much she has helped me over the past couple of years. I am no longer scared of dogs. She helped me see that all they wanted was love..not harm. She has become connected with me to the point that I can actually understand some of her barks when she wants something. I remember one time she was on our bed and let out a whimper. I looked over, picked her up and put her on the floor. She immediately ran to her wee-wee pad and had diarrhea. It was sad because she was getting sick, but I somehow knew she needed to go to the bathroom. It was like we were connected in thought.

Now, on those days when I don’t feel right or get sad, I pick her up and give her a hug. She is my rock and is always there to cheer me up and make me feel better. Who would have thought that a 6 lb ball of fur would be the best medicine?

Day 4 – Write about what’s in your bag / purse / backpack every day

Nov4

Ah yes – the Go bag, or our version of the Go bag. Almost every person with IBD knows about this bag. We all kind of differ on some items but for the most part we all share the same products. So, what is in mine you ask.

Well, to start off, my bag is a normal book bag. I use this because, 1 – it is easy to carry..just put in on your shoulders. 2 – it is big enough to hide any embarrassing items – you will see what I mean. 3 – it is big enough to carry everything and I can use it to carry other items like packages, umbrellas, kindle, etc.

Now, I don’t always carry this bag with me. When I go to work, I size everything down and put the bare essentials in my work bag. If I am going out and doing daily chores..and feeling great, I will not bring anything. Then there are the bad flare days where I can’t get off the toilet. Then the bag is glued to my back.

Here is my list of products:

Travel Size Toilet Paper
Travel Size Toilet Seat Covers
Hand Sanitizer
Extra underwear
Plastic bag with underwear
Latex Gloves
Immodium/Tylenol/Tums/Gas X (all in a pill dispenser)
Waterless soap
Travel Size Wet Wipes
Flashlight

So there it is. My IBD Go Bag. What is in yours? I would love to hear your comments and compare. Do you have something essential in yours that I am missing?

Goodbye Conventional, Hello Unconventional

Sep25

3 Weeks ago, my treatment for Crohn’s made a change. I took my last shot of Humira. That was my final attempt at a conventional treatment. Since 1988 I have been treating my Cronh’s with conventional medicine. I have run the gambit and tried every catagory of medicine there is with no luck. I have a mild case of Crohn’s and yet I still can’t get into remission. My gluten-free diet has helped but I am not 100% there yet. Humira was the last real medicine to try and that has now failed. So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental. There are a couple of small studies done and they all have looked promising. For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg. It is used to block the feelings of opiates. Mainly, the drug is used to help people get off drugs. It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it. LDN is the same drug only in a low dose form..4.5 mg. LDN helps to boost the immune system and has been shown to help fight inflammation. No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet. More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug. You can get a 30 days supply for $15 (without insurance). That means that no one is really making money off of it..so why would anyone reasearch it. There is no money to be made. A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system. On the whole, the scientific community has been looking at lowering the immune system to treat IBD. LDN raises and helps the immune system. This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN. He had never heard of LDN as a treatment and was hesitant. Yet, he wanted to do research on it. I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out. He has no other patients on the med so this is new ground for both of us. I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy. I was nervous to take the pill as I don’t know how I am going to react to it. The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep. This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep. I can’t wait until I get used to the drug. Overall, there are no side effects which is why I wanted to use this med. The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers. This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen. So on day one, I am normal but tired. No sleep will do that. Day 2 will probably be the same. Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road. I am sure it will be a great adventure.

Who runs our medical community?

Jun6

As someone with Crohn’s Disease, I use a lot of medicine over the course of the year. Whether it is medicine for my Crohn’s, supplements, other ailments (thanks to CD), or just routine medicine, I spend a lot of money. Recently, I received a letter in the mail from my prescription insurance saying that I am only allowed to get 90 days worth of a med from a pharmacy and then I have to use their mail order service.

Ok, so let me get this straight. Instead of being able to go to my local pharmacy of my choice to get a med that I might need right away, I now have to use a service run by an insurance company and wait days to get it in the mail. REALLY????

I need to say first that this is my own opinion. I am not speaking on behalf of anyone but myself.

So, when did corporate America start running our healthcare system. I know it has been going on for a long time..but come on. Not only can you not see any doctor you want, but now I can’t use any pharmacy I want. It was bad when HMO’s came around and all of a sudden they started telling you which doctors you can see and not see. You want to see an allergists? Well, first go to your general practitioner, have them look at you and then get a referral. And you can’t just see anyone. No he has to be in our network. Oh the closest doctor in our network is 30 miles away…we don’t care. Now they are doing the same with our medicine.

The best was when I needed to get approval to take Humira. My insurance wouldn’t cover it. They wanted me to take Methotrexate first. So an insurance company that doesn’t know me or my history is telling me what medicines to take. I think not. And now they are telling me where to get my meds.

What really gets me is what happens when you don’t have any insurance. Well, then you are screwed. If you can’t afford insurance, then the drug companies assume you can’t afford the medicine so you’re not getting it. The same with doctors. No insurance…we then you can’t afford to see me so I can’t see you anymore.

What happened to the days of house calls. What happened to “I’ll take whatever you can afford”. When did doctors stop caring?

Now I know a lot of doctors will be mad at me for writing this..but I don’t care. I hate that it takes weeks to find a doctor. I hate that they all work 9-5 Monday thru Friday. I hate that I have a chronic illness and it is so hard to get treated for it. I live in a very big metropolis area. If I find it hard…what do people in small towns do?

We need to start listening to and caring about our sick a lot more. We need to tell corporations…get out of our medical community.