What is Inflammatory Bowel Disease – Part 3 – Ostomies

So the first thing I want to say about this, is that everything I am going to write is from information gotten online.  I don’t have an ostomy so I don’t have first hand experience  with them.  Forgive me if my information is incorrect or out of date.  In fact, please let me know if something is wrong.

Let’s jump right in.  What is an ostomy?  According to the United Ostomy Association of America, Inc, or UOAA,  an ostomy refers to the surgically created opening in the body for the discharge of body wastes.  A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

There are many types of ostomies.  The most common are Colostomy, Ileostomy, and Urostomy.

Colostomy:   The surgically created opening of the colon (large intestine) which results in a stoma. A colostomy is created when a portion of the colon or the rectum is removed and the remaining colon is brought to the abdominal wall. It may further be defined by the portion of the colon involved and/or its permanence.

Ileostomy:  A surgically created opening in the small intestine, usually at the end of the ileum. The intestine is brought through the abdominal wall to form a stoma. Ileostomies may be temporary or permanent, and may involve removal of all or part of the entire colon.

Urostomy:  This is a general term for a surgical procedure which diverts urine away from a diseased or defective bladder. The ileal or cecal conduit procedures are the most common urostomies. Either a section at the end of the small bowel (ileum) or at the beginning of the large intestine (cecum) is surgically removed and relocated as a passageway (conduit) for urine to pass from the kidneys to the outside of the body through a stoma. It may include removal of the diseased bladder.

Now, the first two types, Colostomy and Ileostomy, are the 2 types most common with IBD.  Urostomy is more with urinary track issues.

You might be thinking, ok, now that a stoma is sticking out of the body where does the product coming out go.  Well, the intestine that the stoma is part of is still active and product will come out so it has to be caught in a pouch.  According to the UOAA there are different types.

Colostomy and Ileostomy Pouches:  Can be either open-ended, requiring a closing device (traditionally a clamp or tail clip); or closed and sealed at the bottom. Open-ended pouches are called drainable and are left attached to the body while emptying. Closed end pouches are most commonly used by colostomates who can irrigate (see below) or by patients who have regular elimination patterns. Closed end pouches are usually discarded after one use.

Two-Piece Systems: Allow changing pouches while leaving the barrier/wafer attached to the skin. The wafer/barrier is part of a “flange” unit. The pouches include a closing ring that attaches mechanically to a mating piece on the flange. A common connection mechanism consists of a pressure fit snap ring, similar to that used in Tupperware™.

One Piece System:  consist of a skin barrier/wafer and pouch joined together as a single unit. Provide greater simplicity than two-piece systems but require changing the entire unit, including skin barrier, when the pouch is changed.

With an ostomy comes many psychological issues.  IBD is never easy on the body or mind and an ostomy just adds to the issues.  The following are some issues according to the OUAA.

A. Patient’s Concerns about Surgery
The reaction to intestinal or urinary diversion surgery varies from one individual to the other. To some, it will be a problem, to other, a challenge; where one person considers its life-saving, another finds it a devastating experience. Each person will adapt or adjust in their own way and in their own time.

Body Image/Self-Esteem Concerns
Permanent and significant changes in the body’s appearance and functional ability may change the way the person internalizes their body image and self-concept.

Fear of loss is normal and facing any loss is difficult. What are patients giving up by having this operation? Is there any gain? How changed will they be? Such thoughts may lead to weeping or depression, or they may be denied.

It is important to understand the impact of the ostomy surgery on the patient’s change in self-image and how they perceive themselves. It may be accepted as the lesser of two evils, or they may refuse to acknowledge its existence, or may hold onto the belief that it is a temporary situation.

Within the rehabilitation process there are times that patients should have the opportunity to express or deny their feelings, about their surgery, the changes in their body or their self-image.

Self-Care Concerns
Patients have to be reassured that they will be taught self-care and that they will be able to master the management process. Basic anatomy and physiology should be explained to new patients, so they can better understand the extent of their surgery. Management options should be offered.

Patients should begin to assist the ostomy nurse with caring for the ostomy as soon as possible. Becoming involved in this process will begin to build confidence and help the patient to regain control of his situation.

Relationship Concerns
Patients may fear that their social role may be changed and that others may not accept them as in the past. One of the first concerns seems to be how to tell others about your surgery, who to tell and when.
• Patients should be prepared to explain their surgery with a few brief statements such as, “An ostomy is a surgical procedure for the diversion of bowel (or bladder).”
• They should understand that they do not have to tell everyone about the surgery. Be selective about who and how much to tell. It may be only to friends who will be supportive throughout the rehabilitation process.

Returning to the work place may present a concern about restroom facilities, interaction with co-workers, and feelings of being “watched.”
• Maybe a few of their co-workers may need to know in the event of an emergency.
• Employability and insurability are issues for some individuals. If these issues develop, seek help from healthcare professionals and/or talk with others who have found solutions to any of these issues.

Sexuality issues are common concerns for the new ostomate. Linked closely to our feelings of sexuality is how we think about ourselves and our body image.
• Any sexuality concerns should be discussed between the patient and his partner. It is likely that the partner will have anxieties due to a lack of information. An intimate relationship is one in which it matters how well two people can communicate about the most personal of human functions, that is, bodily elimination and sex.
• Ostomy surgery may present more concerns for single individuals. When to tell depends upon the relationships. Brief casual dates may not need to know. If the relationship grows and leads to intimacy, the partner needs to be told about the ostomy prior to a sexual experience.

B. Phases of Psychological Adaptation
Almost every patient goes through four phases of recovery following an accident or illness that results in loss of function of an important part of the body. The patient, along with the family, goes through these phases, varying only in the time required for each phase. People may experience the various phases of adaptation in a different order and at varying rates. Some people may skip certain phases entirely and some may move up and down at different times.

These phases are shock, denial, acknowledgment and resolution.

1. Shock or Panic
Usually occurs immediately after surgery. The patient is unable to process information and may be tearful, anxious and forgetful. This phase may last from days to weeks.

2. Defense/Retreat/Denial
This phase may last for weeks or months and delays the adaptation process. During this phase, the individual denies or minimizes the significance of the event and defends himself against the implications of the crisis. You may note the avoiding of reality and “wishful” thinking.

3. Acknowledgment
As the patient moves to the next step of acknowledgment, he begins to face the reality of the situation. As you give up the existing old structure, you may enter into a period, at least temporarily, of depression, of apathy, of agitation, of bitterness, and of high anxiety.

4. Adaptation/Resolution
During this phase, the acute grief begins to subside. The patient copes with their situation in a constructive manner and begins to establish new structures. They develop a new sense of worth. This phase may take one to two years.

With the aid of an ostomy nurse and the ostomy visitor, you learn about living with a stoma.

One thing I can say about ostomies, they are not the end of the world and not the end of your life.  In fact, and I have heard this from many people, is that once you get one it usually gives you back your life.  People with IBD get ostomies because they are in dire straits and can’t live their life.  They are having many problems with their disease and usually in constant pain.  By getting the ostomy, the disease part of their intestines is removed and a lot of their problems are gone.  That isn’t to say all of their problems are gone and with ostomies, a whole new set of problems can occur, with dehydration the biggest one.  But overall, most people can begin to live a pain free life and can once again do things they couldn’t before.

As I mentioned I used the UOAA site for this information.  Their site can be found here http://www.ostomy.org/Home.html.

What is Inflammatory Bowel Disease? Part 2 – Ulcerative Colitis

Last month I talked about my disease, Crohn’s Disease.  This month I will attempt to tackle the other most common disease with IBD, Ulcerative Colitis.  Of course, I don’t have it so it will be hard to put my own feelings into this so it might read more like a medical journal.  I apologize for that but I want you, the reader, to understand that IBD isn’t just one disease and we all go through life with IBD differently.

What is Ulcerative Colitis?

The first thing you should know is that Ulcerative Colitis or UC isn’t better or worse then Crohn’s.  It is just different.  Crohn’s can affect any area of the digestive track but UC only occurs in the colon.  You know this by the name of the disease.  Colitis actually means inflammation of the colon.  Someone with CD might hear they have Crohn’s Colitis and get confused.  This just means that the Crohn’s is in the colon.  With UC, not only is the colon inflammed but also has ulceration.  The other difference between the CD and UC is that CD can affect all layers of the bowel wall but UC will just affect the lining of the intestines.

Diagnosing

The first step in diagnosing UC is usually doing blood and fecal matter tests.  They will test your stool for reasons for diarrhea and blood like bacteria,  viruses and parasites.  The next step would be endoscopy.  This might consist of a sigmoidoscopy or a total colonoscopy.  During the scope, like with CD, the doctor will probably take a biopsy.

Symptoms

While both UC And CD are IBD, they don’t have all the same symptoms.  Crohn’s seems to have a lot more since it affects more of the body.  There are many that they do share though.

• Bowel movement become looser and more frequent – Diarrhea is common and like CD is hard to control.
• Blood stool  – Because of the ulceration and inflammation, there will be blood in the stool.
• Abdominal pain – Because this is a gut disease, there will be pain in the abdomen.  At times it can be crippling.
• Lack of appetite – Of course, because of what is going on in the colon, you might not have much of an appetite.  Many people actually feel pain when they eat also and tend not to eat to avoid the pain.
• Weight loss – Between not eating and diarrhea, wight loss is expected and does happen.  With many people it can be a drastic weight loss.
• Fatigue – Because your body is fighting itself, you will feel tired.  There are times when a person with UC will have no energy.  This is normal.

 

Cause of Ulcerative Colitis

The big question of the day….what causes UC?  The answer to this is….no one knows.  Sadly, it is not know what causes UC or any IBD for that matter.  Some say it is the environment, while others will say genetics and still others will say it is the food we eat.  To date, there have been no hard evidence showing what causes Ulcerative Colitis.  There have been studies done on this however.  Once study was done by CCFA:

Research sponsored by CCFA has led many scientists to believe that ulcerative colitis may be the result of an interaction of a virus or bacterial infection of the colon and your body’s natural immune system response. Normally, your immune system will cause temporary inflammation to combat an illness or infection, and then the inflammation will be reduced as you regain health. In people with ulcerative colitis, however, this inflammation can persist long after your immune system should have finished its job.

Like CD, UC affects many people.  In the USA alone there are around 700,000 people affected by UC.  It is equally distributed between men and women so sex is not a factor.  Unlike CD that usually shows up early in life usually in your teenage years, UC is usually diagnosed when the person is in their mid 30’s.  That isn’t to say you can’t get it at an earlier age as there are many kids with UC.

Medicines

Again, to make it easy, I will quote from the CCFA’s website on the types of medicines used:

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 ulcerative colitis.. 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 ulcerative colitis 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, methylprednisolone and budesonide are steroids that are available orally and rectally.  Prednisone and methylprednisolone nonspecifically suppress the immune system and are used to treat moderate to severely active ulcerative colitis. (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.   Budesonide is a steroid that is used to treat localized inflammation.  It has the benefit of minimal systemic exposure with far fewer risks and side effects.  Because corticosteroids cause the adrenal glands to slow or stop the natural production of the human steroid cortisol, they cannot be stopped abruptly.  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. 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 therapies represent the latest treatment class used for people suffering from moderate-to-severe ulcerative colitis.  These treatments are called biologics because, unlike chemical medications, they are made out of material found in life, usually proteins.  Many biologic treatments are proteins called antibodies, which normally are part of the body’s immune defense.  The antibodies used for biologic therapy have been developed to bind and interfere with the inflammatory process in the disease.

Another thing, like CD, that can help is a change in diet.  Again, food does not cause or heal UC but can help in the body to heal itself.  Some foods might make it hard on the intestines like high fiber so a low fiber diet might help some people.

Surgery

In UC patients, there might come a time when meds and diet doesn’t help anymore.  When this happens surgery is usually the next option.  Sadly there is no simple surgery and the results are the removal of part or all of the colon and possibly the rectum.  I will get into this more in another post.

One thing I do want to say about surgery, and I know many people will disagree with me on this, but even if you remove the disease from the colon, you are not cured.  Like CD, UC doesn’t travel so if you remove the disease intestines, yes, the actual disease is no longer there.  Because the disease is more then just in the intestines, you still carry the disease within your blood and DNA.  Also, some would say removing the colon and wearing an ostomy isn’t a real cure either because you are exchanging one problem with another.

Types of Ulcerative Colitis

Like Crohn’s, there is no one type of UC.  Instead there are a number of different types, depending on the location of the disease.  According to medicinenet.com the different types are:

1. Ulcerative proctitis refers to inflammation that is limited to the rectum. In many patients with ulcerative proctitis, mild intermittent rectal bleeding may be the only symptom. Other patients with more severe rectal inflammation may, in addition, experience rectal pain, urgency (sudden feeling of having to defecate and a need to rush to the bathroom for fear of soiling), and tenesmus (ineffective, painful urge to move one’s bowels caused by the inflammation).

2. Proctosigmoiditis involves inflammation of the rectum and the sigmoid colon (a short segment of the colon contiguous to the rectum). Symptoms of proctosigmoiditis, like that of proctitis, include rectal bleeding, urgency, and tenesmus. Some patients with proctosigmoiditis also develop bloody diarrhea and cramps.

3. Left-sided colitis involves inflammation that starts at the rectum and extends up the left colon (sigmoid colon and descending colon). Symptoms of left-sided colitis include bloody diarrhea, abdominal cramps, weight loss, and left-sided abdominal pain.

4. Pancolitis or universal colitis refers to inflammation affecting the entire colon (right colon, left colon, transverse colon and the rectum). Symptoms of pancolitis include bloody diarrhea, abdominal pain and cramps, weight loss, fatigue, fever, and night sweats. Some patients with pancolitis have low-grade inflammation and mild symptoms that respond readily to medications. Generally, however, patients with pancolitis suffer more severe disease and are more difficult to treat than those with more limited forms of ulcerative colitis.

5. Fulminant colitis is a rare but severe form of pancolitis. Patients with fulminant colitis are extremely ill withdehydration, severe abdominal pain, protracted diarrhea with bleeding, and even shock. They are at risk of developing toxic megacolon (marked dilatation of the colon due to severe inflammation) and colonic rupture (perforation). Patients with fulminant colitis and toxic megacolon are treated in the hospital with potent intravenous medications. Unless they respond to treatment promptly, surgical removal of the diseased colon is necessary to prevent colonic rupture.

 

Like Crohn’s, getting a diagnosis of Ulcerative Colitis does not mean your life is over.  With treatment you can go on to live a long and prosperous life.  I know many people with UC that go on to run marathons, climb mountains and participate in iron men competitions.

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.

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.

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.

Summer and IBD

Now that the sun is out and the warm, or rather hot, weather is here many people are happy.  They can go out and enjoy the sunshine and get a tan.  They can hang at the beach or pool.  They have BBQ’s and picnics.  But sadly not everyone can enjoy the summer days.  For many of us, Summer is dangerous.

Like so many things IBD, the heat of the summer days can be bad for us.  For many, it brings on flares.  For others, it is dehydration.  I personally hate the heat as it makes my symptoms worse and I find myself spending more time in the bathroom.

So what is it about the heat that makes our IBD worse.  I looked this up online and found one thing and thought it was interesting.  It was from a site I had never heard of and it talked about a study done in Switzerland.  The website was emaxhealth.com and here is what they posted:

One environmental factor never before discussed is climate change. Could hotter weather make IBD symptoms worse? Researchers with University Hospital in Zurich, Switzerland believe so.

Gastroenterologist Christine Manser and her team reviewed the hospital’s admission records over a five-year period, which included 17 heat waves – defined as any period of six or more days with high temperatures rising above the average daily high by more than 9 degrees Fahrenheit. A total of 738 patients with Inflammatory bowel disease and 786 patients with infectious gastroenteritis were admitted during these hot spells. A control group of 506 people hospitalized for noninfectious GI problems were used as comparison.

Periods of extreme hot weather led to a 4.6% increase in risk of people needing to be hospitalized with a relapse of inflammatory bowel disease for every additional day the heat wave lasted. There was also a 4.7% increased risk of people sickened by infectious gastroenteritis, an inflammation of the stomach and intestines caused by a bacteria or virus with symptoms that include vomiting and watery diarrhea in addition to fever, abdominal cramps, nausea and headache.

Dr. Manser says that several potential mechanisms may explain this phenomenon. The heat waves could induce physical stress, which has been shown to cause flares of IBD. For IG, heat can change the bacterial composition of the GI tract which leads then to symptoms.

The study came from this reference: Christine N. Manser MD et al. Heat Waves, Incidence of Infectious Gastroenteritis, and Relapse Rates of Inflammatory Bowel Disease: A Retrospective Controlled Observational Study. Am J Gastroenterol advance online publication 13 August 2013; doi: 10.1038/ajg.2013.186

When you think about it, it kind of makes sense.  Heat makes things speed up and if we have bad bacteria in us, it kind of makes sense that it can promote growth.  What I do question though is looking at the symptoms (abdominal cramps, nausea and headache) did they look into dehydration as a cause.  Since there were numerous heat waves during the study, these symptoms can also be from dehydration.

That leads me to the biggest rule for the summer for us IBDers.  Stay Hydrated!  If you have to bring water with you everywhere you go.  And yes, I said water not sports drink.  Many of the sports drinks are mostly sugar which can make dehydration worse.  If you stay hydrated with the water, you shouldn’t be losing electrolytes and hopefully don’t need the extra from these sports drinks.  And yes I know everyone is different, especially those with ostomies.  If you know you definitely need the electrolytes, then of course have a sports drink.  My main rule is, make sure you always have something with you to keep you hydrated.

My second rule is dress for the weather.  If it is hot out, don’t dress in long sleeves and jackets.  Wear loose clothing that can breath.  If you feel daring, go for the shorts and tank tops.  I know many IBDers are self conscious about their bodies because of the numerous scars a lot of us have.  I say be proud and show it off 🙂  Don’t let people make you feel bad.  If you are going swimming, don’t bundle up to hide.  Wear that bathing suit proudly.

Third rule is stay cool.  While it is nice to get out doors and enjoy the sun, don’t overdue it.  When you go inside, turn on an air conditioner.  Enjoy the cool air it has to offer.  It can actually help you too because if the heat is going to be bad for your IBD, the cool air is going to help calm the IBD.

So now that you know a little about how to deal with the summer, go out and have fun.  Don’t let the heat stop you from living your life.  I know I won’t.

Food Poisoning and IBD

This past weekend had me thinking about those friends I have that suffer from severe IBD.  Over the Memorial Day weekend, my wife and I went away to Atlantic City.  Our first day there we had fun and looked forward to the next day.  However, things would take a bad turn.

On Sunday morning, my wife got really sick.  She had been suffering from either a cold or allergies so I figured things just got worse for her.  Mid-day, during my relaxing massage, my stomach started having spasms.  Soon I would be really sick myself.  Now, when either of us get sick we very rarely give it to each other.  So the fact that we were now both horribly sick led me to believe that it was an illness but food poisoning.

On Saturday for lunch we decided to go to the buffet at the hotel and one of the dishes that we both ate was cold when it should have been hot.  I should have known better but we both ate it and I am convinced that the product was the cause of our illness.

Now of course we didn’t see a doctor or get our blood tested so I can not say for 100% certain that it was food poisoning but it really looks like it was.  Since there is no proof, I won’t mention the hotel or where we ate so as not to slander them.

As I was laying in bed and then often running to the bathroom I thought about the days when I was really sick with my Crohn’s.  It made me think of some people I know that still suffer badly with the disease.  I know we all hate when people make comparisons like “I know how you feel.  I had the flu once”.  But seriously, food poisoning is a little like the problems we have with IBD.

First, it affects the same area, the digestive track.  My guts and stomach had horrible pains and spasms and at times it was hard to tell if it was the food poisoning or my Crohn’s acting up.  Second, it saps all of your energy to the point that you don’t want to do anything but stay in bed.  Then there is the nausea and vomiting.

So as I am in lying in bed in pain, waiting for what fever I had to break and hoping my wife doesn’t need to run into the bathroom the same time I need it, I started thinking about how some people I know live like this all the time.  I have been lucky and have a pretty normal life.  I don’t normally have pain with my Crohn’s.  My worst symptoms is the bathroom use.  Many people though have pain everyday and struggle to get out of bed.  I never truly understood the struggle until this past weekend.

It is now Thursday and I still have not fully recover.  I start to feel better and then my stomach will lurch and spasm.  I was sitting at work yesterday, in pain, again thinking of my friends.  Many can’t hold down a job.  I have been lucky and can.  I have a desk job and am lucky not to have eyes watching me all the time.  If I feel sick I can rest my head for a bit.  I can take it easy if I need to.  If I had the time to take off, I would have taken a day or two but I don’t have it yet so I had to go into work on Tuesday.  Again, many people can’t seem to work and I thought of them.

It isn’t often that we can take the time to walk in another person’s shoes.  This past weekend helped me to remember what others are going through and help me to remember that there are so many out there struggling and need help.  I took some time off from advocating and working in charities to sort out things in my life.  I now remember why I started all of this and even why I started this blog.  Sometimes we have to fall to remember why we were flying.  The people I know that suffer, they are always in my mind but are even more on my mind now.  

It’s nice to remember why you started to do things and I know remember why I started down this road.  The side trips I took over the past year have been interesting but it is now time to get back on the main road and continue the journey.

Time to continue the advocacy.

 

Myths of IBD

Today is World IBD Day.  Every year our community gets together to celebrate awareness and a ton of posts on blogs and social media pop up.  I am no exception to this and I have written a post in honor of the day.  I have been thinking about what to write about for awhile and I really couldn’t think of anything that I can just type up.  Of the topics in my head I want to do some research and take my time on the topic.  So, I came up with this one which many people have tackled and even I might have done it previously.

Below is my list of 10 big misconceptions and myths of IBD.  They are in no particular order.

1. IBS (Irritable Bowel Syndrome) and IBD (Inflammatory Bowel Disease ) are the same.

I can not stress this enough.  IBD or Irritable Bowel Syndrome IS NOT the same as IBD or Inflammatory Bowel Disease.  IBD is a chronic illness with no cure.  According to the Mayo Clinic,

“Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine (colon). Irritable bowel syndrome commonly causes cramping, abdominal pain, bloating, gas, diarrhea and constipation. IBS is a chronic condition that you will need to manage long term.

Even though signs and symptoms are uncomfortable, IBS — unlike ulcerative colitis and Crohn’s disease, which are forms of inflammatory bowel disease — doesn’t cause changes in bowel tissue or increase your risk of colorectal cancer.”

As for IBD, the Mayo Clinic says this,

“Inflammatory bowel disease (IBD) involves chronic inflammation of all or part of your digestive tract. IBD primarily includes ulcerative colitis and Crohn’s disease. Both usually involve severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes leads to life-threatening complications.”

2. Everyone with IBD will eventually have surgery.

This is a weird misconception.  I know when I was diagnosed, I was told that I would probably have at least one surgery in my life.  When I saw this myth, I was a little shocked.  Of course, if you think about it, not everyone has severe cases and have no issues or problems so of course they might never have surgery.  In my case, I have a mild case and have never suffered from issues like blockages or fistulas.  So, in theory, yes this is a myth.

However, in my opinion only, that is only kind of true.  I say this because of all the extraintestinal problems that come with Crohn’s Disease.  I may never have a reason to have surgery on my intestines.  However, I did have surgery to remove my gall bladder, of which the doctor said he had never seen a worse looking one.  The cause for my rotten gall bladder most likely was the Crohn’s.  So while I haven’t had surgery for my Crohn’s I have had surgery because of my Crohn’s.  Yes, it’s semantics but on the surface, it is still a myth.

With all of that said, according to the CCFA, and this is from 2010,

“About 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will eventually require surgery. Some people with these conditions have the option to choose surgery, while for others, surgery is an absolute necessity due to complications of their disease.”

These aren’t great numbers and it is easy to see why people think that if you have IBD you will need surgery.  However, more than 1/2 the people with UC and 25% of people with CD WON’T need surgery and that makes this statement a myth.

3. With IBD, my life expectancy is worse.

While it is easy to assume that this is true, there is no data to back it up.  I know many of us are connected via social media and are constantly seeing young people dying because of IBD.  I myself lost my father in law as a result of complications due to UC.  As with any disease, there are complications and exceptions.  Overall though, there is no real evidence to show that you can’t live a long life with IBD.

To best sum this all up I recommend reading an article found here, written by Amber Tresca.  The summery of it is this,

“Overall, the IBDs are not generally fatal conditions, but they are serious diseases. While death from IBD is uncommon, it is still important to seek treatment and develop an overall healthy lifestyle.”

4.  I can’t have children.

I don’t need to do research to know this is a myth.  So many people with IBD have kids.  If you couldn’t have kids with IBD, there is a chance since it is hereditary that it would have died out.  However, the key word I just used is hereditary.  That means it gets passed down within your family.  That mean you have to have kids to pass it on which makes this one a big myth.

 

5. Obese people don’t get IBD.

I personally know that this one is a myth.  I know because I was not a skinny kid when I developed Crohn’s and to this day I am not skinny.  Size in a person doesn’t make a difference with IBD.  It doesn’t care if you are skinny, slightly overweight or obese.

Looking online for this myth I came across and interesting study that actually shows an increase in obesity due to Crohn’s which blows this myth out of the water.  It can be found here.

6. There is a cure.

Contrary to what many people think, there is no cure.  PERIOD!  Nothing, and I do mean nothing you do or take will completely remove IBD from your body.  Once you have it,  you will have it the rest of your life.

Now, with that said, there are many different ways to look at this.  First, with UC, many people will say if you get surgery and remove the disease portion of your colon, then you are cured.  While this is kind of true, you really are just replacing one problem with another.  If you remove the disease you most like are left with an ostomy and anyone with one knows, it isn’t a cure.  You can have your life back, but you just trade in one set of problems with another.

Then there are the medicines that can mimic a cure.  There is good results with medicinal marijuana in putting IBD into remission.  LDN has been working great for me and others.  Some of us can go many years without a symptom and think that we are cured.  However, you are only in remission.  Your disease is inactive, but it is still there.

Of course, the real reason that you aren’t cured, even with an operation is, to put it simply, it is in your DNA.  The disease is part of you.  You might remove the active disease with surgery, but the disease is still part of your body.  Years ago it was found to be genetic, which means it is part of your genes.

 

7. A special diet will cure me.

Again, there is no cure.  There is remission, but no cure.

So, with that said, there are diets that can help many people.  Because IBD effects our guts, it makes sense that we will have problems with digestion.  First, many IBDers become lactose intolerant.  This is one of the first changes that seems to happen to many of us.  Next comes a variety of issues.  For some of us, it is a wheat intolerance.  For others, it is a protein intolerance.  Still others can’t digest solid food at all.  It all depends on the severity of  the disease and where in your body the disease is located.

Because of these issues, many IBDers are on special diets and they vary greatly.  There is the SCD diet which stand for Specific Carbohydrate Diet and more info on it can be found here.  To take that one further, there is the low Fodmap diet which again deals with carbs but this is focused more on helping people with IBS.  Many people are gluten free and stay away from wheat products.  The list can go on and on.

If we talk about diet, we must also talk about vitamins.  Because of our restrictions, we need to make sure we also take in enough vitamins and minerals.  Most IBDers will take some sort of nutrition supplement, whether it is liquid like Ensure or in the form of pills like multivitamins.  Some of us even have to go to the doctor to get shots of Iron or Vitamin B.

8. My age/race/ethnicity mean I can’t have IBD.

When I saw this one, I almost laughed.  I never thought that someone couldn’t get IBD because of an ethnicity or age.  I did find this doing some research though and thought it was interesting.  It is from The National Center of Biotechnology Information,

“We found that African Americans and whites predominantly had CD, whereas Mexican Americans predominantly had UC. There was no difference between African Americans and Mexican Americans when separately compared to whites in terms of intestinal manifestations of CD and UC, respectively. However, African Americans with CD had a significantly higher incidence of IBD-associated arthritis and ophthalmological manifestations, notably uveitis, compared to whites with CD. Among UC patients, in comparison to the Mexican Americans, whites had significantly higher incidences of joint symptoms and osteoporosis. Whites had a stronger family history of IBD and colorectal carcinoma compared to the other ethnic groups. p-ANCA served as a sensitive marker for UC among Mexican Americans. All the Mexican Americans with UC tested had positive p-ANCA compared to only 40% of whites.”

9. IBD is caused by stress.

Right now no one knows just what causes IBD.  There seem to be many factors that are involved, such as genetics and environment.  Stress however can be a trigger for flares.  According to the CCFA,

“People with inflammatory bowel disease (IBD) commonly believe that stress can trigger their symptoms, and a new study suggests they may be right.

Canadian researchers found that among 552 patients with Crohn’s disease or ulcerative colitis followed for a year, the risk of a symptom flare-up increased when patients were feeling particularly stressed.

The findings, reported online April 6th (2010) in the American Journal of Gastroenterology, lend support to what many people with IBD have believed to be true. Studies show that many people with IBD feel that stress worsens their symptoms, but there has been relatively little scientific evidence of that.”

10. I can stop treatment when in remission.

To put this bluntly, since you are never cured of the disease, you should never stop treatment.  No matte how well you feel and how long you are in remission, you should always take your meds.  Many medications are made to be taken while you are in remission and it is because of them that you are in remission.  Not only can going off treatment bring on a flare but it can help your body build up a resistance to the medication.

IBD, Transgenders and the Bathroom Laws

With all this talk about transgender people using bathrooms I can’t help but think just how crazy this all is.  We have so many problems in this world and this is what people are wasting their time fighting about.  The more I hear about it the madder I get because truthfully, I don’t care.  If a person feels like they were born the wrong gender and they are trying to correct it, why should we stop them?

Then I really started thinking about this and how it relates to IBD.  I am sure many of you with IBD have been in this situation and will relate.  You go into a restaurant or store and they have gender specific bathrooms but they are single use.  Your gender is taken and you have to go now.  There is no holding it.  So what do you do, you go into the other gender’s bathroom.  Many times we don’t think about it, we just do it.  We don’t care because it is that or we are shitting our pants.

Now, times are changing and certain states are passing laws that say  you are not allowed to use the other gender’s bathroom.  This is aimed at keeping trans gender people who haven’t had the reassignment surgery from using the inappropriate (in the government’s eye, not mine) bathroom.  But really, with these laws, we are all affected also.

What this means is if someone sees you coming out of the wrong bathroom in say North Carolina, you can face a fine or being arrested.  All because you had to do something that is totally normal and natural.

So what does this mean to you.  It means it is time for us to start speaking up for civil rights, not just for us or trans gender people, but for everyone.  When a law is passed, it doesn’t just affect the people it is made for.  There are always other people affected.  Now, with the bathroom laws in the spotlight, the IBD is becoming affected even though we aren’t being attacked.

Whether you believe in people being transgender or not (that is another debate for another time), we have to start speaking up for our community.  Of course the easiest way to speak up is to write your senators and let them know to leave the bathrooms alone.  As for the states that already have these laws in place, you can boycott them.  Don’t visit the states.  Don’t buy anything made in those states.  And spread the word online.

Hopefully one day we can live in a world that is tolerant of everyone.  Personally I am just tired of all the fighting and intolerance.

Meet Dr. Frank J Sileo

In an effort to switch things up and get you, my readers, more involved, I have brought in a great person to hopefully shake things up here.

I want to introduce Dr. Frank J Sileo.

Dr. Frank J. Sileo is a New Jersey licensed psychologist and is the Founder and Executive Director of The Center for Psychological Enhancement, LLC located in Ridgewood, New Jersey.  He works with children, adolescents and adults. He received his Doctorate in psychology from Fordham University in New York City. He received his Master of Science degree from Fordham University and his Bachelor’s degree from Iona College in New Rochelle, New York. Dr. Sileo has been in private practice in Ridgewood, New Jersey since 1995. Since 2010, Dr. Sileo has been consistently voted one of New Jersey’s Favorite Kids’ Docs by readers of New Jersey Family magazine.

Dr. Sileo is an award winning author and an active public speaker. He is the author of five, soon to be seven children’s picture books: Toilet Paper Flowers: A Story for Children about Crohn’s Disease, Hold the Cheese Please! A Story for Children about Lactose Intolerance, Bug Bites and Campfires: A Story for Kids about Homesickness, Sally Sore Loser: A Story about Winning and Losing and Don’t Put Yourself Down in Circus Town:  A Story about Self-Confidence. Sally Sore Loser is the recipient of the Gold Medal Award from the prestigious Mom’s Choice Award.  His sixth children’s book, to be released in February 2017 is on teaching mindfulness to kids.  His seventh children’s book on a type of bullying will be released in the fall of 2017. He has written extensive general interest articles and has been quoted numerous times in various local and national newspapers, magazines, podcasts, websites, radio and television.

Dr. Sileo will be posting on here from time to time.  You may be wondering what makes him qualified to talk to you about IBD.  Well, that is easy to answer.  He is a Crohnie.  He has also on the board of CCFA in NJ and nationally. He speaks across the country for CCFA on the psychological effects of IBD on patients and caregivers.

Let’s welcome Dr Frank Sileo aboard and feel free to leave a comment if you want him to discuss anything specific.

Juicing – Good or Bad

This morning I was looking at Twitter and I saw a tweet that said that juicing really isn’t good for you and lead me to this article.  I know many an IBD that swear to juicing so of course I had to take a look.

Of course like most click baits these days, the article wasn’t quite what was being described.  It goes on to say that juicing as a form of detoxing the body doesn’t really work.  Of course, this isn’t news to me because if you know anything about nutrition, fruits and vegetables while good for you, can actually be harmful in large quantities.  There is the sugar contents and carbs.  I very rarely touch any juice as it also doesn’t have as much vitamins or fiber then if you eat the actual fruit since most of the nutritional elements are in the skin and the skin a lot of times doesn’t make it into the juice.

The reason behind this post is because when I first saw the whole good or bad, I thought right away to all of my IBDers that juice and to them it is a life saver.  Many people can’t tolerate or digest whole foods.  Juicing is a big way for many of us with digestive issues to get our calories and vitamins.  Of course, those needing this make their own juice and usually will have the skin as apposed to the commercial juices that don’t have them.

I actually got angry over the tweet because it should have been said differently.  To just say it isn’t good is very misleading.  The tweet didn’t mention detoxing.  If it did, I would have ignored it.  Instead, it was something just put on the surface which will somehow eventually be taken out of context.  And then, this will lead to people thinking less of those of you that juice for your health.  And also, if you look really fast at the article, which I just did, the first thing you see is Juicing is Officially Dead.  Well, not for my IBDers, I can tell you that.

The one good thing that they do say in the article is this, and it comes at the very end,

“Juice still has its benefits. Juice squeezed from fresh fruits and vegetables is more nutritious than sugary, whipped-cream-topped Frappuccinos. It’s also a convenient way to consume healthy foods on-the-go: I wouldn’t gnaw on a carrot or a beet on my morning commute to work, but I’d certainly sip them through a straw.”

So how many of you juice?  What has been your experience with it?  Why do you juice and what is your favorite recipe?  I would love to hear from you and hear about your experience.

 

 

Upcoming Blogs

Just a quick update.  I am looking to start writing again and I would love to change my format a little.  I want to get you, my viewers, more involved.  So, here is what I want to do.  I am going to list some things I will be writing about soon and I would love for you to let me know if you have any experience or stories you want to share.  You can email me at aguywithcrohns@gmail.com.  It can be a couple of sentences or a couple of paragraphs.  I will respond to you and if I choose to publish what you wrote, I will get your approval first.  I would never publish anything without permission.

So what will I be talking about.  Well, if you have anything to say about the following, let me know:

IBD and arthritis

IBD and weight loss or gain

IBD and depression

Starting a new job with IBD

For now, that is all I have in the works, but of course, if you have an topics you would like me to talk about, let me know.  I look forward to hearing from everyone with their stories and ideas.  Can’t wait to see what we can all transform this blog into.