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  Forgive me if my information is incorrect or out of date.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.

Ostomy

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 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.