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  Forgive me if my information is incorrect or out of date.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

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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!

IBD Support


In a previous post I had said I was working on some projects and I would let you know what they were when I could.  The first was the IBD prom which sadly, had to be rescheduled to 2015.

The second project I am happy to announce now is a support/meetup group.  I have been working with The Intense Intestines Foundation to organize a support group for the Northern New Jersey area.  Today we have finalized the details.  On May 28th we will hold our first meet up.

Meetup 1

Over the years I have found that CCFA has been losing touch with people with IBD.  I personally asked for a support group to be formed by them in the Northern NJ area but they denied it.  So, when Brian from IIF heard I wanted to start up a group, he asked me to join on to help IIF in bringing groups to the NY, NJ and CT area.  This will be the first of many new groups.

If you actually live in the area and want to come please let me know or email the IIF at Info@IntenseIntestines.org

Goodbye 2012, Hello 2013


 

As we close the door to another year, I look back to see if I have grown this year.  Of course I don’t mean physically, but mentally and spiritually.  Every year I treat New Years Eve like any other day.  I haven’t made a bid deal about it in years.  This year I have changed inside and I now sit here reflecting on the person I have become.

I went into this year in the biggest flare that I have ever had.  I was depressed, in pain and living in the bathroom.  I was alone with my disease and felt like I had no one to turn to.  I now exit this year in remission, running a blog to help others and feel like I am part of the best community out there.  I am part of a group that no matter how they feel, they will still give all they can to help out others.  It is a very unselfish community and one I am proud to be in.

This past weekend I was able to contribute to this unselfish community.  An online friend who runs an ostomy cover company alerted a lot of people about a 9 yr old that was in the hospital.  He had 2 ostomies and was having a hard time with them.  Originally I was just going to donate a little bit to help cover the cost of the covers she was making for him.  When I spoke with this friend she mentioned that he was in a hospital fairly close to me.  I thought she wanted me to bring him the covers but she mentioned that maybe I could visit him.  I don’t have an ostomy so I didn’t know how much of a help I could be but I put out a call online.   2 wonderful people stepped up to the plate.  One, Michael A Weiss, is a seasoned hospital patient and is very big on patient advocacy.  The second, Marisa Troy, is an ostomate and would be able to give any information that she could. 

I was hesitant to go when I heard the kid didn’t necessarily have IBD, but after Michael and Marisa still were going, I knew I had to.  It was the right thing to do.  So Sunday, we all met at the hospital and visited one of the bravest 9 yr olds I have ever met.  It went through so much with blockages, septic shock, seizures, surgery and just the mental anguish that goes with this.  When we got there, he was sitting on a couch with his family.  He was very shy but I could see the life in his eyes.  I knew he was going to get through this ordeal.  I could see the fighter in him.  His mom’s told us his whole story and he has not had an easy life. 

After our 90 minute visit, I knew I did the right thing by going.  It felt so good.  He might not have said much and didn’t interact with us but I think we helped out his mom’s a lot.  I think we eased their minds a little and gave them not only some answers but hope.  They said that he felt so alone and now both him and his mom’s will know that no matter what, he is never alone.  There are tons of us out there willing to help….no matter what.

So I sit here looking back and I see that this year I definitely grew.  My heart and mind are bigger now.  I understand the whole “holiday spirit” thing.  Doing good things unconditionally feels great and makes me want to do more.  I ended 2012 on a great note and I hope to continue going into 2013.  I don’t know what this year will bring but I know that I still have room to grow….and I look forward to it.

 

You only get 2 feel #Humanity when U GIVE of urself.  Visit a kid in a #hospital.  http://bit.ly/UhiWFg   #26Acts

World Ostomy Day


A fellow activist asked if I could post something about World Ostomy Day and I thought, why didn’t I think of this.  I don’t have an ostomy but many of my online buddies do and my father in law did also.

So, on Oct 6, 2012, the world will be celebrating those people with ostomies.  Go out and help spread the word and if you have one, show it off.  Be loud and proud.

There are a bunch of things going on sponsored by the UOAA (United Ostomy Association of America, Inc) and can be found on their website here  http://www.ostomy.org/wod_2012_promotions.shtml

If you can’t celebrate in the real world, you can do it in the virtual world.  One group on Facebook  is throwing a virtual picnic.  It can be found here  https://www.facebook.com/events/424515670918844/
To everyone with an appliance – you are strong and brave.  Show off your beauty on Saturday and let the world know that you won’t go down fighting.