Category

Self Care

Taking care of yourself

Ileoscopy

As an IBD person I go in for check ups with my gastroenterologist every 6 months. Part of that includes a periodic inside peek at my digestive tract to make sure everything is going well. Originally Gastro and I were hoping for a capsule endoscopy (pillcam) which I have used in the past with success. When insurance denied the request we turned to ileoscopy to meet our goals.

Ileoscopy is a procedure where a thin tube called an endoscope enters through the stoma to view the bowel. Smaller than the diameter of most adult fingers, the endoscope is equipped with light, a camera, video camera, the ability to add air and water and tools to take a sample, if needed.

Thanks to the fact that I’m an ileostomate, scope prep was pretty easy and is the same I would have done for the pillcam. No food the day before, just clear liquid until midnight and nothing until after the scope.

Procedure day I got there early. If someone cancels, sliding into the open place is a perk I don’t want to miss out on.

Sedation – Now this is where my experience may differ from others. I prefer to be scoped unsedated. I like being able to participate in the scoping experience by shifting or moving if needed to get the best view possible. I like the ability to ask questions and get answers in real time from the number one expert in the room. Because I am involved and aware I understand the thought process of samples taken as my gastro is really good at explaining as we go, and we both look forward to follow up from the lab. For me, unsedated is worth any discomfort experienced.
*I have had sedated scopes. I simply prefer not to if at all possible.*

Because I’ve been having scopes and cams for ages now, I figured I’d go over a few pros and cons that might be helpful to know so you can plan for a successful time.

Pro Pillcam It’s really stinking cool. Requires no sedation. Depending on the type used it takes two to four images per second as it travels. All that information is streamed to your gastro office where they can review the pictures and get a result back to you as soon as the following day. (Depending on availability in your gastro office) The least invasive way to have a look at your insides.

Con Pillcam Go in early to swallow pill cam. You then leave to walk around with a device strapped to your stomach looking a little too much like a suspicious character for decent people. (The nurse will gently remind you to stay away from libraries and courthouses to avoid ending up on the evening news.) Follow eating and drinking directions throughout the day as you wait on motility to work its magic. Once the pillcam is out you then drive all the way back to the clinic to turn the crime scene esque equipment back in. It’s an all day waiting game. If you’re driving a distance to get to your GI, this can be a huge detractor. (One of the reasons why I really dislike it.) It exhausts an entire day. Things I do to help myself out: Walk around. Exhaustively. Get those bowels moving to pass the pill camera along as rapidly as possible. In my experience, pillcam day is not for taking in a movie, it’s a day for speed walking.

*You’ll want to discuss with your doc any possibility of narrowing or obstruction that could make passing the pill difficult.*

Pro Scope If you recover quickly from sedation, you could leave with an understanding of how things went. If you are a non sedation person, you have on the spot knowledge and can drive yourself to the next task of your day without delay. In and out then on your way. In addition, a scope allows you to take samples and manipulate tissue at the time of viewing. A bonus if you’re like me and don’t want to make a separate appointment for scoping on another day for results you want right away. I’m eager like that.

Con Scope
If you prefer sedation:
You will need to arrange for a driver to wait for you and take you home.
Depending on how quickly you recover, you may need someone to stay with you for a bit after going home.
Wait for discussion on findings with GI until follow up appointment or phone call meeting.
Gas. Air is used to make it easier to see. Once you’re done that gas makes its way out. This can be uncomfortable for some.

If you prefer non sedation:
Squeamishness about your body functions, bowels and the process it takes to look at them is not helpful for success. You must be okay with the idea and participate in the process of someone sticking a tube in your bum or stoma and looking around.
Gas. See above.

Commonalities
Bowel prep required. Ileostomates generally have a bit easier time than those with more parts. Follow the prep your doc prescribes, no food and lots of fluids until it’s time for nothing orally and you’re hopefully clear and ready to go. No cheating. Your doc can see if there’s residue and you’ll have to re test.

At the end of the day the scope went well. When you think about it, it really wasn’t a big deal at all. I am grateful to have a doctor on my team that shares the mindset of prevention first. Because Crohn’s Disease is a shifty little devil, you can have active inflammation even when you’re otherwise feeling fine. We approach Crohn’s Disease with the mindset of stamping out a campfire versus trying to save a forest engulfed in flames; prevention over recovery. A very important distinction that uses tools like regular check ups, pill cams, scopes and lab work to endeavor to keep the IBD flame extinguished and me feeling as healthy as possible.

I made a little video to give you an idea of how it went. Watch it if you like.

 

Stoma Bruise

Living in a southern climate, in a home with zero air conditioning, it gets pretty darned HOT in our little rental house. So my husband and I got all brilliant and made our large family room into the ‘cool room’. Thank you to Costco, we were able to find just the right portable air cooler/de humidifier for a room that size. To maintain the refreshingly chilled atmosphere, we have draperies hung in the entry ways. Since then we have been enjoying the summer feeling comfortable and quite a bit clever about the whole thing.

Until yesterday.

Rushing around in preparation for kiddo swim class I was busily working on getting last minute water bottles filled and towels collected when I ran into this:

2014-07-28_17-09-21_601
The Culprit

This banister lives right on the other side of the cool room drapes. Turns out that it’s exactly the height of my stoma. Like it was planned that way, but not really. At any rate, I collided into this at full tilt.

Well Crap!  Not what I planned on doing today.
Well Crap!  NOT what I planned on doing today.

And straight to the floor cupping myself while I did some deep breathing. Then off to the bathroom to check that I hadn’t torn my stoma or caused active, hospital type bleeding.

Day two and already looking better.
Day two and already looking better.

In my self examination I noted: No laceration, yes my stoma was still attached to my abdomen, yes my stoma was bleeding from the abrasion. The bottom half was strikingly bruised, scraped raw, tight, lopsided and srunk in on itself.

Yikes was he mad!

I felt like I had been kicked in the guts, which was essentially the case. But more of an accidental self banistering of sorts. After applying pressure I got the bleeding to stop and was grateful it wasn’t as bad as it first looked.

I have run into my stoma before, but this time I did quite the number on myself. Here I am a day later and my stoma is still mad but healing rapidly.  The bruising yesterday was much darker.  The abrasions began to look better right away.  I’m thinking because of blood supply, guts heal from scuffs and run ins better than knees?  But I’m no expert on stoma injuries and don’t plan to be.  My little guy is still mis shapen and I’ll call it ‘dented’ in the area where it was hit hardest which didn’t show up very well in the picture.  But even that looks to be improving as well.  I’m guessing this will take the same time to heal as a regular bruise.

And here’s the deal. If I know I’m going to be moving again, or helping someone else move, stacking wood, volunteering for an activity where there’s a good chance I’m going to get knocked in the can, or other wildly fun activity, I happily wear a stoma guard. Or if I had a job where I would be repeatedly irritating my stoma with tasks I performed daily, I would wear one. I own a stoma guard that I like. It’s small and stays put when I move. So that’s not a problem at all.  But when I’m just going about my regular ol’ life, I’m not going to wear a guard. Very few people brace themselves and stay constantly on guard for every day bodily injury/catastrophe. And I’m not one of them. It’s just not how I function.

Try to hurt me now.  I dare ya!
Try to hurt me now. I dare ya!

And so I do the next best thing.

No banisters harmed in this water noodling. I like that it’s easy to remove as well. And no, it’s not exactly pretty. But it is better than a hospital stay if I’m not so lucky next time.

Turns out The Husband runs into this banister frequently and even injured his foot with swelling and bruised results. We both will benefit from this fix.

I figure if life kicks you in the can sometimes, or you’re an occasionally magnificent klutz, like moi, just add a few creative adjustments to make life less painful.

ONCE UPON A TIME


Once upon a time there was a Mom who rushed around excited to get ready to go to a party. Kids dressed, last minute present bought and wrapped and actually arrive on time. Woo Hoo! 


Once there BBQ salmon burgers, corn on the cob, hot dogs for the kids, home made salad delightfulness, cupcakes and punch all laid out in a cowboy theme make you glad you didn’t eat before you arrived. 

In taking the eldest child to find the potty, Mom realizes the tiny bathroom for guests is right by the front door / living room area where all the Moms with babies congregate to nurse and chat.

Said tiny water closet has NO ventilation OR windows!!

Let’s not freak out the infants with poo fog rolling out the loo.  
1) It’s rude.
2)They would know it was me!!!

*sigh*

Taking one for the team.

No food for Mommy.

Nothing in = Nothing out.

The End.

For those who insist on happily ever afters I’ll give you this:
Thanks to IBD I have extensive practice in pretending I ate when others didn’t see, already fullness, practically bursting and I can artfully describe in great detail how delicious a food is that I have never eaten.
In addition, I can casually carry a water bottle and nurse that sucker for all it’s worth.
All part of my secret IBD super powers.

Dehydration and Ostomys

Dehydration

 

Lovely Pacific Northwest

 

As ostomates, it is important to maintain the right balance of fluid levels, sodium, and electrolytes.  Dehydration can sneak up on you quickly if you are not careful.  With a few easy steps you can continue to stay active while leading a full and fun life.

Signs and symptoms of dehydration are:
*Dry mouth
*Dark urine or less urine
*Dizziness
*Increased thirst
*Exhaustion
*Diarrhea
*Headache

You can do a lot to help yourself maintain proper hydration levels.  Avoid foods that increase output such as raw vegetables, dried fruit, fruit juices, and caffeinated beverages.  As ostomates our output can be looser than someone with an entire digestive tract.  Once you learn what your ‘normal’ is, watch out for stool that is unusually loose for you.
Try to stay as healthy as possible.  Sometimes the flu or another bug can cause vomiting and diarrhea.  This double loss of fluids can put you in the danger zone very quickly.  Be sure to be extra aware of hydration levels when you occasionally become ill.
Over exerting yourself can put you behind in your hydration.  Activities such as exercise, travel, or even something as benign as helping a friend move can lead to dehydration.  Please stay as active as you reasonably can while taking steps to hydrate along the way. 
Be careful on warm days.  In addition to our output we also loose fluid through sweat.  It is important to stay vigilant with your fluid needs even if you are slowing down because of the heat.  It seems reasonable for someone working outside in the hot weather to take a break to replenish.  However, even if you are at the beach with cool water and a gentle breeze, you are still sweating.  Remember your fluid needs may increase as the temperature rises.
Thankfully, staying hydrated is simple.  Drink plenty of fluids, 8 to 10 glasses per day comprising of water, Gatorade, Pedialyte, coconut water, or other electrolyte, sodium rich sport drinks.  Limit intake of caffeine as it is a diuretic and contributes to dehydration.  Many ostomates travel with a refillable water bottle to ensure they are never left high and dry. 

Warning!
If dehydration symptoms persist or are accompanied by cramping, vomiting, nausea, pain, or low to no output from your stoma, please seek medical care right away. 

With the right balance of liquids you can continue to stay active, healthy, and safe. 

Ostomy Travel Kit

What to Pack for an Ostomy Travel Car Kit



All the basics




Fits into a small lunch bag for undercover ease.



As active, fun loving ostomates, we spend a fare amount of time adventuring.  So if you are out enjoying your life and you need to refresh your gear, or you have a blow out; being prepared is a very good thing.  Any small bag can be your undercover ostomy travel kit.  I use a normal looking lunch bag.  Unless someone was searching for a snack, no one would ever guess what its real job is.

Here is a list of some of the basics you will need to make your own travel kit:
Barrier wafer
Ostomy bag
Water based baby wipes
Roll of toilet paper – or several paper towels folded to fit
Pen
Ostomy gauge – to cut the hole the right size
Small scissors
Paste – or barrier ring if you use it
Large zip bag – to put all the debris in as you go for a fast clean up
Ostomy garbage bag – supplied by most companies – or just grab another zip bag
Hand sanitizer

Some extras you may want to add:
Skin barrier
Adhesive remover
Plastic gloves
Small room deodorizer spray


It is easy to take a little time to be prepared so you can go out and have fun.


Other handy things to have in the car are fresh pants and underpants.  Also for best results remember to keep your kit in the coolest place in the car.  The trunk or glove box will melt, warp or make your wafer brittle and unusable.

Ostomy Nurses Are Worth Their Weight In Gold!


I am very lucky in so many ways when it comes to my life.  I have a husband who adores me, children who are healthy, active and thoughtful little people.  Extended family that amaze me every day with their capacity for love, and friends that like me for who I am.  Among all of my blessings I have an amazing Ostomy Nurse.  She is just not some ordinary Ostomy Nurse you see, she is SUPER RUTH!!!

First off, on the outside Super Ruth looks like a nurse.  She has pristine clean hands, wears scrubs, has a sassy hair do, and is very efficient.  As a person who has been in and out of the hospital since I was 10 because I stepped on a nail ~I know, ouch!~  And since I was 15 because of my exciting guts, pristine hands and efficient-ness were very comforting for me to see when I first met her.

Super Ruth sparked of intelligence and confidence.  I was coming to her with a significant wound and was in pain up to my eyeballs.  I could not get my wafer to stay on due to granulomas, a ‘trench’ of missing, oozing tissue, and what I lovingly call ‘hamburger skin’ surrounding it all.  Plus I had a fiery acid burn from the output that was continually on my skin.  I was trying to put a happy face on my situation and not show my discomfort.  I was determined for this appointment to go well.  I was going to comply and do what I needed to in order to heal.  Super Ruth my awesome Ostomy Nurse made that very easy.

Super Ruth has a sense about her that no matter what I had going on, she had likely seen worse and knew the steps to getting me towards feeling better -without being cocky about it.  Super Ruth did not flinch or grimace when she saw what I had going on.  I was not treated as though I was gross or repulsive.  Super Ruth had a positive can-do attitude towards my wound that bolstered my belief that I would heal and get better.  There was a capable ‘we can find a solution’ atmosphere.  Super Ruth inspired a person in pain to renew their faith in the long process that often accompanies healing wounds.  She even made the business end of a silver nitrate stick a positive and hopeful experience.  In fact, she complimented me on my pretty stoma and asked which surgeon did the procedure.  She knew my surgeon and said she was a big fan of that surgeons work.  Pretty?  She is the only person outside the surgeons assistants who told me my stoma was pretty.  (I think he is pretty as well.)  I left her office feeling confident, inspired, and buoyed.

Super Ruth was charming and upbeat.  She did not belittle my situation or tell me it was no big deal.  Super Ruth was encouraging.  With her careful care she gave me hope and belief that things would be better.

Super Ruth also tastefully brought up sensitive subjects like my acceptance of my new body and the permanent life change I had just undergone.  She asked me about my sexuality and had ideas and suggestions to help things along that I had not thought of.  Super Ruth sought out my natural gifts and highlighted upon them.  Encouraging me to do what felt right, but also proposing new points of view.  I was educated, encouraged, comforted and spurred onward to my new, happy, active life.

Super Ruth inspired me to think of new options for my life.  At the point that I had gone to see Super Ruth I was still in the phase of being grateful to be alive.  I had a very bad experience with anesthesiology and was thrilled to be breathing and loving my family every day.  Making oatmeal for my children in the morning was awesome like riding rainbows.  I was absorbing every scent and crooked smile, neck hug and held hand.

Today I am confident.  I go about by day feeling like any normal mom.  I do not let my ostomy subtract from my world.  I love my ostomy, see it as the gift it is, and go on being sassy, active, fun, and hard working.  I can still be hawt, conduct business, and at the end of the day be worshiped by my husband.

In part because of Super Ruth you are reading this blog.  She staunched shame, fanned the flame of hope, gave me courage and lifted me even before I knew I needed it.  My Ostomy nurse is worth her weight in gold.  She encouraged, inspired, buoyed, and challenged me to be the Super Ostomate that I am today.  Because of her I am proud, active, and normal.  I thank God for my Super Ruth.

I hope you have a Super Ruth.  If not, I hope you will know your Super Ruth when you meet her/him.  If you are thinking of becoming an Ostomy Nurse, I thank you and wish you Super Ruth as inspiration.  What you do matters.  You change and save lives.

Thank you Super Ruth.

Christy

Just The Basics

 

What is an Ileostomy?

An ileostomy is an opening made by a surgeon into the small intestine to allow stool to follow a different path.  The ileostomy allows the diverted stool to leave the body without the use of the rest of the digestive tract.

What is a Stoma?

A stoma is the part of the small intestine that shows when it is brought outside the body, fashioned into a cuff, and attached to the abdomen in a secure way to allow for drainage.  The stoma resembles the tissue on the inside of your cheek.

Why Would a Person Need an Ileostomy?

There are many reasons why a person would need an ileostomy.  Medical conditions like injury, Cancer, Crohn’s Disease, Ulcerative Colitis, Inflammatory Bowel Disease, or birth defects can lead to an ileostomy.

There are three main kinds of ileostomies.

End Ileostomy: The colon, rectum, and anus are removed.  This is a permanent procedure.

End Ileostomy with a Rectal Stump: The colon is removed but the rectum and anus are left intact.  This procedure can be reversed with a second surgery.

Loop Ileostomy:  This procedure diverts stool from diseased or injured bowel to allow time for healing.

I have the Permanent End Ileostomy.