Embracing life with chronic pain and illnesses.

Posts tagged ‘stoma’

Stoma Changes

The one impact of dealing with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder and IBS that I was not prepared for was how it would affect my permanent Colostomy.

I had what the doctor’s referred to as the “perfect stoma”. Always had good color, circumference and height (about an inch above my skin).

The loss of muscle tone thanks to the extreme symptoms of my combination of conditions has taken its toll on all muscle groups….including my abdominals (which had been quite strong prior to initial Colostomy surgery in 2011).

During the past month or so I have noticed that my stoma is at skin height or just below! Not good! (This causes leakage….the barrier I must wear that adheres to the skin around the stoma does not sit tight against the skin when the stoma sinks in….causing output to get under the barrier….which can cause accidents.)

I was able to get a sample of a convex barrier (one that actually gently pushes the skin down forcing the stoma to stand up) that adhered very well to the skin while forcing the stoma to be up at the height it should be.

While I await the delivery of these new style supplies, I have to wear my support undies or my hernia belt that my husband had built for me….the only way to put pressure around the stoma so that the barrier will stay in place and limit leakage.

I still have to change barriers more often than I would like (sometimes 3 times or more a day)…..but the new supplies will make a world of difference! Thankfully they will be here in the next couple of days.

It never ceases to amaze me how our bodies continue to teach….and we must continue to listen and learn!

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Listen to Your Stoma!

Having been a Colostomate now for over 4 years….you would think that I would pay more attention to what my Stoma is telling me about a medication!  Yes…there has been so much on my mind….so much happening since our move……even with the heavy Fibro Fog/Grief Brain……I should have listened sooner!

My Gastroenterologist wanted me to take Xifaxan for 14 days…….3 — 550 mg tablets a day.  The hope was that the continued bloating I deal with due to my IBS (even though the Low FODMAPS diet has drastically improved the symptoms) would be because of excess bacteria in my intestines…..afterall multiple surgeries on the intestinal area can cause this.

Over the past few days….my Stoma has been acting strangely…..yes my tummy was bloated….I could tell that my weight was up a few pounds…..the most striking….my Stoma was retracting……NOT normal for me. Today after my nap….the lightbulb came on!

I immediately started researching the “least likely” side effects of Xifaxan!  And….low and behold, I found fluid retention, bloating, constipation!!!!  DUH!!!!  My Stoma had been trying to warn me about what was happening inside….before I got to the very uncomfortable position I am in today!

Fibro is flaring…..my guts are reeling!  Just want all this mess to pass!  (LOL!!!!  No pun intended!!)

I will not finish the Xifaxan….will contact my doctor tomorrow to let him know what has transpired.  I have taken Milk of Magnesia to start the process of relieving the pressure……

NOTE to self…..when Stoma is acting out of the norm…..MUST consider what has happened….what has changed and deal with it in a quicker fashion!

Stress and IBS

I am sure that I will be preaching to the choir here!

I have learned something more from my body….from the many health challenges that I have experienced…..from experiencing issues that I had to educate my physicians…..

Stress is beyond our control! It is the one element that we cannot dictate….we cannot completely control our exposure to it. We have limited input….we do our best to reduce the stress in our lives….to protect ourselves as much as possible.

The reality….what we experience at work….in life….some stress is easier to control….to deal with than others. Our bodies react more so to some situations than others.

We also have to focus on what is important! Our families….our kids….our spouses…..

We must also try to balance physical activity to promote our own individual personal health. Such a frustrating balancing act at times! Especially when we are trying to regain control! Trying to improve our physical strength/health….improve our time with our family……to just regain a sense of ourselves after dealing with so many years of struggling with serious health issues.

Personally, I have found that the stress from work is the part that I cannot control. The knots in my stomach…the pressure in my gut…is caused by the stress induced by things completely outside of my control. I can do nothing! I can only focus on the time with my hubby and son…..game nights, walking our property in search for tracks and hearing our son’s theories…these are the tools that I use to chase away the stress!

I also use physical activity….walking on the elliptical…lifting weights…..hiking the property…..although I cannot use these options as much as I’d like….I am working towards setting more time aside for me…these physical outlets will help to burn energy…to help to combat stress.

One other key stress release for my is being able to shoot bows with our son. It is such a wonderful stress relief……to breathe….focus on the target…..draw…breathe…then release. We have fun with different challenges.

We have to learn the best way to react….to respond to our body’s response to stress. I wish there was a magic cure….

Ultimately…I wish that none of us would have to deal with issues of stress for our bodies…..

Empowered

This is dedicated to all those fellow Ostomates! The long road that has been traveled to bring us to the point of “rejoining” the living! To be to the point that we have returned to our lives!

Day to day living….going out for a road trip….planning a vacation….all things most people wouldn’t give a second glance….however, if you have had to undergo surgery…especially some type of a stoma surgery, these concepts are forever altered.

I am a proud permanent, colostomate. However, I was very nervous with our first family vacation. So excited and empowered by its success!

Road trips have been a joy! Yet, I was just reminded that my Ostomy can rear its head and remind me that I must pay attention. If I feel that pulling and itching sensation, I must speak up and say “please, pull over”.

Things were going very well! Then last week when returning from my parents, I wanted to ignore that itchy/pushing sensation. My hubby noticed my hand on my tummy. We pulled over at the next wide spot…..

Needless to say…output was overpowering my stoma….I changed my bag…knowing that I had just enough time to get home to completely change my baseplate and bag.

Even being healthy….being able to achieve more than I have in a long time….I know that I have to continue to pay attention to my body.

I cannot take anything for granted. I must truly appreciate every opportunity and continue to challenge myself!

This is the time to embrace each day and to enjoy each new challenge!

My body is very different now. I have been “re-plumbed”….altered….

Now it is time to continue to strengthen….to exercise and become stronger. To show that all the struggle…the pain…leads to a new beginning. To the opportunity of a life that has no limits!

At least no limit as long as one has necessary supplies on hand! LOL

Pizza Night

I had decided to pick up a pizza tonight for my husband and son (taking advantage of the $10 pizza special through Papa Murphy’s). I can order so that 1/2 does not have cheese (since our son is lactose intolerant). I just bring home and sprinkle his cheese on top of his portion (the almond cheese that he likes or Sharp Cheddar).

Tonight though, I thought I would also try a Low FODMAP pizza for me! I stopped at the market to pick up some thin sliced ham that I could use. Once home, I got their pizza in the oven, then pulled out a boxed Chebe basic bread mix. Used that bread mix as my pizza crust. Rolled it out…..made a tomato “sauce” from a basic tomato paste I can use (seasoned with basil, oregano, pepper, sea salt, and a touch of sugar)…..added the ham and pineapple….sprinkled with Sharp Cheddar cheese and baked it at 400 degrees! YUMMM!!!!!

I will change my recipe a touch…..I will bake the bread for about 10 minutes…then add the sauce and toppings……put back in the oven to melt/brown the cheese. This will make it a bit more crispy.

Overall….YEAH! So cool to enjoy pizza night with my guys!!!!!

Ostomy

While waiting in the surgery preparation room, the door was ajar.  As before any surgery, it is a bit nerve wracking….sitting with your loved one….talking…answering the questions nurses and other staff must ask….reviewing the upcoming procedure….saying your name and birthdate….over and over….just to verify that you are you.  (A necessity…I know!  I would not want to mishandled!)

I hear a man’s voice as he is passing in the walkway…..”I would never want a bag!  That would be the worst thing that could ever happen!”

First off….there is obviously worse that could happen!  For me…the thought of not being here with my husband, son, family and friends would be the worst!  It is so sad that someone has such a preconceived negative notion about “living with a bag”.

If you are an ostomate, there is no doubt that there is a transition….even if it is something planned and prepared for…..as was my situation.  I was in such horrific day-to-day pain that I was looking forward to the hope that it would help!  I took time before the surgery to educate myself.  I read all I could find on-line….signed up for OstomyLand and read all the postings possible.  I visited other websites and support groups….also read postings on various medical center websites.

I knew that I was going to go through something major…..I knew that there was a chance it could have to be permanent.  No doubt, the first surgery was complex….with the repair of my rectal prolapse, removal of uterus and the colostomy.  It was strange to wake up with something different…a bit foreign.  The Wound Care Nurse was awesome!  Her support and explanation of how to handle my new stoma was fantastic.

It did take time to gain body confidence.  There were questions from loved ones, friends….and most importantly from our son.  I approached each as an opportunity to share (as appropriate)…..obviously some individuals were given some details….others just a “doing well”.  With our son, however, we chose to be totally open with.  I wanted him to understand that what the doctor had done had improved my health….that it was a positive.

Our son, too, was curious!  He wanted to see all parts and pieces….he wanted to see the barrier….the bag.  He wanted to understand how it was attached…how it worked.  He thought it was “Cool”!

I did deal with a “set back” …..a peristomal hernia.  My husband created a wonderful hernia belt that worked well with my choice of barrier/bag system.  I did go through surgery to have it repaired……

My underlying extremely rare condition to continued to rare its ugly head…..the pain back….even more intense.  I again saw my doctors scratching their heads….their eyes full of concern…..not knowing what could be done.  My constant spastic sphincter (which now was at least 5 years going strong) was unlike anything.  I asked and asked to just have it removed.  Of course, this is VERY extreme…..and would make my ostomy permanent.

I again searched and searched…..read blog after blog…..and continued to dig and interact  with other Ostomates.  My search led me to one other individual….on a different continent who had shared his story….who had had the very surgery that was asking my doctor to do.  The surgery had helped him.  Armed with this information, I again approached my doctor.  After a long discussion, the decision was made.  I had nothing to lose and everything to gain!  So we went for it!

I awoke with no “normal for me” pain!  I was thrilled!  I healed well….my body adapted.  I am even now more thankful for my stoma!

My health issues were not over….no…as anyone reading these blogs I write will know.  However, my quality of life has improved SO much from having a colostomy……at times I wish it could have be done earlier!

The ostomy has provided such opportunity and flexibility!  The products are comfortable and I am not restricted.  I am now looking forward to resuming my exercise routine…..walking and running….hiking…fishing…hunting.  I know….I have 5 more weeks before I can return to work….to start easing back into an active lifestyle.  I will pace myself for a good, solid recovery.

If you or a loved one find yourself in a situation dictating your life to change, please take the time to educate yourself.  If it is an unplanned emergency, please take time to read all you can.  Remember…life has many twists and turns…..our attitudes are SO important.  Be positive…embrace the change….and know that you are not alone!

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