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OF RETRACTIONS AND PROLAPSES…

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Hey Everyone,

How are you doing?

It’s been a long time since my last post. Too long in fact. Time has been against me as well as my mental state! Oh, and my physical state as well! It seems some days are great and others are just downright awful!! Anyway….the topic for this post is about retractions and prolapses of the stoma, both of which are unpleasant experiences.

Information in this post is sourced from the book “Fecal & Urinary Diversions Management Principles” as well as my own personal experiences.

Up until mid July, I had only experienced retractions,and then for whatever reason, my ileostomy prolapsed. It prolapsed about 20cm (7.8 inches), and excruciating pain accompanied the prolapse. The term prolapse means the telescoping of the bowel through the stoma. There is no definitive length to a prolapse, which can vary in length between 12.5 to 33cm (5 to 13 inches), based on those figures, mine was mid-range. I can assure you though it felt like my WHOLE innards were tumbling out

In the days leading up to the prolapse, I’d been experiencing a niggling pain at the “top” of my stoma, that  is to say that looking down on my stoma, if it were a clock it would be 5o’clock. On the day, this pain was getting noticeably worse. Each time I bent over, or forward, when I straightened up, this pain was really catching. By days end, it was really quite severe. Id eaten a little bit of tea, and was in the loo, when I started experiencing super severe upper abdominal cramps. I noticed that my pouch had filled with liquid. Uh oh…please not an obstruction! Please not an anything!!!!!

When I emptied the pouch, as I undid it, and the liquid poured out, so too did my ileostomy!! I nearly died! I removed the pouch and couldn’t believe what I was seeing. (I got photos of it to send to the surgeon, but I don’t think it appropriate that they be displayed here!) There was my ileostomy…all 20cm of it! By this time, the cramping still hadn’t abated, and I was sweating and clammy. I was trying to think rationally…not easy when you’re in shock!

Not only did the length shock me, but the diameter as well. It was extremely enlarged. I had a go at reducing it. This means that I attempted to gently push it back inside. I guess because of my state, I wasn’t able to do so. It was difficult to reduce though and the pain was still intense. I called for an ambulance as it is my only means of transport into the hospital, and I knew I needed some serious pain relief!!

At the hospital, I saw the Dr on call. She had a look at the stoma, attempted to reduce it but also ran into difficulty.In addition, this was the first time she had seen a prolapsed stoma, so no doubt she was a little bit nervous!  A decision was made to call in the “head honcho”. He came in to see me,prior to coming in, he  had phoned through to the surgical team at the larger hospital informing them of my presence and diagnosis. He wanted to let them know of me in case he couldn’t reduce it and I would have to travel the 100km to have it surgically repaired. He managed to reduce it after about 1/2 hour of gently putting pressure on it and distributing the oedema that had occurred. It was also starting to become a dusky colour instead of the nice healthy red that is often associated with a stoma.

I was kept in hospital overnight, NBM to rest the bowel, and ease the cramping. Also the Dr wanted to make sure that it wouldn’t prolapse again. If it did, I was going to be sent to the larger hospital. I’m sure I hardly moved all night, just in case I prolapsed again!!

Since that first prolapse, I have had eight more since…The next couple weren’t as long, and were quite easy to reduce. Each subsequent prolapse however got longer and longer, until, it was about the same length as the first one. The most recent prolapse, which I’m happy to say was been about 6 weeks ago, was as long as the first one. The unusual thing with that one was it was quite hard to reduce. After I reduced it though, it prolapsed within 10 minutes of me standing up. The second attempt at reduction was again, not without it’s difficulties. This time, I laid down for about 20 mins, unfortunately within 10 minutes of getting up, it prolapsed AGAIN!! This was the third prolapse within 1/2 hour!!! This time I stayed in bed for the rest of the day. I was too scared to get up, and besides, I had a lot of pain.

Since the last episode where I had prolapse after prolapse, I have experienced the same pre-cursors but without the prolapses! I’m hoping that this is a good thing but I can’t really be sure…I guess time will tell.

Now to the opposite end of the spectrum…retractions…

A retraction is when the stoma disappears to at or below skin level. I too experience retractions, in fact, I experience retractions way more frequently than I do prolapses! My ileostomy, when it retracts, retracts from the “top” (closest to my navel) in. My retractions are also accompanied by a “ripping” sensation, and they tend to fully retract so that all I’m left with is a hole on my stomach!

Retractions tend to occur more frequently with ileostomies, that is not to say that they don’t occur with a colostomy. I wonder if they occur with a urostomy, and other stomas? The main problem associated with retractions is the inability to maintain a seal on the pouching system. This is because the output undermines the flange seal, in turn breaking down the adherent. Output then sits on the peristomal skin which if not addressed as soon as possible, will lead to a breakdown of skin integrity.

For me personally, I am always unsure as to what size to cut my hole on the flange. If I cut the hole to fit the stoma, my output will run under the flange seal as soon as I lie down or my output becomes to thick!! Of course, I’m alerted to this by that “crawling” sensation on my skin. On the other side of the coin, if I cut the hole to large to fit the semi-prolapse I experience – well-YUP – you guessed it…output leaks onto the skin and burns it. It’s a catch 22 for me and I’ve  tried lot’s of different methods, pouching systems, glues, rings, seals and so on to try and stem the retractions and maintain skin integrity. In fact, I think I’ve become a stomal therapy nurses’ nightmare!!

At present I’m wearing a convex pouching system.The purpose of the convexity is to put minimal pressure on the stoma so that it will spout nicely into the pouch. I’ve trialled several different brands – and the most effective/comfortable one for me right now is the Coloplast 2 piece convexity Sensura style. Several months ago, I was wearing the one piece Convatec convex brand. For whatever reason, it seems that my needs change and I have to make sure that I try not let my skin get badly excoriated. If this means having to change my appliance brands well so be it. The companies are continually working at modifying appliances, so I find it a good idea to phone them every few months and chat with them about upcoming appliances. They are more than willing to send samples for you to try.

The causes of retractions will vary from person to person.It does seem to result from tension on the stoma. The following factors can contribute to tension: A short mesentery; Thickened abdominal wall; Excess scar tissue/adhesion formation; Obesity; Inadequate initial stomal length; Improper skin excision; necrotic stoma; and mucocutaneous separation.

My stoma retracts at any time – day or night – regardless of ANYTHING! As soon as I lie down on my bed, it retracts and it is just a matter of time before I experience leaks. To date, I haven’t read of any other ostomates who have had this trouble as regularly as I am experiencing, but my ileostomy has a mind of its own. It retracts (and now prolapses) as it feels. I always make sure that I have PLENTY of appliances with me when I leave the house.

One day, I hope that research will be undertaken to find a sure fire way to prevent retractions and prolapses. I’m more than willing to be a guinea pig for any trial.

No matter how many times I experience leaks because of my retractions, they still affect me mentally as well as physically. I feel helpless and hopeless, dirty (after all, I have just sorta crapped myself). Sometimes I find that  I tend to fall into a bit of a depression as I just have such an uncertainty when I leave the house. Although I lay claim to having tried “everything” – if anyone out there reads this this and has suggestions, PLEASE let me know know what they are. I AM WILLING TO TRY ANYTHING!

Whilst this has been a personal journey entry, I’ve tried to incorporate a little bit of education in here as well. Hope you’ve enjoyed and learnt something from my journey….we are not alone in this…

Have a great day,

~Carolyne~

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A QUICK UPDATE…

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Hi Followers,

I humbly apologise for my silence on my blog…There are so many reasons why I’ve not written anything. In short though, at the present moment I’m not coping…

I’m not coping with the constant pain that hounds me 24/7…that’s another posting!!

I’m not coping with the troubles that I have with my ileostomy…it keeps retracting. Retractions lead to leaks, and leaks lead to damaged skin!! Oh… That’s another posting though as well!

There’s no doubt that I won’t have a shortage of topics, which is a good thing. I don’t want to be a depressive read though. My goal is to use my experiences-the good, the bad and the ugly- to help others, to raise awareness.

Coming up is WORLD OSTOMY DAY…OCTOBER 6TH…The theme for 2012 is      “Let’s be Heard”…

http://www.ostomyinternational.org/wodnew2012.htm

 

These are a few promotional images….The lilac ribbon contains the words “Wear Lilac for Life” There is a story attached to this theme and I will be writing a post on this to link in with World Ostomy Day. The ribbons are to raise ostomy awareness and can be purchased for $1.00/ribbon. All proceeds will be donated to the Cancer council QLD (Australia). If you would like to purchase a ribbon…email Kylie at  admin@qldstoma.asn.au

What is happening in your country? I’d love to hear as we are united in our stand to raise ostomy awareness. How we came to be an ostomate is 1/2 of the journey…the rest is what we do with the journey to the best of our capabilities….we are brought together through adversity!

Stay strong….and at the time of writing this I send a special word of love and strength to a beautiful person…Charis. Charis underwent her 8th(?) operation the other day… “GET WELL SOON CHARIS”. Hugs and Kisses from Australia!

Bye for now followers and readers,

~Carolyne~

 

 

Looking back…Moving forward…

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Hi Folks,

Here’s another incident that I want to share with you, and I hope you enjoy reading this adventure of mine:

A few weeks ago, I wrote a post about being fitted with a Holter monitor, to monitor my heart for a 24 hour period. I expected nothing to come from this, and was shocked when I received a phone call from the cardiologists receptionist telling me that the cardiologist wanted to see me A.S.A.P!!!

An appointment was made, and so, instead of going home from where I was staying, I stayed a few extra days. No complaints there though…I was staying with my sister!

My sister and I turned up for the appointment, filled out the forms and waited. We hadn’t waited long when I was called in. I had my speech ready to explain the abnormal ECG reading (so I thought!). The cardiologist took a brief history of my family illnesses. Both parents died of massive heart attacks so needless to say, the Dr was concerned when I told him this!

He then did an ECG, which I could see from where I was lying, was abnormal. I’m not fully experienced at ECG reading, but I do know when an ECG doesn’t look right; but I still wasn’t overly concerned! After the ECG, I had an Echocardiogram, this is like an ultrasound of the heart. It’s very interesting to see the heart pumping, and the blood flow etc. The Dr pointed out a leak to me, I still didn’t fully understand what he was showing me! After this test, we then went back into his office, where he began telling me that there was huge abnormalities of my heart…

I had a HUGE leak between my chambers, and this was affecting the pressure in my lungs! In addition, the strange ECG readings were similar to those seen by someone who as had a heart attack!! I couldn’t believe I was hearing this! How much more can I take? Not just me mentally, but my body?? The dr. wanted to do an angiogram as soon as possible, and so I was booked in for the following day…PHEW things really were moving fast!!

The next day, my sister took me to he hospital. I was given the gorgeous gown to wear! Because I have an atonic bladder, I have to have an indwelling catheter inserted. I usually do this as it saves embarrassment! I lay waiting and praying that everything would be ok…I just couldn’t believe that this was really happening to me.

An angiogram shows the arteries that feed the heart muscle, achieved by injecting dye into a catheter that has been inserted into the femoral artery in the groin. The catheter is feed along the artery and into the heart, as well as into the artery on the heart. Dye is injected and this highlights the arteries. If blockages are present, they can be seen on the monitor.The catheter tip is then fed into the heart where it is able to read the pressures of each chamber. Technology never ceases to amaze me!

I was awake the whole time and was able to see everything on the screen…the dr. explained everything as he went along!! after the angiogram is finished, it takes about 20-30 minutes, the nurse puts pressure on the artery. This is so you don’t bleed to death!! Because I have a bleeding disorder, the nurse was putting pressure on my groin for about 1/2 hour!!

The dr. came and talked to me about the results…the good news: I don’t have blocked arteries! The bad news: I have a condition called “Takotsubo Cardiomyopathy” This is where the point of the heart balloons and doesn’t pump very well. It is a Japanese name that represents the pots that Japanese use to trap octopus!! There are several other names for this condition; “Broken heart syndrome”, “Stress-induced heart failure”. The second name is the one most suitable to me. This condition is caused by stress, physical or emotional and is more common in women than men. The dr. believes that mine was caused by the stress of the prolapses, in particular the first prolapse I experienced!

Thankfully, this condition is transient and will clear in a couple of months. Medication can be given, but unfortunately for me, because my blood pressure is already to low, I’m unable to take it. All I can do is ride the condition out, rest and don’t push myself to hard!

As I write this post, I am in hospital, where I will see the surgeon about my stoma, the haematologist about my blood and the urologist about my bladder…but that will be a whole new post altogether!!

I wanted to share with you about the results of my Holter monitor reading that I thought would show nothing at all…so much for that!!!

Cheers,

~Carolyne~

 

LEAKS AND EMERGENCY KITS…

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Morning,

This is a quick post, but one that I’ve been wanting to do for some time now. It is something that I think affects quite a few people (although I’m not exactly sure how many!)

I have an ileostomy that has a mind of it’s own…most are like that I know:)…mine tends to retract. When I say retract, I really do mean retract. It goes right into my abdomen, leaving nothing but a small hole. Of course, even though its retracted, it still continues to function!!!

With the continuation of function comes output that goes directly onto my skin. This feels like a million ants with spiky boots are walking on my stomach, and is the first warning sign that all is not well…besides the pain!!

Anyway, my ileostomy can and will retract anywhere and at anytime! So I can deal with the mess that comes with the retraction I ALWAYS carry my “emergency kit”.

I thought I’d share my kit with you, and maybe if you have your own kit, you can email me photo’s of your kit. I can then upload them so others, particularly new ostomates, can get some ideas….

I purchased a cosmetic pouch to hold all my gear…

Here’s a sneak peek in my emergency kit… read on to find out what is really in the kit!

I carry a base plate and spare pouches…when I know Im going to be flying, I always make sure that I have cut the hole out on my base plate. This is because of the restrictions that apply to carrying sharp things onto planes, e.g. scissors

TA DA!!! heres is the rest of my kit…I carry knickers, just in case the ones I’m wearing get messed. When disposing of the used pouch etc, I use the scented nappy disposable bags; they are cheap and easy to dispose of. I came across flushable wipes as well. I use these to clean the skin around the stoma, other times I use chux wipes and water.

My scissors are curved, this makes it easy to cut the circle out on the plate…before putting on the plate, I use a barrier wipe. There are lots available on the market, so what is good for one person may not necessarily suit another!!!! The role of tape comes in handy if the plate has lifted a little.

ALWAYS CHANGE THE WHOLE APPLIANCE IF YOU HAVE A LEAK, THIS HELPS PREVENT PERISTOMAL SKIN DAMAGE!

NEVER FLUSH THE POUCH OR PLATE DOWN THE TOILET…DISPOSE OF IT THOUGHTFULLY!

Please feel free to share what is in your emergency kit,

I hope you enjoyed reading through this as much as I enjoyed sharing what is in my emergency kit!

Cheers,

~Carolyne~

Slow Colon Transit…The Invisible Illness

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Ostomy surgery is lifesaving surgery, the majority of people with an ostomy have had their bowel/bladder ravaged by IBD, cancer, or accidents…

…there is another illness that goes unseen, that can also result in a person becoming an ostomate.

I want to use this blog to give a brief description of the “invisible illness” and how it links in with MY JOURNEY…

I ended up with an ileostomy because I had Slow Colon Transit (SCT).

WHAT IS THAT???

Unlike IBD which is an inflammatory disease of the intestines, STC is a functional abnormality due to disordered nerves and muscles of the colon. Biopsy of the bowel of sufferers of STC has revealed the muscle layer of the bowel wall has abnormalities of the neurotransmitters…

“Abnormalities of the WHAT????

Abnormalities of the neurotransmitters!!

I’ll try to simplify the definition of neurotransmitters the best I can….

Here goes…

….a neurotransmitter is the brain chemical/peptide that communicate information between the brain and the body. They relay signals between the nerve cells. The brain uses the neurotransmitter to tell the colon to propel the food along its length.

I hope that’s easy enough to understand!!!!

A deficiency of  a peptide called “substance P’ has been identified as being involved in activation of the bowel contraction. As a result, movement of pooh along the colon is markedly delayed; transit studies reveal that pooh is usually stored in the right or transverse colon. This was VERY true of me. When results of my Nuclear Transit Study came through, the surgeon explained to me that I had retained over 1/3 of the tracer in my right (ascending) colon, as well none of the tracer was noted in my rectum! This test is performed over five days, so it was this test that I had failed miserably. Contractions don’t adequately push the pooh along the colon to the rectosigmoid section of the bowel. The rectosigmoid is responsible for the propulsion of pooh out of the body. However, the inadequate propulsion leads to a build up of pooh which of course leads to pain and  discomfort equals constipation!

In addition to my bowel having a problem propelling pooh along, I also had a rectal emptying impairment… constipation is a symptom and is reflective  of both of these problems! There are lots of definitions of constipation floating around, the most easiest one to understand is “difficulty in passing stools or incomplete or infrequent passage of hard stools.” To me this definition says it all and I think a lot of people will be able to relate to it! It’s a difficult thing to try and “normalise ” the toileting behaviours of humans! After all, what is normal and healthy for one person is not necessarily so for another. When I first got married, I thought my husband had a problem…he would dash to the loo every morning not long after he had eaten his breakfast!! Me? I would go every however many days my body decided; that could be 3 days, 5 days or even 10 days!! I seriously thought that he had the problem…I even told him that he should see a doctor!

There is a small number of people with slow colon transit that may have a “mega-colon”- a colon that is twice as long and wide as the normal colon. I had been diagnosed with excess bowel following my colonoscopies. Rectal emptying impairment or defecation disorders usually involves some kind of poor muscle function of the recto-sigmoid, rectum or pelvic floor…age, childbirth or anorectal surgery are the most common causes. In my case, childbirth was another  contributing factor to my emptying impairment. I had given birth naturally three times. I endured long and difficult labours. When the surgeon asked me about childbirth, and I explained to him the problems endured…he shook his head in disbelief!! Not only did I have SCT, I also had damage to my pelvic floor!!! It seemed I was ticking ALL the boxes with huge red ticks…

There is a lot of debate surrounding treatment of constipation, and it is dependent upon the cause. If constipation is due to poor diet, lack of fibre or exercise then a change in these areas should help with constipation. If it is because of laxative abuse, stopping laxatives, will help the bowel return to normal. However, when constipation is because of SCT, and the person has been properly evaluated by physiologic testing and proven to have SCT, then surgery is usually beneficial for these people. The procedure of choice is a subtotal colectomy with ileo-rectal anastomosis (IRA). In other words, removal of the large bowel, and rejoining of the ileum to the rectum, unfortunately,  diarrhoea, recurrent or persistent constipation,  and incontinence are complications that may be seen after this type of surgery. This was my downfall following my (IRA)!!

Following my IRA and the complications that followed, it was then decided to form a permanent ileostomy…

…becoming an ostomate is lifesaving, life changing surgery, I was becoming sicker and sicker, suffering bowel obstructions;

SCT was the “invisible illness” that resulted in me becoming an ostomate…

[Source: Bowel Continence Nursing, http://www.chronicillness.org.au]

Monday Musings!

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Hello Everbody,

I hope everyone had a great and restful week-end.

The weather has been beautiful where I live.

Today I was fitted with a Holter monitor. It’s similar to a portable ECG machine that records tracings of the hearts electrical ability. It is worn over 24 hours, and is an absolute nuisance! It’s like having to wear a handbag over your shoulder for 24 hours! You can’t have a shower, and sleeping? Well I’m yet to tell. I suppose for those of you who toss and turn, it would get in the way. But for those of you who sleep like I do-never moving- well it shouldn’t pose too much of a problem!

The reason I am wearing one is because when I had my operation in early July, my heart rate slowed right down, dangerously low. The drugs that are used to reverse slow heart rates didn’t have any effect on mine. The only thing that seemed to influence and speed up my heart rate was getting out of bed!!! When I stood up from bed, my beats skyrocketed up to 144. A couple of times during testing it looked like things were starting to return to normal…not for long though!

The recordings are analysed by the cardiologist, who then sends the results up to my GP…from there,  my GP sends the results to the Dr’s who will benefit the most from them. There’s no sense sending results to the dentist! As I’m going to be admitted into the Wesley hospital 20/08/2012, results will be sent to my surgeon, who will in turn, send them onto the cardiologist who I will be seeing whilst in Brisbane! The monitor will be removed tomorrow morning at the same time that it was put on!

The fact that I have this monitor on me continues to remind me how frail yet resilient our bodies can be! My body has had so many operations and procedures under general anaesthetic, and whilst I may have set backs, my body still manages to rally around and reach the point of healing! To me this is reflective of resilience and strength. But, over time, is it all really becoming to much for my body to bear? Is everything that’s happened to me catching up; perhaps this is the frailty of our bodies? I’ve become a little bit of a puzzle to my treating doctors because they can’t work out whats happening with my heart. The main and most encouraging thing is that it’s not major and I’m not likely to die from it anytime soon!!

Having my heart monitored, although it’s not serious, serves to remind me that it was only a few years ago that my large bowel was the problem. In a short time since,  the bladder no longer has proper function, my ileostomy would painfully retract and now it painfully prolapses (another story!), my blood takes a little longer than most to clot and now my heart decided to beat slower than most! If the medical profession are puzzled by this I think I am more so!!! Some days I can handle my thoughts  and stay on top of my emotions, other days I seem to crumble and wonder what else will go wrong. These are the days that I allow myself to have my pity party. I do my utmost to make sure that I remain in control over the length of time I have my party as if left unchecked I could become engulfed by depression. Until the day comes that I have a diagnosis of whats happening to my ‘falling apart body’, I will laugh when I can and cry when I can!!

 

“ACCEPTANCE OF WHAT HAS HAPPENED IS THE FIRST STEP TO OVERCOMING THE CONSEQUENCES OF ANY MISFORTUNE” (William James)

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