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Let’s talk about Stomas!!

Over the last few years, something amazing has happened…

Brave ostomates (people with an ostomy bag) have been proudly baring all with their stoma bags on show in the media and the general public. As a community, over the last few years more and more awareness campaigns have been orchestrated to break stoma stigma and raise awareness that even with a stoma bag we are all beautiful, sexy and warriors of our individual diseases!

However are you aware of the different types of stomas?

To help navigate through the different types of stomas here is a comprehensive guide in detail and at the ending touching on my story briefly!

Colostomy

A colostomy is a surgical procedure during which the large intestine or colon is cut and brought to the surface of the abdominal wall. During the procedure, one end of the colon is diverted through an incision in the abdominal wall to create a stoma. A stoma is an opening in the skin where a pouch for collecting faeces is attached.

A colostomy can be formed from any part of the colon depending on the underlying condition:

  • Ascending colostomy – this is close to the small intestine (ileum) and not much large intestine is left to absorb nutrients so output may be loose.
  • Transverse colostomy – is created in the transverse colon and the stoma is normally formed in the upper abdomen, either in the middle or a little to the right side of the body. The output may vary depending on how far the opening is away from the small intestine.
  • Descending colostomy – This is the most common type of colostomy and is formed in the descending colon which is further down the digestive tract the output is likely to be semi-solid to firm with low digestive enzyme content which can irritate the skin.
  • A sigmoid colostomy is located in the sigmoid colon nearly at the end of the digestive tract and again output is semi-solid to firm.
  • Double Barrel wet colostomy – this is quite rare and is usually for patients with cancer that has involved the bladder and bowel and the ureters are attached to a colostomy bag so the output is a mixture of faces and urine. This procedure reduces the tome for urinary and faecal diversion.

Ileostomy

An ileostomy is a surgical procedure which usually involves the end of the ileum (the lowest part of the small intestine) is brought through the opening to form a stoma, usually on the lower right side of the abdomen. Ileostomy surgery may be necessary when the entire large intestine needs to be removed, placing the stoma higher up in the digestive tract. The output from an ileostomy is continuous due to the shortened intestinal tract and soft, wet and less digested compared to a colostomy. The output will also contain high levels of rich digestive enzymes which can cause the skin some irritation.

  • End Ileostomy is usually known as a permanent stoma and is where the end of the ileum is brought out through the abdomen. In most cases, with an end ileostomy, the colon and rectum may be partially or completely removed which involves the back passage being sewn up. However, some people can have an end ileostomy with their rectum in situ.
  • Loop ileostomy – usually known as a temporary stoma is where a loop f the small intestine is lifted through the abdomen to form the stoma. In loop ileostomies, the colon and rectum may not be removed and in the future could allow possible reattachment.
  • Continent ileostomy (Kock pouch) – where a loop of small intestine is constructed into a pouch within the abdominal cavity. Waste from the small intestine collects inside the Kock pouch and a small catheter is inserted to drain at a convenient time.

Jjunostomy

This is quite unusual but does occur. This is similar to the ileostomy but the surgeon will create a stoma higher up in the jejunum of the small intestine. The output is a lot higher and a lot more watery because of where it is in the small intestine. Usually, jejuostomy is formed because of further medical conditions and complications and there may be a few issues with leaks to start with and skin irritation.

Also, you can have a jejuna feeding tube which is different to a jejunostomy. Jejunostomy produces output and a jejuna feeding tube is where feed is attached.

Urostomy

A urostomy is a surgical procedure that creates a stoma that re-directs urine away from the bladder. The bladder may be removed completely (cystectomy) or diverted from due to cancer, birth defects, fowlers syndrome, Interstitial cystitis, overactive bladder, neurological conditions, trauma, radiation damage.

There are quite a few different urinary diversions available and I will cover them here.

  • Ileal conduit – The most common type of urostomy where a conduit is created from the small intestine. One end of the conduit is connected to both ureters and the other forms the stoma. The conduit has no storage capacity and is not considered a substitute bladder because it cannot hold volume, the urine flows continually out of the stoma.
  • Continent urostomy – also known as an Indiana pouch, kick pouch and a mitrofanoff comes under this, is an internal pouch constructed just under the skin from a piece of small intestine or bowel connected to the ureters (mitrofanoff usually use the appendix if available). The urine is drained at intervals throughout the day by pushing a catheter through the stoma into the pouch. The output can be contained and no need for an external pouch to be used every day so this is a continent urostomy.
  • Cutaneous Ureterostomy – The surgeon detaches one of both Ureters and attaches them directly to abdominal wall forming a tiny stoma where pouches are needed. Quite rare but this does happen especially if for some reason the bowel cannot be used. AN opening may be placed on one side or on both sides this depends on your medical surgery and your surgeon.
  • Neo-Bladder – where a surgeon creates an internal reservoir from bowel that connects to the urethra. Urine empties from the reservoir in a more natural process. However, the neo-bladder does not function as well as a natural bladder and in some cases, a catheter must be inserted through the urethra to completely empty the reservoir. This does work for some people but there may be a higher chance of incontinence and only certain people would qualify for this procedure

As you can see there is more to the stoma family than the simple ‘colostomy’. I have an ileostomy and a urostomy (ileal conduit) but still, people assume they are colostomies.

A little bit about me

I have been ill now for 10 years where my bladder and bowel stopped functioning. After a long time, I was eventually diagnosed with Autonomic Neuropathy in the form of Pure Autonomic Failure. In 2012 I had to have an ileostomy because my bowel would not empty at all without using a medical Peristeen irrigation System. When I first had this stoma I was not in a good place and I did struggle accepting it and my ‘new normal’. It didn’t help that I had a supra-pubic catheter at the time which was causing me horrific problems. Eventually, that came to a head in 2015 a routine cystoscopy revealed my bladder was extremely small, damaged and a biopsy revealed the cells had started to mutate, so within 2 weeks my bladder was removed and an ileal conduit was formed. I had a long 3 months stay due to some complications but when I left I felt strong, empowered and I knew my life would be better.

I am what the stoma world would call as a ‘double bagger’ and I cannot tell you the opportunities my 2 buddies have brought me; friends who also have stomas, an amazing man that has an ileostomy and starting a blog (http://rocking2stomas.co.uk/blog) to document my journey and help raise more urostomy awareness. It has not been easy and is a journey of acceptance which takes time but now I can truly see what a ‘gift’ my stoma bags are today.

If anybody reading this has just had a stoma and is struggling then please hang on in there and reach out to somebody else who has a stoma. Having that identification is priceless and will help. Subsequently, you can follow me on… Facebook Rocking2stomas, Twitter @rocking2stomas, Instagram – rocking2stomas.

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Let’s talk about it!

I wonder what makes it OK to talk openly about breast cancer yet we still find it awkward to discuss problems with our downstairs department?

We all go a bit embarrassed, give it a silly name and laugh it all off – foof, privates, mini, Mary – God forbid we use the medical V word. Yet suffering problems in THAT area is just as valid and distressing as suffering problems in any other part of the body. So why do we all blush and stay hush? Let’s get it out there. Not literally. But let‘s talk about life’s leaks and bulges. In other words, incontinence or prolapse.

Tender moment between a mother and her 11 days old newborn baby

Hell it’s one crazy unattractive subject – but a third of women suffer at some point in their lives. Childbirth is superb at messing up our down belows but is it any wonder? Babies are big in relative terms to a body part that generally speaking isn’t.

Glamorous gorgeous types have spoken publically about it in the last year.

 

Actress Kate Winslet laughed on the Graham Norton show as rapper 50 Cent sat in awe when he learnt that three sneezes in a row can trigger an oops moment. Athlete Denise Lewis, TV host Nadia Sawalha and Ronnie Wood’s ex wife Jo have all openly told how they have taken steps to fix it. The latest is Daniella Westbrook who has been criticised for going public about a revolutionary laser procedure to fix her downstairs. Instead of questioning her motives maybe we should praise her for being brave enough to be so open and for bringing the subject up in a light hearted and fun way. OK so maybe you think she is milking another publicity opportunity – but for me – somebody who campaigns to raise awareness about the dangers of an operation using a mesh bladder sling to fix incontinence – it is another perfect opportunity to get the discussion going. It means the serious issue of incontinence can be brought out into the open and it means women too shy to talk about it can at least read the stories and go to Google to look at how they can fix it.

For most mums who suffer we laugh it off – squeeze before we sneeze or cross our legs if we laugh too hard, but the truth is it is an annoying problem. It can easily be fixed with good pelvic floor therapy available for free on the NHS. All you have to do is ask your GP
Sadly in the UK this is not given much publicity at the new baby stage and women just put up and shut up until in some cases it gets progressively worse as the years go on.

In France 20 physio sessions are offered as standard to new mums. So why not give it a go? What have you got to lose? If it doesn’t work there are natural surgical solutions like a sling made out of your own tissue or a Burch colposupension which is like a hitch and stitch.

As somebody who has run Sling The Mesh campaign for 18 months my advice is steer well clear of a day case op called the TVT or TVTO which uses a mesh tape sling to hoist things up. For some women it can work wonders – but for others it can cause life altering risks of chronic pain in the pelvis, groin and vagina which has left women losing their sex lives. It can cause lifelong UTIs, problems going to the toilet and allergic reactions leading to inflammation in the stomach or triggering auto immune diseases.

You might be one of the lucky ones – but you might not. Do you really want to play Russian roulette with your health? Some women are fine for years and then, as if from nowhere, experience problems up to 14 years down the line. Try natural solutions and say no to mesh surgery.

Yes incontinence and prolapse are embarrassing and distressing – but a mesh operation could just make it all so much worse.

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