A massive f**k you…

This week a friend told me that someone she knew had just had a colectomy and ileostomy.  One of his ‘friends’ had this to say on the matter…

“If I had to have one of those bags I would shoot myself.”

Really? Wowzers.  Im not going to explain all the reasons that this is totally messed up so Id just like to send that person these…

queen fuck you

Love Sam xx

Everything you need to know about IBD in one handy place

Information

IBD is Inflammatory Bowel Disease and should not be confused with IBS (Irritable Bowel Syndrome) which is a completely separate condition.  The two main types of IBD are Ulcerative Colitis (UC) and Crohn’s Disease.

Ulcerative Colitis (UC) and Crohn’s Disease are chronic (ongoing) conditions, which are not infectious

The most common age for diagnosis is between 10 and 40 (although diagnosis can occur at any age)

In both UC and Crohn’s there is a higher chance of developing either illness if you have a close relative who has the condition.

UC affects up to 120,000 people in the UK, that’s about 1 in 500

Between 6,000 and 12,000 new cases are diagnosed each year
Crohns Disease affects approximately 60,000 people in the UK, that’s about 1 in 1000

Between 3,000 and 6,000 new cases are diagnosed each year

sam cleasby ulcerative colitis

UC affects the rectum and sometimes the colon (large intestine). Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. The condition varies as to how much of the colon is affected.  In addition, UC can cause inflammation in the eyes, skin and joints.  If the inflammation is only in the rectum it is known as proctitis

Crohn’s Disease can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon. It causes inflammation, deep ulcers and scarring to the wall of the intestine and often occurs in patches.  The main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and loss of weight. Crohn’s is sometimes associated with other inflammatory conditions affecting the joints, skin and eyes

For both illnesses the severity of the symptoms fluctuates unpredictably over time. Patients are likely to experience flare-ups in between intervals of remission or reduced symptoms.  The cause or causes have not yet been identified in either illness. Both genetic factors and environmental triggers are likely to be involved

For UC most patients will be treated with drugs, including 5-ASA therapies (eg: mesalazine) and steroids, to control or reduce the inflammation. Suppressants of the immune system (eg: azathioprine) are used to maintain remission. Some people need surgery to remove the whole of the colon if their symptoms do not respond to treatment with drugs. If the colon is removed, the small intestine leads to a stoma (opening on the abdomen or ‘tummy area’) for emptying of liquid stool (faeces). Or a replacement colon (ileo-anal pouch) is created by the surgeon reshaping the end of the small intestine

In Crohn’s the drug treatment is similar to that for Ulcerative Colitis. In addition, various antibiotics can be used; and a new range of drugs are being introduced called monoclonal antibodies (eg: infliximab). Crohn’s Disease can also be helped by special liquid feeds which rest the bowel. Surgery may be required to remove narrowed or damaged parts of the intestine.  Smoking has an adverse effect on Crohn’s Disease, so patients are discouraged from smoking

UC and Crohn’s are relapsing, remitting conditions. Most patients remain under hospital follow-up. Urgent consultation or hospital admission may be required for ‘flare-ups’.  There is no cure for UC or Crohn’s at present (except for UC, if the colon is surgically removed), but treatment can control the disease in most cases.

UC and Crohn’s can affect young people during their education or as they become established in their career. Most sufferers can be maintained in remission for most of the time and are able to lead a full working life. However, some who have severe disease do not achieve their educational and career potential.

This information is taken from Crohns and Colitis UK.

A stoma is an opening from either the digestive system digestive system or urinary system . This opening is the exit point for faeces or urine and is formed, surgically, to treat serious, often life threatening, diseases and medical conditions such as bowel or bladder cancer, inflammatory bowel disease (ulcerative colitis or Crohn’s Disease), diverticulitis, congenital abnormalities or injury.

There are 3 types of stoma – colostomy, ileostomy and urostomy.

• Colostomy
A colostomy is the result of an operation where part of the colon (large intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the colostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the colostomy. These appliances are usually referred to as stoma bags.
A colostomy operation might be done because a section of bowel has had to be removed due to bowel cancer, inflammatory bowel disease, or injury.

• Ileostomy
An ileostomy is the result of an operation where part of the ileum (the last section of the small intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the ileostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the ileostomy. These appliances are usually referred to as stoma bags.
An ileostomy operation is done to treat medical conditions such as bowel cancer, ulcerative colitis, Crohn’s disease, Familial Adenomatous Polyposis (FAP) or injury.

• Urostomy
A urostomy is the result of an operation to divert the flow of urine from the usual route. In most cases a urostomy is formed by a section of small bowel being removed from the digestive system, and then attached to the ureters (which are the tubes leading away from the kidneys).  This section of bowel is then brought out onto the surface on the abdomen to form a urostomy.
The urine will then flow from the kidneys, along the ureters, through the section of bowel and out of the urostomy.  As it is passed from the urostomy the urine is collected in an appliance that is worn on the abdomen, over the urostomy. These appliances are usually referred to as stoma bags.
A urostomy operation is done when the bladder has to be removed, or bypassed, due to cancer, congenital or neurological disorders or injury.

This information is taken from Ostomy Lifestyle.

Links

A list of places you can get help and support with Ulcerative Colitis and Crohn’s.  Remember that your first port of call for advice should be your Specialised IBD nurse, consultant or GP.  The internet has a wealth of information but don’t be an ass about it – ask the experts!!

http://www.ulcerativecolitis.org.uk/  Ulcerative Colitis Support and forum

http://www.crohnsandcolitis.org.uk – Crohn’s and Colitis UK aims to improve life for everyone affected by Inflammatory Bowel Disease (IBD), the most common forms being Crohn’s Disease and Ulcerative Colitis.

http://www.meandibd.org/ – Support for young people under 25 with IBD

0845 130 3344 – Crohns and Colitis Support line

http://www.inflamed-and-untamed.com/ – American IBD support blog

Disability Benefits advice – These guides have been specially written for people who have IBD and will help you through the minefield of applying for support.

Radar National Key Scheme – You may not be aware that you can purchase a disabled loo key along with a guide to over 9000 toilets in the UK.

http://www.the-ia.org.uk/ – The ileostomy and internal pouch support group.

Its my six month no coloniversary!

Can you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six months of no farting!!

Six months ago at this time, I was waiting on my ward nil by mouth.  I had told Timm not to come in as I wanted him to take the kids to school and wanted him to be there when I woke up after the surgery.  I sat alone terrified.  I knew it was the right thing for me to do but the future seemed so frightening, so unknown.  What would life be like with a stoma? How would my family and friend react? What would my kids think?  Would I feel like less of a woman after?

All these questions circled around my mind as I lay in that hospital bed waiting for the call.  Finally I was taken down to theatre and had just the best care and support before the op, my final thoughts as I drifted off with the anaesthetic were of laying on a beach in Australia with my sister…

ulcerative colitis surgery sub total colectomy with end ileostomy

I woke in recovery, tired, in pain but relieved to be waking up.  Timm was there, he leant over me and hugged and kissed me and though I was in this entirely alien environment, it felt ok because he was there with me.  There were issues from the surgery, concern over blood tests and infection and so I spent my first night in HDU.  One small room where my bed was in the centre, I had so many wires, tubes and bandages all over me.  I had one nurse all through the night who watched over me and kept checking, rechecking and checking again.  It was scary but I felt safe and that everything was going to be ok.

recovery from sub total colectomy and end ileostomy

I can’t believe that was all six months ago!  There have been ups and downs in my recovery but in the last six months I have felt better than I have in the previous ten years.  My Ulcerative Colitis has gone and I no longer live in pain and on the toilet.  For anyone going through the surgery at this time, just hold on in there, it is a hard slog but things will get better.

In the six months since my surgery I have been to Vietnam, on boat trips and cycled round a Vietnamese island, I have snorkelled with fish and rays in Australia and hiked the Blue Mountains.  I have gained an enormous respect for my body and my confidence has gone through the roof.  I’ve realised who my true friends and family are and seen the best in human nature in those around me, I have been supported by the kindness of others and Ive helped people going through life problems by blogging my journey so far.  I have had a realisation of the frailty and briefness of life and it has made me want to do all those things that I dream about, in my work life, home life and with Timm.  It’s made me braver, the things that scared me before suddenly seem so small and easily overcome, after all I had an organ removed and have marched on from it so how can anything else stop me?

Who knows where the next six months will take me.  Despite a great recovery so far I am struggling at the moment with a hernia behind my stoma, I do feel like this week has put me a couple of steps back in my recovery.  This has hit me emotionally as well as physically, Im frustrated that Im back on bed rest and need to learn the best way to deal with this hernia and the issues around it.

Im planning my pouch surgery with my consultant, Im also moving house, starting a course to improve my writing skills and renewing my wedding vows!  All this plus work, running our photography business, a summer tour with arts group Responsible Fishing and raising three kids!  It will be a busy year and Im sure there will be ups and downs but in the words of a true Sheffielder, it’ll be reight….

So Happy Six Month No Coloniversary to me!!

no coloniversary

Love Sam xx