Looking for ostomy education & related topics, helpful hints & real life experiences? Look no further! Browse our blog for support!

My J Pouch Story

Having a J Pouch can be the result of a bowel condition such as Colitis, Cancer or in my case Hirschsprungs Disease. If you know what a J Pouch is, it will probably be from either having one yourself or knowing someone that does. The surgery (restorative proctocolectomy), involves the removal of the entire colon and rectum. A J Pouch (ileo-anal pouch) is created from small intestine which is folded up along side itself giving it the ‘J’ shape. This creates a reservoir at the base of the ‘J’ for stool to collect. The bottom of it is attached to the edge of the anus, allowing the patient to release stool. This may need multiple surgeries, one to form the J...

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Hirschsprungs Disease Awareness

When you think of reasons for a stoma bag what comes to mind? IBD, Crohn’s or Colitis are some of the first, but have you heard of Hirschsprungs Disease? Presenting in 1 in 5000 babies a year in the UK, this rare bowel disease is a birth defect that can occur with no family history of the disease. The nerve cells that line the intestines that are needed to move stool along into the rectum for toileting (known as ganglion cells), are not present. Your intestines should rhythmically move stool along in a wave-like contraction which when failing to do so cause tummy distention and constipation. Some of the first tell tale signs that I knew my little boy had...

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Preventing & Solving Peristomal Skin Problems

Having a stoma comes with its own ups and downs. Many of us have different experiences however I can imagine most of us experience the same problem with having a stoma – the horrible red, itchy and/or sore skin around the stoma (known as Peristomal Skin) Peristomal skin problems are usually very common however these are not normal, but the good news is that these can be resolved. As the saying goes, prevention is better than the cure, but if you notice any bumps, discolouration, red or purple patches in the peristomal area and you skin is sore, itchy, or painful, then this may be a sign you have a peristomal skin problem. If you notice any of these symptoms,...

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Hiking with my ileostomy

I have always been one of those people that adores the great outdoors but not so fond of just sitting about in the garden I need to be doing something outside. Due to my multiple chronic health conditions I always had some anxiety in the back of my head regarding solo treks; this year I decided to break that fear and go off by myself, don’t get me wrong having Kobe helps plus the odd friend who will join me on occasion too. Having an ileostomy certainly hasn’t stopped me from going off and enjoying myself.

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Lignocade Infusion During A Pandemic

On the 1st of October I went in for my lignocade infusion to help with multiple conditions I have that cause me chronic and total body pain. When I had originally got the appointment the hospital I would be receiving treatment; at had no covid patients and I was relieved. Then the week of the appointment the hospital had a t least 25 patients and the anxiety really started to set in. I have friends that work on wards in the sister hospital letting me know they were covid free if I could swap to that one. In reality I wouldn’t have been able to get Ra-Ra to school and Button to nursery then drive 20 miles to the hospital...

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Leaks That Stay Contained

This post has an image of a naked stoma surrounded by output. I wouldn’t be doing my role as an advocate any good if I didn’t talk about leaks that stay contained. These happen to many ostomates and affect me probably the same as an “explosion” leak. Leaks either way they happen can be incredibly upsetting to the person experiencing it. The leaks that explode out from underneath the baseplate are ones you have to think fast before you need to wash more than just your clothes. The contained leaks are the slow burners as to speak. These ones are the ones that do the most damage to your skin. The ones that start with a sharp itch, but sometimes its...

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Good Days & Bad Days

Naked stoma in this post. Last week I spoke about some of the struggles I had been having with regards to my ileostomy and I try to talk about the good and the bad. Sometimes I hate my stoma. Actually scratch that I hate the things that make life with a stoma more difficult. Like hypermobile Ehlers Danlos Syndrome (hEDS) and eczema. – with the hypermobile Ehlers-Danlos Syndrome my stoma has started to fall in on its self; which is easier to deal with than a prolapse or at least I think so. But it allows leaks to happen as there is now a gap between my skin and the bag.– the eczema often ends up in me scratching my bag off....

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Stoma Struggles

Recently I have faced quite a few struggles with my ileostomy and they have taken quite the toll on my mental health; this comes after having my ostomy for over 4 years and having little to no issues prior to this. Some of the struggles I have been experiencing are: leaks – I do suffer with leaks but these have been happening far more often than usual sore peristomal skin itching increase in retraction swelling blockages soreness stoma cramping – this is probably my bowel kinking or becoming caught on adhesions and my goodness it is some of the most debilitating pain I have ever been in! To an extent I have experienced all of these before but not to this...

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‘A Stoma Patient’s Right To Die’ – The importance of emotional support within a patient’s stoma journey

You may, or may not, have seen the recent news last week regarding a male Inflammatory Bowel Disease patient, aged 34, at Barnsley hospital being given the right to die because he didn’t want to live with a permanent stoma bag. Before I go any further with this blog post, I am going to say that I am in no way making this about me and taking anything away from the man’s struggles & the struggles of his loved ones having to see him get to this dark place in his life. I am merely expressing my opinion & in no way is my opinion fact. It is what I feel and I believe we should all have the right...

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