Guest Writer Rachel - Part 2

Here's part 2 of Rachel's story (aka The Stoma Bag Lady) 

The next morning a stoma nurse visited me. She was a lovely lady but from the moment she arrived she must have realised that I was petrified and that her job was not going to be in anyway easy. Every kind word that came out of her mouth was like a death sentence, in my mind she was the executioner preparing me for the march to the gallows and placing the hood over my head. I let her draw on me…draw large circles with x’s in them on my flat stomach with a permanent marker. She said she had positioned them so I would be able to wear my favourite jeans without the bag getting in the way, but all I could see where these two big black circles with an X marks the spot marking where my bikini ready body would be defiled by a bag. That day, when she left, I cried more than I have ever cried in my life and will hopefully ever cry again.

Ok, so that was all rather depressing, but that was not the last time I would be caught in the surgeon’s snare and narrowly avoid their table by the skin of my teeth. It happened every time I went into hospital, and it quickly became I running joke that I was ‘the girl that got away’ among the circles of surgeons who visited me. I lived in fear that they would come and cut me open, and there were many close shaves, but this time, 12-years since I was diagnosed with Crohns, I finally decided that I no longer wanted to spend all my life on the toilet; living with crippling pain; passing out in bathrooms; being so thin I might snap in half; and spending more time living in a hospital than my own flat. I also never wanted to have an accident at work, or while walking to the chip shop ever ever again.

I was part forced, part given the choice to have my bowel removed. And, I’m proud to say that for once I let my fear of the surgeon’s knife and my disgust at the idea of a stoma not cloud my judgement. I decided that for the 12 years I had battled with Crohns /UC (they still haven’t decided which one I have – ridiculous I know) I had not really been living at all, more like just dealing and coping with every day as it came. I realised I would rather face the knife in the hope that removing the destroyed part of my colon would stop my illness in its stride, than facing a second more of that blinding pain which often left me gasping for breath, passing out in bathrooms and collapsing into my bed with exhaustion and extreme fatigue.

Now, nine-weeks-after my bowel was torn from my tummy leaving me with my new found fr-enemy Winnie, I can hand on heart say I feel the best I have ever felt for a long time. I wouldn’t go as far as to say that I feel well (what is well to a Crohns patient), but I feel alive. I would describe it as a feeling of being free, lighter in some way, and the pain, which so often crippled me in my stride, has vanished, hopefully forever – well we will see.

I won’t lie it has not all been plain sailing, I have had ups and downs since the operation. There were complications that were horrendous and terrifying. My epidural was put in wrongly and my leg wouldn’t move leaving me seriously fearing I would be paralysed, and a week after the surgery date my wound suddenly burst open as I emptied Winnie in the middle of the night, leaving me screaming ‘my guts are falling out’ and crying hysterically as nurses tried to reassure me what was happening was perfectly normal. I have developed a hernia, wear a second stoma bag where my remaining colon is poking out of my wound (Oscar) and have developed a fistula….but my body wouldn’t be my body without some dramatic complications right?

But all in all I am happy. I have no regrets. Me and Winnie have our good and bad days. She often disagrees with what I eat, dislikes my favourite food, and farts and trumps loudly at completely inappropriate times. I think of having Winnie as like having a newborn baby – she needs feeding, changing, cuddling and protecting and will always wake up at the most inconvenient and inappropriate moments and start crying for help.

For the first couple of weeks I felt depressed, downright disgusting and sorry for myself. But after just over a month I decided to take off the sweat pants and baggy tops, get my hair cut and put on some new clothes and embrace my bag of well crap and leap into a life filled with adventure and new experiences. So I started my Stoma Bag Challenge, and basically, decided to start living my life and doing the things I had always wanted to do but had never been brave enough or able to do because of my illness, which (as much as I always said it didn’t) ruled my life.

So the idea is I have to do 101 challenges with my Stoma Bag…that doesn’t mean Winnie has to do them herself, but I have to do each of these challenges and she has to (obviously because she is attached to me) come along for the ride. We have just five years to finish this extensive list, why, because I will be 30 and 30 is the stereotypical movie / trashy book landmark for any wish list and I don’t want this to be a morbid ‘do before you die’ bucket list.

So, its around four weeks into the challenge and I have started a blog and, yes argh, a vblog, to share my story and hopefully help spread awareness of IBD help others not to feel alone or live in crippling fear of surgery and the embarrassment of Crohns disease. I have been overwhelmed by the response from my family, friends and the world about my blog, I have been approached to do magazine articles, be interviewed for books and have been called an inspiration – one young girl even said she felt she would now be able to face surgery after reading my rambling tales of my challenges with my bag, to which I can only respond SOB!!!

Why am I doing these challenges, some of which are insane and impossible (jumping out of a plane, well WHY THE HELL NOT!! No seriously, all I want is to show others facing surgery or who have had it that you are not alone and that just because you have a Winnie (or an Oscar or Priscilla) or whatever silly name you give your bag, that your life isn’t over – in fact embrace it and you might realize that you are finally living for the first time!

As my friend said, “it’s just a bag of shit, that’s all”…and that’s exactly what it is, my literally attached to me “friend” Winnie is a big bag of poo! I have realized if I don’t see the funny side when it farts and makes weird noises at the most embarrassing and intimate moments I will spend the rest of my life disgusted with myself.

Find out what the challenges are and watch a video from Rachel tomorrow in Part 3.

You can follow Rachel on Twitter @thestomabaglady and at her blog http://adventuresofthebaglady.wordpress.com

Colitis and Surgery Part 3 - Risks, Advantages, Stomas and Laparoscopy

An ileostomy showing stoma opening

This information is about the types of surgery that may be needed in the treatment of Ulcerative Colitis (UC). You may also find other Crohn’s and Colitis UK information useful, especially our booklets Ulcerative Colitis and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk.

Stomas

As described above, sometimes in surgery for Ulcerative Colitis the intestine is brought to the surface of the abdomen and an opening is made so that digestive waste products (liquid or faeces) drain into a bag, rather than through the anus. If the part of the intestine brought to the surface is the ileum (the lower end of the small intestine), this procedure, and the end of the intestine connected to the opening, is known as an ileostomy. If the large intestine or colon is brought to the surface and connected in a similar way, it is a colostomy. Both types of opening are also called stomas.

2 piece stoma bag
1 piece bags are available

Most stomas are about the size of a 50p piece and pinkish red in colour. Because the contents of the small bowel are liquid and might irritate the skin, an ileostomy usually has a short spout of tissue, about 2-3cm in length. Depending on the type of stoma bag used, ileostomy bags usually have to be emptied four to six times a day and changed about twice a week. Colostomies pass firmer stools, so colostomy bags are usually emptied slightly less frequently (about one to three times a day), and usually need to be changed each time.

Laparoscopy

Some of the operations outlined above, including pouch surgery, may now be carried out using laparoscopy (minimally invasive surgery). This is also known as ‘keyhole surgery’. Instead of making one large opening in the wall of the abdomen, the surgeon makes four or five small incisions (cuts) each only about 1cm (half an inch) long. Small tubes are passed through these incisions and a harmless gas is pumped in to inflate the abdomen slightly and give the surgeon more space. A laparoscope, a thin tube containing a light and a camera, is used to relay images of the inside of the abdomen to a television monitor in the operating theatre. Small surgical instruments can also be passed through the incisions and guided to the right place using the view from the laparoscope. If a section of the intestine needs to be removed, this can be done through a separate larger incision.

Laparoscopic operations tend to take longer than ‘open’ surgery, but can have a number of advantages, such as:

• less pain after the operation
• smaller scars
• faster recovery for example, being able to eat and drink more quickly after the operation
• reduced risk of a wound infection
• a shorter stay in hospital.

However, laparoscopic surgery may not be available in all centres and may not be appropriate for some procedures, particularly if you have already had abdominal surgery.

Are there risks to surgery?

Ulcerative Colitis is a very individual condition and the risks and benefits of different types of treatment will vary from person to person. Your IBD team should be able to help you weigh up what will be best for you.
Surgery for UC, like all surgery, will carry some general risks, including those linked to having a general anaesthetic. There is also a small risk that some operations may lead to complications such as infections.

Particular operations may have other risks: for example, occasionally an anastomosis (join) or an ileo-anal pouch can develops a leak and will need further surgery. Adhesions (sticky bands of material that form as part of the healing process) can twist the intestine. These usually settle down by themselves, but sometimes need dietary treatment. If you have a pouch there is also a risk that you may develop pouchitis (inflammation of the pouch), which may need treatment with antibiotics. Your surgical team will be able to tell you more about any possible complications, how likely they are for the operation planned for you, and how they are usually treated.

What are the advantages of surgery?

Unlike Crohn’s Disease, which can recur after surgery, Ulcerative Colitis cannot recur once the colon has been removed, and so is ‘cured’ by surgery. This should mean:

• relief from pain
• relief from symptoms such as urgency and diarrhoea
• being able to stop taking drugs which may be causing side effects
• feeling able to lead a fuller life, for example being able to leave the house in a more relaxed frame of mind.

However, as above, complications do sometimes develop, and it will take time to get used to having a pouch or an ileostomy.

Coming up in Part 4 - What to expect - Before and After Surgery

Crohn's and Surgery Part 3 - Risks, Advantages, Stomas and Laparoscopy

This series of articles is about the types of surgery that may be needed in the treatment of Crohn’s Disease. You may also find other Crohn’s and Colitis UK information useful, especially our booklets, Crohn’s Disease and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk

Laparoscopy

Some of the operations outlined in Crohn's and Surgery Part 2, for example ileo-caecal resections, may now be carried out using laparoscopy (minimally invasive surgery). This is also known as ‘keyhole surgery’. Instead of making one large opening in the wall of the abdomen, the surgeon makes four or five small incisions (cuts), each only about 1cm (half an inch) long. Small tubes are passed through these incisions and a harmless gas is pumped in to inflate the abdomen slightly, and give the surgeon more space. A laparoscope, a thin tube containing a light and a camera, is used to relay images of the inside of the abdomen to a television monitor in the operating theatre. Small surgical instruments can also be passed through the incisions and guided to the right place using the view from the laparoscope. If a section of the intestine needs to be removed, this can be done through a separate larger incision.

Laparoscopic operations tend to take longer than ‘open’ surgery, but can have a number of advantages, such as:
• less pain after the operation
• smaller scars
• faster recovery for example, being able to eat and drink more quickly after the operation
• reduced risk of a wound infection
• a shorter stay in hospital.

However, laparoscopic surgery may not be available in all centres, and may not be appropriate if you have already had abdominal surgery.

Stomas

An ileostomy showing the stoma opening

As described above, sometimes in surgery for Crohn’s the intestine is brought to the surface of the abdomen
and an opening is made so that digestive waste products (liquid or faeces) drain into a bag rather than
through the anus. If the part of the intestine brought to the surface is the ileum, this procedure, and the end of the intestine connected to the opening, is known as an ileostomy. If the large intestine or colon is brought to the surface and connected in a similar way, it is a colostomy. Both types of opening are also called stomas.
Most stomas are about the size of a 50p piece, and pinkish red in colour.

Because the contents of the small bowel are liquid, and might irritate the skin, an ileostomy usually has a short spout of tissue, about 2-3cm in length. Depending on the type of stoma bag used, ileostomy bags usually have to be emptied

A 2 piece stoma bag
(1 piece also available)

four to six times a day, and changed about twice a week. Colostomies pass firmer stool, so colostomy bags are usually emptied slightly less frequently, (about one to three times a day), and may need to be changed each time.

Are there risks to surgery?

Crohn’s Disease is a very individual condition, and the risks and benefits of different types of treatment will vary from person to person. Your IBD team should be able to help you weigh up what will be best for you.
Surgery for Crohn’s, like all surgery, will carry some general risks, such as those linked to having a general anaesthetic. There is also a small risk that some operations may lead to complications such as infections. Particular operations may have other risks: for example, occasionally an anastomosis (join) leaks or the small bowel becomes obstructed. Adhesions, sticky bands of material that form as part of the healing process, can twist the intestine. These usually settle down by themselves, but sometimes need dietary treatment.

Your surgical team will be able to tell you more about complications like these, and how they are usually treated.

Because Crohn’s Disease can develop anywhere in the gut, including in previously healthy sections of the small intestine or colon, surgery cannot ‘cure’ it. So, there is always a chance that symptoms will reoccur after the operation, either close to the operation site or in another part of the gut. It may be possible to treat these symptoms with medication, but it could mean that another operation is necessary. There is some research to show that about half of those who have an ileo-colonic resection need another operation within 10 years. However, recent studies have suggested that the newer biological medical therapies may help to prevent Crohn’s recurring following surgery.

What are the advantages of surgery?

Depending on the operation, surgery can bring real benefits such as:

• relief from pain
• relief from symptoms such as diarrhoea or vomiting
• being able to reduce or even stop taking drugs which may be causing side effects
• the ability to eat a more varied diet and to gain weight more easily
• feeling able to lead a fuller life, for example being able to leave the house in a more relaxed frame of mind.

Many people have found that once they have recovered from their operation their quality of life is much improved. In one study looking at resection surgery from the patient’s point of view a majority of those interviewed said they wish they had had their operation earlier.

Coming up in Part 4 - What to Expect: Before, During and After Surgery