The Spoonie Mummy

So I didn’t manage to get this one up last week.  After the unexpected hospital stay, I took some time off to recover.  Today is the second post in the blog series I am doing on conditions associated with IBD and we are looking at fistulas.

Fistulas

What are they?

A fistula is an abnormal channel or tunnel which develops in between two organs of the body.  These can occur anywhere in the body but generally involve the bowel and intestine.  They may connect two parts of the bowel together, or the bowel to the vagina, bladder or skin.  They are more common in people with Crohns rather than Colitis, as they begin when the whole lining of the bowel is inflamed.  Colitis tends not to cause inflammation of the entire lining of the bowel.

Types of fistula

The most common types of fistula associated with IBD are

Anal (also known as perianal fistulas) connect the anal canal to
the surface of the skin near the anus. These are the most common type of fistula and usually appear following an abscess
Bowel to bladder fistulas (enterovesical or colovesical fistulas)
Bowel to vagina fistulas (enterovaginal fistulas or rectovaginal fistulas)
Bowel to skin fistulas (enterocutaneous fistulas) These mostly occur on the abdomen and often develop following surgery
Bowel to bowel fistulas (enteroenteric or enterocolic fistulas) link different parts of the bowel together, bypassing some parts of the bowel

Symptoms of a fistula

Depending on the type of fistula you may experience

• Tender swelling or lump in the anus, followed by pain and irritation which is worse when you sit down, cough or poo
• A fistula can drain blood, pus or poo

From the one above my anus – leaking pus and mucus constantly so I have to wear a pad, occasionally blood or stool passes through too.  I have an abscess which drains through it which can be painful

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs Tiffany Nicole

I suffer extreme pain from the waist down. I get random bursts of bleeding which results in low iron.  I also get leakage constantly and pain on my skin

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here

• Passing air, pus or faeces through the vagina/in urine

Before I had my bag I was leaking stool from my front.  I was passing wind from there too and I ended up developing sepsis. Only symptoms I get now, 3 years on are drainage from the seton and some discomfort the odd time from the seton and then my team just change it

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy, rectovaginal fistula

I have symptoms less often in my rectovaginal fistula but it itches sometimes and occasionally leaks stool which made me panic at first, I thought I wasn’t wiping my bum properly!

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs

• Frequent UTI’s
• Frequent urge to pass urine
• Pain during intercourse
• The person may experience dehydration or malabsorption issues

How are they diagnosed?

MRI, ultrasound, CT scans and fistulography tests may be performed by your doctor.  They will want to identify the route the fistula takes and where the openings are, the number of channels there are and if there is an infection also present

My doctor had a look, the area was very red and swelled, and knew straight away what it was.  They did MRI’s too

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

I was diagnosed with a vaginal inspection, MRI scan and biopsies

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here

I was diagnosed with a colonoscopy and MRI scans

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs

For vaginal fistulas, a blue dye test can be used.  This involves the doctor inserting some blue dye into the rectum and a tampon into the vagina.  If the tampon is removed and is stained blue, it will indicate a fistula.

Doctors may also carry out a cytoscope test to view inside the bladder and urethra to identify a bowel to bladder fistula.

How are they treated?

• Antibiotics
• Azathioprine
• Biologics / Anti TNF medication
• Surgery – seton, fistulotomy
• Steroids

I’ve been on biologicals called Infliximab for two years till they stopped working and now on Vedolizumab and I’ve had a seton stitch put in place to drain it

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

Living with a fistula

Regular, warm baths can help ease the pain and discomfort.  Clean the area with warm water and a soft, disposable cloth rather than a sponge or washcloth.  Ensure the area is properly dried by patting the towel, rather than rubbing it on the area.  Avoid soaps, talcs and creams in the area unless prescribed by the doctor (they may be able to precribe a barrier cream to help protect the skin).  Wearing loose fitting clothes and cotton underwear may help.

The hardest part is where it is, I feel I smell all the time no matter how often I shower and try to keep the area clean.  Plus not many people explain it in detail like they did my stoma.  As it’s my vaginal area it can make intimacy a bit uncomfortable (luckily my partner is very supportive) and examinations from doctors as the area can be tender

Anonymous, diagnosed with UC in 2004 which changed to Crohns Disease in 2015, loop ileostomy

Cushions and pillows may help when sitting down.  You can purchase memory foam or ring cushions, designed to relieve discomfort and pain.

The worst thing about having multiple fistulas is that no matter how many surgeries I have it will never go away.  I will never be rid of the pain I go through daily.  Some days and nights there is nothing I can do but lay there in pain and cry and wish they would put another seton in

Alannah, diagnosed with Crohns 2012, permanent ileostomy, ‘pelvis riddled with fistulas’ and runs a blog here

Dealing with fistulas can take its toll both mentally and physically.  Taking part in sport and swimming may be harder.  It can also affect your feelings about sex and intimacy.  Feeling depressed, frustrated and embarrassed are common.  Your IBD nurse may be the best person to talk to with the most experience of dealing with fistulas.  You may also find talking to a professional counsellor helps.  Online support groups can also be helpful, especially as you can connect with others in the same situation.

The worst thing is definitely having poo in your vagina… how do you discuss that with people?  I’ve been advised not to have a smear test because of it and although I am not sexually active if I were I’d be very concerned and embarrassed!  The abscess in my bum cheek drains and refills and when it’s full I can only lay down meaning I can’t go to work

Tiffany, Crohns diagnosed 2017, rectovaginal and perinanal fistulas, runs

I feel very lucky to not suffer from any fistulas as the people I have spoken to have shown just how hard it is to deal with what they do.  There is help and advice out there for people suffering though so please don’t feel alone.  Anybody who would like to chat or pointing in the right direction as to where they can find some help, please feel free to contact me using the contact form on the home page.  A huge thankyou to the people who have shared their experiences with me for this piece.  You can also find out lots more great information over on the CCUK page here