Let’s Be OstoMATES – Louise’s Story

colostomy and urostomy lets be ostomates

Today’s journey to having a stoma doesn’t include one stoma but two! Louise is what is known in the ostomy community as a “double bagger” I have heard many lovely things about Louise from fellow double bagger Rachel who has an ileostomy and a urostomy. They both run the Facebook group for double baggers (specifically double baggers and those who may have to have two in the near future I believe) which you can find here.

I remember sitting in my colorectal surgeons office expecting him to say we need to do another anterior and posterior repair of vaginal/bowel wall repair (It would have been the fourth!) when the word “colostomy” was uttered. My face must of expressed my fears! He continued saying “Oh don’t worry! I have lots of celebrities and sports women who have colostomies and you would never know looking at them! They wear short tight clothes and you would never know!” I left his office with a date for 2 weeks later for my operation. Had I not been a nurse I think I would of thrown up.

How did it get to that point you may ask? I was a nurse, mother and wife whilst nursing I had a back injury soon after the birth of my son who was my second child. My previous gynae issues got worse I started having bladder and kidney infections, pain and heavy bleeding. I later found out after many hospital visits, scans and a laparoscopy that I had Endometriosis and Adenomyosis (It is where the lining of the womb doesn’t go back normally after childbirth and can push through to the outside of the womb. Causing pain and heavy bleeding).

In the following four years of illness, tests and eventual diagnosis I then spent years trying every available treatment in the late 90’s even to the point of having painful injections to put me through a menopause aged 26. It was one of the hardest years of my life as it affected me badly mentally, physically and emotionally. Eventually I had a hysterectomy, but because I was 27 years old the surgeon refused to take my ovaries. Otherwise he said I would be reliant on oestrogen medications like HRT or I faced going through the menopause at 27 years old which would lead to other medical issues. During the following 3 years I continued to have extreme pain as my ovaries were still producing oestrogen which fed the Endometriosis this meant the endometrial lining was still bleeding and the scarring which had formed on my bladder and bowel grew and continued to grow and continued to damage my bladder and bowel.

During this time my back pain became chronic due to disintegrating discs from a missed scoliosis of my spine and neck. Thus I was taking morphine which caused constipation due to having a slow, long bowel. I then had three repairs to the vaginal/bowel wall due to mechanical incontinence of the bowel. The Endometriosis scarring had affected the nerves in the bladder and bowel also I was then diagnosed with idiopathic autoimmune disease as I had developed pernicious anaemia, under active thyroid, raynaud’s syndrome, pancreatitis, asthma and the Endometriosis and Adenomyosis are also auto immune diseases. The Drs realised my bodies immune system was attacking itself it would later attack my heart, lungs, stomach, pancreas and liver.

It was at this point the colostomy was the only option as the surgeon could no longer keep repairing the damaged bowel. I had the colostomy done laparoscopically the recovery at first was quick and the stoma nurses visited the ward and showed me how to change my bags the changing of bags etc I got used to quickly. My bowel took a while to get working but did start after 3 weeks. I did have issues with finding the right bags as my skin doesn’t like the glue but through trial and error I found the best bags for me.

During this time I had continued to have bladder issues due to interstitial cystitis in my bladder and as the nerve damage progressed I was losing more and more function of my bladder so I had a Supra Pubic Catheter (SPC) fitted and later I went back to a traditional catheter after trying medication, bladder stretches and other treatments such as stimulation. My body started rejecting the catheter and I colonised Psuedonomas and Ecoli bacteria which meant my bladder had permanent urine infections. The catheter would attach itself to the bladder wall causing bleeding and pain every time it had to be changed. It was decided I should have a Urostomy done as my bladder was permanently infected and the interstitial cystitis was causing so much pain and bleeding I was going to the toilet about every 10-15 minutes and the constant feeling of needing to pee was there 24 hours a day sometimes I could barely stand up and eventually I started leaking urine that was bypassing the catheter.

So within 12 months I had a Colostomy and a Urostomy. The operation was hard going I woke up in intensive care and was there a week due to issues during the operation. After four weeks my bowel hadn’t started working so I had to have a liquid feed called TPN. At first this was fine but due to Dr error I ended up back in intensive care with a pneumothorax (collapsed lung). After a week in intensive care I made it back to the ward and due to my stomach and bowel not working properly I ended up being fed through a tube in my nose for nearly a year. My bowel eventually woke up and started working after 6 weeks, my stomach took my longer and I went home after 7 weeks.

I recovered slowly after the operation as the Dr error meant I needed medication through a Hickman line (a tube medication goes through direct into bloodstream). Due to my skin issues it took a long time to find the right bag combination for my skin. I now keep a diary of the different bags I have tried and when I have tried them as over time you forget which bags you have tried. Over time the companies change the bag designs and from time to time they change the glue recipe as and when they develop new glues. It may sound funny but the hardest thing with a Urostomy is the urine leaking from the bag because urine is a thin liquid and has ammonia in it this can cause the glues to fail thus you end up with a leak from the base plate.

I now have a good set up I have found the bags which are right for my situation which means I get two different types of bags from two different companies. I also order a couple of different types of bags for my colostomy depending on the type of stool and the amount of stool being produced dictates which bag I use. I prefer open bags even though I have a colostomy and I use a two piece system. Whereas I use a one piece for my Urostomy. I am an avid sample tester as I often say I wish I could take different elements from different bags and have my own personal perfect bag! Having a Colostomy and a Urostomy is not always easy, body image can be difficult and am very aware when buying clothes that what I wear covers and hide my bags. My marriage broke up after 26 years one of the things he said was about my body changes meaning the bags and the issues surrounding them he couldn’t deal with. That took time to come to terms with but that would not stop me from having a relationship with another caring man. They are out there I am told!

Having a normal life is totally possible I carry my emergency packs in case of leaks when out but life is definitely better now I have a good system in place. I do get phantom pain and leaking from bladder from time to time as I have residue in bladder from infections but I am having small operation to clear my bladder out and clean it. I also get phantom bowel urges but they do subside after a while and sometimes I have to sit on the loo to ease them. Having said that I consider my life better with my bags than I had before. Having the bags certainly isn’t something I would allow to hold me back! Life is too short and too good my Nan used to say if you don’t have bad days you would never good ones to compare it with!

Thank you Louise for your story and all your hard work you do raising awareness for double baggers and those with a urostomy.