Back in 2009 after having complained of severe pain, bleeding, constant infections, sickness, fatigue and losing weight. I was diagnosed with Ulcerative Colitis a type of inflammatory bowel disease (IBD) whilst I was nursing. Unfortunately for me it hadn’t been picked up by my GP at first and it was only because I moved area and joined a new doctors surgery that they felt the need to investigate further involving a colonoscopy.
For many years I was on steroids and regularly admitted for treatment, eventually costing me my job at the hospital, relationships and friends. Eventually I was referred to University college London hospital and in September 2011 I was having my large intestine removed leaving me with an ileostomy bag. I coped well until I had a blockage and needed a re-site of my stoma to the other side of my abdomen in January 2012. This wasn’t as straight forward as it left me with adhesions inside and I also developed cellulitis around the stoma site putting my recovery time back. I was told to prepare for the worse case scenario of never being able to have my own children, and in fact I suffered a miscarriage before the bag and ectopic pregnancy with the bag.
However, my partner and I managed to conceive in 2014 and we welcomed our beautiful daughter in the October via caesarean section at the same hospital with the obs team and gastro team present. As I’m auto immune I did encounter some infections during the pregnancy needing antibiotics for urinary tract infections (UTI), having to have extra vitamins and iron due to the lack of absorption. I was scanned monthly and had more checks than normal to make sure that our baby was forming well and not causing me any trouble either. I had the support of my stoma nurse at my local hospital to fit me with different or larger holed bags as my abdomen grew. Strangely I encountered less leaks from my bag as my tummy became smoother and stretched. I had nobody else to compare my pregnancy to and I had no friends with a colostomy or ileostomy, so I was researching online mostly to see what other mums had gone through, it was quite sparse information! Originally, I was under our local hospital where the obs team had no full medical history and so they believed that it was best for me to deliver having a natural vaginal birth. I had to state that when I had my surgeries my gastro surgeons had repeatedly told me and written in my notes that a vaginal birth would lead to more trauma if I was to ever be ‘reconnected’ to the rectum again and that I probably wouldn’t be able to push due to lack of sensation and urinary incontinence. When my London hospital heard of this they asked for me to have our baby with them where I could be monitored by both obstetrician and gastroenterology team. Two weeks before our little girl arrived I was vaginal bleeding and having contractions, but I was being sent home to await the planned caesarean, needless to say one of the country’s top obstetricians was not amused that I hadn’t been admitted earlier. Our bundle was safe but for 3 week she was under scrutiny and more tests to check for syndromes, brain problems and still shows a permanent reminder of a squashed ear canal and cartilage due to the trauma.
Once our daughter was home my abdomen took a while to get its feeling back due to the C-section scar and I finally returned to smaller flange bags. I couldn’t feel my bag leaking of a night due to the nerve damage along the pubic line, but as I was up with my baby day and night I could check and change it as soon as I noticed to stop it from burning the skin. It didn’t help that I was haemorrhaging for 6 weeks after birth. Wearing comfortable wasted trousers helped during the first few weeks at home and thanks to breast feeding I was able to wear my pre-pregnancy clothes again. I found wearing support garments that hold you in wasn’t a great idea as sometime my existing small intestine would kink like a hose trying to return to normal or from the new adhesions and the back up of stool would be pressurised from the support garment. Plus, with being unable to determine if I leaked or not it just added to my anxiety and embarrassment.
We were privileged to have a second daughter in 2016 who was a much easier pregnancy in the sense of reoccurring infections but by my third trimester I struggled with walking and back pain. I thought perhaps the back pain was Symphysis pubis dysfunction (SPD) or sciatica. I had to walk less and rest more as just venturing in the car was difficult and painful. Once again, the bags stayed on well but I had a few days of a swollen stoma in the later part of the pregnancy, as if something was causing it to turn from healthy red in colour purple and swell. It became quite painful and tender around it even though you don’t have nerves or feeling in the intestine. I was having to cut a bag every few hours larger than the last to cope with it swelling in size. After a few days of changing my diet to soft foods and plenty of liquids it did resume back to its neat and fresh red button like state, so now I can only assume it was again another kink or baby pushing against it from the other side. The worse part was sitting down to breast feed. I found that when I was sat down to feed the pressure from the waste and warmth of the cuddles caused the bags to leak or lose their stick ending in ‘pancaking’. There was many of tearful moments having to clean up, change myself and baby whilst she was still crying with hunger mid feed and I was feeling worthless.
After the birth in the summer months I was still struggling with the back pain believing it was SPD and being told that it would eventually ‘wear off’. With no core strength since the four abdominal surgeries it was getting worse. Physio and pain killers wasn’t cutting it and I was unable to put my daughter into her cot or car seat. With an MRI a few months on I was diagnosed with a dehydrated spine, defective disc’s and Sacroiliitis. There’s not much I can really do other than strengthen my back and limbs to work harder to support my non-existing core, but when you suffer from other debilitating illnesses it makes it virtually impossible. Last November I had surgery again to remove my rectum and anus as that too had become diseased, painful and was causing such discomfort from leaking. The recovery for this operation is around six months due to the healing conditions and its placement within anatomy.
Both daughters of mine are understanding of my needs. I don’t hide my colostomy bag, I explain and show them that mummy is quite unique and praise them for being the best nurses when I’m struggling. I would urge soon to be mothers with stomas to network via their stoma nurse team or through groups on Facebook, IBD sites, colostomy/ileostomy sites and find other mothers to engage with for support. Sometimes it is too easy to fall into the lonely embarrassed trap again, but you must remember to keep yourself well mentally and physically. Surround yourself with support during your pregnancy so that you have a platform to aid you during and after. Don’t hesitate to seek professional help if you have any concerns for your stoma or baby.
Written by Justine G