Hi, I’m Russell and I am 58 years old, living on the west coast of Scotland with my wife and 2 Sproodles (Springer Spaniel/Poodle Crosses). I have three grown-up children, 1 girl and 2 boys, and have recently welcomed my first grandchild, a girl, into the family.
I was diagnosed with Ulcerative Colitis at the age of 40, which wasn’t quite as big a shock as it could have been, as at the time I was working as a Cancer Planning Manager for a Health Board in Scotland, and when the UC symptoms started I thought I had colorectal cancer (even though I knew I was statistically too young).
Unlike many people experiencing these types of symptoms, I didn’t ignore them, instead I sought medical advice. Diagnosed eventually with UC, I failed to respond to medical treatment and was soon referred for surgery. I had numerous operations over the next couple of years, including the formation of a permanent ileostomy.
Around about this time I also had another major shake-up in my life; whilst in hospital I was made redundant.
I needed a new job and, fortunately, a family member was setting up a medical device company, so I started out, on an ad-hoc basis, assisting with quality and regulatory matters, which eventually became a full-time requirement.
Time passed happily along, and my wife and I travelled the world (Canada, Alaska, South Africa, Australia) now the kids were grown up.
Any medical complications I had were generally minor and I usually coped without hospital admission.
In the summer of 2019, however, I was admitted to hospital with an obstruction that proved worse than normal, and the surgeons decided to operate. Unfortunately, it went wrong, the anastomosis they created following a further resection of small intestine broke down and I got sepsis. Another operation ensued, followed by time in the High Dependency Unit. My general health declined further, and my wound broke down with the development of fistulae.
Following another obstruction a couple of months later, I was referred to the Specialist Nutrition Team at Glasgow Royal Infirmary. This team provides a holistic approach to patient care for those of us with nutrition issues. They have their own specialist surgeons, nutrition nurses, pharmacists and dieticians, and direct access to other specialist services, such as imaging and wound care.
My first outpatient appointment with the Nutrition Team became a 5-week stay in hospital as I was deemed to be on the verge of kidney failure, have liver issues and also respiratory problems (alongside the UC and the fistulae!).
I was initially given a central line to administer fluids, and this soon became parenteral nutrition when it was established that I was absorbing very little from that which I ate.
My weight had dropped from an admittedly overweight 18 ½ stone to less than 12, and the Nutrition Team surgeons wanted me as fit as possible for the forthcoming surgery to correct my fistulae.
6 months of medication and PN had me fit for what was envisaged to be major surgery. I started my career working in the operating theatres and thought I knew what to expect, but this operation turned into a mammoth event with me on the table for over 14 hours and, by the time I emerged from theatre, I only had about 1.5m of small intestine left and I had a second ileostomy to rest the new anastomosis they had created after removing a knot of intestine that resembled one of those elastic band balls. My consultant described my abdomen as “hostile” and stated that she never wished to visit it again. The operation resulted in short bowel syndrome and rapid intestinal transit. I slowly increased my loperamide and codeine to the maximum in a vain attempt to slow things down. COVID arrived and the intention to reverse the temporary ileostomy was delayed for two years.
Meanwhile, I experimented with all the different ways you can have a central line. I had four Hickmann lines (all removed following infections even though I have excellent aseptic technique – I was trained to scrub in the operating theatres and have set up aseptic cleanrooms in my current role). We think my skin has been colonised by some particularly nasty bugs! I had a couple of Peripheral Catheters as temporary solutions whilst my Hickmann’s were out of action, and now I have a Port-A-Cath which is going quite nicely (but we are only a few weeks in, so fingers crossed).
Now I am hopefully awaiting the potential adaptation of my remaining small intestine to see whether it will absorb nutrition. This will take at least 6 months and may mean I will be able to come off my parenteral nutrition. If not, we are looking at drug therapies to improve absorption and possibly even transplant surgery.
Meanwhile, I haven’t let these issues affect my life too much. I haven’t been able to work, as the PN requirements impinge too much upon the working day at present, and the ever-present threat of more surgery looms over me. But I have embarked upon a number of things to keep me occupied.
I am learning about Computer Aided Design and have a 3D printer to make my own models. With this I am making place name settings and table decorations for my daughter’s forthcoming wedding. I have turned my garage into a workshop and have been making wooden bird tables, garden furniture and toys. I am redecorating the house and have a revitalised interest in cooking. I am busier than ever.
So, my summing up is don’t let any of the barriers ill-health places in your way stop you. There are always opportunities round the corner and, in my opinion, parenteral nutrition has enabled me to do things rather than hindered me.