Donna Marie's Story
My Name is Donna Marie
I was diagnosed with ulcerative colitis age 28, previous to this I was told I had IBS. In my teens and most of my 20’s, I was very fit and sporty. I used to do a lot of sports, including surfing, scuba diving, windsurfing, sailing, canoeing, white water rafting, octopush (underwater hockey) and basketball to name a few.
I worked in a very physical job. I had my son in 2002, and this was the first time I was admitted to hospital due to ‘IBS’. No tests were ever done because the diagnosis was assumed. I had a couple of bad bouts through my 20’s but not bad enough to stop me and my active life. I fell pregnant with my daughter in 2007, at about 6 months pregnant I began bleeding heavily from my rear end and getting a lot of pain and suffering from frequent diarrhoea and urgency. I went to the GP a few times but every time he dismissed me saying I was just having pregnancy problems, and that was just my IBS and the bleeding must be piles. He refused to examine me or perform any tests. He gave me laxatives even though I told him I had diarrhoea! I went back later that week and he gave me fibergel! This continued for a couple of weeks, I was going to the toilet up to 40 times a day and was getting a lot of urgency and was getting very tired with the blood loss. 4 weeks past and I was still not getting anywhere. One day I tried getting out of bed to go to the toilet and collapsed I got rushed to hospital and was found to have lost almost 4 pints of blood and was diagnosed with UC. I spent the remainder of pregnancy in hospital though they let me home for a few days over Christmas and new year.
After new year I returned to hospital. My daughter was born on the 14th, 2 weeks early. I didn’t know I was in labour due to the pains from my UC. Labour was put down as being only 5 minutes. I was still weak after birth and my daughter was very small. I was determined to breastfeed as I had fed my son for nearly 2 years and I had no issues with my bowels during that time. I began trying to feed and express and eventually managed to feed her. As I began feeding, my disease went into remission, although in remission, I wasn’t who I used to be, I suffered with energy and still had some urgency and pain, I wasn’t working and was a stay at home mum which helped, but I felt my fitness and everything that made me, me was slipping away. I fed my daughter for 2 ½ years but with every feed dropped I got worse. My consultant joked that I was born in the wrong century as could have got a job as a wet nurse and would have been fine! A couple of weeks after my last feed I ended up back in hospital with he same problems I had first time round.
The diagnosis got changed to Crohns due to my history before diagnosis, then to indeterminate. I spent the next 2 years in and out of hospital getting blood and iron transfusions, and on high levels of steroids, which helped to ‘mask’ the problems. They tried many medications throughout this time but nothing worked, the last option tried was azaphioprine, an immuno-suppressant. This had no effect and made me feel worse and I began losing some of my hair. Due to the steroids, I had gone from size 10-12 to size 16, and I had no energy to do anything. My consultant and surgeon suggested surgery, my surgeon said I could have surgery elective, or risk becoming an emergency. I was against it at first, I had many arguments with my husband who accused me of being selfish, and how he wanted his wife back.
I met some wonderful people who broke the stigma and negativity of having a stoma, and it changed my previous thoughts on what a bag meant. I began looking forward to getting my life back! I came out of what was supposed to be major surgery with no pain, I woke up talking about food, and was up and about out of bed and updating my facebook status an hour out of theatre! When asked about my pain I asked if I could give a minus number! That evening I spent hours talking to a girl who was scared of surgery. I think when people visited they must have been thinking if I’d had surgery or not. I was out of hospital after 3 days, I’d been driving the nurses crazy! My stoma nurse said she’d not met anyone who had recovered from the surgery so quickly, especially when I told her of my plans to canoe at 6 weeks post op and soon get back to swimming!
After surgery my colon was examined and the diagnosis was changed back to UC. I found microskin bags which were perfect for my swimming and active lifestyle. Everyone was trying to pin me down and had me under house arrest! I just wanted to get up and go. Then early in 2012, almost a year after surgery, my remaining rectal stump which was left in place began to flare. Eventually it came to the point where I knew that this also had to go. This surgery was more extensive than the first, and was surrounded by stories of wounds not healing, long recoveries, and complications. I knew I was in the safe hands of the wonderful surgeon. I came out of surgery, again not using the morphine, having no pain, feeling like the surgery had not happened! The only proof that it had, was the drain in my stomach, the incisions had been well stitched and glued and were not bleeding or sore. Again, I fully was up and on my feet quickly and was home within 3 days from a surgery which is supposed to be major. I went completely back to normal with very little needed in recovery, though again I was placed on house arrest as my family know how headstrong I am. I began getting back to who I was, managed to get back to being fit and doing some sports , slowly getting there. It took a couple of years but I began working a few hours, then went part time, then going full time. I also took that time to change career, working with disabled children and adults when I had previously been a marine biologist/environmental educator. My work is not easy but is worth it. I received another blow this past few months when I was diagnosed with diabetes. Even though I have been eating well and my weight has returned to size 12. Having to put up with the accusations that it is due to poor diet and having to change my diet for diabetes rather than what I had previously been doing eating around my bag.
Eating with a stoma. Before getting my stoma, I used to cook from scratch, I used to enjoy eating but UC meant this was not possible, so I began eating only when needed. After surgery I was determined to get back to enjoying food. So much so, I woke up talking about food! Although I could now eat and was getting back to enjoying eating, eating with a stoma wasn’t fully straightforward.
It was trial and error I eat a lot of fruit and veg but after surgery found it a nightmare. I remember eating some strawberries and having a very pink acidic output. I used to love salads but these also gave very watery output. I was told all the usual stuff about what foods thicken and loosen and smell and cause blockages etc. So I began to experiment. If I’m eating a load of strawberries or other types of berry I would make sure I ate a banana too. When I have salad I try to make sure I also have a potato salad if possible. I mentally work out what a food will do and have something to balance it, it took time and effort at first but now I pretty much do it without realising, I also make sure I have fruit gums or haribo /jelly babies and eat them throughout the day. Jelly sweets and marshmallows thicken and are much better than loperamide. I love foods like nuts and mushrooms. If eating mushrooms, I cut them up small and I make sure I chew very well to make it easier for passing them.
Nuts, I don’t eat if I’m working the next day as I wear a strong support belt and nuts are like passing glass and cut the stoma. If am eating nuts I make sure I eat something else bulky around the same time to make the passing easier. I once ended up in hospital with a blockage due to eating a large bag of nuts without eating anything else! When am doing a lot of exercise, I have protein shakes to help as I have quite a fast high output so find it hard to maintain weight. I also drink a lot of fizzy pop especially if I think I’ve had too much thickening foods. I also drink a lot of isotonic sports drinks, Cordial and home made rehydration fluid because I’m very active and have a physical job, which means I get dehydrated easily. If we drink just water, because we don’t have a colon, it makes us more dehydrated by making food pass faster and washing out the salts and electrolytes we need.
I always aim to get a mushy pea / porridge type consistency. It doesn’t always work that way but I try.
I suffered a lot with self confidence when getting my stoma, my husband was very supportive. I took the surgery as an excuse to have a make over, which has helped me by gradually getting back into shape. Discovering which clothing styles worked well with a stoma, and using bands and vests helped to hide the bag. I used to always wear jeans and trousers but found due to my figure this was hard, as I have big hips, and small waist, which meant trousers were either too baggy on the waist or couldn’t get them past my hips, and hipsters showed my bag. I have at sometimes had my bag on show but I don’t always feel comfortable even though I’m not afraid to tell people I have one, so my wardrobe became full of leggings, jeggings, dresses and skirts. I have over the years managed to find some trousers that fit well but these are gold dust!
Sex wasn’t top priority as this was very painful while ill, and after surgery suffered with body issues around my bag even though my husband is very supportive. Wearing bands from Comfizz, and purchasing underwear and lingerie from vanilla blush has helped. 5 years since surgery and am only now really beginning to love myself and my body fully and feel comfortable around intimacy and sex.