Going home after such a big operation was for me bittersweet. Don’t get me wrong, I really wanted to get home and begin my new life. But at the same time it meant that “all of this” became scarily real. When I say “all of this” I guess I mean my new body and all that comes with it.
When you’re in hospital a nurse or health care assistant is just around the corner. You can ask for their help if you’re facing difficulties changing your bag. A doctor will come and see you twice a day to see how you’re going and there are even dieticians who can help you understand and choose the right kind of food that you’re gut will be able to tolerate. When you get home all of a sudden you can’t really ask for help because friends probably won’t have changed a stoma bag before and they will know as much as you when it comes to diet and stomas.
Of course, the hospital isn’t going to send you home if they don’t feel you are ready ; the Marsden unlike most hospitals is not under such huge pressure to make beds available; and they tell you that you can always come back, but ultimately you have to bite the bullet and leave some time. In my case I was actually given the choice. I thought I was going home all weekend but unfortunately there were a couple of obstacles still in my way.
Unlike a colostomy, the output from an ileostomy is naturally quite liquid like in form. Despite this, my output was still too high for the doctors to feel happy enough to release me. As a result of this I was also losing a fair bit of potassium. However, the effluent levels were reducing and on the Sunday evening it was decided that if my blood tests showed my potassium levels were rising then I would be released the next day.
When the results came through on bank holiday Monday, they showed that although my potassium levels weren’t normal just yet, they were on the up and if I felt well enough then I could go. I also agreed to pop into see my GP later in the week for another blood test and in this way I was still being monitored.
Making the decision to go home was hard because if truth be told I was a little scared, but I also knew I had to start somewhere and now was as good a time as any. It felt strange as my friend and I packed my stuff up. I felt pretty emotional and sad to say goodbye to the wonderful people who work on the ward but fortunately there was a skeleton staff on shift and transport came through pretty quickly, so there wasn’t enough time to get too upset. Besides, they insisted I come back and see them in the coming weeks. They like that.
One of the perks of having a big operation was that I not only got transport home, on a stretcher, in an ambulance, but also for all follow up appointments in the coming weeks. I said goodbye to my friend and was whisked home to be met by another friend back at the flat. Walking into my flat was strange. It had only been a month since I’d been home but it felt so long and so much had happened. I’d been warned that it would be an emotional time and I felt the tears well up inside me. “This is it then” I thought and my friend and I hugged each other tight.
Over the next couple of days I eased into my new life at home. I had a lovely birthday, spending time with fantastic friends. And I enjoyed some quality time with one of my best friends and her baby boy who came down from Newcastle to visit me for a few days. We didn’t do too much but it was so reassuring to have her around if I had any problems, especially for the first few nights I was out of hospital. She was able to help around the flat especially in preparing food and doing the little chores that needed to be done around the place.
When she left I was sad but I continued to be supported by amazing friends. One fantastic friend came round every day for months, helping me with everything. From cooking, to shopping, to chores and even picking prescriptions up from the chemist for me. Nothing was too much. Other friends took it in turns to stay over, pop over, prepare meals for me, make cakes for me, buy groceries for me, send me cards, or to be simply on the end of the phone. In the most difficult of times the kindness of others has always shone through. For that I will be eternally grateful.
However, Mr Rasheed’s words proved to be prophetic over the course of the coming weeks. Initially I felt very weak. I had lost a lot of weight in hospital and although I realised I needed to eat and put some weight back on, it was not plain sailing. The dietitian and stoma nurses had given me some practical advice on all of this when I left hospital. Amongst other things I was to concentrate on getting as much sugar and salt into my diet as I could, avoid whole grain foods, avoid raw vegetables such as salads and fruits with skins and pips, eat little and often and to eventually phase different foods in gradually.
Because my ileostomy effluent was prone to be fairly liquid in form I needed to take loperamide (Imodium) first thing in the morning, half an hour before any food and to eat half an hour before I took on any fluids. People with stomas take anti diarrhoeal drugs in a different way. They help slow our digestion down and thus are used to help us absorb the nutrients if food is passing through too quickly. This system was to be followed in the evenings and indeed used at any point during the day if I noticed my stoma output was rising.
Although I needed to keep hydrated I was advised to avoid drinking at meal times as it would help my bowel absorb as much as possible, and would help reduce my output. And it was better to take regular sips throughout the day rather than have large amounts quickly. I was aiming for a porridge like consistency to my stoma output and to empty it between 4 to 6 times a day. The dietitian had also sent me home with a big order of build up protein fuelled drinks. It’s a good way of absorbing nutrients and adding calories.
I felt quite confident in my understanding of all of this. The problem was that I hardly had any energy and often despite being hungry, when food was put in front of me, I felt pretty ill again. Even the build up drinks were a challenge. It was beginning to get me down, Around this time I met my stoma nurse Rose.
Every patient who has a stoma is assigned a stoma nurse. Although she is based at my local hospital, she works out in the community too and visits patients at home until they feel well enough to visit her in clinic. As soon as I met Rose I knew we would get on. She has a lovely way about her and instantly put me at ease. It really helped to discuss my diagnosis, treatment, surgery and how I felt in that moment. And some of the things she said helped me begin to make sense of my recovery.
She pointed out that the reason I became so tired so quickly was because the energy going out was more than going in. It seems so simple in hindsight but it helped me begin to understand that if I felt sick after my shower and changing my bags it was my body’s way of telling me it was tired. Slow down, have a rest and then think about eating. She also suggested types of food to try and told me to concentrate on little and often. To not concentrate so much on meals because that would probably make me feel ill again. It’s exactly how I felt.
We changed my bags together and so she got a chance to see my stomas for the first time. I’m lead to believe that my stomas are really neat and quite small compared to some and she was happy with how the skin looked around them. I’d been using a specific brand of bags since hospital but we agreed to try out different brands and see which ones suited me best. It’s a whole new world out there and as with everything, everyone is different so we will all have different preferences. Looking after your stomas and stoma bags is a subject I’ll return to another time.
In the weeks following my release from hospital I was in a fair bit of discomfort. I had a few wounds, all perfectly normal for this type of surgery, around my sacrum and perineum, and so these needed looking after and in some cases dressing. The hospital put me in touch with my local district nurses. I can’t tell you how wonderful and kind these nurses are. They would come and see me every day. I think I’ve met most of the nurses now and all of them have been brilliant. They were always so interested in me and so encouraging. So even if I didn’t feel particularly well that day, by the time they left, I’d had a little boost and felt empowered and that I could do this.
Slowly but surely my appetite has returned. I’ve been back to see one of the dietitian’s at hospital in the last few weeks. I’d managed to put on a kilo on when I saw her so we were pretty happy with that. It seems ironic that after years of trying to eat well so I can keep my weight down, I’m now trying to put weight back on. However I’m looking and feeling much better now and whilst it’s still challenging to find the right foods to eat, I’m getting there. Encouragingly, she advised me that in time she didn’t see a reason why I couldn’t eat the same sort of things as before my surgery.
Unfortunately, everyone who has a stoma reacts differently in terms of what they can and cannot eat. The only way to work out what’s good for you is by trying things out. To keep a record of what you are eating and how your body reacts. I’ll have to keep on taking loperamide for the rest of my life and I definitely seem to be more prone to having a higher output but I’m beginning to have more of a sense of what works for me. It can be tiring but you just keep on going.
It’s now nearly 16 weeks post surgery and when I reflect back on the 3 months or so since I’ve been home I realise so much has changed. I’m now much more capable of doing things for myself. I’m back doing all my own cooking and whilst still relying on friends for many chores and big grocery shops, I can do quick shops around the smaller supermarkets. I get out most days and have even managed to get to Wembley to see Adele and to enjoy a day out at Wimbledon.
These trips out have been fantastic and provided a welcome distraction to the ongoing follow up trips I have had back and forth into hospital. Most of these are part and parcel of follow up clinics following my surgery, but it’s also because we’re beginning to work towards my next operation.