For me to get blogging. Apologies again for my absence, I really don’t know what to write about as I can barely understand how I am feeling right now, but I feel bad for not documenting this part of my journey and I know Ill probably regret it if I don’t. I am also so grateful for all the loving messages of support and want to thank my readers from all over the world who have emailed me asking how I am as Im not posting!
I suppose Ill take it from the beginning. I went into hospital on the 14th May at 7am and was taken through to the pre op ward where I had a few tests, got my surgical stockings and changed into my hospital gown. Soon after I was taken through to the theatre and my epidural (for post op pain relief) was put in place, it was a great team and we had a laugh as I was in there. I lay back on the table as they pumped the drugs through and my last memories are of the mask being over my face and breathing deeply.
I awoke around 4 or 5 hours later from my pouch surgery feeling very nauseous but glad to be alive! I had been having nightmares that I just wouldn’t wake up from surgery. I was really tired and the nurse came and said that Timm was on the phone, I believe I spoke to him but I can’t remember. I told him to sort out the kids and to come and see me once I was back on the ward rather than coming to the post op ward where he would only be able to stay a few minutes.
I slept and puked for a few hours and was really out of it before going up on to the ward. Timm and my mum visited and I felt ok, still quite sick and just exhausted. The surgery had been a success and as I pulled up at my gown and looked down, I saw that I no longer had my ileostomy bag and my stoma was gone! I had tubes everywhere, a catheter in my bladder, the epidural in back back attached to a drug machine, I had drips in my arms, a drainage tube sewn into my stomach and a drainage tube up my bum…
The first few days passed in a bit of a blur, I was on a lot of different drugs to deal with my pain as well as not being able to eat. I slept a lot and allowed my poor battered body time to recover.
I had a reaction to an anti emetic drug called cyclozine, I felt paralysed and couldn’t speak or communicate. The nurse saw this and sat with me, explaining that I was having a reaction but that I would be fine once it passed. After an hour or so the physical feeling wore off but for several hours I was left feeling completely confused, I didn’t know where I was, I thought I was dying and I couldn’t explain to anyone what was wrong. I lay there crying silently for hours, not knowing what was happening. Luckily it wore off after about 6 hours and I slowly started feeling normal again. Absolutely terrifying!!
I was put on a different anti sickness drug to deal with my nausea and vomiting, I say vomiting but as I hadnt eaten for days at that point it was more dry heaving. I also was given an acupuncture needle to help, it was a tiny needle placed into the inside of my wrist that had a small sticker and a plastic nub that I was to leave in and press when I felt sick. I can’t explain how it worked but I can say that before I had it I was having anti sickness drugs every 6 hours. After I had it I had two doses in the next 5 days!
After a few days they removed the catheter, the drain from my stomach and the epidural. The drain in my bum had to stay in for 9 days… It was awful. It was a tube inserted into my anus and into the newly formed pouch, its job was to allow any waste to drain from my internal pouch into a bag allowing the stitches on the pouch time to heal. Three times a day I had to pump sterile water into the tube and then drain it out. Honestly, it was the worst thing about the whole procedure. The tube was extremely uncomfortable and meant I couldn’t sit upright nor lay flat on my back so I was bed ridden and had to turn from side to side every hour or so. It was embarrassing too to have this quite large tube coming from in-between my legs and having to carry the bag around with me when I went to the toilet and back.
Im glad to say that the nurses and staff were amazing this time, I had no problems at all like the last time I was in. There was especially one nurse named Sam who just went above and beyond, she was so caring and easy to talk to. She took the time to speak to you and was just an amazing nurse. Im going to make sure I let the hospital know just how much I appreciated their care and support.
I wasn’t allowed any solid food for the whole 9 days that I was in hospital. 9 DAYS YO!!!! The first few days I had a drip, and after that I had to drink plenty of fluids and I had these fortisip drinks that I was supposed to drink three times a day. I think I had 4 or 5 in my whole stay as I couldn’t stomach them.
I was quite emotional while I was in hospital. Between the pain, lack of sleep, lack of food, the drugs and the emotions of dealing with surgery I was a bit of a mess. I cried quite a lot and felt ever so sorry for myself. There was a bit of a heat wave while I was in and Id see people coming in, in summer clothes and smelling of the outdoors and would silently cry to myself. Im aware this sounds a bit pathetic but it really got to me!
One day I asked Timm to make sure I had no other visitors, I was so chuffed that my friends and family visited me but that one day I just felt totally overwhelmed and just wanted to see my husband. He said he was coming at 2pm for visiting but he was running late. I lay there watching the clock tick by, logically knowing that he must just be caught in traffic, that he would have called if he couldn’t make it. But my mind started working overtime.
‘He’s not coming’ I kept thinking. ‘He doesn’t want to see me, how can I blame him? I have this horrid tube and Im so weepy and useless. He’s just not coming’ I worked myself into such a state that all I could do was lay there and cry. And then he appeared. A measly 20 minutes late, not a big deal at all but I had wound myself up so much that I just wept.
But you know, my knight in shining armour came and held me tight. “You thought I weren’t coming” he said and I just sadly nodded. He walked off and came back grinning with a wheelchair. “Come on Mrs C, we’re off on an adventure” he said. He bought me one of those donut cushions so I could sit and then helped me into the chair. He wheeled me through the hospital out to a little garden and we just sat quietly in the sunshine holding hands. Him on a bench and me in the chair, blanket tucked over me hiding the bag. For the first time in a week I smiled and it felt genuine, everything else, the pain and the fear, just disappeared for that hour. It felt like it was just me and him and that everything was going to be ok.
On Friday 23rd May I was finally allowed the tube in my ass to be removed, it was such a relief. I could have cried!!! And then I was allowed home! It was so good to get home to Timm and the kids and into my own bed. I have been home for three weeks now and the recovery is slow and steady. Physically I have recovered well from the actual incision wounds on my stomach, they have healed really well and I am pleased with them.
The first week I was home I had to go to the toilet and empty my bowels every two hours, I had an alarm set to remind me and this went on through the night too. The next week the time was extended to three hours so as you can imagine, I was just exhausted. Getting up through the night was tough as once I was up I was finding it difficult to get back to sleep. The reason for this is to make sure as little pressure as possible is put on the stitches in my pouch. The next week and from then on I am to hold the urge to go to the toilet for as long as possible to start the long process of training my pouch to stretch and hold waste so I don’t have to go to the toilet constantly. This can take up to two years…
Last Sunday I started feeling unwell, I had to go to the loo A LOT and by Monday morning I had been over 50 times in 24 hours. I was exhausted and terrified something had gone terribly wrong. I called my stoma nurse who recommended speaking to the specialised nurses at the hospital, they said I needed to see the GP as soon as possible. I saw the GP who oddly enough used to work with my consultant and surgeon Mr Brown! She was lovely and examined me and said she believed it was a virus that was going round. I was so relieved and came home to plenty of fluids and rest.
So a month after surgery I am now going to the toilet around 15 – 20 times a day, this is mainly because it is quite difficult to actually open my bowels, it feels so different to before and it may take 3 or 4 trips to the toilet to feel like I am ’empty’. It is very tiring going so much and I feel down about it. I have to wear a pad in my knickers ‘just in case’ which makes me feel like absolute crap. I feel really embarrassed talking about it, which is odd for me as I usually am happy to talk about anything but I think because my self esteem and confidence feel at an all time low, it is hard for me to open up and talk about it.
I know it is early days and I was warned that this recovery process is very long and drawn out, it takes a lot of time for the pouch to work properly and so I know I just have to be patient and accepting that this is how it is right now. But honestly, I am feeling very low. I feel sad, scared and weak. Im worried that I have done the wrong thing, I feel like I am ill with Ulcerative Colitis again and that I am back to where I was before the first surgery. I feel quite panicky and anxious a lot, like Im on the verge of tears. And Im finding it very difficult to open up and talk about it to those around me.
I am so lucky to have such wonderful, caring people supporting me. Timm, as ever, has been amazing, my awesome friend Caroline has been here looking after me and the kids, cooking, cleaning and just being there for me, my mum has been here cooking for us all and looking after the kids. I have had visits, messages and calls from so many fabulous friends and family and I feel so grateful.
But part of me feels like I need to be bubbly and happy, I don’t want to be a Debbie Downer whinging on and on and I find myself just saying “yes, Im fine!!!” to the question of how am I because Im worried that if I open up and say that actually I feel horrible that I will be letting people and myself down. I know that sounds mental, and if I think about it logically I know that it is absolutely fine to be feeling rubbish, I just had major surgery! I also know that people are there for me.
I think I find it difficult to voice my feelings because I honestly don’t really understand them myself. I just feel that under my day to day smile, there lurks this gloom. A heavy hearted sadness coupled with a chest thumping panic. I feel worried at the thought of being in public or around too many people, I feel safe here at home with Timm and so Im worried about leaving the house. We went to a shopping centre last week for an hour and it was quite scary but ok as I was with Timm, I was exhausted by it and went straight to bed afterwards.
I just need to keep plodding on, take each day at a time and accept that right now, things are shit. But as I recover, things will get better each week. This is a lonnnnnngggggg post so have a shiny star if you have managed to get this far! Thanks for reading and I will make myself keep on blogging, because no matter how difficult it is for me to get these words down, I know that I feel better for it and hopefully I can help someone else too.