July/ August 2007
I was put into a wheelchair and taken back to my bed, id made it to the very end of the ward but found myself struggling with the return walk, i really didn’t mind getting in the wheelchair as i was so proud and amazed at myself for walking at all. I asked the nurses not to mention the fact that i had got out of bed and walked to my family as i hatched a plan to get strong enough to walk down the corridor to meet them as they walked in at visiting time, of course this was going to take time but i really wanted to see the look on their faces.
I was doing well with my soft food eating regime, i had got an appetite but struggled to eat much quantity, it really didn’t help that the hospital food was so bland and nearly always looked unappetizing. The food was always cold and the selection for people on soft foods was very limited. I couldn’t find much complaint with the soups as they were edible and some were actually quite tasty but that’s as far as it goes. I was offered salads and fruit regularly which obviously doesn’t fall into the soft food category and as anyone with Crohns knows fruit, veggies and salads are our worst nightmares. There were even a few occasions that i was offered Curry, yes you heard that right Curry, how on earth the staff of the NHS expect people who suffer with IBD to eat any kind of spicy food let alone Curry is totally beyond me. Many meal times would come and id refuse to eat, of course this brought the doctors to my bedside telling me if i wanted to get better i needed to start eating, one day i asked the doctor if he would like to eat the lunch that was sat in front of me ( watery mash potatoes, some kind of meat that i couldn’t identify and gravy that had dried onto the plate through it sitting in a warming station for god knows how many hours) his response was No, i proceeded to tell him that if he wouldn’t eat it then why should I? Someone who had been through major surgery and not eaten in months should not be asked to eat what i can only describe as dog food ( in fact my dog would turn his nose up at it and that’s saying something!). The only solution was to get my family to bring me my meals, this wasn’t made easy as the nurses refused to heat any food brought in for me for health and safety reasons, Seriously?! They were more than happy to serve me food that had been sat in a warming station on the ward for hours but they weren’t allowed to warm fresh made food up in the staff room for me. My Mum went on to spend a fortune most days on fresh ingredients and stand cooking me a meal that she would wrap in layers of tin foil or put into a flask and make a mad rush of the 20 minute drive to the hospital to give me my meals. As if she wasn’t dealing with enough with me being in hospital and so poorly for so long but also my Nan in a nursing home, no support from anyone including my Husband and then standing cooking me food on a daily basis, i was far from happy about the scenario but there was no other way to get any form of real nutrition into me, i needed to eat to sustain myself to come off the artificial feed (TPN) to get stronger and hopefully home and that most definitely wasn’t going to happen on NHS slop.
The start of me eating brought a whole new different complication to me. Way back when my wound blew open just 10 days after surgery i had formed fistulas, these hadn’t been apparent until now as on the TPN i had no food passing through my intestines whatsoever but after only a couple of days of soft food my stomach began to leak. It sounds really gross but the only way i could describe it is a sick like mixture, food that hadn’t gotten far enough around my intestine to be properly broken down, it basically came out pretty much the same as it had gone in. The stoma nurses were asked to take a look at me and they came up with an appliance called a wound management bag, its pretty much like a drainable stoma appliance but on a lot bigger scale, because of the size of my wound the appliance i need would be twelve inch long and six inches wide. I had only been caring for my Ileostomy for a few weeks and now i would need to learn how to care for both the stoma and the wound management bag.
I began to feel very low over the coming days and weeks, i was eating well through my mums home made soups and dinners with added yogurts that she would bring but the more i ate the more that would come out of the fistulas on my tummy. I was getting around a little more by getting myself out of the bed and taking a few steps a day with the physiotherapists but between the mixture of eating and moving around my bags started to leak more and in turn my stomach was becoming red and weepy. I alone could not get the appliances to stick and stay on my tummy for more than a few hours which meant i would need to call upon the nurses to help me and in some cases do them entirely for me. They would go maybe three or four times a day each time taking between one and two hours to change, of course this put added stress onto the already under staffed nurses which made them get quite stroppy at times when i pressed my buzzer to tell them my bags had gone and i was lay in a puddle of mess. This made me very upset and depressed and at times very distressed. Don’t get me wrong some nurses were fantastic and did everything they could to ease my suffering but on the other hand there were some really heartless nurses who would make me feel like a burden. My skin was breaking down on my abdomen due to the stomach acid and waste sitting on my skin, i can only describe it as someone had poured a kettle of boiling water onto my skin, the pain was incredible, way off the scale that i had ever experienced. The fistulas would continue to pump the waste out as the nurses would try to change the bags, wiping my skin of the acid liquid was horrendous I would take morphine to try and ease the pain but it wouldn’t do a thing, i really believed that it wants staying in my system long enough to take affect. I asked the nurses if i could take some Entonox (Gas and Air) as this had been the only thing to get me through my previous wound packing’s After a few days of coping with the bag changes with help of the Entonox i was told that i could no longer have it as it was costing too much. This sent me into hysterics as i knew i couldn’t face this pain anymore, i wanted to die, i had enough.
I told my mum when she arrived at visiting time that i was no longer allowed the Entonox to get me through this pain, she discussed all of this with the nursing staff and they went on to tell her they believed i was addicted to it, ( I have since done research into this and found that Entonox is none addictive and in fact a lot better form of pain relief to use especially when compared to drugs like Morphine that are highly addictive.) My mum asked if she could buy my own canister of the gas and air and the sister of the ward couldn’t see any problem with this, so my Mum paid nearly 200 pounds in cash to have my own entonox canister in my room, to use when doing my bag changes and wound packing’s Strange how when your paying for your own pain relief it being addictive is never brought into consideration again?! The next few weeks were going to be a real test of my courage and strength…….
As always thanks for taking the time to read my blog everyone, it really means the world to me. I would love to hear off you in your thoughts on Hospital food and pain relief. I hope you continue with me through my journey with crohns.
Keep Well Guys, Much Love Georgie xxxx