- ear plugs - sleeping is tricky in hospital (sometimes through no fault of anyone, there are just lots of people around at night, some working, some sleeping, and they can make noise) and whilst I managed okay by using my mp3 player and headphones to "zone out", ear plugs would have been a big help.
- multiple nighties & dressing gowns - I was sick twice over my stuff from home and had to wrap myself up in a blanket until my husband could take it home to wash.
- comfy slippers - my feet were swollen both before and after surgery and so I had to buy new ones anyway, but some comfortable slippers are a must.
- pretty pyjamas - as the rest of me was pretty swollen, too, and because of various tubes, I stayed in hospital gowns for a while, but it was so good to get into some pretty pyjamas instead; I even had what I called my "dress pyjamas" for when guests came to visit!
- notebook - I kept a food diary once I could scribble legibly and this was somewhere where I could note down any questions that I had for my doctors when they visited every morning.
- dry shampoo - I coped surprisingly well with dirty hair, given that I normally feel horribly grubby if I don't wash it every day, but a couple of friends bought me some of this and it was a big help, as I was able to do it by myself in my bed and it made me feel clean and relaxed.
- hairbrush & hair-ties - one of the main reasons why I was able to cope with my hair being dirty for so long was that my mum put it into plaits for me (I became known as "Dorothy" by some of the nurses!).
- various toiletries wipes - easy-to-use and quick-to-hand; lots of family & friends bought me a variety of these and they were great for when I was still finding it painful to get all the way to the bathroom to wash.
- toothbrush & toothpaste - self-explanatory (and this was something me & my dear husband managed to remember!).
- tweezers - no-one should have seen the state of my eyebrows after 2 weeks of illness and another 2 of post-surgery recovery. Fortunately, after three of those weeks, my wonderful mother-in-law bought me some in. It's a silly thing to worry about, on the grand scale of things, but I found that it was sorting little things like this out that really improved my spirits.
- magazines - I packed my Kindle, thinking hospital would provide a great opportunity to catch up on my reading (I also hoped to knit a few jumpers, learn to crochet and do some cross-stitch), but quickly discovered that, post-surgery, I had nowhere near the required concentration or attention span to read a book. I could just about manage snippets from magazines and so was glad when my parents brought some along with them (they gave me a break from ileostomy leaflets!).
- enough money to buy a television card... - given my lack of concentration, I was so grateful for daytime television! Even when I wasn't allowed to eat and all there seemed to be on were cookery programmes, it was something to pass the time. There were also some times where I had found it difficult to talk and so, rather than force my poor husband to carry the conversation for multiple hours, we would sit and watch the television together (with subtitles) and make little comments, like we do at home. It made me feel so much better!
- phone charger - self-explanatory. I could use my phone on the ward and did so, a lot. I emailed, texted, and occasionally called friends and family, who helped me feel more like myself.
- a blanket - we have a few cheap, fleecy blankets at home for snuggling under in the winter and, with hindsight, I would have appreciated having one of these. The hospital bedding, whilst adequate, was heavy and decidedly non-cosy (generally being cold unless being in immediate contact with a warm part of your body for longer than five minutes).
Thursday 19 May 2011
Things to pack for a hospital stay
My own hospital admission was an emergency and therefore wholly unexpected, but whilst posting on the IA Support Group forum (which, by the way, is marvellous and full of wonderful, friendly and very helpful people!) today, I had a little think of what sort of things I would have wanted to pack in my overnight bag, for future reference.
Fighting grouchiness
This morning I am fighting grouchiness, as I was awoken just before 6am by a bag ballooned with gas. I fidgeted for a few minutes, hoping that this might - somehow - settle things, before deciding that I would just have to get up and empty it. I was lucky that I did: when I got to the bathroom, this is what I found:
That is a picture of yesterday's bag seriously coming away from my stomach. I have to admit, I was impressed that my bag didn't leak, despite 95% of the adhesive on the left-hand side having completely failed. It was actually pretty snug by the stoma itself, I just seem to be having a bit of trouble with the adhesive on the outer edge of the left-hand side. I guess this is probably due to sweat or something? The bag doesn't seem to have stuck well there for about a week now; I'll have to speak to my stoma nurse about it.
Hunger pangs
Anyway, I changed my bag (slowly and very sleepily) and got into bed, only to find that my stomach had woken up and was - quietly at first - demanding food. In addition to the alterations in my sleeping pattern, my post-operation hunger pangs have to be another thing that I find rather strange.
My stomach has always known, and had no qualms about telling me and the rest of the room, when it feels it is meal-time (I once had to excuse myself with a very red face from a tutorial at university, because my stomach was threatening to dominate the discussion); however, none of these pangs have ever been painful. Now, they are. This is probably just because I'm recovering from major bowel surgery (and slight malnutrition), but I'm finding it difficult to appreciate the manner in which my body keeps demanding that I do things (like wake up, when I want to lie in, or that I eat when I feel like my last main meal was ten minutes ago!).
Every time I think things along these lines, I think I should shut up and be incredibly grateful that I didn't have to live with severe symptoms of ulcertive colitis for longer than two weeks prior to my operation, and that tends to calm me down, but all of this is still so alien... So is my feeling grouchy so often. I've found myself apologising to family (especially my dear husband) for unreasonable grouchiness or snappiness more regularly than ever before, and that shocks me, too, because I've never had too much of a temper to ever worry about controlling (!). So many new things to learn! The doctors never told me that one of those things would be how to fight grouchiness!
That is a picture of yesterday's bag seriously coming away from my stomach. I have to admit, I was impressed that my bag didn't leak, despite 95% of the adhesive on the left-hand side having completely failed. It was actually pretty snug by the stoma itself, I just seem to be having a bit of trouble with the adhesive on the outer edge of the left-hand side. I guess this is probably due to sweat or something? The bag doesn't seem to have stuck well there for about a week now; I'll have to speak to my stoma nurse about it.
Hunger pangs
Anyway, I changed my bag (slowly and very sleepily) and got into bed, only to find that my stomach had woken up and was - quietly at first - demanding food. In addition to the alterations in my sleeping pattern, my post-operation hunger pangs have to be another thing that I find rather strange.
My stomach has always known, and had no qualms about telling me and the rest of the room, when it feels it is meal-time (I once had to excuse myself with a very red face from a tutorial at university, because my stomach was threatening to dominate the discussion); however, none of these pangs have ever been painful. Now, they are. This is probably just because I'm recovering from major bowel surgery (and slight malnutrition), but I'm finding it difficult to appreciate the manner in which my body keeps demanding that I do things (like wake up, when I want to lie in, or that I eat when I feel like my last main meal was ten minutes ago!).
Every time I think things along these lines, I think I should shut up and be incredibly grateful that I didn't have to live with severe symptoms of ulcertive colitis for longer than two weeks prior to my operation, and that tends to calm me down, but all of this is still so alien... So is my feeling grouchy so often. I've found myself apologising to family (especially my dear husband) for unreasonable grouchiness or snappiness more regularly than ever before, and that shocks me, too, because I've never had too much of a temper to ever worry about controlling (!). So many new things to learn! The doctors never told me that one of those things would be how to fight grouchiness!
Wednesday 18 May 2011
Struggles with sleep
I apologise for jumping around a little bit (from my operation to the present day, some six weeks afterwards), but I really don't feel like I have enough energy today to write the second half of my hospital experience. The reason for this is sleep, or rather, a lack of it.
Now, I am extremely grateful that, due to the skill of my surgeons and a lot of luck, my wounds have now fully healed on the outside and my pain is now restricted to when my curiosity overrules me and I prod my scar, or when I sneeze or cough. As a result, I'm able to sleep relatively well, even on my side, with suitable support from some cushions, but some nights, things just don't go right, for one reason or another, and I feel it a lot more at the moment as I'm generally so tired anyway.
Last night was one of those nights. I half-woke up a couple of times, feeling feverish and sticky, but was so exhausted, I just tried to roll over and find a cooler section of the mattress. Having never previously had much trouble with sleeping, I have to admit that I've found this to be something that I've struggled with since my initial illness last month, and something that I hadn't considered being affected in the long-term. Hopefully, as with most things, this will settle down as things heal and I get used to my stoma, but so far here are the variety of issues currently affecting my slumber:
Now, I am extremely grateful that, due to the skill of my surgeons and a lot of luck, my wounds have now fully healed on the outside and my pain is now restricted to when my curiosity overrules me and I prod my scar, or when I sneeze or cough. As a result, I'm able to sleep relatively well, even on my side, with suitable support from some cushions, but some nights, things just don't go right, for one reason or another, and I feel it a lot more at the moment as I'm generally so tired anyway.
Last night was one of those nights. I half-woke up a couple of times, feeling feverish and sticky, but was so exhausted, I just tried to roll over and find a cooler section of the mattress. Having never previously had much trouble with sleeping, I have to admit that I've found this to be something that I've struggled with since my initial illness last month, and something that I hadn't considered being affected in the long-term. Hopefully, as with most things, this will settle down as things heal and I get used to my stoma, but so far here are the variety of issues currently affecting my slumber:
- going hot/cold;
- pain (recently, only due to blockages or indigestion, thankfully);
- pressure on my stoma/needing to empty my bag;
- needing to urinate (due to increased water intake); and
- being uncomfortable sleeping on my back (or, generally, not being able to easily roll onto my stomach, which I regularly did before my surgery).
Tuesday 17 May 2011
Whilst waiting to drive...
Today, I finally mustered enough energy and enthusiasm (only six weeks after my operation!) to delve within my collection of driving-related paperwork and find my insurance documentation and telephone them to make them aware - as my nurse suggested - of the fact that I had major bowel surgery.
My "mustering" of enthusiasm took six weeks, because I have a general dread of calling up car insurance companies, having experienced many previous phone calls where I rang with a clear question and found myself putting down the receiver at the end of the conversation with only a vague answer and the bitter realisation that I hadn't been persistent enough in my questioning and therefore would have to call again for clarification.
Despite this dread, it appears I haven't learned my lesson and, sure enough, today I had to call twice. When I was discharged from hospital, the nurse who finalised my paperwork said that most people wait 6-8 weeks before driving and that I should contact my insurance company, just in case they have any special rules or waiting periods. In addition, I should only drive again when I can manage an emergency stop in my car without any trouble or pain.
The first person I spoke to seemed a little off-guard at my question and told me that I should be phoning the DVLA rather than them, as they are people who set the restrictions. They also said that the company couldn't accept my or even my doctor's opinion on my readiness to drive, only the DVLA's.
Half a minute after I put the phone down, I realised I should have questioned further. Instead, I did a Google and found this useful snippet of information hidden within the 'At a glance guide to the current medical standards of fitness to drive':
My "mustering" of enthusiasm took six weeks, because I have a general dread of calling up car insurance companies, having experienced many previous phone calls where I rang with a clear question and found myself putting down the receiver at the end of the conversation with only a vague answer and the bitter realisation that I hadn't been persistent enough in my questioning and therefore would have to call again for clarification.
Despite this dread, it appears I haven't learned my lesson and, sure enough, today I had to call twice. When I was discharged from hospital, the nurse who finalised my paperwork said that most people wait 6-8 weeks before driving and that I should contact my insurance company, just in case they have any special rules or waiting periods. In addition, I should only drive again when I can manage an emergency stop in my car without any trouble or pain.
The first person I spoke to seemed a little off-guard at my question and told me that I should be phoning the DVLA rather than them, as they are people who set the restrictions. They also said that the company couldn't accept my or even my doctor's opinion on my readiness to drive, only the DVLA's.
Half a minute after I put the phone down, I realised I should have questioned further. Instead, I did a Google and found this useful snippet of information hidden within the 'At a glance guide to the current medical standards of fitness to drive':
Driving after surgery
Drivers do not need to notify DVLA unless the medical conditions likely to affect safe driving persist for longer than 3 months after the date of surgery (but please see Neurological and Cardiovascular Disorders Sections for exceptions).
Therefore, licence holders wishing to drive after surgery should establish with their own doctors when it is safe to do so.
Any decision regarding returning to driving must take into account several issues. These include recovery from the surgical procedure, recovery from anaesthesia the, distracting effect of pain, impairment due to analgesia (sedation and cognitive impairment), as well as any physical restrictions due to the surgery, underlying condition, or other co-morbid conditions.
It is the responsibility of the driver to ensure that he/she is in control of the vehicle at all times and to be able to demonstrate that is so, if stopped by the police. Drivers should check their insurance policy before returning to drive after surgery.So I called my insurance company again, armed with this information. The second gentleman that I spoke to acknowledged this and said that that was all fine and that there weren't any special rules set by them - if the DVLA haven't stopped me from driving, then they're satisfied that I'm safe to drive. I also specifically asked, "Does my surgery affect my policy?", to which he said it didn't. Well, I'm happy enough with that. I might not be driving for another couple of weeks (mainly due to tiredness and a lack of concentration now, more than any pain), but it's good to have finally checked the box against the "Inform car insurance" item on my to-do list!
Wednesday 11 May 2011
Getting a stoma, part I
So how did all of this start? If the question was why did all of this start, I honestly don't know yet. The diagnosis made by the doctors in hospital was ulcerative colitis, which is a type of Inflammatory Bowel Disease (IBD) and causes ulcers to form in the large intestine (colon) and rectum. This results in inflammation and, therefore, pain and diarrhea. There are various other symptoms, but as I'm not an expert (certainly not yet), if you want to read more, I'd suggest reading the NHS Choices page.
Most people with IBD (of which Crohn's Disease is another type), from what I've read so far, tend to experience a range of severity of symptoms in bouts or "flare ups". These can be managed with medication and adaptations to diet and the disease can go into remission. Surgery to remove the diseased colon (or ileum/small intestine, depending on where the inflammation is) is usually considered only in emergencies or if the disease is causing lots of problems.
My body, however, decided not to do things by halves (as amusingly put by a friend in a get well soon card!), and instead launched one huge flare up with no warning. Two months ago, I started feeling feverish, before starting to suffer from bad diarrhea, vomiting, and pain in my abdomen. This continued for a week, during which I ate hardly anything.
My doctor, thinking it was a stomach infection, gave me antibiotics and suggested that I attempt to starve it, so I continued not eating for another few days, during which my pain worsened to the point where I was forced to sleep upright in a chair, because I was finding it difficult to lie down and get up again in the time required to make it to the bathroom. I was weak, tired, and in pain, and so when my stomach and legs began to swell up, I asked the doctor to make a home visit. He hospitalised me that day, and I remember being glad that I would be going somewhere where they could, at least, give me more powerful painkillers, sleeping medication and food through a drip. A few days, and hopefully I would be out and about again and eating. Oh, eating! I missed eating almost as much as I missed sleeping longer than two hours straight.
When I got to the hospital, they immediately put me into a side room, as I had unexplained (and bad) diarrhea. I was also put onto an IV drip, which was a new experience for me (I'd never been into a hospital for anything more intrusive than a blood test or x-ray), and - now that I think about it - I can't even remember when they put that in. My main memories from the first couple of days were going to the bathroom, trying to convince the CT scan doctor that I wasn't pregnant (because the ward nurse had misplaced my urine sample and therefore not done a pregnancy test), and having to change out of my own clothes because I was so swollen that they didn't fit.
Two days later, following multiple x-rays, my CT scan, and many blood tests, a doctor came to see me to say that they thought I had IBD and that they were concerned that my colon might perforate (or tear), so they wanted to operate and remove it.
My first thought was: "Hang on, don't I need my colon?", but I kept my mouth closed and the doctor proceeded to explain that they would form a stoma from the end of my small intestine and I would have to wear a pouch or bag over it.
My second thought was: "Are there any other options?", but, again, the doctor answered before I could speak and said that they were recommending this as emergency surgery, to take place as soon as possible, because otherwise I might die.
I was in mild shock at this point. At no point in the previous two weeks had I considered the possibility that what was happening to me was anything that antibiotics and rest couldn't fix, let alone that I would need surgery, that my body would noticeably change, or that my life would be in danger. I cried a little bit, hugged my wonderful husband, and took some deep breaths. I was going to have an ileostomy.
Most people with IBD (of which Crohn's Disease is another type), from what I've read so far, tend to experience a range of severity of symptoms in bouts or "flare ups". These can be managed with medication and adaptations to diet and the disease can go into remission. Surgery to remove the diseased colon (or ileum/small intestine, depending on where the inflammation is) is usually considered only in emergencies or if the disease is causing lots of problems.
My body, however, decided not to do things by halves (as amusingly put by a friend in a get well soon card!), and instead launched one huge flare up with no warning. Two months ago, I started feeling feverish, before starting to suffer from bad diarrhea, vomiting, and pain in my abdomen. This continued for a week, during which I ate hardly anything.
My doctor, thinking it was a stomach infection, gave me antibiotics and suggested that I attempt to starve it, so I continued not eating for another few days, during which my pain worsened to the point where I was forced to sleep upright in a chair, because I was finding it difficult to lie down and get up again in the time required to make it to the bathroom. I was weak, tired, and in pain, and so when my stomach and legs began to swell up, I asked the doctor to make a home visit. He hospitalised me that day, and I remember being glad that I would be going somewhere where they could, at least, give me more powerful painkillers, sleeping medication and food through a drip. A few days, and hopefully I would be out and about again and eating. Oh, eating! I missed eating almost as much as I missed sleeping longer than two hours straight.
When I got to the hospital, they immediately put me into a side room, as I had unexplained (and bad) diarrhea. I was also put onto an IV drip, which was a new experience for me (I'd never been into a hospital for anything more intrusive than a blood test or x-ray), and - now that I think about it - I can't even remember when they put that in. My main memories from the first couple of days were going to the bathroom, trying to convince the CT scan doctor that I wasn't pregnant (because the ward nurse had misplaced my urine sample and therefore not done a pregnancy test), and having to change out of my own clothes because I was so swollen that they didn't fit.
Two days later, following multiple x-rays, my CT scan, and many blood tests, a doctor came to see me to say that they thought I had IBD and that they were concerned that my colon might perforate (or tear), so they wanted to operate and remove it.
My first thought was: "Hang on, don't I need my colon?", but I kept my mouth closed and the doctor proceeded to explain that they would form a stoma from the end of my small intestine and I would have to wear a pouch or bag over it.
My second thought was: "Are there any other options?", but, again, the doctor answered before I could speak and said that they were recommending this as emergency surgery, to take place as soon as possible, because otherwise I might die.
I was in mild shock at this point. At no point in the previous two weeks had I considered the possibility that what was happening to me was anything that antibiotics and rest couldn't fix, let alone that I would need surgery, that my body would noticeably change, or that my life would be in danger. I cried a little bit, hugged my wonderful husband, and took some deep breaths. I was going to have an ileostomy.
An Introduction
Welcome to 'Tea & Jelly Babies'! I apologise for the slightly cryptic blog title, but I'm not especially good at coming up with them and really wanted to get straight onto actual post content. There is, however, some logic to it:
As the colon is where a lot of water is removed from your output, I have been coming to terms with, amongst many other things, having very watery output. Jelly babies are one of the many foods recommended to people with ileostomies to help thicken things up, along with marshmallows, mashed potato, apple sauce, bananas, and smooth peanut butter. I'm a fan of all of these except peanut butter, but jelly babies are my favourite.
And hence, we have "Tea & Jelly Babies".
I hope, within the posts of this blog, to chronicle my thoughts and feelings as I continue to recovery from my surgery and learn to live in harmony with my stoma. So much has already happened so far, but I didn't have much concentration and so didn't think of keeping an electronic diary; instead, I have some scribbles in a notebook that I may attempt to write up in the hope that they are useful to someone (!).
- tea, because that is my favourite drink and has been for years; and
- jelly babies, because they have, relatively recently, become my snack of choice.
As the colon is where a lot of water is removed from your output, I have been coming to terms with, amongst many other things, having very watery output. Jelly babies are one of the many foods recommended to people with ileostomies to help thicken things up, along with marshmallows, mashed potato, apple sauce, bananas, and smooth peanut butter. I'm a fan of all of these except peanut butter, but jelly babies are my favourite.
And hence, we have "Tea & Jelly Babies".
I hope, within the posts of this blog, to chronicle my thoughts and feelings as I continue to recovery from my surgery and learn to live in harmony with my stoma. So much has already happened so far, but I didn't have much concentration and so didn't think of keeping an electronic diary; instead, I have some scribbles in a notebook that I may attempt to write up in the hope that they are useful to someone (!).
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