To new beginnings…

Tuesday 23rd August (cont’d)

“I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.”

Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options for GA and pain relief post op. They would attempt another spinal block – the one from my first operation back in May failed in recovery and I had to have a PCA put in the next morning, so I was abit sceptical about that working –  but if this was unsuccessful again, I would have a PCA put in during my time in recovery before returning to my side room. She said a surgical porter would come and get me about 7ish to take me down to theatre. I signed the consent and had a nervous wait. I was still hooked up to my TPN but my antibiotics has been tapered off since the weekend.

At 8pm, they took me downstairs to theatre. I was checked in, asked lots of questions about me and my medical history, several times by the time I was actually looking blurrily at the operating doors. Despite having been there only three months previously, I was very nervous. I think the fact that I was losing such a huge part of my digestive system and having a life changing procedure only really felt real once I was there. I don’t think anyone looks at those doors and feels calm and ready, not 100%. I knew it was the right thing to do and my other option was to wait and see if some medication could work. But I knew in my guts and in my heart that I was way past saving with drugs. I needed cutting open and removing what was making me sick. At what was eating away at me inside. At what was holding me back from living a life worth living. But that didn’t stop me from feeling overwhelmed with emotion at the grandeur of what I was doing. I was having my colon removed and a stoma formed. I would now always collect my waste in a bag attached to my abdomen. That is a huge deal. It would take a lot of time and mental positivity to get used to. I knew then it wasn’t going to be easy and it was okay to be unhappy with it from time to time. That was normal and natural. But it was going to change my life. And not just how I perform a body function but hopefully give me a better quality of life. And seeing that in the bigger picture was making going through with such a huge surgery just abit easier. That and the support I was receiving.

The last thing I remember is breathing in through the oxygen mask with the anaesthetist pushing gently on my throat – very weird as you drift off to sleep.

***

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high on morphine!

[Some of the following is abit blurry because of coming out of GA and being on morphine. Some is also filled in by my visitors in the first day or two after surgery]

I vaguely remember the recovery ward; I can see nurses around me but I could have been back on the ward… I was very drowsy but I could feel a huge scar and a bag on my belly. I remember trying to smile because I was happy but I probably couldn’t or didn’t. But I was happy inside. I knew this was going to be the tough bit; everything I had experienced since being admitted 10 days previously was just building up to this. Each day on the first ward was worse than the last, I was hoping that each day from surgery was going to be get slowly easier. I wasn’t wrong but I wasn’t 100% right either. There would be tough days. But I had tough days with my Crohn’s ever since I was diagnosed so I knew I could get through them. But they would hurt. And make me cautious and nervous. But it was all part of the learning curve with a new ileostomy.

Wednesday 24th August

My mom was the first visitor to see me; the afternoon after surgery. I was just come out of the GA fog and getting used to the PCA – aware of not to be too dependent on it, but I was wiser this time around – but it was so emotional. This was the start of a new chapter; we both knew how huge this was. She told me that the surgeon called her at 11.50pm the previous evening to let them know at home I was in recovery and everything had gone to plan; there was no signs of Crohn’s in the small bowel and they had left my rectum and anus behind as we had discussed, to be potentially removed in the future if it caused problems. I was still being closely monitored, so nurses came and went every so often. I tried my best to talk but I was in a morphine state of mind; I was pretty useless to talk to that first day. I was still getting used to the sensation of the mid line scar – which was glued not stapled, thank goodness! It did mean I was a wonderful shade of blue but without a dressing so it was quicker to start healing, excellent! – and of course, the feel of a bag on my belly with an actual stoma inside. I never looked at my bag for a couple days. I think a stoma nurse came and changed it, because I never had a clear facing bag on. When I first came to see my bag it was a Coloplast SenSura Mio.

By the evening I was feeling abit more alert. I remember giving myself a drugged up talking to. I was not going to use the PCA pump as much as my first surgery. Coming off the morphine back in May was tough. I knew what to expect this time around but this was a much bigger surgery, I wanted to know I could manage my pain level because I was not going to have any codeine.  I was going to have to look at my stoma sooner or later; I was going to have to manage it at home on my own, so the sooner I could accept it, let it become part of me, the better. It won’t ever go away, can’t ever be reversed; this was for life. It was going to save me but first it will test me. I had to find a way to cope with it. That is an ongoing process, as I’m sure all ostomates will relate to.

Saturday 27th August

I’ve had my NG tube removed. I’ve also had my two drains – one in my abdomen draining some fluid away and one in my butt – removed too. The abdomen one was abit painful but now I don’t have them I feel so much better. The catheter will be removed today too.

I have a working stoma! It’s been making quite loud fart noises this morning and creating some output. So I’ve been out of bed – gingerly to begin with, my scar despite not being stapled is so sore! I’m glad of the PCA pump, for sure, to empty the bag. There are no colorectal nurses this weekend and it also happens to be the Bank Holiday weekend – three-day weekend, typical – too. Luckily, the nurses have lots of experience of dealing with stomas and related issues, so I am not completely in at the deep end.

What was cause for concern was my blood. My count was low and they wanted to transfuse me to top it up. They couldn’t say why my levels had dropped after surgery but hopefully two units of blood would help bring my levels back into a comfortable range to not be a issue going forward. I had blood drawn to check my type and after what felt like a huge wait, I had my first unit overnight on Friday. I had to be closely monitored throughout the 3 hours it to deliver it through my cannula; thank you wonderful night nurses. I ended up not needing the second unit as my levels stabilised and I continued to recover.

My TPN was restarted after surgery – I’m unsure if it was on my second day post op or that first night – and I feel pretty good already. Having the colon out has definitely already made a positive impact. I don’t feel like I’m sick. I know that could be because of the morphine or even the TPN feed but I genuinely feel better. They did say I could see a somewhat dramatic increase in my wellness. I’ve asked for the PCA pump to removed. They also want to wean me off the TPN and begin solid food once the weekend is over. Positive steps forward for once.

Sunday 28th August

20160827_205646000_iosI’ve been encouraged to eat. I’m also on my TPN until probably Tuesday when my final bag has been ordered for.

Monday 29th August

Surgical team are impressed with my improvements over the weekend and my move towards solid food. They have cautiously said I could be home for the weekend.  I need to be eating three meals and snacks a day, managing my stoma independently and able to walk around unaided and without motivation before they will consider discharging me. So those are my goals for the rest of the week. I also need my PICC line removing so I can finally shower; I know that will be bliss after over a week since my previous one.

Wednesday 31st August

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No more PICC line, just a HUGE bruise!

PICC line was removed today! Yesterday was as hot as hell and I had two big bag leaks. My stoma is changing size so quickly; I can’t keep up yet. I’m still nervous about touching it and hurting it – even though I can’t feel anything when I do, it’s just a mental block because it’s so red and physically real – and myself. My stoma nurse is wonderful though – despite how rough she was a couple days ago when she changed my bag in what felt like a rush – she’s now really patient with me and understands that despite accepting this as my new lifestyle, it is still scary for me. I physically shake when I change my bag – it’s very emotional; it’s something new and weird but it’s also because I knew I’m actually weak as anything and I get so tired from doing anything physical. Since the TPN feed stopped yesterday, I’m shattered. Eating normal food and actually the task of eating is so weird after weeks of not being able to. And getting used to my new bowels waking up and getting used for the first time feels really odd too; like I’m bloated. So I rest after every meal. Keeping hydrated is tough too. Ileostomy surgery isn’t just about recovering from major bowel surgery and managing a stoma; it’s about a complete lifestyle and diet change because I have no colon. It is responsible for so much, something you don’t really think about, consider or actually understand until you don’t have it anymore. Luckily, we were prepared – or had the time to be prepared – and understand the limitations I have now but also know how to help me get the right nutrients in the right way. But that is maybe another post for another day.

Now the line is out, I am free to shower. So that’s what a did a couple of hours later – I have a pressure dressing on to help the line incision close so waiting was advised – and it was delightful. I felt normal even if it was only for 10 mins. Unfortunately, not knowing how long to be under the water for, my bag started to peel so I changed it on my own. Chalking up another one for the experience.20160828_094041000_ios

I had one of my IBD nurses visit me yesterday after the Bank Holiday weekend and to find out how surgery had gone. I was also told I’ve had my Vedolizumab funding renewed and I could restart that pending approved by the Gastro MGT that was meeting that day to discuss my case. Even though I only received the three loading doses, I was never removed the list. When we first discussed surgery all those weeks ago, my IBD nurse who overseeing infusions pre-emptively applied for funding renewal; just in case. Looks like it was quickly approved and a good forward thinking plan. I could receive this once I was signed off – 6-8 weeks’ post op taking me to approx. mid October, maybe sooner if there was space. My treatment plan was all falling into place.

Thursday 1st September

My surgeon was back off annual leave and came to check on me. He was over the moon to see me so happy and well; he had left me in the capable hands of his ‘second in command’ and his team of surgical fellows. My scar was already turning a wonderful mixture of yellow and light purple bruises and was starting to get tighter when I moved. I knew things were going the right way. He was happy for me to go home the following day. I had my first lot of blood taken for over a week to check my CRP and WBC. This is day 20 of this admission. I was desperate to go home.20160830_145353000_ios

The most frustrating part of any hospital admission is waiting to be discharged. This time was no exception: I had to be seen by nutrition, the colorectal nurses, surgery and medical teams then get my paperwork together and my medications from pharmacy. Waiting on pharmacy is always last on the list and always takes at least a couple hours. Hoping for leaving before dinner time is just unrealistic. I got information from all teams involved in my care; including advice on what to eat and drink to help me gain back my lost weight, what to have to manage my stoma output, things I needed to avoid and what I now needed to add in and be aware of – having no colon means I am deficient in some nutrition because I have no organ to help me absorb it, I would be prone to dehydration, how to avoid blockages, how to thicken my output etc – and got my stoma supplies. These would be enough to last me until my first check up in stoma clinic the following week. Now it was all about waiting for my medications before I could be discharged by the ward. That happened at 7.30pm that evening after a long and frustrating wait.

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Going home was strange. I hadn’t been outside of the ward for over a week, so smelling fresh air was absolutely wonderful. Being in a car and being driven home was surreal. I was trying my best to not think about how huge this all was and how things were now going to be so different; I was out of the protective bubble of the hospital and would be home. I’d looked forward to home comforts for a while at this point but I was beginning to get scared. What if I couldn’t cope? What if I needed help? How was I going to do everything? Would people be there to help me? When would I be able to do stuff for myself? What if I got sick again? These questions and a million more, I had to hold it together, at least until I was alone.

That weekend was going to be a test of how well I felt and how I would cope.

The week that followed would also test me.

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April 2016

April has been busy. I’ve been to three big appointments to determine what’s going to happen with my treatment.  Its been decided that surgery is going ahead. That happened the day the boyfriend and I went on holiday to Cornwall in the middle of April. A week away from the stress of life and being able to just sit on the beach and be relaxed really helped. If I could do it every month, I would. Thus, started the dreams of living closer to the coast once I’m back to feeling better and hopefully on the road to remission.  I […]

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March 2016

March, boy have you been dreary. I’ve had the delightful experience of my colonoscopy this month and its outcomes have yet to be discussed with me between my two doctors – my consultant and the surgeon. That is happening in the next couple of weeks before I go away on holiday for my birthday with the boyfriend. I’m hoping for some clarification on what is going to be happening and when. My scope did show a almost 100% clear colon with only really bad disease located in the terminal ileum and small bowel – which was expected to a degree […]

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February 2016

February, boy has it been a turbulent one, on the health front. For the past couple of bleary months, I’d been expecting my treatment plan to fail. I was looking at a last chance saloon with Vedolizumab as soon as I started it way back in October, but to have it official fail on February 5th was abit of a shock. It meant I had to kick my butt into gear and get something else sorted. Which had to be something I had yet to try, something outside the realms of conventional medical therapy. I should have known it would […]

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January 2016

The beginning of the year is always difficult. I have, for the years I’ve been diagnosed with Crohn’s Disease, been able to avoid any major problems at the festive period; even when I was first diagnosed and just having started Humira without a clue how amazing it would be. So I came into January unsure; of what this whole year would bring me, how quickly I would find a new treatment plan and how rubbish I would have to feel to get to that point. On NYE I got my appointment to see a surgeon to discuss – very briefly […]

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Hello 2016..?

I started 2016 in pain, surprise surprise! I slept through all the new year celebrations, awaking groggily in the morning, trying to find some strength. Why would I need to find strength knowing it was a Bank Holiday weekend, I hear you ask? Well, I’d received a letter the day before; a consultation with a new doctor at my hospital, a surgeon I found out once I’d Googled him (something I don’t like doing but curiosity was killing me) and I was going into over drive as to why and boggled by the short notice. Was something wrong? Was I […]

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2013 in review

This blog turned one year old on the final day of 2013. Those sort of moments tend to allow one to reflected on the past twelve months. When I consider how long and short ago January 2013 was, so much has happened! Here are my highlights. The big achievement for me was not getting admitted into hospital. When I was taken off my Humira injections and left with medication options that didn’t work for me, I seriously wondered over the summer how long I could last without admission. It had been a rough spring for me, I had to cut […]

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25

Today, April 16th, is my 25th birthday. Now, more than ever in my life, I get told I do not look my age. Currently, many people think I am hovering around the 20 mark. This has provided my parents with much glee, as they get told they are not old enough to have a 25-year-old daughter. I guess that makes up for all the times when they were always told they were not “old enough” nor “prepared enough” to have a very sick daughter. I can’t help but feel wistful today. Mostly because there isn’t a day that goes by […]

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“… The best you can”

I find myself relating this more and more. In the start of Crohn’s and this “adventure”, I thought I was going to be one of those patients / sufferers that was always honest about everything. But I soon learned a very important personal lesson. It is simply exhasuting doing that. Put simply, life gets in the way of being honest. Not everyone wants to know the details of your life, be it whether or not you’re in pain. Constantly being asked if you’re okay is frustrating and very irritating. So you start to just say that dreaded word “fine” and […]

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Hi my name is Louise

And I have Crohns Disease. But you probably already knew that. Crohns disease affects my life every single day. If its not my awfully cranky guts or my sore butt, its my joints and my fatigue. Its an ongoing battle and maintaining my remission is often draining – both physically and emotional. I am often fraught with frustration and anger, because nothing about CD is fair. It is utterly life changing and feels like a problem child. Despite this, I’ve learnt so much about myself this past year. I’m stronger because of my condition. I’ve changed and I think its […]

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23.59 00.00 00.01

The whole philosphy of everything must or will change once the clock strikes tweleve and one day – and here, one year – ends and another begins.. This blog is primarily for my Crohns journey and will continue this way into 2013, but I want to be ambitious enough to add new features and posts to my usual blog content. I hope that my health will allow me to take advantage of the time I have to make this happen. But as I’ve learnt this year, my crohns can’t be tammed in an instant. Nor can it be “fine” every […]

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2012, a recap

We’re here, the final day of 2012, and I am sat realising that this past year has flown by yet again. That feeling doesn’t surprise me, but the lack of fear I have about the year coming up does. I started 2012 extremely unprepared. I had just finished a couple of weeks stint in the hospital, had just started Humira – yes, its been a whole 12 months of needles in my thigh and monthly blood tests – and was extremly cautious but keen to start 2012 without any further admissions. I kept my promise, I’ve had no mishaps that […]

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NYE – New YOU Entirely

In true Louise fashion, the dawn of the new year had brought up all the emotions regarding my review in three weeks with my gastroenterologist. I spent last winter in and out of the hospital because without fail, my guts decide it wouldn’t be too horrible for me to go without some sort of hospital visit; be it a day in for a procedure or a check up, bloods or a short stay. This year, I’ve remained healthy, and for the most part that is due to my care into maintaining my remission. It is the combination of taking care […]

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You can quite definitely tell that Autumn is upon us here in the UK. I am currently on my holiday week off from work, with very little energy to want to go out in this cold weather and destroy all that hard work I’ve done to build up my immune system. It’s also giving me plenty of time to reflect, for September, especially the dates of this week, are poignant. A year ago, give or take a couple days, I was back in the hospital for my second flare up of Crohn’s. It is also the birth of this very […]

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“Remission”

In Crohn’s literature, remission is a term not vastly used, unless talking about the predictability of it when a patient is taking a certain medication. It is defined as ” the state of absence of disease activity in patients with a chronic illness” and then adds; ”with the possibility of return of disease activity”. I, for one, have servere Crohn’s Disease and take bi weekly Humira injections at 40mg to keep my symptoms at bay. For me, remission means not pooping more than twice a day and a pain free belly. I could also add in no achy joints, but that makes it […]

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Happy Birthday dearest Bernie..

I have just come to the end of a full week’s worth of work, so apologies for the lateness of this post. Friday was my Crohniversary! I sadly spent it doing what I only wished I was doing a year ago; being at work. September 7th 2011 will always stick in my head. It was the day they shoved a camera up my backside and told me I had Crohn’s. It was shocking and scary, my experiences of Crohn’s up until that point was through my disastrous ex boyfriend, who spent lots of time before and during our relationship denying […]

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June 2012

This month, alot like the others, has flown past. It’s now July, the seventh month of the year.. and I can’t quite believe it. It’s been a busy month. Been at work almost all month without incident or pain. One day caused me to leave work early, but par that, I’ve been symptom free again this month, just a little bloating and uncomfortable moments, but they soon pass. I visited the Day Hospital at Good Hope on the 12th and received my first Iron Infusion, which went well. It took almost two weeks to kick in and give me the […]

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It was December 15th and I finally felt good. I was a month out of hospital and just had a Humira injection – one of the first amazing few – and was home alone. I came upstairs into my room and got my make up out. It had been months and months since I had even opened the bag and felt any inclination to feel ‘pretty’. I took out my mascara and my favourite eye shadow and began. I then found my new dress – the one I had brought the only day I had shopped in all the time off I’d […]

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May 2012

Considering how much I fear May in last months post, it wasn’t as scary as I once thought. I have been symptom free from my Crohn’s all of May. I’ve taken no time off work for any problems related to my Crohn’s, excepted my already allotted days for hospital appointments. I visited Good Hope twice in May. The first on the 15th for my clinic appointment. Found out I need an iron infusion to help remedy my anemia and that I need a full colonoscopy this summer. Looking forward to that one..! My second visit was a week later on […]

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