Going under General Anaesthetic

The surgery didn't just happen to me. I had been consulted along the way. The surgeon had explained I had two options; to do it laparoscopicly, which would mean two small inscisions in my abdomen, and they do it via a camera, or to do it as open surgery, which would mean a larger cut. She said the camera was excellent, but nothing compares to looking with your eyes and feeling with your hands, and she wanted to ensure whilst she was in there, she removed all the diseased areas.  To me, the only difference it seemed to make was how bigger scar it would make, I would be asleep for it either way.  I said I'm happy with it being open surgery, my bikini days are over after two children anyway. She simply smiled and said they do there best to be neat.

I was also consulted about anaesthesia.  The anaethitist came in and explained that he liked to put an epidural in whilst I was still awake, so that he was sure it was working well, and then I would be put under General. He asked if I was ok with this, and whether I'd had any adverse reactions to anaesthetics. I told him I'd never had an epidural and the most I'd ever had was local anaesthetic before. He seemed a little surprised at this. I remember making the odd joke, trying to put myself at ease as I was feeling quite anxious. He did not laugh or even crack a smile during our little meeting. He was a very serious man. I guess anaesthesia is after all a very serious job to be performing.

I was left alone again for a couple of minutes, and then another member of the anaesthesia team came to collect me. He was a tall man with a very kindly face. He spoke with quite a strong devon accent, very gently and quietly. He was in his scrubs and I remember thinking how clean he looked! I suppose you need to be pretty clean if you spend your working hours in a surgical theatre.  He pushed my bed through the hospital and into a lift. All the time he made conversation with me. Asked me what I did for a living, if I had children. How long I'd had crohns, whether I'd had surgery before. He put me completely at ease.

I went through a door with a sign above it; Theatre 1 and I felt a pang of fear. This was it. No going back now. Through the door was a sort of atrium, with a whole team of anaethitist's there. The serious man from earlier and another man and a lady. I had to sit on the side of the bed while the epidural went in, and the lady chatted to me about my children. I felt very  at ease. Then I had to lie down. I was told I would go to sleep and it would feel like I'd only been asleep a few minutes but it will have been hours and the surgery would be done.  I don't remember much else. I can't remember if they put a mask over my face, or closing my eyes. The next thing I remember was walking up in recovery.

waiting for surgery for five days

I spent the next five days waiting for somebody to tell me that they were going to operate. I was in a private room at the edge of a ward, with mainly old people, at least one of whom was suffering with dementia. I was taken up to the ward in the middle of the night. It seems movement of patients between wards happens at night when the corridors are quiet.  I have never felt more like a piece of furniture. The porter who moved me checked I  was the right person by reading my name to me off a sheet. He mis-read my name, which I corrected him on, but then continued to call be by the mis-read name.  Him and the other porter then chatted away as they pushed me through the hospital, as if it was an empty bed. I was pushed into the private room, and none of the nurses said anything to me about where I was and what the plan was.  Two ladies kept calling out in the night, one of whom kept trying to get up to "catch a bus" and had to keep being reminded that she was in hospital.

At the time I was annoyed because nobody seemed to be telling me what they were going to do with me.  In hindsight, I realise that nobody knew what was to happen. I was on a list, that was constantly changing depending on how priorities changed.

In the five days a lay waiting in my little room, I Felt a fraud. Now the obstruction was clear, I Felt very well, and just sat around, reading a book, watching telly, and waiting for visitors to come.

I expected my consultant to come and see me at some point, but he never did. Finally, after five days, a surgeon came in to see me.

She explained that the scans showed considerable strictures, and surgery was the only option. She drew a diagram showing the areas that need to be removed. She also said that from the scans it looked urgent, but looking at me, she was in two minds because I looked so well!

She went away for a few minutes, and then came back and said she was going to try and get me into surgery that afternoon, so as from that point I was nil by mouth.

I felt nervous then. I had never been under General anaesthetic before, and this was major surgery. I tried to get my husband to come and see me in case I went to theatre. He had a busy day at work,and couldn't get away. This made me even more nervous. What if something went wrong and we hadn't seen each other?  It turned out I didn't have time to be nervous though, as within minutes the anaethitist was in talking to me and then, I was signing forms, and being wheeled down to theatre! All of a sudden, it was all very real!

An in-patient at the hospital

I had now been in hospital for 24 hours.  I looked somewhat of a state by now. There was a
Tube dangling out from my right nostril, I was in incontinence pads and a backless hospital gown, there was a saline drip going into one hand and a cannula in my other hand for other intravenous requirements and another cannula left by the ambulance men.  My husband came back, thankfully with a clean pair of pyjamas.  I was so worried about how he might see me now with a stoma and a plastic bag full of poo constantly attached to the outside of my body.  I know a man who had a wife with crohns. She needed a total colectomy, but he didn't want her to have it because of how she would look. She didn't have it, and she died.  It turns out I didn't have to worry about this at all. My husband didn't care about such trivial things. He just wanted me to be alive, and most of all, without pain.  He even managed to lighten the mood by taking a picture of me on his phone in my hideous tube-wondrous state and then threatening to text it to his mates!

My consultant popped in to see me also. He had obviously only just got in to work for the day and had been asked to come straight to me. I could see him struggling to remember my case as he spoke.  When we last met he had been suggesting surgery, and I had probably seemed a little reluctant. He said, from what he remembered, the portion of the gut from the rectum to the sigmoid was free of disease, so he thought it unlikely I would need a stoma, just a resection. He said he would get me prepped for surgery, by prescribing iv antibiotics, and keep me in on a low residue diet. He would make sure the surgical team knew to do all they could to keep up to the sigmoid.

This was great news. They weren't going to just send me home again, they were going to keep me in until they could get me into surgery - as an urgent case, but not an emergency case.

I was moved up to a private room, on a ward full of very old people, some with dementia, but I'll save that for my next post.

clearing the bowel obstruction

Firstly, massive apologies for such a ridiculously long time between posts. I started back at work and seemed to run out of time!  So I left my story at the point I was about to go in for an urgent total colectomy.

There I was, laying on my hospital bed, tears pouring down my face while I let the news of my predicament sink in. Oddly enough, somehow I Felt that it was something I had done! Like I had not taken my illness seriously enough, and if I'd managed it differently, then I wouldn't have got this bad!  Of course this isn't the case, but it's odd the short of things that go through your mind at a time like this.  I had no more time to think about this, as suddenly two nurses came bustling in with the tube for my nose I had been warned about.

It was a long tube that had to go up through my nose and down the back of my throat right into my stomach. As one nurse pushed the tube, I had to drink a glass of water, so that as I swallowed, the tube could go down. Well, despite telling them minutes before that I wasn't sure such a procedure was necessary, the second  I began to swallow water, l was heavily sick, with a nasty, fecal smelling liquid.  It went all over me and the bed, and they put a bowl under my lap, all too late.  Again, oddly, I was apologising to them - as if I had had too much to drink or something else self inflicted.  Once the tube was in my stomach, one of the nurses, attached a  syringe to the end of the tube and aspirated off the rest of the fluid in my stomach. There was a surprising amount.

I had to remove my pyjamas, due to the mess that had been created, and the bed had to be changed, and then I was left alone in my hospital gown with my saline drip, and my mobile phone.  I texted my husband, my mum and my sister with the latest news about surgery in just a few hours and  then, I texted a work colleague to tell them, so they knew I wouldn't be in in the morning!

Then, the floodgates opened! Massive, completely incontinent diarrhoea! It kept going through the night, and I discovered that hospital incontinence pants are brilliant! Every time I went to the loo, I thought "tonight is the last time I am ever going to go to the loo conventionally. It was a weird feeling. I was sort of sad in one sense and relieved in another.

Nine o'clock in the morning came, and four surgeons came into my room. They asked how I was feeling and I explained I was feeling very much better since the uncontrollable  diarrhoea over night. The head surgeon felt my abdomen, explained that the x-xray showed three strictures in my large intestine and pressed where each one. Was. He then said that the blockage has obviously been cleared, and there would be no surgery today.

I just looked at him blankly.  "No surgery today? When will it be then?"

He was already half way out the door by now. He simply shrugged his shoulders, muttered about it depending who was more urgent on the waiting list and walked out.

I was completely dumbfounded. And now had no idea what the next step was. The next nurse that came in also had no idea, and had to chase the surgeons down the corridor to find out what the next step for me was if surgery was no longer happening today.

I was quite worried that this meant I was about to be sent home after all this.  Only to have it all happen again in a week's time. It turned out that I didn't need to worry about this. As I was to be in hospital for some time yet!

Hospital admittance with a bowel obstruction

Ok, so my last post brought us up to an uncomfortable obstructive episode leading to a trip in the ambulance to the accident and emergency department.


By the time I got to A&E  I was in quite a state.  The ambulance men wheeled me in, and I was still clutching a sick bowl.  I couldn't even sit up by this point.  The only vaguely comfortable position was on my left side with my head propped up a little.  My husband followed behind the ambulance in his car and it was a little while before he caught up with me, but he said, in his oh so gentle words(sarcasm) afterwards that I "looked like a beached whale" The whole of my torso was bloated, and fairly hard, and uncomfortable to press.  Every Doctor and Nurse that came to see me commented on my distended torso, and I kept saying. "It doesn't look too bad today, it's been worse!"

I think that I'd got so used to the strictures, and how it felt when I was bloated, that I hadn't realised just how bad it was.  I certainly felt the most unwell at this particular point, even if I didn't think I looked it!

As soon as I was seen by the Doctor, he gave me some IV antisymetics to stop be being sick, and some morphine.  By this point, I was happy to be given whatever they wanted to give me.  I just wanted the awful feeling to stop.  I held onto my husband's hand and remember for the first time feeling completely helpless and out of control.  I kept saying "I just want it to stop."  He reassured me that I was in the best place, and we were going to get it sorted once and for all.

It was hours before I was moved from A&E, up to the Medical Assessment Unit - where they properly assess and treat patients before either sending them home or making them an in-patient.  Whilst I was in A&E, they wheeled me into x-ray for a chest x-ray.  I'm not sure what the point of this was, as the problem was in my gut and not my chest.  It was possibly the most uncomfortable procedure I've had out of everything before or since believe it or not!  They needed me to sit upright to do it, and to hold my breath for just 2 seconds.   It was  almost more than I could bear to be upright and still at that point!

Eventually I was taken to the MAU, and put in a little side room.  Every so often a nurse would come in and take my blood pressure and pulse and note that I was in a lot of pain.  I was sick again, and they gave me another antisymetic. It wasn't until nearly 10pm (I had called the ambulance at 10:30am) that the registrar came in and told me that the x-ray I'd had done was pointless because it only showed my chest, and that they would send me down to x-ray my bowel and get a CT scan done.

The x-ray of the small bowel was far more comfortable, as by this time I was dosed up on morphine, and anti-sickness.  I'll describe the CT scan in another post as this may be of individual interest to readers and I'll give it it's own separate post.

Just before midnight, a surgeon came in to my room and sat on my bed ...

The surgeon said that the x-ray and CT scan showed that there were multiple stricures across my colon, and he suggested the Humira wasn't working as there was what appeared to be disease in my small intestine as well.  He just looked at me and said.

"What we are going to need to do is operate to remove the diseased colon - and it's going to mean a bag."

I looked at him.  Somehow it felt true and I wasn't particularly surprised that they would come to this conclutsion but it was still a shock, and I just simply whispered a profanity.

He looked at me and said "yes, I think I would say that too if I were in your position."

I asked when, if it was going to be in a few days, and he said.  "We'll look to do it later on today."  This is exactly what I or my consultant didn't want to happen.  We didn't want it having to be an emergency.

Just before the surgeon left he told me that there was a lot of fluid backed up in my small intestine, and filling my stomach as well because none of it could pass through the strictures. The fluid in my stomach was what was making me feel sick.  He told me that a Nurse was going to come and insert a tube up my nose and down my throat into my stomach, so that they could syringe out the excess fluid.  This would make me feel more comfortable and stop me feeling sick.  He then said that the Stoma nurses would be in in the morning to mark me up for surgery and talk to me about having a stoma.  With that he left.

I was left for all of about two minutes to contemplate all this before two nurses came in with the tube for my nose. I will leave that for the next post ....

Pyoderma Gangrenosum

In my very first post, I wrote about when I first developed crohn's disease. My condition was classed as mild to moderate, and I counted myself extremely lucky.  However, considering I had a mild to moderate case, I often think it odd that I seemed to get the other, rarer symptoms aside from stomach pain and diarrhoea.

I tend to get Erythema Nodosum on the bottom of my calves and shins.  These are round red lumps.  They look a bit like an insect bite, but there is no hole in the centre.  They are hot to the touch (this is because they are inflamed areas under the surface of the skin).  Sometimes they are itchy and uncomfortable, but not particularly painful.  I tend to use them a bit as a warning signal. They appear when the disease is active.  Once or twice I have had one large one appear - probably 10cm across, with a number or tiny "satellite" lumps around it.  The rest of my symptoms were relatively non-existant.

When I was pregnant with my first child, I had an Erythema Nodosum apear on my calf.  It was rather large, and it went from red to very dark red. It was quite itchy, and then one day the surface of the skin broke.  A small ulcer formed.  The small ulcer grew, and grew.  The pain was quite severe and instinctively, I lay on the sofa, with it open to the air to try and dry the wound out. Unknown to me, what I had developed was something even more rare in patients with crohn's disease than the Erythema Nodosum. I had a Pyoderma Gangrenosum.  The first time I showed it to the Doctor, I was prescribed antibiotics.  Somehow, I knew that these would not work.  By the time I returned to the Doctor three days later, the wound and become very pussy and black - necrotic.  The Doctor I saw this time immediately signed me off work for 4 weeks and referred me a consultant Dermatologist.  She then sent me through to the Nurse who dressed it with a special Ulcer dressing. It was at this point that I learned, the best way to treat an ulcer is not to let it dry out in the air, but keep it covered. The dressing kinda melts into the area, keeping it moist.

The Consultant Dermatolagist at Addenbrookes Hospital Cambridge was brilliant.  He put me straight on a course of prednisolone steroids.  He also gave me a topical steroid cream to place onto the wound before applying the dressing. I had to change my dressing daily.  This was not an easy task considering I was 7 months pregnant!  Just bending that way was difficult, let alone the pain it caused.  All this time I was unable to have a proper bath, and it was a hot summer.  Slowly but surely the ulcer healed.  Being the intriuged scientist that I am I wish I had taken photographs of the ulcer.

I had photos taken at the hospital, and they were probably used in a paper written by the consultant, but I didn't take any myself.  It's a shame because I could have posted them on this blog!

I now have a rather impressive scar.  It looks a little like a shark bite!

What is most strange is that through all this, I didn't experience any problems with my gut, and even remember telling the nurse that I was in remission!  I obviously wasn't, it's just that the disease was manifesting on the outside of my body rather than within my gut!

Anyway.  If anybody out there has come across this article and is experiencing anything similar then I urge you to ensure that your Doctor deals with it promptly.  It really was quite frightening how quickly the Pyoderma grew during the time it wasn't being treated properly.

Ambulance call

It was only a couple of weeks later that I experienced yet another partial obstruction.  I started to feel yet more waves of pain one Wednesday evening. I waited eagerly for diarrhoea to start. All night the pain kept coming. I started too feel nauseous, but still nothing happened all night. By the morning I started to be sick, and I just about managed to drag myself out of bed and down to the phone to phone my work and let them know I wouldn't be in. My mum kept looking at me anxiously. We discussed if it was time to call an ambulance. She kept saying "when will it be 24 hours"
I kept saying tomorrow morning. The consultant had said if I hadn't been able to keep anything down for 24 hours.
 Somehow I just knew I shouldn't, or even couldn't wait 24 hours. We tried to call my gp and my consultant for advice, just to avoid calling the emergency services if it wasn't necessary. We were still waiting for a call back from somebody, anybody, and I just said "just call an ambulance"  it was at that moment I really felt terrible. The vomit had become definite faeces by now. I was reaching right down in the pit of my gut. I was dizzy, it was brown, and the smell was wretched.

The ambulance was really quick to arrive. I didn't have to convince them it was an obstruction and not an ibs a flare that's for sure. They could tell immediately.


The ambulance journey to a and e seemed like the longest journey I'd ever made. The paramedic kept asking me what my pain score was on a scale of one to ten. If I wanted it they would give me morphine and an anti sickness. I knew that to do that they'd have to pull into the side of the road, a and the journey would take even longer. I just told them the score was two. I just wanted to be at the hospital. If I wanted to be at the hospital that badly, I must have been in quite a state! I must have used six or seven sick bowls in the one hour journey. Man was I glad to finally be wheeled into accident and emergency. What happened when I finally got there? Well you'll just have to read my next post to find out!