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 ....
Sunday, 18 August 2013
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.
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.
Saturday, 17 August 2013
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!
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!
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