Earlier this year I had a major operation; a right hemicolectomy due to a complication of Crohn's Disease. The Crohn's had caused a leak on to my Psoas Muscle and it turned into a very nasty abscess containing 300ml of pus (sorry I know that's gross). A Psoas Abscess is actually quite rare, and I had been unknowingly suffering from this life-threatening condition for months. When I say unknowingly, that's not 100% correct because I had been suffering in dreadful pain for a long time, it was so bad that I limped and I had great difficulty moving in bed, driving the car and straightening my leg. I had been sent home from the Emergency Department three times whilst this was going on with steroids.
I had also been to numerous doctors and all of them 'assumed' it was Crohn's Disease pain. I have been living with Crohn's Disease for over twenty years and I have never suffered anything quite like this. A CT scan discovered I had a 4 cm mass on my cecum (I don't have a cecum anymore as you will find out when you read on). This mass was Crohn's disease and quite frankly I did not believe any amount of drugs could get rid of it, so I suffered and prayed it would all go away. Which of course it didn't.
On my fourth trip to the ER over a period of about 4 months, I was finally admitted into the hospital. They didn't really have a choice, I was grey in colour, I could hardly walk and the pain showed on my face. Later, my friends and family told me that I looked so sick and in pain and once when I had not seen my youngest daughter for a few months she did not even recognise me because I was so frail. I went from 69kg to 56kg in less than a year.
During this time I thought I would never be well again. I've written more about this on one of my other websites - "How A Psoas Abscess Could Have Killed Me".
Once I was admitted to the ER ward I was later transferred up to the surgical ward that night. The next morning I was told by the man that was to save my life, Dr Ghaly, that I was having an operation that morning. I was overwhelmed by this news and although I've had over a dozen laparoscopies for endometriosis, I've never had a major operation like I was about to have. I was wheeled down to theatre at 11.00 am and I woke up again in recovery just after 2.00 pm. I was in agony, felt nauseous and wished I could go back under the anaesthetic.
I had a catheter for urination and a drip feeding me copious amounts of strong antibiotics and painkillers. If there is one piece of advice I will give you if you are facing an operation like this, take the painkillers! I was on Fentanyl for two days which was heaven but when I came off it all hell broke loose. I have never experienced such pain. I was given Targin, Morphine and Endone for the next 5 days and although these drugs took the edge of it all, the pain was horrendous. I actually spent the next two months sleeping upright on my back as I just could not move without pain. In hospital I also had a drainage tube under my scar and I found this very painful and uncomfortable. On top of all this I was nil by mouth for six days. I dropped down to 52kg. For those who don't know, a right hemicolectomy is the removal of the right side of the large colon.
I am writing this post for those of you that are facing a hemicolectomy to give you an understanding from a patient's perspective of what goes on. This story is also for anyone that has been diagnosed with a Psoas Abscess that is looking to relate to someone else that has been through it. Below I am detailing in sections different parts of my journey. I hope it helps you if you have found this page because you are scared of what's ahead or you have just been through it and maybe still in shock. It is now 3 months since my operation and I think I may have some post traumatic stress as I do get a little bit of anxiety of what could have been. However, I'm still here to tell the story and I have the scars to prove it.
MY PSOAS ABSCESS SYMPTOMS
Fatigue: like I have never experienced in my life. This fatigue is not like being tired. It is an overwhelming collapse of body! That might not make sense, but all I can say is even hanging out the washing was like climbing a mountain. I would be desperate to get up and be active and go for a walk, do the washing, clean the house but my body would not let me. I spent hours flat on my back and would go to bed at 6.00 pm and stay there for 12 hours. It was one of the worst symptoms of the whole experience.
Pain: the pain was on a scale of 1 - 10 on the day I went to hospital 10! Prior to that between 6-8. It was so bad I could not drive the car without using my arm to help my right leg use the brake. I couldn't even walk properly.
Night sweats: I knew this was not menopause as I had breezed through that ten years ago. I would wake up 4-5 times a night drenched so bad I had to change my clothes and sleep on a towel.
My right leg would not straighten: It was excruciating pain to try and straighten my leg. When I tried to get out of bed, it was actually a planned manoeuvre to avoid pain and it still hurt like hell.
MY CROHN'S SYMPTOMS
Fatigue: Initially not as bad the Psoas abscess (see above note).
Pain: I always had pain on my right side. A few years ago I had a carcinoid cancer scare due to the pain but thankfully it turned out to be Crohn's scarring.
Frequent bowel motions: mainly during the morning up to 6 times in two hours. I have been pretty lucky that this doesn't happen all day like other Crohn's patients but believe me when you have to go, it's very hard to control not having an accident. In bad flare times I avoid walking in the mornings.
THE HEMICOLECTOMY OPERATION
When I arrived at theatre there were a lot of identification questions and cross checks
The theatre was freezing!
I was transferred from my bed to the slim operating table and that's when I started to get a bit panicked.
I distinctly recall being amazed how many medical staff were in the theatre that would be part of my surgical team (I think all up 8).
I heard the medics talking about putting a catheter in me and I piped up "I hope I will be asleep when you do that" I was quickly assured I would be.
My nerves were getting up now, I remember two of the surgical team counting the instruments and cross checking with each other.
A pair of boots that went up to the knee were put on me (they electronically massage the legs to help prevent blood clots). They felt heavy.
My heart was pumping now, I just wanted them to knock me out I was so nervous.
The anaesthetist had already put the cannula in my poor vein (it was hard to find one that would take it as I have very tiny veins) and I remember he was preparing the drugs.
I remember the team surrounding me and Dr Ghaly looking down at me.
The anaesthetic nurse put an oxygen mask on me and told me it was to help me to breath. Within two seconds I was asleep.
The operation took over two hours. They removed my right ascending colon and drained 300ml of pus from the Psoas abscess.
POST HEMICOLECTOMY
I woke up in agony and scared
The boots were kept on me for a few days. They were heavy but I quite liked having my legs massaged by them.
A few hours later I was back in the ward with a catheter and drips
I could self medicate on Fentanyl for two days
The pain was awful and I had no need to get up for the first day as I had a catheter and my bowel would be asleep for the next week
Two days after I lost my best friend, Fentanyl, and the pain hit me like a ton of bricks
The medical staff made me get out of bed with the help of two physiotherapists. It was hell!
Moving in bed was agony and trying to get to the bathroom even worse.
The drips were pumping in copious amounts of antibiotics. Each time I needed to get up to pee I had to have the nurse measure the output in a pan. With the drip pumping fluid into me, my pain making it a marathon to get out of bed and to the bathroom, this was very difficult. I did not complain.
I saw my scar for the first time and it went from over my belly button to my right side and was the image of Frankenstein. I knew I had to accept that this was here with me forever and I was very grateful I did not need a bag.
My first shower was wonderful but at the same time very difficult.
I lost all my modesty. I couldn't care less anymore.
The drain was terrible and it was to stay in even when I left hospital (more later).
My back developed a painful rash due to only being able to stay on my back and the plastic sheeting under the sheets. Next time I will be taking a sheepskin rug or similar to lay on. Hopefully there's not a next time though!
I could not have any water or food for six days and until my bowel 'woke up'. They were talking about giving me Total Nutritional.... because I was so tiny and my bowel wasn't waking up. Thank God it did before they did that to me.
I was on copious amounts of painkillers.
When things started to work, I could eat a few things and was finally allowed to go home with the drain still in. Dr Ghaly said it would fall out by itself. This was so awful and painful but I'm pleased to say it fell out that night. My daughter picked me up from hospital and I stayed at their place. I seriously could not get out of the hospital fast enough but I admit I was scared on my first night out of there.
Dr Ghaly took my staples out about 10 days later. It hurt a little bit but I was so relieved to have them gone. I'm still numb in the area where the surgical cut was made.
It took me two months before I had no more pain and could walk properly again.
My scar has now heeled and it's not too obvious (three months later).
LIFE NOW AND HOW I HAVE MADE THIS INTO A POSITIVE EXPERIENCE
It took me nearly two months before I could walk properly again, but now I'm totally focused on being fit and I'm fitter now than I was before I started to get sick.
I'm truly grateful to be alive.
I take more time out to be in nature and to meditate on the beach.
This has taught me to live in the moment, as we can't go back to the past and we have no idea what tomorrow brings. We just have now.
Rather than be obsessed with my diet I have adopted the 80/20 rule. 80% of the time I'm really good and stick to the plan and 20% I'll have a treat like chocolate, fish n chips etc. I focus on eating anti-inflammatory foods.
Because I was still in a lot of pain a couple of months after the operation I had another colonoscopy and a gastroscopy which unfortunately revealed Barrett's Esophagus and more inflammation around my anastomosis (where they joined the large colon to the small bowel). My surgeon and I have decided due to the allergies I've had with some of the Crohn's Disease drugs to just watch and wait.
My scars remind me that I went through something really bad and I survived and that makes me strong #crohnswarrior
PRESCRIPTION DRUGS
Endone and Targin helped me through the first few weeks. I was acutely aware of not becoming too dependent on these drugs as they are very addictive.
I'm on life-long medication for the Barrett's Esophagus.
I hope this post has helped you if you are facing major surgery for Crohn's. Believe me, those horrible few weeks do pass and life gets back to normal.