I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me.
Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT). Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further into recovery the patient went.
Given how well I had been recovering in hospital and how I was discharged after six days, I counted my lucky stars I got away with a small wound infection a couple days after being released – which healed up well with a week of antibiotics – and nothing more sinister. Unfortunately, it seems my bad luck was only just starting as this diary post explains only too well..
Thursday 16 June
Been admitted for bowel infection after my operation. On two lots of antibiotics for 3-5 days with a review of my inflammation on Saturday. Bloods were raised and over 150 on the inflammatory markers. Glad I came in!
On the surgery ward in a side room because of my butt but I am doing okay. Once I’d had my emergency CT scan yesterday evening I did calm down and once I’d had more Codeine and Oralmorph, the pain in the abdomen really settled down. I actually feel hungry! But I’m only allowed free fluid to flush this infection through my bowel without the distraction of food coming through too.
They concluded – at least at this point – it can’t be a Crohn’s flare up; it’s too early after surgery. Especially after they removed my diseased portion and ran my bowel for other signs of active disease; thankfully there was none.
Friday 17 June
Saw my surgeon today. He examined my abdomen and it’s still tender but the pain is going down with Codeine and Oralmorph. I can have that on discharge to help control it whilst I work towards getting my bowels and my appetite back. Yay!
Already being switched to oral antibiotics and need to take Metronidazole for two weeks then return to see my consultant to make sure enough progress is being made. Its possible that there has been a very small and slow leak on the new join in my bowels, and this has created an infection but it is beginning to resolve itself with the antibiotics.
They can organise for me to have day release from hospital over the weekend if I want. I could go during the day and come back for the final drug round in the evening. I’m having my bloods (cultures) checked on Sunday before they consider my discharge.
I can now eat and drink but need to stick to a low residue diet to not aggravate my delicate and inflamed bowel.
We discussed using Lopromine (Imodium) to help maintain my bowel function which I will need to manage until next OPA.
Saturday 18 June
I’ve had a very crappy night. Been up to the loo quite a few times and my pain has really increased.
Got given my antibiotics this morning and after going to the bathroom, I was sick and up the two tablets came, only slightly digested – which hurt my throat a lot. A very unpleasant experience I do not wish to repeat.
After saying no to breakfast, a nurse came by with some Oralmorph for my pain and did I still want to go on day release? I asked if the sickness would be a problem; she said no but they would need to keep the cannula in just to be safe for later on my return.
So I got collected at noon, went for a cheeky Mc Donald’s with the boyfriend, purchased some Father’s Day gifts and came back home for a wonderfully relaxing bath – which admittedly was tricky with a bandaged cannula…
Mom had cooked dinner – Spaghetti Bolognese; one of my favourite meals! – and then I’m heading back to hospital about 8.30 for the late drug round. I took my antibiotics before dinner – pre-empted with some anti sickness beforehand – I was feeling pretty good, all things considered. I’m sure my pain will come back later; I just hope it’s not when we’re eating dinner. I’ve really been missing food.
The nurse who gave me my meds on my return said some words on encouragement with taking tablets; take them the best way that works for you. So they snapped my Metronidazole in half and I halved it again and took them with strong squash, no problems. Just gotta do that three times a day for two weeks…
Sunday 19 June
Been let out of the hospital again for the afternoon.
This morning I felt really well even though it took quite a while to get to sleep last night – didn’t fall asleep until about 1-1.30am. I took my morning tablets – my final Ciprofloxacin, I later found out – and had some breakfast. Very nauseous after that and a cuppa tea so I tried to sleep again, with no luck.
Was contemplating some Oralmorph but it was too close to being collected but I can have that on my return.
I had my bloods taken for tomorrow morning’s ward round but the weekend (on-call) consultant is happy with how I’m progressing. When I mentioned the return of my stabbing right sided pain (which returns after 1-2 hours of taking codeine) he ‘hmmmm’ed abit. From the slightly muted conversation I heard him have outside with the nurse, it’s up for discussion at ward rounds. Maybe they discharge me with stronger painkillers? Unsure at this point.
Came home and watched the F1 and then had Sunday roast with my parents.
I still feel quite nauseous and I’ve got just my Metronidazole and Codeine to take after food but now I’m shaking abit and feeling like I could just nod off. I felt very drowsy earlier in hospital and did have a few minutes but it’s weird sleeping so suddenly in a side room. It throws me off so quickly and I panic abit. But being at home is just as panicky.
Monday 20 June
Expected to be discharged today but had another awful night of pain and many BMs.
On discussion with the doctors on the ward round, they needed to get my persistent nausea and lack of appetite under control before they could let me go. Surgeon confirmed this; I would be here for another couple of days. Spoke about my pain and he recommended increasing the painkillers to four times a day along with my Metronidazole three times a day. He said it would just be taking a while for this infection to die down enough to have more appetite but we could supplement my diet with some Fortisips. Once we have got the schedule of medication worked out, the appetite should come back; and it has today. I feel brighter and I’ve been able to see some positives over the thought of my Crohn’s already potentially returning.
I’ve noticed a ‘rash’ on my forearms that I appeared suddenly over the weekend and found out it’s actually Erythema Nodosum – a skin complication / symptom which only affects 1-2% of CD patients. Nothing to worry about; it’s something I’ve had before and simply means my body has gone into overdrive with the process of having surgery, the GA, the removal of bowel, the removal of the ovarian cyst and the combination of drugs over the past couple weeks. It will get abit worse then recover; like it did last time (4 years ago, Oct / Nov 2011)
Instead of seeing my actual consultant as promised today, they sent down someone else in his place – a GI with which I have a strong dislike towards because of his ‘philosophy of dietary modification’ (all of which I have tried before!). He suggested I try juicing instead of medication to help combat my Crohn’s symptoms. This is advise given just five weeks after surgery, whilst I’m in hospital with a small anastomosis leak and bowel infection! Let alone the fact they have so far ruled out a Crohn’s re occurrence – my surgeon confidently reminds me every day he removed it all in surgery last month and it is FAR too early for it to come back! Specific Crohn’s medication would be something I would discuss with MY consultant, which was agreed to before surgery and up for discussion at my apt on July 5th. He has really really wound me up.
I have been able to manage both lunch and dinner today; a big plus for me. Also had a Fortisip after dinner and I feel quite good. Having lots of gas which is weird but making me feel normal.
I’m hoping tomorrow I will have a date for discharge. I just pray and hope that my medications are sorted and the regiment is crystal clear before they send me on my way. I MUST ASK QUESTIONS IF I’M NOT PROVIDED WITH THE INFORMATION STRAIGHT AWAY.
Tuesday 21 June
Don’t feel exceptionally awful this morning, just the usual nausea but it did ease enough to try some breakfast for the first time in a few mornings.
Mr Raju (my surgeon) came around to see me. Reassured me that he was diagnosing this admission as ‘a slow and small anastomosis leak leading to bowel infection.’ He assured me that it was resolving itself with all the fluids and antibiotics and I was heading in the right direction now. I still needed to eat more before he would feel comfortable discharging me from hospital. I explained how disappointed I was about being asked to juice and adapt my diet; he agreed it has merits but it’s not the right path for me at the moment. The next IBD MGT meeting was taking place that afternoon, so he would be discussing my case with my own consultant to determine the next steps.
Trying to keep busy and occupied in here has been generally difficult. It’s a shame I can’t get any wi-fi on my laptop so I can at least upload my feelings and thoughts directly to my blog. I can in the meantime get as much written up as I can. Trying to explain about the ups and downs of recovery is harder each day; time has passed by too quickly and I’m struggling to remember some aspects of my recovery because of how drowsy the codeine has made me. Being unable to remember things really makes me sad and confused.
But sleep eh, who needs it? I know I do! I struggle to sleep the whole night anyway but with the coming and goings on the ward, it makes it even tougher to try and nap in the day due to the noise. So I’m in in a constant flux of having tired eyes that I “just need to rest” – ugh.
Wednesday 22 June
Woke up feeling quite good. Took antibiotic before breakfast with tea and got set on waking up, not knowing if I was going to be able to go home today.
My surgeon came in not long after to check my abdomen which is still soft. I said I was quite excited; I’d had a good, solid BM yesterday evening! He said my aspirations are simple but good natured! He was very happy about that aspect of progress – I suppose as all bowel surgeons are – and said he would get my paperwork sorted out and I could go home today. But with the warning that I really do need to speak up sooner if I am in pain like this again. And if I need to take painkillers like the Codeine, I needn’t worry too much that things are taking too long to heal. They take as long as they take.
I’m to continue my three-times-a-day antibiotics for another week and he would be taking interest in the outcome of my next GI appointment with my consultant on July 5th. We will be using that appointment to discuss my Crohn’s medication – if I needed any, what it would be and when we would start them. They might need to do a capsule endoscopy in the Autumn but that would depend on lots of things but it’s there in the pipeline.
I’m now sat in the hospitals discharge lounge waiting for boyfriend to collect me, as my paperwork & medications are almost ready!
Looking forward to being home. But the safety net of being in hospital; being monitored, able to call for help, regular meals I haven’t had to prep or cook myself, advice when I need it and my own space… It’ll be difficult to give up. It’s emotional.
This time being in has been a very positive experience. From A&E last week until now; I’ve got nothing but positive feedback and I’ve had a good time here. Four years after my first experiences of hospital – before diagnosis and the months following it as we tried to get control over my disease – I knew I needed to be in and I completely understood what was happening. I was able to communicate with my team and get sorted.