After being discharged from hospital in mid-December, I was now beginning the several month-long process of recovery from my skin flap surgery. The most important aspect of this was the strict avoidance of putting any pressure on the area from which the flap was taken and the area to which it was relocated. For me, this meant that I wouldn’t be able to sit down at all and I wouldn’t be allowed to lie on my back or right side. Yes, for several months I would only be permitted to stand up or lie on my left side in bed. This was probably the most challenging aspect of recovery as it meant that my poor left leg was taking on my entire body weight for several months. Now I’m not that heavy at all, but when you have the joint pains associated with Crohn’s Disease, it’s a real struggle to make one limb do all the work. If I’d been lying in bed for more than about 20 minutes my leg would start to either painfully seize up or go completely numb and I would have to stand up for a few minutes to “re-set” it. This also applied to nights for the first couple of months, so sleeping was generally short-lived and interrupted. I even had to build a pillow wall behind my back so that I wouldn’t accidentally roll over in the night. And it’s not just lying or sitting on it either, you aren’t even allowed to lean against anything- all pressure counts! The wedge that I bought for my bed was a real lifesaver during my recovery; it allowed me to watch TV and eat meals relatively upright in bed without breaking the rules. I also wore loose-fitting bottoms or stretchy clothing like leggings for a while to make sure that I was as comfortable as I could be.
As for the pain from the actual surgery, whilst I could feel it, it wasn’t half as bad as what I’m used to, so I was managing pain relief free. The social aspect of not being able to sit down was more difficult to deal with. After all, although I was just glad to be home, I did have to spend Christmas day watching my family enjoy their Christmas dinner at the fancy dining table through a doorway whilst eating my lunch lying on a bunch of piled up duvets in the middle of our living room floor! Present opening wasn’t that easy either, but I managed. Then when I was called into hospital on the 30th December to get my stitches removed, I was posed with the question of how on earth I was going to travel for 2 hours without sitting down or injuring myself in the process… Luckily we were able to book an ambulance to transport me on a stretcher for the many hospital trips I ended up having between December and March – but this came with its own series of issues. And the main one was ignorance.
I always got glared at for ordering an ambulance with a stretcher to transport me whilst looking otherwise “well”. The guy at the transport desk always looked me up and down and asked me three times if I was sure that I really “needed” a stretcher because there weren’t many of them to go around. I even got publicly scolded by a clearly uneducated and hostile woman in the transport waiting room. It started because, having had two major surgeries in the couple of months prior and feeling exhausted and in pain, I’d just had to wait over 2 hours standing up for my clinic appointment only to then be told by the transport team that my ambulance would take several hours more. I was therefore lucky that when we got to the transport waiting area, I found a wide cushioned stool type seat which I was just about able to lie down on (the other hospital seating is either individual chairs which I obviously couldn’t sit on, or linked chairs with arm rests which got in the way of me putting my legs up).
So, I was lying awkwardly on this barely big enough stool when this woman is brought into the waiting room in a wheelchair. Then another patient waiting for transport with a leg cast got told off for putting her leg up on the set next to her and the woman in the wheelchair took it upon herself to assume she knew my situation and start telling the woman with the cast very loudly across the room that she should come over and take the stool away from me because I clearly didn’t need it and was just being selfish and lazy by sprawling across it for no reason. I don’t even think she realised that I was a patient, I think she thought that I was there for my mum and that I was just acting like a spoilt princess and lying down whilst everyone else was sitting to get attention.
In actual fact, I was embarrassed enough not being able to sit down in numerous situations i.e. telling the phlebotomist that I couldn’t sit to have my blood’s done, responding “no thanks” when my doctor said “please take a seat” when I entered the consultation room and awkwardly standing up during my appointment, and trying to explain to the nosy transport operator that I’d just had surgery on my butt and REQUIRED (not fancied) a stretcher to get me home. Now, I understand that I may have looked okay to the naked eye and I may have been able to walk; its confusing. But you would think that someone in a wheelchair of all people would be less judgemental and presumptive. Apparently not. So, rant aside, I would like to tell everyone reading this, able-bodied or otherwise, NOT to assume anything about anyone who you don’t know, because chances are you don’t know everything, and your judgements are unfair. Needless to say, though I would’ve loved to have a row with her about it in front of the whole waiting room, I decided to take the high road and ignore her, so I stayed on my stool until my ambulance arrived. HA!
Anyway, I did get my stitches removed (mostly) on the 30th, but it was NOT easy. Initially, the nurse wanted me to lie on my front so she had a clear view, but my stoma was in the way. Then she suggested that I kind of half-sit, but I explained that I couldn’t put any pressure on the wound at all. So, without trying to be graphic, I ended up in a kind of sideways birthing position and I had to manually hold my leg to keep it still, while she picked out the stitches one by one. It definitely wasn’t the nicest area to get stitches removed from, but there we go! At this point it had been about 3 weeks since the surgery and the wound had not healed yet. I mean, most of it was together of course, otherwise they wouldn’t have removed the stitches! But there were a few gaps and it still leaked a little. Then after a long, painful and annoying day at the hospital and a cathartic rant about it with the paramedics on the way home, I discovered that the nurse had a left a rogue stitch in the most awkward area possible… So, I then had to call the district nurses to come and remove it that night. This proved more difficult than imagined as I had to lie in the sideways birthing position again but the light in my room was pretty shocking and for some reason this stitch was clear plastic and wasn’t even attached to the incision lines!? But eventually the nurse could feel it and managed to remove it, so I was now stitch free- yay!
I hit another down point that evening however as I was starting to feel a pain in my ear. I told the district nurse that I thought I had an ear infection brewing, but she said to just wait it out and make sure that’s what it was. And the next day I was sure, having barely slept through the agonising pain in my ear on New Year’s Eve. That little hiccup culminated in me having to get to my local hospital on New Year’s Day without an ambulance escort in order to get the prescription for the antibiotics I needed. It was too far to walk (and it was freezing!), so I did the only thing I could think of; I knelt backwards in my mum’s car foot-well. It was very bumpy, and I felt incredibly dizzy upon arrival, but I made it! I can’t say that I’ll be using that mode of transport again unless absolutely necessary- but needs must. And sure enough, I had an ear infection and a perforated ear drum. But I got some antibiotics and in the next couple of weeks I started to feel better.
My wound on the other hand was a bit up and down. Some days I’d wake up and have a look at it in the mirror and think it looked better, other days I thought it was getting worse. It took until about February for it to finally all come together and for the small openings at the base and the top of the flap to close, but there was still some over-granulation- which is essentially where red granulation tissue rises above the line of the wound. It can be quite sore and unpleasant but more importantly, it hinders the healing process. After having this checked by my district nurses a few times and dressed with a simple dressing, I went back to my hospital for a plastic’s clinic at the beginning of March to see if there was anything they could do to help it. By this point it had been 12 weeks since my surgery and, whilst that now gave me permission to start sitting down for short periods of time, I didn’t feel confident that the wound had healed enough to warrant me taking the next step in my recovery. Luckily my plastic surgeons didn’t let me down; they prescribed me a fusidic acid treatment (a mild protopic) and within a week and a half, the wound had finally healed all round without any excess tissue, and I could start sitting again!
It probably seems silly to most people that I was so excited just to be able to sit down, but I’d had problems with sitting since February 2019 when I noticed my first abscess collection. It had been over a year since I’d been able to just sit down (donut-cushion free!) without worrying or pain. And the transition wasn’t as bad or lengthy as I thought it would be. I probably started by just sitting for 2 minutes on my bed each day for 2-3 days. Then I sat down for 5 minutes for a couple of days, then 10 and so on… It took about 3 weeks for me to be able to sit down relatively comfortably for 30 minutes- an hour. I did unfortunately have to cancel an optimistically scheduled internship for the beginning of March because I wasn’t yet able to sit for long enough periods of time, but I thought it was more important to take my time (plus then coronavirus happened, so it probably would have been cancelled regardless).
Now, just over 4 months since the surgery took place, I can sit down within reason for as long as and wherever I like. Hard surfaces are still not too comfortable for me, mainly because my butt cheeks are no longer even, so one of them is a bit bony! I still get some occasional mild shooting pains if I’ve sat down for too long, but I think that by 6 months this will probably have improved. After all, it took 6 months for all the bruising on my abdomen to subside after my pan proctocolectomy. Other than that, it’s just going to be a question of getting used to the sensation of sitting again, but I’ve definitely come a long way. Look at me go; I can eat, sit down, shower and walk!!!! I couldn’t do any of those things normally for most of last year, so I am very grateful for my progress. Honestly, there were times last year when things were so bad that I couldn’t see the light at the end of the tunnel, and I thought that my health would never improve. But I’m sitting (yes, SITTING) here now and I am so glad that I took the bull by the horns and had stoma surgery- despite all its complications. It was far from easy and it brings new struggles practically every week, but I can’t remember the last time I felt this good. So, to close I would like to thank my surgeons who took such great care of me last year and who made the positive ending to these surgery posts possible. I may have had some issues with my care in the past (as you may well have read about!), but I am still grateful for the NHS and in the current crisis, I am clapping for them. 😊
Me and My Crohn's 