Waking Up with a Stoma

I had been through recovery before, knew that the groggy fog of the anaesthetic would eventually lift. But this time around I felt utter relief. I was confident this time that this was going to be a new life for me.
I felt around under my hospital gown for the scar, for the bag. The scar felt huge and like I had been ripped apart inside but in reality it was neatly glued together, all seven inches of it. The bag sat on my right hand side; I proudly touched it, flinching slightly at pain, feeling the outline gently, hearing the crinkle of the bag. I’m sure I had a smile on my face, it was hard to tell with the morphine. Despite that, I knew this was it. It would be challenging yes, but I was on a new path now, to a new life.

Through the haze of morphine, I can only truly remember the second day after my surgery. The first day – a mere eight hours after surgery has taken place – I can only remember being surrounded by nurses every time I opened my eyes, high in the air on my bed. Being tended to, aware that my mom was in the room at times, having my TPN reconnected, my wound checked, then my catheter; I noticed people being around.

The following day, I awoke to a new bag; someone had changed my surgical one at some point. The grey oval rectangle felt so foreign to me. Despite it being empty, it felt heavy. I had been well prepared for my ostomy surgery, knew what to expect but even still, seeing that bag attached my abdomen; it was a shock. There was no going back from this, I had to come to terms with it, physically, accept it however I could.

That was the one thing  no one but me could prepare for. How to mentally accept living with an ostomy. Having a stoma, in all its guts and glory.

A new stoma is very swollen so when it starts working you feel it.

After weeks without food, what was coming through my bowels, out of my stoma and into the bag was bile. Despite it being liquid, it hurt. My stoma was new, it didn’t know what was going on, nor did I.

With the pain I was in from the surgery, I was fascinated in how my body was now working. I did my best to look at my stoma through the bag’s inspection window, familiarise myself with it. I would watch it working and keep an eye on it. I would soon be allowed some food to test it out more, learning how to look after it was just beginning.

I could feel the output hitting my skin and it was irritating it straight away. I knew I had to change the bag, and I had to do it alone. I’d only changed it once before now; with the stoma nurse, I had to put my big girl pants on and get this done! I needed to protect my skin from damage.

The routine of changing my bag was strong from the get go. Testimony to my SCN for her advice and support, despite our first rough encounter, three days post op.

I was disconnected from TPN so I gathered my stoma bag and made my way to the bathroom. I was feeling okay but weakness was my biggest issue. I could not stand up for long. I was panicking that I would faint again or collapse in a heap, shit everywhere. I pulled the cap of my adhesive remover shakily, unable to focus. What if I did it wrong? My call button was so far away! I took a deep breathe, sprayed my remover, took the bag off my belly; noticing the redness of my skin. I cleaned myself, cut my new bag, continuing to breath despite feeling dizzy from being upright. The output had a mind of its own; it took 15 minutes to get it calm enough to apply the new bag.

But I did it. I finally got myself sorted. Exhausted, I went back to my bed and promptly went to sleep.

Learning how to look after my stoma – proudly called Pricilla – wasn’t without its challenges. But as I got more used to her, the better I felt. The better I felt, the easier taking care of myself became. This was a deeply meaningful time for me; it has really helped me see things clearer. Never before had I wanted to be so proactive in my care, my decisions or my lifestyle.

I had a pretty smooth physical recovery from surgery. The mental scars were deeper. Realising that my surgery had actually happened, noticing how well I was now ‘sans colon’ was something I just didn’t quite believe to start with. I was always on tenterhooks, waiting for my body to fuck me over again, like it always had done. I didn’t expect such a smooth transition back into Crohn’s medications, then into remission and now into what I’m calling ‘The Med Free Zone’.

Waking up with a stoma is by no means an easy ride. Whether it is an emergency operation or a planned elective one, having one when you wake up from a surgery is scary. But you decide how long you want to be scared about it, by it, with it for. It is all in your own hands.

Happy Surgery-iversary…?

May 12th. It is forever etched into my brain. We’d been able to control, for the most part, my disease with medications and ‘diet’ for the five years prior to that. But, somewhat inevitably, it came down to needing a clinical trial or surgery. I opted for surgery but debated the toss for weeks after choosing. I was going to need testing to predict the type of operation I would need and I still went back and forth throughout all that testing. But once we had a plan, I was keen to move forward. The pain, the nausea, the inability […]

Continue Reading

Changing Attitudes

13.06.16 I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants? It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this […]

Continue Reading

Surgical Review #2 – 13.02.17

Back to see my amazing surgeon today. Don’t worry, I’m okay! If anything, that’s the reason for seeing him. I am doing so well since surgery, he double checked my blood work, did a MRI scan and a calprotein test to confirm that everything is A-Okay. I’ve briefly discussed my thoughts on ‘remission’ this time around here, and also here. But today it was made official but not at all scary. My MRI scan of my small bowel and pelvis showed no activity of Crohn’s disease. If anything, some parts of my bowel weren’t dilated enough, indicating that the prep […]

Continue Reading

One Year On

Three hundred and sixth five days. A whole year; twelve months. We sat in traffic. It was a busy Wednesday morning rush hour. I’m anxious, excited and ever so scared. It felt like make or break time; would these doctors also recommend surgery? Did I have more choices than the scalpel? I was in agony. I knew I was sick and I knew that I would probably choose surgery but who wants to make that decision? Without more opinions and more information? No, today was necessary. I was curious about the new and different hospital; explaining my history to a […]

Continue Reading

Remission: I AM IN IT

So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the system for me yesterday via email so when she called me, I was abit confused. But its good news! After just five months since my ostomy surgery (and four months of […]

Continue Reading

“Remission” – One Step Closer

I have questions. So. Many Questions. 1. How do you determine if surgery has succeeded? 2. How do you measure ‘remission’? 3. Can you actually achieve it? 4. Do I want to be medication free? I hope these all seem logical, or at least follow on from each other. Maybe the additional, and probably first question should be Why am I asking these types of questions?   The period between Christmas and New Year was eventful for me. Not only did I catch some sort of stomach bug which really affected my ostomy – like it should do, really! – […]

Continue Reading

Surgical Review – 12.12.16

This is my surgical review for both my surgeries I had done this year. I had my Right Hemicolectomy in May and my Subtotal Colectomy in August. The second surgery superseded the first by giving me my ileostomy. I was sort of expecting to be on the way to being discharged at this appointment but I knew deep down that this probably wasn’t possible. It’s only been three months post-op and it seems whenever my surgery is discussed with me at the hospital, they added on additional weeks to my recovery because of already having Crohn’s disease. Apparently, this type […]

Continue Reading

What I’ve Learnt after Three Months with an Ileostomy

  Yes, it’s already been THREE MONTHS! Can you even believe it?! I know that three months is nothing in the scheme of things, and even three months out of 2016 doesn’t feel like an incredibly long time, but to me three months is a lifetime. When things don’t go right or you have problem after problem, even a week can feel like an eternity. That’s what I was experiencing before I had my hospital admission in August. I was trying my best to deal with what was happening to me at the time – codeine addiction and subsequent withdrawal […]

Continue Reading

Going Medication free..? Is this *the* IBD dream?

I received correspondence from my GI yesterday, following my clinic appointment with him last Tuesday. It made for an interesting read: “I am sorry you came to separate surgeries, initially an extended right hemicolectomy and then a subtotal colectomy. We have still got you on Vedolizumab and I am not a hundred percent sure this is the right choice for you at present. In theory you have been completely down staged surgically and so it maybe possible to trial you without treatment. Presently, under NICE, Vedolizumab was the last option I can provide without looking into trials. I note you have […]

Continue Reading

Oh The Pain! Flapjackgate: My First Ostomy Blockage

What was suppose to be a relaxing weekend in preparation for holiday to Cornwall with Ben this week, turned out to be somewhat of a small disaster: Going to Good Hope A&E twice in the space of 12 hours. Oh joys. Saturday started off fairly normal – breakfast, shopping in Lichfield, food shopping in Tamworth, followed by lunch at home. I had made chocolate flapjacks the afternoon before and had one after my lunch. Delicious, I thought. I’ve never been a big fan of them but at least I can eat them without pain now, right? Oh how wrong  I […]

Continue Reading

Returning to Work…?

Today I attended a work coach appointment at our local Job Centre. NB: I currently receive ESA because I’m unemployed and recovering from surgery.  I’m still yet to my surgeon for my post op check, but so far things have been going well with my stoma and my Crohn’s; I haven’t been left without any help or care! So today was about seeing what will happen next. Usually, a person on ESA gets assessed but due to the situation at the DWP and my own circumstances due to surgeries, this has been halted for the foreseeable future. But it does […]

Continue Reading

Grieving: Those Waves Don’t Stop

They “prep” you for surgery; you hear that a lot in the weeks and days leading up to an operation. Medically, you should be fit enough to withstand the trauma your body is going to under take. You should be aware of the potential dangers, prepare yourself for things to be different than what you’re expecting, what you’re thinking could happen; even if you’ve had surgery or this surgery before. What about mental preparation? Do the doctors ever prepare you for surgery? Apart from what I’ve mentioned above, how does anyone prepare for surgery? I was a novice to it all in May, there […]

Continue Reading

How do I hate something that has saved my life?

No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with […]

Continue Reading

One month post op

  “Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery. Mention-worthy moments: Not needing any pain relief since being discharge. Being able to manage my stoma – when its changed size and the output has changed consistency. Even […]

Continue Reading

To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

Continue Reading

In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

Continue Reading

A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]

Continue Reading

‘RECOVERY’ AND BOWEL INFECTION ADVENTURES [15.06.16]

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 […]

Continue Reading

RIGHT HEMICOLECTOMY WITH CYSTECTOMY – 12.05.16 – PART TWO

The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]

Continue Reading