Day 14: How many stages?

Hello! It's been a few days since my last update, but to be honest there's not been too much to report. At the moment, every day is still a chill-on-the-sofa day. I'm gaining a slow and steady knowledge of daytime TV (Jeremy Kyle is on five times a day now. FIVE?!) while eating lots of good food and doing my best to take it easy. Although the surgeon was pretty sure that my complications were sorted when I left hospital, there's a small chance I could have another bleed if I don't take things slowly. Still, that's a great excuse to be chilling out!

The good news in, I'm in very little pain. The only pain I have is an odd twinge/throb from the bottom area (where my new pouch is), or the odd ache from my incisions, but one of those has healed completely already. My new stoma bag is settling nicely and I seem to have found stuff that works for me, although it's still a learning curve and I'm no way near as confident with it yet as I was with the last one.

I think I've realised by now that the loop and the end stomas are two totally different things! If you're facing going from one to the other, don't be discouraged or upset by the fact that you'll go from feeling like a pro to a rookie overnight. You learnt this before, you'll learn it again!

Me and Rosie competing for sofa space. Gerroff!

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Now, onto my topic for the day - the actual ins and outs of what I'm having done, for anyone who's reading this and confused, or possibly looking at surgery themselves. Online, I've heard a lot of confusion about the practical side of J-pouch surgery that I wanted to clear up.

By the end of this journey, if all goes to plan, I'll have had three surgeries in total to make my J-pouch. This is the first thing that confuses people, as it's often listen online that pouches require two operations only.

In fact, J pouches can be made in one, two OR three stages, although one is very rare.

A One-Stage Operation - Removing the whole colon, creating the pouch and connecting it all in one go, without the need for a stoma. This is something written about online in medical journals, but in my time blogging and online I've never come across anyone who's had the one-step. It seems that surgeons are very reluctant to bypass the ileostomy. There's good reasons for this - connecting the pouch immediately doesn't give it chance to heal, and increases the risk of complications like sepsis. There's much greater scope for complications with this method. This seemed to be something done in the past, when pouch surgery hadn't been so far developed. Still, there are apparently some people who have had a one-stage operation and have gone on to own successful pouches.

A Two-Stage Operation - 1) Total removal of the colon (proctectomy), pouch creation and temporary loop ileostomy 2) Reversal of the loop ileostomy

This is the option offered to most people who have planned surgery who are relatively healthy at the time (you might not feel that healthy with your IBD, but you're still pretty 'well' as things go). After the first operation, you no longer have Ulcerative Colitis, as you have no colon left for your body to attack.

A Three-Stage Operation - 1) Emergency partial removal of the colon (subtotal colectomy), leaving the rectum intact, with an end ileostomy 2) Rectum removal (proctectomy), pouch creation and loop ileostomy 3) Reversal of the loop ileostomy

This is what I have had done. This is the option offered to emergency surgical patients. The rectum is left intact because this is the most 'fiddly' bit to remove and requires longer under anesthetic, something that a critically ill person cannot handle at that time. The surgeon just wants to whip out the most of that colon and bring you round, to give you the best fighting chance you've got. Unfortunately, this means that between 1-2 you will still suffer symptoms of Ulcerative Colitis in your rectum - bleeding, mucus and urgency, but without the poop!

If you have the two-stage op, you'll only ever experience the loop ileostomy. Loop stomas are usually flat to the skin (often requiring convex bags, as I discovered the hard way), more fluid, and have two openings (only one of which works). When someone said to me that this one would have two openings, I imagined something that looked like a figure of 8, or two stomas sat next to each other - and had visions of endlessly slaving away at cutting bags into 8 shapes... Haha. This didn't happen. It's a regular little circle like any other!

If you have the three-stage, you'll also experience the end ileostomy. Between the two, this is by far the easier to care for - and I'm not saying that as a newbie. It sticks out, it's easier to care for, and generally less active.

My old end ileo, which I had for 17 months. Miss ya, lifesaver!

Imagine stomas as babies for a moment (you have to care for them as such!) - your end is the well-behaved baby that sleeps through the night and doesn't cry, whereas your loop is the terror child that keeps you up and is always spitting out their dummy! Both can be cared for equally well, if you're prepared to suck it up and have that bit more patience!

The waiting time between these surgeries varies from person to person. Typically, between the creation of the pouch and the reversal of the loop ileostomy, you're looking at about a 3-6 month wait. This allows the pouch to fully heal before it's connected. You will also have a 'pouchogram' before your pouch is connected (a CT scan to check for any leaks).

For a 3 stage operation, there's no telling how long you might wait between 1 and 2. As long as your 'rectum stump' (the name given to the tiny bit of large bowel you have left) is controlled and not flaring, you may decide to wait a long time until you go for the next op. This may be because you need a long time to recover, because you don't want more big surgery just yet, or even because it doesn't fit in with your life at the moment. Your rectum can be treated with UC drugs e.g. mesalazines, steroids (usually in an enema or pessary form)

For someone who's had an emergency colectomy, it's actually sometimes quite inconvenient! (Damn you body, why did you have to try and kill me just at this specific time? FFS you could have waited until it suited me) Like me, I'd just started university when I got rushed in to have my colon removed. That meant having the rest of the year out - and it would have been even longer if I'd gone straight for operation 2. Instead, I went back to uni for the year and have had this next surgery in my summer holidays, so I had my end ileostomy for a total of 17 months.

So yes, if you're 3-stage, it's actually quite up to you. Although you have to bear in mind the slight cancer risk of the UC in the remaining rectum, some people keep their rectum stump for years. This particularly applies to women hoping to start families in the near future, as it's the rectum removal part of this surgery that can lead to a decrease in fertility. (I'll be covering this topic soon). Some women keep their end stoma until they've had their babies, then go on to have the two more operations for the pouch.

Having had two of the three now, the worst is over for me, as number 3 is a pretty minor operation in surgical terms (the after-effect is more psychological - the shock of actually using the bathroom like a regular again).

My end ileo, 1 year anniversary of operation 1

So, I hope that's cleared the stages question up. I'll be back to cover lots of other topics over the coming weeks - as always, thank you all for your support!