What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Upcoming Jpouch excision

I saw my surgeon last month to arrange the excision of my Jpouch, so I thought now would be a good time to talk about the procedure and explain the possible complications.

As always, I had already done some research online. I’m not new to researching on the world wide web, so when I look things up, I use credible sources and not forum posts or blogs, so I know I am getting facts and not opinion. Don't get me wrong, I appreciate the experiences of others, but if I want that then I’d ask in the #IBDSuperHeroes Facebook group, and what I wanted at this point was facts.

I went armed with my notebook, as is always the case when I have questions, OR when I know I’ll be told more than one thing, because fatigue plays havoc with my brain and I can’t trust it to retain all of the information!

The surgeon felt the need to reiterate, multiple times, that this will be another big operation. I know this. I did not enter the consultation room wearing rose-tinted spectacles. I have been unfortunate enough in the past to have had a shit surgeon and a myriad of post-op complications. I am under no illusion. I know that the surgery and recovery will be difficult, and that I will be frustrated, unhappy, upset and angry during my hospital stay. I am also aware though, that I am going to feel pretty damn good in comparison to now, in the long run! 
I made the decision to have the Jpouch removed, and everything below it removed also. In the IBD community, this surgery is often referred to as a "Barbie butt". The actual term for the surgery is proctectomy, and this involves removing everything on the inside and the anus itself. The skin which was around the anus is then sewn together. The intestine which once joined the Jpouch at the top is instead brought through the abdomen to form a new stoma. This stoma (ileostomy) will be permanent.

I was pretty clear about everything by the time I went to see him, but I think it's always worth asking your surgeon questions, even if it is just to 100% confirm what you already know. 

My surgeon has performed 50 Jpouch excisions. Very few of these have had long-term complications.

The expected duration of the surgery is 5 hours. 2 of those hours account for the time it takes to put me under general anaesthetic (apparently, I don’t go out easily, "It’s like knocking out a horse"), and the time I'll be in recovery (I don't like waking up either). It doesn't matter to me how long it takes because I'll be asleep and unaware of what's happening to my limp body, but, it matters to my mum, who needs an expected wait time so that she can promptly start worrying when it’s 5 minutes past the expected ESTIMATED time, and I'm not in recovery yet. In all honesty, had she not been there, I would likely have added a few additional hours on to that estimation to save her the panic, because I am yet to have a big surgery which didn't take a lot longer than what was estimated!

I will be offered an epidural, which I will politely decline. I have had an epidural on two separate occasions in the past, and these have done more harm than good.

I will wake up from surgery with a catheter, a side drain and a PCA to administer pain relief. There will be a dressing over where the midline incision was made, which will have been glued back together because the surgeon does not like staples. I will have a brand new stoma on the left of my abdomen (not the usual side for an ileostomy, I know) which will be covered with a large, transparent ostomy bag so that we can easily see what's happening inside. Of course, there will also be a very sore backside, where my Jpouch, anal canal and actual butt hole once resided.

The expected hospital stay is 5-10 days. It’s impossible to accurately estimate when you’ve no idea if there’ll be any post-op complications, so I try not to let the estimate be an expectation. This also goes for the recovery time of 8 weeks, before returning to normal duties. 

As usual with any bowel surgery, the post-op diet should be high protein (good for healing), and low fibre.

Perennial wounds are notorious for not healing well and infections, and there is an additional risk of the Jpouch excision resulting in short bowel syndrome (SBS) because of the loss of more intestine, which could mean needing TPN in the worst case scenario.

If we focused on what the worst possible outcome could be every time we made a decision, we would never do anything. The focus has to be the end result I am aiming for - my life back, free of pain.

I am excited. The last time I actually felt well was 4 years ago when I had a temporary ileostomy for 5 months because my Jpouch got torn when I was having my intestine untwisted and an abscess removed. The upcoming surgery marks a new beginning for me. A life free of the haze of painkillers, and me finally being able to press UNpause.