Jiving on Regardless

{May 14, 2008}   Surgery Looming

Once again it has been a long time since I last wrote on here.  I kind have haven’t had the inclination to write stuff down, it’s been a lot easier to just get on with things and try not to think about them too much, but I figure I ought to update and keep going if only to show how all of this really works.

Things have moved along a bit in some ways but in others I feel stuck in the same place.  My colitis is in flare up again, although currently quite mildly and manageable.  A few weeks ago I saw a colorectal surgeon about my piles (an unfortunate side effect of UC).  He examined my rectum and said that the colitis was bad again and he recommends surgery on the basis that I have now had the disease for 10 years and after ten years the morphology of it changes (it can become cancerous) and the fact I am not responding to any medications suggests that the only option is to remove the bowel, therefore removing the disease.  Needless to say this was not a shock but still threw me.  He dealt with the piles by injecting them with some stuff which makes them shrink (sorry I can’t be more tecnical).  it didn’t hurt – the examination hurt more because of all the air he had to pump into my rectum – you know how it goes!

The next day I saw my Gastro consultant and told him what the surgeon had said.  He was very wishy washy and hesitant, saying he thinks I should wait a while for surgery and see if it spontaneously settles. I then confirmed I had now had this for ten years and he started to change his mind.  We left it that I would see him in two weeks and he would refer me to a Stoma nurse.

Two weeks later and we get to today.  Luckily I have been able to see my consultant and the stoma nurse today which was sooner than expected.  My first app was with my consultant who, as usual, asked me how I was, and, as usual I told him that I was going to the loo 4-6 times a day, mild pain sometimes worse sometimes better, lots of bleeding, very tired.  He then said (get this for bad English) “it is unlikely that you won’t have to have surgery sometime soon”.  My brain tried to work out what this sentence meant until I had to ask, “do you mean it is likely that I will have to have surgery soon?” and it would seem that the answer to that is “yes”.  He agreed that we should defer for the time being until I feel more comfortable about it all as ultimately if I were to go into crisis they could operate within 24 hours.  I am to see him in six weeks time or before if I prefer.  My Gastro team are fantastic and all I have to do is call them and they get me into that weeks clinic so it is a very flexible arrangement.

To this point I have been before, twice, but the next appointment, with the Stoma Nurse was one step further along the process than I have been up til now.

M was lovely.  I had my two year old son with me, who wanted my attention, so chatting wasn’t easy but we covered a fair bit of ground anyway.  I learnt a lot – which surprised me as I thought I had read nearly everything I could on this – clearly not and clearly the Internet is not the font of all knowledge we assume it to be nowadays.

What I learnt:

  • the first operation is major surgery lasting approximately two hours.  Here they remove the entire large intestine (they rarely leave any as although they could just remove the infected part UC has been shown to appear in the bit that’s left if they leave it so nowadways they just take the lot and be done with it) and then connect the end of the small bowel to an opening on the right hand side of your abdomen, about level with your tummy button.  This is called a Stoma (which is Greek for opening!).  The end of the small bowel creates a a little spout approximately 2-2.5 cms long which protrudes from your abdomen (hence spout!).  The bag (of which there is a huge variety and it is trial and error as to which one any individual prefers) is then attached onto your stomach encompassing the stoma.  It takes 4-5 days in hospital and then about 6 weeks to recover physically from this operation. This Stoma is temporary and will be left for 3-6 months depending on rate of recovery
  • if you so choose, and most people do nowadays apparantly, you then go on to have a second operation.  This too is a major operation which lasts approximately 2 hours and takes the same recovery time.  This operation involves taking the end of the small bowel, attaching it to your rectum (which in most cases is left intact from the first surgery although is occasionally removed – as mine is badly affected by the disease it is possible this will be removed too). They then snip the bowel in two places and stitch it all together to form a pouch – a J Pouch (I could illustrate why it is called a J Pouch with paper and pen but not with words unfortunately).  Eventually, to all intents and purposes the patient will look and have bowel movements much the same as a normal person – no bag.
  • The second operation also involves creating another temporary stoma with a loop of the bowel in order for the newly formed J Pouch to be given the opportunity to rest and recover from the surgery.  This takes 3-6 months.
  • After 3-6 months, they test the new pouch to make sure it is all recovered and functioning properly and they then do another minor surgery to close the stoma and allow the bowels to start functioning properly.
  • During all of this time it is important to do daily pelvic floor exercises so that when the J Pouch is allowed to function you have better control of your bowels.  Initially control is hard and although you won’t suffer incontinence you will need to go urgently – much like with UC but without the pain, bleeding or discomfort.
  • Approximately 12 months after the last surgery is when people report they have full and normal control of their bowels and move on to be ‘normal’ again.
  • After the initial surgery people normally report feeling a whole lot better very quickly. Their energy levels rise significantly and they generally just feel well again – the disease is no longer existing in their bodies so their immune systems aren’t in overdrive.
  • She showed me a bag and gave me a test kit so that I could wear one for a day as though I had had the surgery.  I don’t feel up to doing that yet, it scares me horribly.
  • The bag has to be changed daily and drained regularly throughout the day.  They give you thickening agents and potions and lotions to allow the slop that comes out of your bowels to be less sloppy (it is all liquid that goes into the bag, no formed stool as there is no large intestine to form it!).  I can still dance but might want to empty the bag before hand so it is not sloshing about (nice!).
  • You do get wind when you have a bag but the air is release through charcoal filters so one benefit of this surgery is that your farts don’t smell!!!! – i’m all for looking on the bright side of things 🙂 The other side is you can’t control the farts – bonus! (sorry, anger makes me sarcastic).

This is such a crappy, crappy process.  I am looking at nearly two years worth of surgeries and recovery periods.  I know that almost immediately I will feel so much better and it will be a relief to know I don’t have the disease anymore but two years is a long time of having your life on hold and not being able to make plans.  Three surgeries and recovery times is a long time in which somehow we have to find help with the kids and N has to continue to work. Two years is just a long time.

The Consultant wants me to wait a while although what for I don’t know, I think he just wants me to make the decision and doesn’t want to influence it.  My Stoma nurse said that although harder mentally, it is easier physically to elect for the surgery rather than getting to crisis point.  The colorectal surgeon I saw (probably the one to do my surgery) thinks I should get on with it.  I don’t know what to do.

It sounds completely over dramatic but I feel I am handing myself a life sentence which is not much better than the one I already have.  I feel weak that I can’t tolerate this disease and live with it.  I feel like I should be tougher and made of sterner stuff and just live with it.  I feel scared that it could become cancerous and I would then be putting my family through even more hell, when if I have the surgery I can save them from that. I feel relieved that eventually my life might go back to normal without a bag and without the pain of UC but I also feel anxious that nothing has ever gone as it should for me (medically) and therefore why will this be any different?  Will I be the one who goes through years of surgeries and pain because of cock ups and infections? Will I die? I’m not too concerned about this but I guess when you are facing major surgery you ought to at least let it cross your mind. Will my marriage survive?  We’ve had some pretty tough times which we have worked through and made it through but will we make it through this?  Is it okay to cry about it?  Sometimes I don’t know, sometimes it makes me feel pathetic, sometimes it makes me just want to get away and sleep, shut it all away and save it for another time.  Is it all going to be okay?  Now, there is the big question, the one no one can answer but the one everyone will try to answer.

Anyway, the Stoma nurse is going to put me in touch with a few people, my age with similar lifestyles so that I can have a chat with them about it and see how they have got through it.

I am sure I am worrying a little too much and maybe not quite enough but I guess that not everyone has to face this kind of shit and I am entitled.

Off to mooch – just a little bit and then spend the weekend dancing my troubles away 🙂


et cetera