Jiving on Regardless

{May 31, 2008}   Questions and Answers

The last few days have been hectic as it is half term which always means catching up with the people I can’t see in term-time, such as my brothers and sisters and some good friends.  It’s lovely to see everyone but I have been suffering with a bad cold this week, on top of my colitis, so I have kind of been dragging myself around.

Last week I stupidly waffled onto my sister about the operation without realising that my son (who is nearly five and very switched on) had snuck into the room and was listening to every word.  I hadn’t wanted to tell him until it was booked but I had to once he had heard it like that.  We had a good chat about it and he asked me lots of questions.  I explained that they would make a cut in Mummy’s tummy, which wouldn’t hurt as they give me special medicine which stops me from feeling pain.  They would then take out my poorly bits.  He asked what my poorly bits looked like which made me smile as this is an easy one ” a string of sausages”.  He didn’t ask much more but later that day he relayed what I had said almost word to word to a friend of ours, so he had obviously taken it all in.

This morning, in the car, he asked me if we could play a game this afternoon.  I replied that I couldn’t do it today as I felt too poorly but I would do it as soon as I was better.  To this he retorted with “I can’t wait until they cut you open and take away your poorly bits” in a rather sullen voice 🙂 If I hadn’t made up my mind before then, this would definitely have swayed me to the decision to have the op!  You don’t realise how much your illness effects those around you until you tell them that it is going to come to an end and they all heave a huge sigh of relief! My husband and my children seem very pleased I am going ahead which just goes to show that I have definitely made the right decision.

Today, my husband and I were planning childcare for the first six weeks after the op.  We now have definite appointments with my consultant and stoma nurse this Wednesday so the ball will start to roll then – I am just wanting to get on with it now.

I have moments when I feel very frustrated that this has to happen.  Normally when I am watching some West Coast Swing footage on You Tube or when I get invited to a dance event I know I won’t be able to attend.  I just have to console myself with the fact that I shall have much more energy for my dancing when it is all over and it will be much improved as a result. Roll on the next two years…

Other than the obvious, things are very good.  I went to the library today and picked out the Chronicles of Narnia.  Amazingly I have only ever read The Lion the Witch and the Wardrobe (my favourite book as a child) so I felt it was time to rectify this.  I have been reading a lot of Jodi Picoult recently as my friend gave me all of her books (they’re okay but they don’t blow me away) and it is definitely time for some good old Fantasy.  I also picked up The Firebird’s Vengeance by Sarah Zettel which is the final part of a Trilogy she has written – excellent if you like fantasy.

I am writing this whilst my boys and husband watch Dr Who – they all love it, even our two year old!  It’s not my cup of tea so I leave them to it.  Next week is my husbands birthday so we are off to London to take the kids to the Dr Who exhibition at Earls Court. Despite my lack of interest in Dr Who I am looking forward to it as they all love it so much it will be brilliant to see them enjoying it all.  I get to go back to London again that week for my birthday where I get to do what I want to do!  My husband and I shall spend the day and evening without the children but I have no idea what we are doing yet.  Regardless, it will be lovely, I miss London so much that any time I get to spend down there is great.

Talking of London, I am going to be going down in July too, to finally meet Ali.  Ali and I got in contact with each other through a forum when we were both pregnant and suffering badly with UC in 2005.  Since then we have developed an amazing friendship which has seen us both through the many ups and downs of family life and life with UC.  It’s weird, but despite having never met, I would class Ali as one of my closest friends, probably because we share a lot of intimate detail about our lives with one another.  Obviously, we have seen photographs and we exchange gifts at Birthdays and Christmas and we email each other lots but we have never actually set eyes on each other.  This is primarily due to lack of time because of family commitments and bad health.  I so can’t wait to finally get together – it will be great to finally give her a big hug and say hi properly 🙂

I am off now to enjoy a curry and a glass of wine…


{May 28, 2008}   Telling People

They’ve changed the way everything is set up on this blog and it is really doing my head in.  The other day I published a page rather than a post and have no idea how to change it back – sometimes I hate change!

I guess I better get used to it though as there is to be a lot of change in my life soon.  Yesterday I made an appointment for me and my husband to meet with the Stoma Nurse next Wednesday.  I am waiting to hear back from my Gastro Nurse as I am hoping I will also get an appointment with my Consultant that day too.  My answering machine is broken and my mobile phone is broken so no-one can get back to me when I leave messages – it’s a nightmare.  I am hoping my Gastro Nurse catches me today as she is equally impossible to get hold of, although I can leave a message her end.

All of my dance friends are heading to a weekender in Southport this weekend.  This will be the first one I have missed since I started dancing.  It is an awesome weekend of dancing but lots of reasons made us decide not to go this year.  I should be really gutted I am missing it and I feel a little bit miffed that I am missing out but actually I couldn’t face it.  The weird thing is I have definitely attended Southport feeling more ill than I am at present but I think I have just had enough of it now.  Maybe because an end is in sight I am starting to feel really fed up with my UC.  I am now completely ready to put my life on hold for a while to have this done, I wish I had had it done years ago.

I have started to tell a few people that it will be happening.  It is an odd one, telling people. Part of me really wants to talk to people about it, probably, partly, because talking about it affirms it as a reality in my head, partly because telling people makes it feel real, like it really will happen and is not some bad dream.  The difficulty comes with peoples reactions.  I can’t stand sympathy, I like people to be understanding but not gushingly sympathetic.  I also hate the fact that people might assume I am telling them for their attention, I don’t need attention.  It is also surprising how badly some people react.  I told someone, whom I thought I could trust with the information and her reaction was “urgh, those bags stink” – yes, thanks for that! Unbelievably this women was an ex nurse!  As it happens, from what I gather they do not stink.  They smell when you open them but whose bowels don’t?  shit stinks – simple.  The bags do not smell whilst on you and closed.  Besides, the bag is a temporary thing – I hope.

Still, peoples reactions are fascinating.  Some people look at me like I should be telling them whilst breaking down into uncontrollable sobbing.  Some people react like I might die, some people react with no reaction at all. Baring in mind that I have only told a handful of people I am generally close to, it is surprising.  I know I will get a mixed bag of reactions so I guess I ought to just be ready to deal.  The lady I met with who has been through this told me she has found it best to just be incredibly open about it, you soon find out who is a friend or not.  It suits me, it not like I can hide it anyway, when I disappear from sight for months on end – I want some friends when I come back to my normal life.

This week is madly busy visiting friends and family as it is half term. This is a good thing as it means I don’t have time to dwell and feel sorry for myself.  Generally I don’t feel sorry for myself, what is the point? But very occasionally it grabs me and makes me feel very useless.

Time to go visiting.

{May 26, 2008}   Gastro Professionals

I have just read my friend’s blog and it has made me feel very grateful.  Since being diagnosed with UC I have had four consultants. The first one was in Peterborough and he literally went through the nine months it took to diagnose and the day he diagnosed me I moved to London.  That day was easily the most exciting day of my life and couldn’t even be blighted by the phone call I received mid afternoon to say I have UC and was to register with a doctor and get put on steroids immediately! Ahhh, memories 🙂

In London I had two horrendously useless consultants in a horrible, dirty, far too big teaching hospital, St Georges in Tooting. That place was hell and fortunately at that time I never suffered an admittance (although clearly should have done, had they been doing their jobs right).  These consultants had too many people on their books and no time to deal.  My only saving grace in London was a fantastic GP who was incredibly supportive and helpful.

Four and a half years ago I moved to here and wow, what a surprise.  I have a fantastic Gastro TEAM!  The team consists of two consultants, two specialist Gastro nurses and a who bunch of other nurses.  The two consultants are equally fantastic.  They are fun, comforting, accessible, on the ball, progressive and actually concerned with my quality of life as opposed to just the presentation of the illness.  I am under one of the consultants but if he is away or unavailable I am able to see the other consultant.  They both make me smile.  The Gastro nurses are just amazing.  They are available on the phone everyday and ALWAYS call me back if I leave a message. The whole team knows me, knows my family and my situation and treat me accordingly.  I just can’t praise them and how much they have done for me enough.  I think every gastro department in the country should be modelled on these guys – they absolutely lead the way.

It feels good to be thinking about this as given what I am about to face it makes all the difference to know I am under the best care.

I had a sick day yesterday which really means I stayed in my PJ’s all day.  I hate doing it as it makes me feel useless and out of control, so it is a rare occurrence.  However, I felt a lot better although my UC is definitely moving into major flare up mode.  Today I am getting dressed and going to be active whatever, as sitting around moping does nothing to make me feel better.

Tomorrow I shall call my Stoma nurse (I neglected to mention her before, but she is a member of the team I have only recently met, but she is equally great) and arrange an appointment for N and I.  I shall also call my Gastro nurse, to arrange an appointment with my consultant earlier than planned.  She will probably get me in next week at the latest.

Once these appointments happen the ball is rolling and I should think I shall meet with the surgeon in the next three/four weeks.  Not so scary now to be honest.  I am definitely ready to get rid of this intestinal burden.

Right, it’s time for me to get dressed and help my husband create a gym space in our garage – he will need a little escape haven over the next year or so!

Last night my UC decided to give me a potent reminder of how bad it can get but it didn’t start off that way.

Yesterday I woke up feeling exhausted.  I had that feeling when your body feels as though it has no substance despite a good nights sleep.  I tell people it feels like I have been unplugged, that is the only way I can describe it.  Despite this feeling I carried on, as you do, and had a fairly busy morning.  We were planning on spending the day with my Mum who lives about 40 minutes away but she was ill so we nipped up to collect some things from my brothers and were home at 2.30pm.

I had already arranged to ring E, the lady my Stoma Nurse recommended I speak to.  As I was home I texted her to see if she could meet for coffee instead and she could.  I proceded to spend two hours with her.

What a lovely, lovely, lady.  She spent two hours going through everything in incredible detail with great thought and compassion. It was far more helpful to speak to her than I could have imagined.  She had UC for two years and then got very ill and ended up having an emergency operation – at the age of 20! As you can imagine this was horrendously daunting and scary.  A lot of what she described as being difficult and awful I hope I won’t have to deal with purely because I have had time to prepare and talk to people.  She has definitely prepared me for some details I hopefully won’t find as shocking now.  She had an horrendous time with post operative infections and ended up spending three months in hospital.  This is just one of those things you can’t predict and yet is quite common, I just have to hope it doesn’t happen to me.

Despite the difficulties she encountered with the first operation she eventually went ahead and had the J Pouch surgery with no complications and is now very happily ‘normal’ and a huge advocate of the operations.

I came away feeling a little overwhelmed and scared but also relieved to have been able to find out the ‘details’ beforehand and extremely pleased to have found someone I predict will become a very valuable source of help and support.

That evening I was feeling totally exhausted but relayed the conversation to my husband and my thoughts and feelings on the subject.  He was fantastic and reassuring.  My main worry was that I don’t feel ill enough right this minute to warrant such a huge, life changing ordeal – correction, I DIDN’T feel ill enough! My husband proceded to point out how ill I actually was and to once again remind me of my lack of perspective on these things. I then had to suddenly rush to the toilet and spent 45 minutes in complete agony.  It was so bad that I seriously considered getting myself to A&E as I know that once it turns this corner there is no going back.

After a while I managed to ply myself from the toilet and fall asleep and I actually slept through the night. After thinking about there was no way I was taking myself to hospital on a bank holiday weekend.  I have been down that path before and it is just a nightmare as the consultants don’t come in until the next working day.  I shall just tolerate this until I can speak to my nurses on Tuesday.

This morning I woke up and the process started again and I have had a very rough morning running to and from the toilet and in much more pain.  I guess it kind of thought it ought to remind me that it really is here – bastard!

I am taking a sick day today, which means, for the first time in a long time, I am yet to get dressed (at midday), I am spending the day in bed and my husband has taken the kids out to give me some peace.  I am really hoping that resting will allow it to settle down. I really wanted to keep going for a few more weeks until N and I had been able to see the Stoma Nurse, the Consultant and the Surgeon together and had also been able to plan with our parents our childcare and so forth. I am now just praying that this blip isn’t a big blip and doesn’t see me taken in as an emergency – I have a feeling it might.

I wouldn’t be taken in as an emergency in terms of ‘your bowel is going to perforate, you need to be operated on now or die’ which obviously can happen to some.  It will just be because there is nothing they can give me to settle it and thus settle the pain.  It will be a case of being in agony until the bowel is removed.  In some ways, whether this is a minor blip or not it has served to remind me just how painful UC is and how I can never face a severe flare up again.  It is definitely time for me to have the op.

So, on Tuesday, I shall call the Stoma Nurse and my Gastro Nurse and start the ball rolling.  It is possible that just by speaking to my Gastro Nurse, she can speak to my consultant and get the referral ball rolling to the surgeon. Either that or she will tell me to come in and they will admit me.  My consultant has always said that if I came in out of the blue I could have the operation within 48 hours – they don’t mess around with UC which is one Godsend.

Fingers crossed I will be granted a temporary reprieve from my poorly intestine.

As time goes on I shall relay all of the helpful hints and tips E gave me yesterday but to relay a two hour conversation will take far too long.  Needless to say, I am sure I shall be repeating many of them.

The damn toilet is calling me so time to go 😦

{May 23, 2008}   Endless thinking

Today has been tiring and quite the chore.  N had the day off and my son had an additional days holiday from school for teacher training.  Here we were planning a lovely family day but our eldest had other ideas.  He decides that today is the day to kick off and behave like a brat and in the process has made the day quite fraught – I love being a parent sometimes!

This morning didn’t start well at all as my colitis was painful and I had a protracted bout of it which meant our day was set back by a few hours.  N and I have been chatting a lot about the ops etc and we concluded that I have no perspective on pain, discomfort and what I ‘should’ feel like.  My pain threshold is now so high that what I class as a 3 N thinks someone else, without chronic illness, would class as an 8/9.  I admit that I persevere despite symptoms as all chronicly ill patients do and I am struggling with how much benefit I would get from having the ops as I can’t imagine how much better and different I would feel as a result of them.  It’s been ten years since I felt ‘normal’.  I also realised that this is the first time in ten years I have been experiencing UC with no medication.

I digress slightly but does anyone else find that their bladder is more sensitive when their UC is in flare up?  Not only am I on the loo constantly for obvious reasons I am now always emptying my bladder – I am so fed up of the decor in my bathroom.

Tomorrow I hope to have a conversation with the lady my stoma nurse recommended I speak to.  The last few days have been full of minor realisations of the impact this process will have on me.  Yesterday I finally read the literature the nurse gave me.  I haven’t read it before as I guess I wasn’t ready for the detail but I finally did it and it made for depressing reading.  For 8-10 weeks I won’t be able to lift anything heavier than a kettle! 8-10 weeks!  This means I won’t be having big cuddles from my little men or bathing my youngest.  I won’t be driving for six weeks, although  am guessing that this is fairly irrelevant as I won’t feel up to driving anywhere anyway.  Supposedly, even the third op, the MINOR op requires a 7-10 day hospital stay! On top of this the risks of complications and set backs seems enormous and all too common.  I am most definitely not in for an easy ride – and that’s annoying!

Despite all of this I know I shall be going ahead with it. My husband is really keen for me to have it done and I guess that says a lot about how much he feels this disease impacts on mine and his/the kids lives.  He can’t stand seeing me in pain (he found childbirth a hugely stressful and traumatic time) and I know he would not encourage me to go through this if he didn’t feel it offered huge benefits.  It still seems mad that to have a normal life I have to go through two years of operations, procedures and enormous change.

I have a feeling that this blog will become an endless repetition of my waffle for the next few weeks, so anyone reading it feel free to tune out for a while 🙂

I am now going to spend the evening with my lovely husband, watching Heroes and eating curry (before you ask, curry makes no difference to my UC) – my definition of happiness 🙂

{May 21, 2008}   Summer Days

Today has been a very pleasant summers day.  This morning I managed to walk down to the school (about 1 mile) and on the way back stopped off at a friend’s house with four other Mums and their tots.  We spent the morning sitting in my friend’s garden, eating chocolates and drinking tea – bliss!  By the time we got back W was shattered and proceeded to sleep for two hours which meant I got to have a nap and  to sit down and catch up with some TV.  I have then spent the afternoon leisurely strolling from school, taking B for a haircut and baking muffins – I have been the archetypal stay at home mother.

My colitis hasn’t really bothered me today.  It’s been there but not too bad and all in all it has been a lovely day apart from the fact that I now have an evening on my own as N is still away in Portugal 😦

I am so looking forward to the weekend.  Hopefully the weather will be great and we will spend it doing fun stuff together.  We might even venture to the coast.

Just got the kids to bed so it is now time to sit with a cup of tea and a muffin – mmmmm.

{May 20, 2008}   Nonsense Mainly

Today my UC has been bothering me a bit. I have been to the loo a few times more than usual and there’s a lot of blood and mucus.  It’s weird as in some ways this is reassuring. There I am doing stuff which is taking me in the direction of an imminent operation and yet it doesn’t feel real.  I feel like this can’t possibly be right, it is far too dramatic a thing to be happening to me (this is an ironic thought in itself as life’s dramas have a habit of finding me).  When I am reminded that ‘yep, it’s still there’ it makes me feel better about it all, like, of course this is what I have to do.  Am I making any sense I wonder?

Anyway, today it has been playing up a bit more.  A few people at school have asked me questions as they are concerned I am looking very ill at the moment (there I was with contact lenses in and make up, I had actually made an effort this morning lol!).  I do feel amazingly tired and constantly ravenous.  It’s so odd, I am not on steroids or anything and yet I feel starving all of the time.  I wonder if it is because my body is busy fighting this illness and sapping my energy?  I am not putting on weight but I flippin ought to be the amount of rubbish I find myself gorging on.  Yesterday I ate an entire box of chocolates!

I have slept for two hours this afternoon.  I have felt so tired, particularly after a busy dance weekend, and the kids are out this afternoon so I had the time and space to sleep.  The need for sleep is the one thing that bugs me about this illness.  I feel like I lose too much time to sleep and am far less productive than most as a result. It also has a slightly counter productive effect as it means I then spend my waking hours doing far too much to catch up.

I saw my sons headteacher today and he was very supportive and said that as long as we keep them informed anything goes, which is a relief.  I have also emailed the lady my stoma nurse recommended I speak to.  I realised that I actually had her mobile number and so texted to ask for her email address.  I know it is a bit of a cop out but I think it will be much easier to speak to her if we strike up some conversation on email first.  Plus, I find it a lot easier to write it down.

I put the bag against my skin today.  I didn’t attach it as I can’t face testing it that far at the moment.  It made me feel a bit flat.  It’s not that big a deal.  It’s not as intrusive as one might imagine and I can tell that it would be easy enough to find clothes which conceal it – bang goes anything figure hugging though.  I am also a little, vainly, concerned that the stoma will be right where my tattoo is.  I wish I could have the damned thing lasered.  It is okay but I had it done as a dare when I was 21, at a time when my stomach didn’t feature heavily in my life (that was to be six months later).  Pregnancy has already done it some damage.  The bag will definitely cover it, even if the stoma isn’t protruding from it so that will be a hidden part of my body for a long time!

I know these concerns are trivial but it is amazing what you think about at times like this.

My husband is off in Portugal for a few days now so I have time and space to dwell on my own thoughts.  Not sure if this is a good thing or not.  In reality I shall probably just end up going to bed ridiculously early every night.  The good news is that he has Friday and Monday off work so we are in for a lovely long weekend – I can’t wait!

{May 19, 2008}   Post Weekend Downer

I’m having a bit of a post weekend downer.  I had an awesome weekend doing the thing I love most – dancing West Coast Swing.  It was a weekend I had a lot of involvement in organising and I, and my friends/teachers, had great satisfaction in seeing it come together so well.  I met some amazing dancers and really felt my dancing come on.  I didn’t dance as much as I would have liked as I get so tired but I had a good go.

The trouble is the weekend was tainted by me thinking about my pending surgery.  For hours I would get lost in my dancing and my head would work over time working out patterns and variations as well as a lot of  work on technique. We had our first private lesson which was excellent and got me really excited about our future dancing but then of course I realised that no matter how much work I put in now, come September it will be buggered for two years.  People were talking about planning a trip to the US next year and was so up for it but then realised that regardless of money I wouldn’t be going.  I know I might dance a little in that time but no where near as much as I would like and my ability in West Coast will definitely suffer as a result.  This flattens me.  I hear everyone excitedly discussing what they want to achieve and feel so frustrated that my bowels prevent me from doing this.

On Sunday we were meant to have a chat with my in-laws about the op and how they might help during my recovery.  All Saturday I kept on thinking about this chat and I so couldn’t face it.  I couldn’t face their sympathy and disappointment. In the end I danced the Sunday all day and night so got out of it.  I have only put it off for week but it was a bit weak of me.

I feel terribly selfish for letting this get me down because of my dancing.  I know I have to do this op because it is the best (and ultimately) only thing I can do. My dancing will suffer anyway when I get really ill so it is pretty irrelevant.  It is much more important that I get healthy, then stay healthy for me and my family.  It’s pants though, I find something I love to do and am then prevented from doing it.

I don’t know, but do people look at your stomach rather than your face when they’re talking to you after this op?  I bet they do, i bet they check you out to see if they can see your bag.  It’s bad enough having men talk to my breasts, having them talk to a bag of shit really doesn’t do a lot for me 🙂

My nurse rang today with details of a lady my age who has had the ops over the last five years (she had a three year delay between illiostomy and J Pouch).  I shall call her this week for a chat but it feels a bit weird.  How do you pick up the telephone and start talking to a complete stranger about bowels?  If I had her email it would be easier but I have to do it by phone. It’s a strange thing to do huh?

I had a horrible dream last night which actually left me screaming out loud in my sleep.  I am sure it is because I am whittleing.  If I am whittleing about this now, what on earth am I going to be like when it actually happens?  I do still feel excited at the same time but then that makes me feel wierd as who gets excited about having their bowel removed and having a bag?!  I feel a bit like I am wading through fog, suspended in mid air with no idea quite where I am heading.

It’s funny as I never have a problem talking but when I feel very stressed I find it incredibly difficult to get it all out.  I can talk to people matter of factly and be apparently honest and open but I am not truly.  I think truly I would quite like to curl up in bed and hide, or stand in a field and scream.  It’s very lonely being ill and facing such a huge change.  No matter who you speak to about it, even those who have a shared experience, it still feels lonely.

I guess I could really do with some sleep.

{May 15, 2008}  

N and I had a long chat last night about ‘the op’ and the logistics of having it done.  We decided that it is time for me to take back some control and have the operation.  We know it will be hard and the next two years will be fraught with ups and downs but at least there should be a positive end to it, unlike now when it is fraught with ups and downs and no foreseeable end (bar the op).

We figure that September will be the best time to have it done given that we have a summer holiday booked in August which we are looking forward to and it will be better done when my sons have school/preschool. So, I have made an appointment with my sons Headmaster to tell him what will be going on and to talk about how we are going manage it.  I am also going to be speaking with our parents this weekend to see how they can help.  Our plan is to keep B in school as much as possible but it is probable that he will have to take the odd day off to be taken care of by relatives who are far away.  We are hoping that with our Childminder and my In-Laws, who are retired, and lots of friends rallying round taking B to school and back, we will manage during my hospital stay and recovery time.  It is not going to be easy that is for sure.

Next I am going to make an appointment for my husband and I to see the Stoma nurse so that we can both ask questions.  In addition, as soon as I have the details, I shall be in touch with the patients that my nurse recommends me to speak to and hopefully have good chats with them.

I think that come the 2nd July, my next booked Consultant appointment,  I will have spoken to everyone and done the research I want to do and be ready  to get him to refer me to the surgeon.  After that I think it will all go ahead as and when I want it to as fortunately we are able to have the op done privately.  Once again, I am so, so grateful that my husband has a job with Healthcare.

I feel a bit wobbly and all over the place with tiredness and worry but I also feel quite excited and positive that finally I might get my life back as I have wanted it to be the last ten years. I know it is a long process with a lot to get through but I figure that I have managed the last ten years of almost constant flare ups so getting through the next two will be fine.

It’s been a busy week but I have a great weekend of West Coast coming up to take my mind off it, so as of tonight, I am going to have a few days break from thinking about my bowels!

Better go and get my son from nursery…….

{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