Jiving on Regardless

{February 22, 2009}   Hash Tags

I have created a hashtag for Jpouch on Twitter. If tweeting information relevant or of interest to those of us with a Jpouch, please include #jpouch in your tweet. There is also a hashtag already set up for colitis; #colitis.

You can then track all #jpouch and #colitis tweets using this RSS feed: [www.hashtags.org] and adding it to your Google Reader.

More info about hashtags can be found by searching ‘hash tags’ on Twitter.


{February 21, 2009}   J-Pouch Diet

Marianne asked me a question about diet now I have my J-Pouch which I figured I may as well answer in my main post.

The way I visualise my pouch is as an internal version of my ileostomy bag.  Having the ileostomy bag is actually, I feel, an important interim process that prepares us well for the J-Pouch.  I learnt a lot about how the small intestine works and how different things effect it as obviously it was all so visible.  I figure that the J-Pouch just works in the same way although it is further along the bowel so doesn’t fill up as quickly.  Clearly as I am not medically trained this is probably completely incorrect but it works for me.

Whilst I had my pouch I could eat pretty much anything.  The only things I avoided were peas and sweetcorn as the digestive system can’t break them down, and baked beans because of the wind they produce.  I also changed from high to low fibre i.e white bread, white rice etc which was quite a wrench as I hate brown everything before as carbs were hard on my large bowel.  All in all I made few changes and was fine.

Whilst I had my Ileostomy bag I noticed clearly how things effected the output.  Carbs always thickened my output considerably, blended vegetables too i.e soup, but unblended veg didn’t break down well and made it runnier.Stress has a huge impact.  I found that I would be emptying my bag far more if I was stressed. My periods also made a difference.    The knowledge I gained from dealing with bag has helped me deal with my pouch.

I had some diet advice from the nurse when I first had my pouch which was similar to that I was given with the I bag, the only difference was to eat porridge for breakfast and avoid fruit.  I have taken on the first bit of advice and now have porridge with various toppings for breakfast.  This definitely helps regulate and thicken my output.  I love it with maple syrup – yum.  I have also avoided fruit as it is so acidic and this won’t necessarily effect my output but will hurt my anus which is still quite sore at times.  However, I haven’t avoided vegetables and generally eat whatever I want when I want and suffer any consequences.  I still eat a salty snack everyday which definitely makes a difference.  If I don’t have it my output is constant and very runny as I am obviously not absorbing enough water.

Tonight I am going to try my first curry – I may live to regret it but what the hell, it has to be tried.  I am trying not to get too hung up on diet.  As long as I am a good, healthy weight (8.5 stones, BMI 20) and my body is healthy and I am not spending hours on the loo with pain I am happy.  To be honest, even if I was having to empty my pouch 12 times a day it wouldn’t bother me.  It takes less than 1 minute and 12 minutes a day on the loo is a MASSIVE improvement on the three plus hours when I had UC!  If that changes or my output becomes too much I shall adjust as needed.  I am lucky though, my output was normally semi solid when I had my I Bag and it has stayed the same and better with my pouch.  It is my time to proclaim myself “one of the lucky ones” :-))

I hope that helps people.  I have waffled it all out as i’m tired and not terribly coherent but will happily respond to questions if you have any.

{February 20, 2009}   CURED!

It is official – I AM CURED! Went to the see my surgeon last night who gave me the ‘all clear and good to go’ speech and set me on my way with no more imminent visits, just an annual check up.  It is really, truly, officially over!!! YAYYYYYYY!!!!

I can’t quite get my head around no more hospital clinics, no more drugs and drips, more money as no more need to fork out for parking and prescriptions, no more dealing with doctors, consultants, surgeons or nurses (although in the main they have been great), no more sitting in Dr’s surgeries, no more standing in line for prescriptions, no more dragging my ass to A&E, no more pain, no more pain, no more pain (I realise there are 101 complications that can occur post pouch surgery but they are NOT going to happen to me so I shall ignore them and concentrate on the best possible outcome). NO MORE PAIN! No more having to find childcare at a moments notice, no more needing help to do things that every normal, healthy person takes for granted, no more cancelling nights out, day trips, events.  I can finally strive to reach my potential rather than constantly having to hold back, I can focus and plan for the future without fear of the UC axe falling, I can look forward to things without the trepidation of suddenly needing to get to a toilet and spend an hour in there. No more operations, drug infusions, drug side effects, weight gain, weight loss, spots! (I haven’t had a spot since my surgery when prior I used to always have a good few).More energy, bags more energy. No more pressure on my husband and family to take care of me and the children all the time as well as work and have their own lives.  No more constant worry for me and my husband.  Better sex! It’s amazing how things improve once you have energy and your not living in the toilet :-)))) More fun.

I know there are loads more things that I will benefit from and realise over time.  Little things like the lack of tension in my shoulders that I never knew I had but that has now gone.  The constant angst over finding toilets and going to places where there were toilets close by.  All those mental adjustments that I have no idea I have to make but that I will notice over time.

I am now going to start celebrating.  Last night we went dancing together for the first time in ages.  I am shattered but it was fantastic to see my friends from my Thursday class whom I haven’t seen for over 9 months. It was also great to know that this was the start of me regaining my fitness and strength and getting further than I ever have with it.  It is going to take time to get truly fit but I have the time.

So, I am no longer a person with UC or an ileostomy.  I am a person with a pouch but that seems irrelevant and unimportant.  It’s not a label that is going to harm me.  It is a label that has made me better.  My pouch is working a treat.  So far I am one of the lucky ones.  I go about five times a day and that is likely to reduce over time.  I have semi solid almost formed stool when on no drugs,which is excellent and bodes well for the future.  All in all I am confident that there will be no problems and I am not going to waste a moment worrying about what might happen in the future.  I am going to enjoy my health and forget I have a pouch.

Off to have a lazy day now as I really am tired.  Last day of the school holidays so it calls for DVD’s and popcorn.

{February 18, 2009}   Fundraising

I have been busy, busy these last few days what with the kids being off school and my fundraising plans taking off.  I have now started the ball rolling for my first fundraiser.  I have sent notes round to all 48 neighbours on my road and asked that they join in with a street garage sale and Easter Fair on Easter Monday.  I have had positive feedback so far so fingers crossed it will come off and we’ll raise a bit of cash. We are going to divide the cash between our local playgroup on whose Committee I am Fundraising Manager and then the NACC and my local hospital.  I am quite excited and buzzing.  This won’t raise a lot of money (I am hoping for £500 plus) but it is a start.  I am hoping to raise £5k between my hospital and the NACC this year – we will see how I go.  I have also started to pull together a team to run the local Half Marathon later in the year.  I am not a runner so shan’t be doing it but my husband is leading the running and I am going to co-ordinate them all – people keep laughing at this but you know, behind every good runner is a motivater 😛

I think I must be mad, this is on top of organising the playgroup summer fair and a barn dance for the playgroup in the next three months 🙂 I like to be busy though and I love fundraising so it is all good.

I had a nice email from my ex (woo-hooo) specialist Gastro Nurse yesterday.  I wrote to her to see what they would like money raising for.  She told me that they now have a specialist Infliximab (Remicade) suite for patients (bit like a chemo room – horrible comparison but comparative non the less).  They would like some more money for this to provide TV’s and DVD players etc to help wile away the hours.  Things have come on in the year since I last had Infliximab – lucky patients!  It does remind me how lucky I was to have this team on my side, I swear they must be leading the way in UC treatment which is remarkable for a small town hospital.  It makes you wonder, if they can get it so right within the NHS why can’t others?  Anyway, I told her that money for TV’s and DVD players is coming up 🙂

Right, time to eat and watch the rest of Transformers – awesome film.

{February 17, 2009}   Fun and Plans

This week has been a bit of a baptism by fire as it’s half term and my first week completely on my own with the kids.  It’s not too bad but by this time (3pm) I am feeling exhausted and struggling with the rest of the day.  It is reminiscent of the old days but I am pleased that this is a temporary situation and soon I will have all the energy in the world – woo hoo!!!

All is good on the pouch front.  I go approximately 5-10 times a day, dependent on what I eat and how I feel. Most of the time it is semi-solid which I know my surgeon will be pretty chuffed with!  This is no longer a result of being on codeine as I am no longer taking the stuff it is purely good bowel function *round of applause*. I occasionally need to go once in the night but most nights I don’t go at all.  If I do have to go it is over and done with in about 30 seconds – gone are those days of 30 minutes plus on the toilet. How the hell I ever managed to find the time to do anything when I had UC I shall never know.

All in all, I am on the up and quite unbelievably this whole journey with UC is pretty much over.  It has taken ten years and I still can’t get my head around the fact that we no longer have the UC axe waiting to fall.  We are actually planning our first holiday abroad in six years as for the first time we feel confident that we can book something and not end up cancelling it due to me being ill – how cool is that?  It’s even better as we are going to celebrate our ten year anniversary (six months early) by going to Las Vegas for one week just me and hubby (going six months early as we couldn’t afford to celebrate NYE in Las Vegas and we also want to be with the kids at the real time).  I am SOOOOOOO excited.  It isn’t booked yet but we have pretty much agreed what we want to do , just need to tie up the finances and get it booked – yayyyyy!!

I have loads to look  forward to.  After years of not planning more than a month in advance we have gone planning mad.  March we are off for an Intensive West Coast Swing weekend, April either a spa break or another dance weekend, May we are seeing Eric Clapton at the Albert Hall (a life long ambition – he just rocks!) and June it is our birthdays so we will be doing some celebrating and I am off to Ascot Ladies Day with my Mum (hat yet to bought).  Then in July/August Las Vegas baby!!!!  We have gone mad but we deserve it.  It has been hell of a ride and the end of it needs acknowledging and any excuse to celebrate and make good will be taken with absolute enthusiasm.  I am going to celebrate for at least a year (and in reality, the rest of my life).

Right, off to cook the dinner – so much for the exciting life :-)))

{February 13, 2009}   Flaws

I have a flaw in my personality and that is intolerance of stupidity/mistakes.  Anyone who knows me well I am sure will testify to my being very tolerant in general, open minded and unjudgemental except when it comes to stupidity.  I can’t stand people making the same mistakes over and over again.  I can’t stand the fact that I can see negative patterns repeating and repeating in their lives and they can’t – it’s mental.  I’ve always been a dooer, the kind of person that if there’s a problem I do whatever it takes to sort it out be that counselling, telling someone how I feel or major surgery.  I struggle to tolerate people who can’t do that, which really is a flaw and terribly detrimental to my friendships. You know, the kind of people that moan about being fat but stuff their faces with cakes and crap and make no effort to be fit or eat less, the kind of people who drink too much and then moan about feeling ill, the kind of people that are told to give up smoking/drinking/eating too much for the sake of their health and they don’t or the kind of people that go from one destructive relationship to the other and can’t see that it’s them and their bad choices.  I know it’s not easy, and I am completely tolerant of people that try but just end up trapped but people who relentlessly moan about their bad lives and yet do nothing to make it better PISS ME OFF.

It seems that I have good, strong friendships with people UNTIL I tell them my thoughts on a paticular mistake and then they go, disappear.  I have the kind of friendships where it’s cool whilst they need me  but as soon as I need them they are no where to be seen, they can’t cope with my inability to be there for them at my times of need. I have the kind of friendships where I am as loyal as dog (another flaw perhaps?) and their loyalty is fickle. It’s big sister syndrome.  I am a big sister literally and as type.  The trouble with big sisters is that everyone imagines they can cope and they are strong and don’t need help and support.

I’m also pissed off with my family who are a bunch of wonderful fuck ups but at times their nature to fuck up really gets me.  I had a particularly difficult incident last night where one sister (I have two) told one brother (I have five) something about our Mum which he never had any reason to know (she tried to top herself when she was pregnant with him – long, sad story but all ended well).  Why would she do that?  For the life of me I can not imagine and now I have a lot of pent up anger that I can’t let go of as if I say anything it just adds to the drama and after a lifetime of learning I now know that is even worse for me.  So, I am ranting on here, my wonderful anonymous blog where I can say what I think – sorry guys.

Right now I am intolerant of stupidity and for once not intolerant of bowel – some things do change and some things are good 🙂

Rant over.

{February 12, 2009}   Today

It’s official, I am definitely on the mend. How do I know? I’m bored. My brain has started working at its usual 100 miles per hour and I am getting through jobs/chores like superwomen and still bored – it’s a good thing. It is just coming up to 10 am and so far today I have got both kids up and ready for school. Sent one off to school, one is with me all day for the first time on my own since my op. My son and I have sorted out his birthday thank you letters, I have cleared my desk of paperwork, made phone calls, sorted out receipts for my husband to do our accounts, sorted out various plastic boxes full of crafty stuff, tidied the house, emptied the dishwasher, put some laundry on and made the beds.  This is all whilst entertaining my three year old with colouring in tips and food! Ahhh, the life of a Mum.

My friend has just kindly dropped in a lasagna for me which takes a load off in terms of having to cook tonight.  I know that by the time B gets home from school I shall be shattered and cooking will be a nightmare.  I hate using processed, shop bought food so I would have tortured myself by cooking something decent but heh, my friend has rescued me and provided me with a beautiful home cooked meal – I love my friends.  I have mentioned this before but the best gifts I have had whilst ill have been home cooked meals.  It is so lovely not to have to think about feeding myself and the family and really takes the pressure off.  I now regularly cook meals for poorly friends or people having a hard time of it and it always goes down well.  I recommend doing this over a bunch of flowers anytime.

My next aim for today is to get out of the house.  I haven’t been out much so I am going to take a trip to the post box to post those thank you letters we worked hard on and then pop into a neighbours/my childminder for a cuppa and a chance for W to be entertained by other children. I can’t wait until I can drive again.  There is no physical reason why I can’t drive now I just don’t like driving whilst on codeine etc.  I am lowly reducing and should be drug free by the weekend, although I should think that by then I shall be on Imodium but that doesn’t count.

Next week is half term so I am glad I am feeling better. I am sure it will exhaust me but we have some good stuff planned to keep the kids entertained and on Wednesday they go to the childminder for the day so I get my break mid week.  I am actually looking forward to getting out and about with the kids and seeing people again. I am going a bit stir crazy sitting around this house all the time.

Right, time to get off my bum…

{February 10, 2009}   Tooth and Stitches out

Well, the tooth is finally out and I now have a gaping whole at the back of my mouth.  Fortunately it is not visible when I smile or talk so there is no rush to fill the gap.  It hurt like hell but fortunately I am on plenty of painkillers at the moment which have helped!  I am so relieved it is done as I am truly sick and tired of pain and discomfort and am desperately ready to move on with my healthy, pain free life.  I also had the steri strips removed from my wound today (put on after the staples were removed).  It looks okay and it is nice to see my stomach as a whole again although it isn’t exactly pretty now,  what with two huge scars and a dodgy tattoo right under my stoma scar – NICE!!!

I am feeling much better in terms of the reversal.  My output is settling down nicely and I am not going at all at night, although my nurse did explain that the codeine is helping that and once I come off it this might change. I have Imodium to take when this happens.  I have never used Imodium before but I hear it works a treat.  I have no idea if there are any long term effects of long term use of the stuff but I shall investigate that if and when I need to take it.  I would prefer not to have to take any drugs but after all these years I am not adverse to drug taking and if needs must then that is what shall happen.  I just want peace and happy bowels now 🙂

I am enjoying Tweeting on Twitter.  If you haven’t joined in then go online to Twitter.com and find Lottie30 and request to follow me.  I am using this ID (I have a normal one in my own name) to concentrate on all things UC related in my life and my (rather dull) life in general.  They call people ‘followers’ which is a bit off-putting, I am not a cult!!! Still, do join in the conversation.

Today is the last day I have my in-laws with me.  They have been great and done ever such a lot for me/us but the very nature of in-laws is that they can be difficult to tolerate and after two days I am glad they are leaving tonight 🙂 They are lovely and I couldn’t ask for better but they have funny old people habits which drive me bonkers!!  My Mum is so much younger (50) that I don’t have that with her.

I am ready to get back on with life again now.  I am still going to have various people helping me with school runs but otherwise I hope to be back to normal as of Thursday (kids with a childminder on Wednesdays).  Next week is half term.  I have plenty of activities arranged for my boys and hope that my Mum, who is also off next week, can spend a few days with us and save me getting too knackered.

All in all, I feel good today – ready to move on to the next stage 🙂

{February 9, 2009}   Being Disabled

Yesterday was a good day, I am starting to feel much better and more energetic.  My friend came over to see me and we had a lovely afternoon chilling out and eating.  I am starting to feel a lot more relaxed about eating and am enjoying my food again, especially my chocolate 🙂

My in-laws came to stay last night and are here for two days to take the pressure off with the kids so that my husband can go back to work.  They drive me potty but I apreciate their help and know it will help me get fully fit without pushing myself.  I am hoping that by the end of the week I shall be better and able to get on with things as normal next week.

My pouch is doing well.  It is behaving a little temperamental today ut I think this is because I am anxious about having my tooth extracted this afternoon.  I could so do without it but a I have learnt that wishing doesn’t work, it is just best to get on with these things.

I was reading some interesting stuff in the Charter Healthcare newsletter last night.  Did you know that having a stoma automatically means you are disabled under the DDA?  This means that you are entitled to ask for an assesment at work to take into consideration your toilet needs and also means that you are entitled to use disabled toilets and parking.  Years ago you used to have to register to be considered disabled and although some local authorities still require this it is not required by law.  If you don’t have a disabled loo key and or a blue parking badge I would recommend that you apply for these from your local council.  You are entitled so use it.  This supposedly comes under the ‘incontinence’ part of the act but for some reason I think I am right in saying that UC doesn’t – I don’t get this at all.  As it happens most local authorities and most organisations will still treat you the same with UC so it is worth asking and seeing if you can get these things.  I know from experience that having the key and being able to park near a toilet makes all the difference.  Being considered disabled doesn’t necessarily entitle you disability benefit although more people are getting it with UC and a stoma, particularly at Appeal stage,  Speak to groups like the NACC who are very good at helping with such applications.  Another thing I learnt was that if you only have one toilet in your house you can apply for a grant from the local authority to have an additional one put in – Ali take note, I am certain you and hubby must have a very strong argument with you both having UC.

So, there you go, don’t say I am not helpful 🙂

Off to watch Iron man now to relax before my extraction – eeeekkk!

{February 7, 2009}   Thinking forward

Today has been fairly uninteresting, but that’s good. My pouch is definitely calming down and have only been five times so far today.  I have not been to the toilet at all the past two nights between 9.30pm and 6.30am – superb! I have really high hopes.  Unfortunately the pain hasn’t eased that much.  I find that come 6.30am I need to get up as the pain has been waking me up hourly from about 3am and gets too much by then.  I just ache really badly and my pouch is in continuous spasm when the dyhydrocodeine wears off.  It took three months for this to settle down last time so I am trying to be patient. At the end of the day the codeine is working so that’s something.

I am now addicted to Twitter.  I Twitter under my blog name Lottie30 so some of my posts are a bit too poo related for some (go see and follow me). I may start a Twitter as the real me so to speak but to be honest the real me, aside from my UC, just aint that interesting 🙂 I have been thinking a lot about how long I shall continue blogging for, given that I no longer have UC and am, i hope, going to move into a very healthy phase of my life. I do, however, love blogging and as I intend to enter a serious fundraising phase for NACC and my local hospital I figured I shall still have relevant stuff to talk about.  Plus, I decided to write this so that other sufferers could see how life really is with UC and the surgeries.  I think this includes recovery – it’s no good hearing all the bad stuff and never getting to hear the good outcomes.  So, you’re stuck with me a while longer 🙂

Fundraising, my thing.  I am, by training and career a professional fundraiser (meaning I get paid to do it).  Prior to having my second and last son I worked as an independent consultant advising small charities how to plan their fundraising and actually do it.  After the birth of my son I became too ill with UC to go back to it and have not been able to work since for obvious reasons 🙂 However, that is all changing.  Three months ago I became involved with my sons playgroup as their Fundraising Manager.  Despite still recovering from my first op I managed to arrange a very succesful Christmas Fair.  Although this is a departure from my usual fundraising activities I have really enjoyed getting involved and doing something practical.  I shall continue to fundraise for the playgroup but I really want to do some community fundraising for our hospital and the NACC.  I have a few ideas.  I think the first thing I am going to do is arrange a street garage sale with proceeds going to my charities.  I think most of my neighbours will be up for it – we are a friendly street.  I am also in the process of talking to a group of people about running a half marathon for our charities.  I have no desire to run myself but my husband and a few others do so that shall be good.

I am going to investigate what the NACC and my hospital need money for and then set a target.  I think I would like to raise about £5k – ambitious but challenging and definitely fun.   It feels necessary too.

Anyway, time to give my boys some attention.

et cetera