Jiving on Regardless

I have just read a truly inspirational blog from someone who has REALLY suffered the consequences of UC in the most tragic and difficult way. She is still fighting despite every obstacle put in her way and her story is humbling and inspirational. It makes my UC journey seem like a walk in the park.

Please read http://wholeheartandsoul.blogspot.com

I tried to leave a comment but her comments aren’t working. Here is what I wanted to say and I hope she sees it at some point or I get to comment later:

I have just come across your story on J-Pouch. I started reading thinking this girl is like me (30 something, in love with husband after 11 years and have J-pouch after suffering with UC and a difficult pregnancy)and your experience; yep, been there, yep, been there, yep, been – no, by the Grace of God I haven’t been there. Your story, whilst being similar to mine in many ways is far harder and the way you tell it is humbling.

I truly hope that life gets better for you and that you have many bright points ahead of you. You said in the synopsis of your story that you aim to be an inspiration. I can assure you that the little I have read of you has already inspired me. Keep writing and keep hoping – things have to get better.

My best wishes


{February 24, 2009}   My Son and Constipation

I took my son for an appointment with his consultant today and thought I would relay his story.

My oldest son was born with what is called an ‘anal ring’ this is a band of skin left around the anus as it doesn’t develop and open properly at birth.  We weren’t aware of this when he was born and as a consequence we spent the first six months wondering why our beautiful boy was so unhappy and distressed all the time. When he moved onto solids his distress became out and out agony, with him regularly screaming out as though someone was killing him.

We took him to the doctors countless times just to be told he had colic, he was just a fretful baby, we were overly concerned first time parents, he was just getting used to solids, had severe reflux and various other crap reasons. We knew that something was desperately wrong as we were the ones who couldn’t put our baby down because he screamed with distress, he could only fill his nappy when sucking and he screamed in agony after feeding, he vomited copiously constantly and was very under weight.  This was all at a time when my colitis was bad and I spent months sitting in the toilet crying in agony myself with my newborn baby also screaming in agony on my knee – not a pleasant time.

Eventually our concern drove us to take him to A&E and refuse to leave until they had found out what was wrong with our baby.  Unfortunately we were right, he was dehydrated and they finally acknowledge his low weight and started looking at him as ‘failing to thrive’ – not nice terminology but basically means not gaining weight properly which needs investigating and monitoring.  They tried to discharge him but we refused to leave because they still hadn’t told us why he was failing to thrive.  Eventually they put it down to severe reflux and sent us away with Gaviscon for Infants. We went home.

Whilst at home the Gaviscon helped the vomiting but not enough.  All of the other problems still remained.  We took him back to A&E.  This time we were not prepared to go until he had been examined thoroughly and we had a reason for his problems eating and pooing.

This time they examined his rectum and found the ring. Basically the hole in my sons anus was not large enough for him to defecate properly so he was becoming ‘backed up’ and constipated.  Moving onto solids had caused this to be a huge problem.

To rectify this we had to take him off solids at 9months and feed him up for over a year on high calorie prescribed milk (consequently we have had lots of problems getting B to eat food as he was two when he started solids properly).  He also had a minor procedure to stretch his anus.  This was awful as seeing your baby go under anaesthetic is horrendous but I then had to insert a finger like instrument into his rectum twice a day for a year.

The problems he had had meant that his bowel never got used to functioning properly and became lazy. As a result he has suffered from severe constipation his whole life.  He was on medication for four years but then we had a break and thought he had improved until about three months ago when I got a call from school saying he was on the toilet screaming in agony.  It was awful, I was three hours away having gone Christmas shopping and couldn’t get back to him – very stressful.

We took him back to the consultant and he is now back on medication and I have been told that he will certainly need this for the next two years (he is 6 in July) but possibly for the rest of his life.  This is no big deal as it has no side effects, it is just a bit of a chore.  Fortunately it is helping and he hasn’t been in pain since.  He has a massive fissure and pile but hopefully these will resolve themselves after a time on the medication (Movicol and Senna).

It is weird but his bowel problems aren’t that serious but I would rather have colitis and ops any day than watch my son have bowel problems. I am really hoping that he doesn’t develop colitis and his consultant says there is no evidence to suggest that he will but I don’t hold out much hope.  There is a strong hereditary link in my family and his bowel is already under strain.  I really hope that constipation is all it ever is.  Whatever happens my time seeing Gastro consultants isn’t as over as I had thought!

There you have it, another member of my family with dodgy bowels.  Nasty organ that bowel thing – who the hell invented it :O)

Off to do the pancake thing…

{February 23, 2009}   Tired, tired, tired

I am really feeling the post op exhaustion today. Goodness me, it is catching up with me. I think it is a combination of doing more and finally being completely off any painkillers, not so much as a paracetamol for 24 hours! Itis frustrating as I haven’t done than much really. I got the kids ready for school, walked to school which is about a 20 minute brisk walk each way, had a cuppa at a friends house and did a little tidying up. Took my son to Playgroup this afternoon and just collapsed in a heap for two hours.  I feel awful, really tired and achy but I know it is just exhaustion nothing else.  I can’t wait to be fit and energetic again!

Otherwise things are good.  On Wednesday we are booking our trip to Las Vegas.  We have decided to go on the 25th July which will be a year to the day since my first op (i can’t be bothered to check my last so apologies if I am repeating myself).  It is going to be bloomin hot out there then but I don’t care, we will sweat our way through it and enjoy it immensely.  I just want to have it booked now so that it feels like it is really going to happen. We just have to wait for N’s booking system to go live at work so that we can use his corporate discount.

Right, gotta go, my eyes and hands just can’t cope with typing as far too tired.

{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…

et cetera