It would seem that now I have started blogging again I can’t stop!

Ali has prompted me to write about ‘the bag’.  I am going to try and write everything I have learnt, so don’t read if you are squeamish/prudish or not ready to hear the details.

I am going to post some photos later but for the time being:

My bag has never really bothered me too much.  I think that having had children and Ulcerative Colitis poo and dealing with all that comes with it doesn’t bother me at all, I just get on with it.  I admit that initially there were some sharp intakes of breath as I cleaned it with revulsion.  Not because of the filth but because of what it actually was and what it was doing on my stomach.  However, cleaning it day in and day out soon got me over this initially minor horror.

I have only ever experienced one leakage and that was when I was in hospital and during my first day of putting the bag on myself.  I just hadn’t held it to my skin long enough for the glue to take.  Since then I have never had a problem, although I do carry a spare bag and clothes around just in case.

My biggest issue has been with itching.  Initially this was due to the stitches, then stitch sores left by the removal of the stitches (little bump like blisters) which then had to be burnt off with this special stick of silver nitrate (I think that was what it was).  It didn’t hurt in the slightest and took a few goes to get rid of them.  I have had a little bit of sore skin around the edge of the stoma but this has normally been down to bag sizing and my stoma shrinking.  When the sizing is correct I have no problems.

I wear a one piece soft seal bag which can be emptied.  I change it once a day (after my shower) and empty it anything from 5-11 times a day (including twice during the night).  My output is normally quite thick as I am on iron tablets but at times it is just liquid.  I haven’t worked out what causes the changes in output yet as there seems to be no pattern. Emptying takes less than a minute and is much better than sitting on the loo in pain for ages with UC.

I am lucky in that I seem to be able to eat anything.  I haven’t tried sweetcorn and shan’t but everything else, including peas, grapes, nuts, lettuce etc I have risked trying and had no problems with. I know this is not always the case for people.

Emptying my bag is easy, I do it straight down the toilet and have never had a problem.  I tend to make piles of little wads of loo roll to help me clean it, rather than having to pull it off the roll as I go. Cleaning the stoma is easy too:

I remove the bag, wipe of the stoma with some dry kitchen roll, wash with a wet soft cloth, remove the glue, clean again, wipe with a barrier gel and then replace the bag.  This is done exactly as my Stoma Nurse showed me so I can’t proclaim anything innovative in my approach

I find that clothes wise I tend to wear trousers with a high waistband and which aren’t clingy.  When you first dress and the bag is empty tight clothes are fine but as the bag fills you tend to get a bit of a bulge which could be embarrassing if not able to be emptied.  Baggy clothes aren’t a problem right now as I have lost about a stone in weight since the op!  I also tend to wear a long vest top under all of my tops which goes down to my thighs.  I am a bit paranoid of my tops riding up and revealing the top of my bag when I am humping children and shopping bags around. I may invest in a body suit from The White Rose Collection.

For dancing I am going to try a midi bag and I have ordered the special stomate underwear I have spoken about previously.

There is one area of living with a bag I am yet to try – sex.  It’s not something I am particularly looking forward too to be honest.  It doesn’t feel very sexy having an ileostomy bag, however, I am physically getting to the point where sex is possible and indeed would be very nice I have ordered some of the Romance underwear from The White Rose Collection which allows the bag to be covered.  Ordinarily this is way out of my comfort zone but it is an issue that must be faced.  I am lucky to be in a loving, long term relationship where I feel comfortable exploring sex with a bag but I am sure it must be difficult for those in new relationships or single people looking for a relationship.  I do know that most of the problem is in my mind and that my husband sees straight past the bag (for those who don’t know, the bags are opaque  – skin coloured and you can’t see the contents through them) and just sees me, his wife, the person he loves.  It is still a bit of a leap for me though.  I confess that I will be relieved when I have my takedown and this will no longer be any kind of issue and all things can be resumed as normal

Having an ileostomy bag has at times been challenging, mentally and physically and forces me to confront things I would rather not.  However, I am learning that all obstacles are easily overcome with a positive attitude and the frame of mind that ‘it won’t stop me’.  There is always a way around everything.  With a little time and patience (and by asking questions i.e the underwear) I feel that if I had to I could live with my bag forever and certainly it would be considerably better than living with UC.

Hopefully I won’t have to live with the bag forever as my takedown will be successful and my pouch perfect, but until then I shall continue to explore life with a bag and see what it teaches me.

The last week has seen my biggest leap in improvement – about time considering it’s about ten weeks since my op (I am losing count now, which is also a good thing).  This week I have managed to get through every day without having a daytime nap and still manage to stay up until 10pm (unheard of for years!).  I have managed to take care of my children, on my own, for a lot of the time (I am yet to do more than two full days in a row but I shall next week).  I have managed to cook meals, clean the house from top to bottom (bar the heavy work such as vacuuming), I have managed to socialise (with LOTS of giggling) with a friend on a week night until 10pm, and yesterday I managed to sit in the hairdressers for three hours and finally find me again! (my hair was in desperate need of attention)

Going to the hairdressers highlighted very clearly the improvement I have made in seven days.  Last Friday I walked around the town for 30 minutes, then sat in a cafe for 30 minutes and then had to go straight home to bed, I was absolutely exhausted.  I was also still on Diclofenac three times a day (having only come off dyhydrocodeine two days previous).  This Friday I was only on Ibuprofen as and when needed (normally morning and night) and I had the energy to walk around town for an hour and sit in the hairdressers for three hours.

Whilst in the hairdressers I had a few moments of revelation.  The first being the most exciting! I realised that for the first time in YEARS I was sat in the hairdressers with no anxiety as to whether I was going to have to dash off mid cut for the toilet, this was amazing.  For the last year or so I had had a home hairdresser for this reason (but it was not as nice as the whole salon experience).  I realised that I was just sat there very relaxed – bliss.  I did have a few moments of new experience…

After walking around town for a while I realised that I would in fact need to empty my bag before I went to have my hair done.  This wasn’t an issue as we have a centre with toilets which are never used so I just headed there (they are also really, really nice toilets just a little off the beaten track).  I then had a bit of anxiety about having to empty my bag in the hairdressers, but whether by fate or subconscious purpose I happened to choose a hairdressers with a toilet in a next door building (shared by a few little shops) which is barely used.  I have air freshener but it doesn’t matter what people say the smell from emptying the bag is rather more potent that the average poo! Still, I got on with it and my God it was a million times better than worrying about or actually having to dash off to spend 20 plus minutes on the loo with UC!

My next challenge is to dance with my bag.  I am a little nervous about this but I am going to go to a venue in my town, with my husband and take it very easy.  If it doesn’t work out I shall know why, be able to come home and reassess the situation.  I hope to do this next week but N wants me to wait for another two weeks just to ensure I really am much better, so we shall see.  I managed to walk the mile to school and back this week so my fitness is much better.

Walking is still a little uncomfortable as I am still getting quite a lot of cramping in my back passage.  I am beginning to think this is due to some muscle damage as it seems to ease off if I walk and feel better throughout the day if I have a good walk in the morning.  The good thing is that it is definitely improving so I can see that it will, one day, disappear.  Another minor issue is that my posture has definitely been effected. This is not so bad as I aware of it and am working hard to improve it (dancing will help a lot too) but it is annoying to have lost my core strength.

All in all, I can see the light and as I embark on a more normal life I am starting to appreciate the enormous benefits of not having UC anymore.  My husband was delighted this morning when I got up with him and the children at 8am and proceeded to make us all breakfast – it is a good few years since I have managed that on a weekend as normally getting up and having to spend an hour on the loo was such a chore – now I practically bounce out of bed

It would seem that hope is working out *clap clap*

In the vein of Facebook updates this is how mine would look if there was room:

Lottie is…

Bored of being in the house all the time and being unfit and not exactly well

fed up of enduring this recovery period and ready to move on to a normal healthy life now

looking forward to the day that her behind doesn’t hurt!

feeling fed up and sure it is because it is so dark and miserable outside – here comes the SAD

desperate to go dancing and regain fitness and social life

very much needing a holiday to look forward to – actually, anything to look forward to would be great

feeling under pressure to resume wifely and motherly duties in full swing quick smart

fed up of sitting on the sofa watching TV

annoyed that her new underwear arrived and despite being fantastic (for stomates) it was too small! Please send the next size up quickly!

trying to make herself feel sexy – a difficult thing given the circumstances but a state of mind my husband is desperate to see return

grateful she has such fantastic family and friends but disappointed that this op has highlighted some less than great friends

pleased she can now walk the kids almost too school (just not sure she could walk back!)

hating dark nights and rainy days

loving her knitting and cross stitch but starting to feel a bit sedentary

now looking forward to being the preschool Treasurer (peer pressure is a great thing!) as it will engage an otherwise withering brain again!

needing to get well now

Here I am again. I am not sure whether I am properly back or just ‘dipping my toes’ today but we will see. I am still pretty emotionally fragile so I am going to see how I feel.

I am now nearly nine weeks post op.  The last few weeks have been much better and I am seeing improvement all the time.  I am not as well as I feel I ought to be and I am no where near normality but there are improvements.

Two days ago I managed to come off my Dyhydrocodeine.  I still need painkillers so am still taking Diclofenac and  paracetamol but only twice a day, down from four.  However, coming off the Dyhydrocodeine was a biggy as codeine is addictive.  Not taking the pills has been easy but I have been feeling very unwell for a few days with flu like symptoms which I am told is withdrawal! I can see why people get addicted to this stuff as it would be so easy to say “sod it, I can’t be doing with these withdrawal symptoms” and go back on it.  I guess that is where the cycle starts though and drug addiction is one bargain I didn’t make for this operation, therefore I shall persevere.  It’s been nearly 48 hours now so I am hoping to feel much better tomorrow.

I am now walking much, much better and quite far.  Every day I walk my sons half way to school and go a bit further when I can.  My aim is to build it up as it is a long walk – 20 mins there and 20 minutes back.  My friend then takes over and takes them to the school doors.

I am still having lots of support from my Mum, Mother in Law and various fantastic friends.  I had my kids on my own on Tuesday and although this was a huge step forward I was completely exhausted at the end of the day and was in bed very early!  I shall do another day next week and just see how I go.  Everyone is being very protective of me and not letting me do too much as they don’t want to see me go down hill again.  This is lovely but I feel I need to push myself a little now to see how far I can go and ensure I am improving.

My aims over the next three weeks are to get off all painkillers, drive again (can start that next week now I am off the codeine), walk to school and maybe a little back and get back to dancing.  I desperately need to get back to dancing as this will bring my fitness on very quickly and will also bring back my confidence and make me feel normal again.  I digress slightly but in my effort to get back to dancing I have been looking into options for bags etc. It turns out that the soft seal bag I use comes in a midi version and an incredibly helpful lady from Charter Health Care is sending me some to try (they are wonderful at Charter, they have helped me so much since I have had my stoma).  This lady also put me onto some great websites Vanilla Blush and the White Rose Collection as I want some knickers which my bag can slot into for dancing – more security. I won’t be investing in much stuff as I am hoping to have my reversal soon but should this be delayed or not be successful it is a relief to know that these products are out there.  I shall let you know how I get on if I try any of them.  If any one has any other advice for dancing with a stoma please do tell.

Talking of my reversal, I have obviously been giving this a fair bit of thought.  I am due to see my consultant in four weeks time.  Providing I am off the painkillers and feeling much better he will then order the scan of my pouch and providing that is good (no leaks) we will make a date for my takedown.  I am very nervous about this, mainly because a great deal of my pain since the op has been as a result of the pouch formation.  I don’t hold out much hope for its success because of this but an episode last night did make me feel better about it.  slightly personal and gross bit coming up…

For the last four days or so I have been having strong cramping pains where my pouch is.  I could feel that it was my pouch pulsating and put it down to my reduction in painkillers and increased activity. At times the throbbing was quite excruciating.  It felt like I needed to go to the toilet but the message wasn’t quite right and my brain was disagreeing as of course, nothing is there.  Last night I sat on the loo and felt a real urge to open my bowel – the normal way! I remembered that my Consultant had warned me that I might have to open them in order to release a build of mucus so I went ahead.  Thank goodness I did, I would guess that my pouch was actually full! It was all watery, bloody stuff but there was hell of a lot of it and almost immediately I felt much better.  This was an odd experience (not least because I haven’t opened my bowels the conventional way for two months!), but it has given me renewed faith in my pouch.  It obviously can hold stuff and although it has been uncomfortable I have lived with it so I can only assume that soon it will be 100 per cent better and there will be no discomfort/pain whatsoever. I was also impressed that it could clearly hold quite a bit and that my sphincter muscles are in quite good condition as I have suffered no leakage – I have hope again!  I am guessing I might be offered a date at the beginning of November but I would quite like to have a period of wellness and have my anaemia under control before I accept a date so I am thinking it will probably be after Christmas.  I feel a bit anxious about doing my Christmas socialising and dancing with a pouch but to be honest it will be a good experience for me.  I would quite like to get an idea of what it is really like to live with a stoma in and ordinary, healthy way so that if the worst should happen and my takedown isn’t a success I shan’t find the whole thing as emotionally fraught as I might otherwise.

So, there is me. On the mend and looking forward.  I have my moments when all this is too much. It has been an extremely traumatic experience in completely unexpected ways but I put this down to just my unfortunate personal expereince and being odd! I know for sur that others who have had this op recently are doing really well, I am very pleased for them – and quite jealous

Time to go, but I shall be back, especially as I have to display my pieces of knitting and cross stitch art which have occupied me these last weeks -this op has aged me

Back soon.

Last Monday I was readmitted to hospital and spent six days there, emerging on Saturday.  I spent a great deal of the week in extreme pain again and on morphine.  The pain from the beginning has left me fragile and scared and very, very anxious.  It has been unimaginably hard and something that will take me a while to get over.  They don’t know what has caused the problems I have had and put it down to me being ‘an unusual case’! Fortunately I am feeling better now than I have since before the surgery but I still have a way to go.

The last five weeks, since my surgery, have been very difficult for me and after a few days of constant tears and mild panic attacks I have come to realise that unfortunately I am quite traumatised by the whole experience.  I realise I have just been unlucky and I also realise that things will get better and will hopefully lead me to the point of 100 per cent good health.  However, right now this entire thing has knocked me for six and left me sapped.

My Mum has made me promise that I won’t write my blog for a while.  She believes I need time to come to terms with what has happened to me and almost close this out for a while in order to do that.  I think she is probably right so I have hear to say I am going to be taking a break.

I don’t know for how long.  It may only be days but it may be a few weeks.  I know I will be back again as I have a lot to say and a lot I want other people to hear but right now I need to rest and relax and try and put this behind me a little.

I’ll be back x