How to holiday with a Stoma

So, your thinking of going on your first holiday abroad with a stoma!.  Here are some things I found useful.

• Have a weekend away, near home first,this will help you build your confidence.
• Make sure( if you need to) your doctor/consultant/stoma nurse is happy for you to go away.
• Speak to your stoma nurse about how to pack for a holiday, she/he will always have lots of tips for you.
•  Get your prescription and order well in advance of you holiday, this applies both stoma products and medication you are using or may use while you are abroad.
• Visualise different circumstances, ie. How will you empty your bag on the plane.  What do you need to achieve a happy out come for this.
• Get a travel certificate and fill the details out, this will have the reason you require stoma appliances in several different languages.  
• Travel insurance...is a MUST. Phone in advance, depending on your medical history you may need to call quite a few until you get a good deal.
• Make sure your EHIC European Health Insurance Card is up to date, but remember this is not like having free insurance, you still need full travel insurance.
• Check your passport is in date or still valid.  
• Go shopping...woohoo buy new clothes.
• Be brave and stay confident, but if you have a wobble or even a little cry, its ok.  Just keep going.

It is a sensible idea to take a good supply of loperamide (immodium) and also some dioralyte(to rebalance lost electrolyes).  You are more than likely going to enjoy a tipple and this can result in a high watery out put.  Also different foods and eating at different times, than your usually used to, may change your out put.  So think prevention, rather than cure and keep on top of eating right and drinking enough fluids...fluid balance is key.  Do not get dehydrated, you will want to make the most of your time on holiday, rather than feel poorly.

Once you have worked out how many bags you think you will need and have received your order, now is the time for re-sealable freezer bags.  They are very cheap and are so handy to have.  My top tip, is to have a few rolled in your emergency stoma kit, then if you need to empty and have no where to do this, you can empty in the bag and zip it up and put it in a bin.  This also works on trains that are a bit bumpy to say the least, if you find it a challenge to empty from sitting on the loo, you may not want to kneel down on a floor that may not be clean, so wip out a freezer bag and empty in to that.  You can then flush the contents down the loo, with a much better aim.  Job done.  

Anyway, back to the delivery and order.  I worked out I wanted to take around 45 bags.  If you are travelling with more than one suitcase separate these in to two, in case one goes missing.  And pack a comfortable supply in your hand luggage.  I brought several different types of bags, an emergency high out put bag, a few transparent for the plane journeys, smaller and larger bags.   As the stoma pouches come in packs of ten, I generally put ten in each freezer bag and wrote a label on the front.  So I could keep on track of what I had packed.  If in doubt, pack more, that was my motto..it was exciting I felt like I was packing for an expedition.  It is also worth a call to your delivery company to see if they delivery abroad, mine did so this put my mind at ease.  And remember people have stoma's abroad too! ;)

During my holiday I enjoyed the swimming pool and spa and was in and out of hot and cold baths no problem, now is the time to use those funny stickers you never use!! Pop one over the filter in your bag and away you go.  If you want use flange extenders to make your bag feel more secure. 

I always use Ostomart Mint drops to mask the smell of my toxic poo, I used even more on holiday because I was emptying my bag in lots of different loo's!!  Lucky me.  So don't be shy, ask your stoma nurse or delivery company for products to help you mask any smells you may be worried about.  I emptied my bag on both journeys of the plane, and with the mint drops in it, the loo actually smelt better after my visit!

Remember you can not put an adhesive remover spray in your hand luggage, so take on some adhesive remover wipes instead.

Think about what YOU, will need to make your holiday enjoyable.  You probably really deserve this time away. 

I hope this has been helpful.  I will write more tips and experiences of my holiday next time.

Lx

My first holiday abroad with a stoma :)

I really shouldn't be writing this, or sitting down watching Kirstie's Vintage home :) but I am! I should be packing!!!  Tomorrow at 5.45 am a taxi will come and collect us to take us to the airport.  This will be my first time abroad with a stoma, eeekk I am a little scared.  I'm hoping I have got my body to a good healing place and will keep well for the next 12 nights.  It has been quite a task making sure everything is organised for my holiday.  I will definitely write a post on what to take for a holiday, but once I get back.  

Life has been busy and I am slowly getting there, wherever there is!    I am now in an acceptance mode, I accept I have crohn's, I accept I will have a permanent stoma, I accept I will always deal with pain and I accept I may or may not need surgery again.  My illness has taught me to appreciate the little things, to not make big of the annoying things and to make the most of each and every day.  So I will make the most of this holiday and will try and remain calm and confident all will be all right.  

See you on the other side x

Talking Crohn's and babies

Be your own advocate :) I was yesterday, I went to the hospital for a post op check up.  A young doctor called my name and I walked in the room and thought!! No, you know nothing about my complex history and today I want answers.  So I asked to see my consultant :)  Sometimes you have to be confident and BE YOUR OWN ADVOCATE :)

I feel much happier as I now understand more of what has happened, so I have crohn's and I have never had   Ulcerative Colitis.  I'm slowly coming to turns with this and accepting it.  Some times I can deal with it and other times I feel sad, angry and frustrated.  I'm learning that it is ok to feel like this.

The very good news is I am officially allowed to start a family :) It's a fabulous feeling to know I have reached the place, were I am not on any medication and I don't have any planned surgeries coming up.  Prof has said I can go off and start and family :)  I am so super happy about this, as having children is my dream.  So although not an immediate plan it is such a good step in the right direction.


L x

Busy Living Life :)

It's been a few week's since I've posted and I've been up to lots of lovely things.  I have been making the most of the days when I feel good and have more energy and it has been so good to get out of the house.  I was housebound for around three months before my last operation so being  able to do things again has been wonderful.  I am back at my knitting group which is lovely, and I took twelve baby blankets to be given to the local hospital.  I even joined a new knitting group as well.  I have visited family and spent time with my nieces and nephews.  I have been to a beer festival :) and even had some Indian Pale Ale which was delicious.  But the best thing I have done is achieving my goal to be able to watch Team GB at the Equestrian Events during the Olympics :) It was awesome.  Last weekend I went to the Paralympic's and watched the Athletic's, it was a lovely summer's evening and we we cheered and clapped and had grins on our faces for the whole six hours we were there.  Watching the Paralympic's has been amazing and inspiring. 

Help For Hannah

                                         

My lovely friend Hannah is an amazing young lady who has to battle with Ulcerative Colitis and several autoimmune disorders.  Hannah has had to endure so much and this summer was admitted to hospital for yet another operation, this stay lasted a long 39 days.  Despite her battle with ill health and chronic debilitating pain she remains an inspiration and source of hope to thousands of people who suffer from a chronic inflammatory bowel disease.   Including myself :)

A picture of Hannah with her IV chocolate drip :) 

Unfortunately Hannah has reached the maximum amount on her insurance policy of $100,000. 

 This means Hannah has to find a way to pay for the treatment she has already received and any further treatment she will need including her daily meds.

Hannah is currently on 13 different meds daily!

Hannah's friends have set up a medical benefit website Help4Hannah as she has currently no means of paying these bills because due to her ill health she cannot work.  Please take a look at Hannah's journey  and the verses that encourage Hannah.  If you are able to donate, thank you, and if you can't please keep Hannah in your prayers.  

Thank you so much for supporting Hannah x

A new stoma :)

I had surgery last Monday to disconnect my pouch and form an end-illeostomy.  Unfortunately they had to open me up so I was very sore and still am.  My new stoma worked straight away, although very very slowly.  My wound is looking good and I am starting to feel better.  The pain in my bottom has decreased so I'm pleased.  It is a relief to have a stoma again, and I know I will always have one.  I hope that we will get on well! LOL!


According to my surgeon everything went well, there was some scar tissue but it was a normal amount and wouldn't be a problem.  They discovered a cyst on my right ovary and so drained this for me, so I was kind of lucky they saw this.  This shouldn't be a problem.  He didn't say much else, he was too busy! I am to go home and relax and just get on with life.  I am learning to not expect too much and just make the best of things as they are today.  I am on painkillers at the moment but no other medications.    So I know things could be a lot worse.  My mind is all over the place, stoma, no stoma and now stoma...forever.  Not the life I had planned that's for sure.  I pray to God I will now be able to resume a life that I so desperately want.  I want to be the best girlfriend ever because my boyfriend whom I love so much really deserves it.  He has been amazing during all of this and I want to make him happy.  I'm so overwhelmed by everything that has happened I feel that everything will always go wrong for me, what's next!?  I don't want surgery again, I don't want to go back to hospital, I just need a rest from it all.


So I'm home again, with a new stoma and trying to work out how  best to care for it, which bags, which seal etc.  I'm watching films and eating soft foods and drinking plenty of sports drinks. Everyday is a blessing and being home is wonderful.


x 

The Roller Coaster

Hello :)


I've been questioning my need to blog, why don't I just keep a diary instead?  Why let the world know? I feel like I'm always moaning, and no one likes a moaner.  But yesterday I was reading a blog and I could relate so much and it helped.  So although my story of having j-pouch surgery may put some people off, lets remember I'm in the 5% catergory. Hopefully people can learn from my experiences and take something away from reading my badly written ramblings :)


Life with an IBD is like a roller coaster...and I've never liked fair ground rides!  The good news is my crohn's disease is reacting positively to the antibiotics and I'm in a lot less pain.  Thank you God.  Some times I even think maybe I should try and keep my pouch and avoid going back to a stoma.  But in my heart I know having a stoma will be more manageable.  I just want to skip the operation part and be back with my stoma enjoying life.  I've been through this bit so I'm scared, I don't want to be in pain, have an NG tube, catheter, cannula etc etc... I'm also worried how the skin around my stoma will heal because they are going through the old scar.  But I can not control any of these things and must focus on the positive things in life.  


I am going to the toilet a lot less and also sometimes sleeping through the night which is fantastic.  I am eating more and have put a few pounds back on.  I have been having really bad joint pains but nothing I can't cope with.


I also had my first counselling session last week, I am going to go once a week for a while, although I will take a break from it, while I recover from my operation.  It was lovely to talk openly and not feel that I'm burdening or depressing someone, she was there to listen to me and that felt good.  I would recommend counselling if your struggling to cope with living life with a chronic illness. 


The operation is only 6 days away!


Keep fighting x 

I have Crohn's

I have Crohn's...hmmm hang on I thought I had UC!!  Still trying to get my head around this.  I had my appointment last week, and was so nervous.  I was greeted by the Prof, so I kind of knew there and then with his hand shake that it wouldn't be good news.  Otherwise I would have been greeted by his Spr.  The news was I had ulcerations and deep fissures and biopsy show granuloma's.....he was getting too it but I said "So I have crohn's then!", "Yes" he said.  I was in tears and thumped the chair arm with my fist a few times, not my finest moment.  Apparently I'm in the lucky 5% of people who are diagnosed with UC, have pouch surgery and then are told they have Crohn's.  Well I don't want to be in the 5%.  


The plan is to have surgery to create an end-illeostomy (stoma) and defunction the pouch.  The Prof would not recommend more pelvic surgery because of my determination to have babies.  I am not mentally strong enough to have my pouch removed and bottom sewn up just yet.  We are hoping the Crohn's I have will be more manageable when its not being in use because of the stoma.  I am hoping for things to back to how they were before take-down only three months ago.  We are hoping that this will give me the best chance to be able to have children.


Meanwhile I am on two types of antibiotics which over the past two weeks have really helped things.  Going to the loo is less painful and I am taking less pain killers which is great.  The antibiotics are making me feel really sick and are notorious for giving you a bad tummy.  So my guts are really aching.  


Emotionally I'm all over the place, and feel so overwhelmed by the thought of having a permanent stoma even though it will be a huge relief when I have one again.  Luckily I start counselling in two weeks so that will help.  Surgery is three weeks away so I am trying to prepare myself.  I saw some great advice on-line which said to write yourself a letter which describes all the pain etc that you are going through so that on the days when you feel sorry for yourself and are maybe having troubles with your stoma you can be reminded that things used to be a lot worse.  I am writing my letter at the moment it is nearly three pages long and I haven't finished yet! lol


Wishing you all a happy day, keep strong x

Examination Under Anaesthesia

Hello :) long time no blog!


I've been avoiding writing for a while as I've needed peace and quiet and have not felt up to it.  I don't know where to start! (sigh)  


I had my EUA (Examination Under Anaesthesia) on Monday morning, it was one of those days where everything seemed against me.  We couldn't, get a taxi at first and then managed to call one and waited for it in the rain for AGES!  We hit several traffic jams,   was stuck behind the bin men and had a taxi driver who didn't seem to know where to go even though he had a SatNav!  We finally arrived really late, I had phoned them on the way to say sorry and I was coming..honest!  Once in hospital feeling fraught, sick and dehydrated, we stood waiting for the lift.  Which turned out to be broken!  Argh...So we climbed up to the fourth floor which was a complete mission and made me realise how ill and unfit I really am.  Once we were at the Surgical Admissions Lounge we sat down and got our breaths back, I wasn't on the list but I knew to sit and wait for my surgeons.  I got my crochet out to take my mind off things and then saw various different nurses and my surgeon.  I didn't have to wait long and was soon in my gown and slippers and being escorted to theatres.  Richard held my hand and we gave each other a huge hug and kiss and said goodbye.  Once in the anaesthetic room, my nerves calmed as the Anaesthetist and assistant distracted me.  I was soon feeling very sleepy and then the next thing I'm feeling pain and realise I'm in the recovery room.  The nurses got on top of my pain relief and I was soon taken up to the ward where I dozed until Richard came.  


I had a horrible afternoon, I was uncomfortable and really didn't want to go to the loo.  I was petrified it would be excruciating. A few hours later the surgeon came to see me.  He looked sad and I knew it wasn't going to be good news.  He was really sorry this was happening to me,  and according to the Prof " I have a very crohns looking bottom", I burst into tears!  How can this be happening to me.  He said that I was right, I had lots of very deep fissures and also ulcerations.  I got the impression it was pretty awful in there!!  I said that now he can appreciate how much PAIN I'm in, and he upped my pain meds.  I also started two different types of  antibiotics.  I was told the J-pouch is not an option with crohns, if that is what I have.  I told him I wanted an End Ileo (stoma) and it all removed.  He said that they would not be able to remove the troublesome J-pouch and anus if I had crohns as this may cause further problems.  


So we wait for the biopsy results!!!  And go from there.  I cried uncontrollably when he left and Richard did his best to comfort me.  At that point I just wanted to die!  Sounds traumatic but that's what I felt.  We waited a further six hours for all my medications and finally arrived home and got straight into bed.  


I'm devastated and I just want to get my results and put a plan in place so I can not be in pain and be healthy again.  I want my life back.  


Please pray that God gives me the strength and courage to get through this.  


X

Hard Times

The last three months have been a complete nightmare and I really hope to be pain free and feeling better soon.  I phoned the nurse on Wednesday to ask her if my consultant or his Spr could see me that morning in clinic.  Or I said I will see them in A+E later on.  She is such a lovely lady and I thanked her again for helping me, I think she feels just as frustrated that this is still going on.  My boyfriend took the day of work and we made our way to the hospital, I sat uncomfortably in clinic until the last person had been seen.  I am lucky that the Spr is exceptional and is I think a good man, I know he wants the best for me.  You can tell with doctors, some don't give a damn and some genuinely want the best for there patients.  I told him everything, that I'm losing weight, I can't eat because of pains and also great difficulty of emptying.  How I'm in pain all the time but the worst is when I go to the toilet.  Which happens about every three hours day and night, leading me to be completely exhausted.  How I feel sick and have vomited.  All these things have led me to be overwhelmed and desperate for help, I am extremely depressed and often feel I may have to take drastic actions to make it all stop. This is not easy to admit, but there it is.  
He listens, looks concerned and saddened, my boyfriend is holding my hand, whilst I am in floods of tears.  I ask him, how he would resolve all my problems which he doesn't know until he has a look at the pouch.  He offers to look at the pouch in about 10 days time, which makes me cry even more.  "No, I cant cope with this for that long.  I just want you to give me a permanent stoma and take everything away."  He realises the situation has reached the next level, so he calls the Prof.  Who is then in the room in less than a minute.  So I tell everything to Prof, who is also very disappointed and sad this is happening.  He offers to perform a EUA (Examination Under Anaesthesia) on Monday which is only four days away.  He explains that he will give me a permanent stoma and take the pouch out but, his list on Monday is full, but he has time to do a EUA.  I agree to this, but make him promise that he will respect my decision and will promise to help me.   
It's obvious that the pouch does not function well and they have said what might be an option is to redo or defunction the pouch giving me a temporary stoma and then trying again.  Well, that sounds as appealing as a slap in the face with a wet fish!! No thanks.  
So I'm doing a lot of soul searching, praying that God gives me the strength and courage to get through each day.  But I think at this moment in time the best thing for me would be having a permanent stoma.  If they had an empty slot on the theatre list tomorrow I would run in to that theatre with my butt hanging out of the hospital gown.


Oh and another thing..............its a biggie!!!!  


I don't have a J- Pouch!!!! Yep that's right!! I have an S-Pouch!!!!  When this was said I could not believe my ears, had I heard that right!!!!  Well, I think my S-Pouch....sucks!  


Well, I won't be getting any literary awards for this drivel, but there we go.  This is my life!  I'm off to fight with the tv and remote control, why do things not work when my boyfriend is not here to fix it!! ha 


Keep Strong x

Hospital trips and back to the GP.

I really want things to be going well, but they are not!  At the weekend I became overwhelmed and just completely exhausted by everything.  Going to the toilet remains very painful and also very difficult.  I am having real trouble emptying my pouch.  I have been feeling exhausted and generally unwell, I have been nauseous and vomited which I suspect was from the pain.  I have suspected a fissure for a while and yesterday I managed to see a colorectal surgeon who confirmed this.  He also checked to see if the last dilation had worked, which it has.  So I suppose that is good but also means that I still have problems, he mentioned pouch dysfunction but I have to speak to my team about that!  Unfortunately my team, consultant and registrar and SHO are all on leave!! which leaves no one to really help me for a week! hmm I really cried when they said that, I pleaded that they must help me and that the pain was unbearable.  As I am allergic to some painkillers and they don't want me to take codiene I was only left with paracetamol.  The doctor was not allowed to prescribe me other pain killers because of hospital policy.  So my option was to stay in hospital for a week while I wait for the team to come back, how depressing is that.  Fortunately the nurse told me the GP would be able to prescribe me a patch or oramorph.   
We got back from the hospital and I was so lucky to get an appointment with the GP.  I explained the situation to her and she was very understanding and worked out a strategy to get on top of my pain management.  This actually bought me to tears as well, because I was relieved to be getting pain relief.  She also wants to see me in two days to make sure I'm ok and to make sure I will be able to cope over the weekend.  I am very lucky to have some lovely people who are concerned and want to help me.  


So I am feeling a lot better about the situation, it feels more manageable anyway.  I have a cream to treat the fissure and pain medication to get me through it.  Last night I only needed the toilet once, which was fantastic as I had been going every three hours day and night.  After feeling very depressed and overwhelmed by this situation today I feel a lot stronger.  I keep reminding myself that God wouldn't give me anything I couldn't handle.

6 Weeks Post Op

I went to my six weeks post op appointment today, I was really hoping to see my surgeon and get on top of things, but unfortunately I saw a doctor who has never seen me before.  I nearly cried as I realised he didn't have a clue, who I was, my situation and I really felt he wasn't up for the job!! I kept explaining to him that I feel I have fissures internally.  He told me I didn't have any strictures of the anastomosis!!! Who are you trying to kid!!!  Hmmm...thats why every two weeks since my surgery I have been seen by my surgeon and had to have dilation!!  He doesn't deal with J-pouches, and I felt that awful feeling of being desperate for someone to help me but it as all falling on deaf ears!!  He did an exam, which didn't achieve much as he didn't reach my stricture..what was the point!  And concluded that he would go and speak to the Professor....he left the room and I burst into tears.  He came back with the idea that I should use St Mark's Anal dilators, slowly going up in sizes.  Hmmm I thought I didn't have a stricture!  He told me to have more baths and that would help me also.  Well, thanks very much.  I have another appointment in six weeks time, so I will see how I go.  I really hope that I will feel a lot different in six weeks time, because I really can't cope with this for much longer.  I really wish I still had my stoma :(

4 weeks Post Takedown

Why am I putting myself through this?  It is really tough to justify this pain because, I walked into this surgery happy and healthy and I have not benefited from it.  I keep telling myself, short term pain for long term gain!  but I think I'm kidding myself.


I had to call up the surgeons office again because I was really struggling and I could feel the stricture had narrowed again, making it difficult to empty my pouch.  I was so lucky that my lovely doctor said he would see me in a side room on the ward as he was on call!! wow..I am blessed.  It was lovely to see my nurse again who is always so sweet to me.  As we waited, I noticed she was holding a tube of KY jelly, this sent me into a fit of giggles and the doctor walked up to me smiling.  I said to him, she's got the KY we are good to go!!  Once in the room I explained how I wasn't coping, the pain I was experiencing and how I really wasn't eating properly and was losing weight.  He did an internal examination and said that the stricture was even worse than last time, he did digital dilation on the stricture, the pain of this was IMMENSE!  The nurse came over and held my hand.  The plan was that this would ease my symptoms and I may or may not need it again.  He also wanted me to start eating better, with more fibre and salad....green things!!! eeek... foods I have basically avoided like the plague and to be honest have a huge phobia of.  This would bulk my stool and also help me to empty easier.  So I headed for the shops and stocked up on salads and fruit, wholemeal bread and bran flakes! 


I noticed that after this last dilation the rectal pressure and rectal spasms has definitely worsened but it has become easier to empty my pouch.  After a few days I decided that I needed some time at home and went to my mums house.  I needed cheering up and a change of scene.  I had such a lovely time with my family, it really helped me and took my mind off things.  Reminding me that I have such a wonderful family and supportive partner who all want me to be well and happy.  So I strive forwards, taking each day as it comes, I keep praying and mindful that "this too, shall pass".


L x

Is there light at the end of that tight tunnel ?

I went to the hospital yesterday to see my surgeon.  I was happy to see him and explain all the problems I had been having, fissures, abscesses and a lot of pain.  The nurse started to tell me how to lie down for the examination, but I told her I knew the drill.  He gave me an internal examination and subsequently dilatation of my pouch.  It was very unpleasant and I breathed through the pain like I was about to have a baby.  So it is not surprising I have had difficulty emptying my pouch...ouch!  Since the dilatation it has been a lot easier and less painful.  I have another appointment in a few weeks time and will probably have more dilation.  This is a common problem and often occurs because healing of the pouch to the anus often scars and becomes tight so to help this problem it requires stretching.  


I have finished my course of antibiotics and the lumps (absesses) have nearly gone, I have one left which is still really sore but I'm getting there.  I have been feeling a lot happier the last few days and I am feeling more confident things will work out ok.  I'm slowly adjusting.  


My wound has healed now, which makes me really happy.  I had my first shower today without a plaster on.  Its great to finally have a stoma bag and plaster free belly.  


Keep strong and keep positive, life with an IBD is hard but remember you are more than your disease.  x

Antibiotics

After a difficult few days and two weeks of sleepless nights I finally called the surgeons office to let them know I was in a LOT of pain.  The secretary has said she will pass on my information and get back to me.  Luckily the lovely Enhanced Recovery Nurse phoned me up that morning to see how I was getting on and could tell I was struggling.  I told her I had made an appointment to see the GP as I was concerned I had some lumps by my bottom.  She is trying to get hold of the surgeons to discuss what is going on with me.  It's good to know I have people who are concerned and who are helping me. 


I went to the nurse yesterday, so she could check my wound and redo my dressing.  I'm usually chirpy and we have a laugh, but she could she I was not in a happy place and offered me sympathy and made an appointment to see the GP.  The wound looks fine, it still hasn't closed yet, but its getting there.   So come the afternoon, I got out of bed and went back to the doctors, which luckily is a little walk away as I don't have anyone near me to help me.  The GP was very nice and looked externally at my bottom.  Once I had told him my rectum had been removed, he did not want to look internally...seems that is out of his remit!  ha ha.  He had a look and says the lumps are cysts and I don't have any signs of hemorrhoids.  He put me on a course of antibiotics in case I have an infection and to hopefully relieve the pain I'm having.  


So I started antibiotics yesterday and last night I managed to sleep from 12 till 6.30am and didn't empty my bowels until 7am.  Which was amazing, a welcome relief.  I then went back to sleep until 11. I have only been to toilet a few more times, and I'm more comfortable and just feel a lot better in general.  It's bizarre how the antibiotics have decreased my bowel movements and it makes me think maybe I have Pouchitis.  I don't think it's a coincidence that being on antibiotics has helped.  So I will keep going, day by day and hopefully I will get on the road to recovery and being happier and healthier.  


L x

Takedown Misery

Have I done the right thing?  I want a stoma back.  What have I done? a few things that have run through my mind after my reversal op.  Everyone says, the first few weeks or months of adjusting to life with a j-pouch is awful.  Some people will say, you will wonder why you didn't just stick with having a stoma.  I agree, I have been in tears many times nearly every day since I had my op!  I am not a happy j-poucher (yet!)  I keep telling myself, why have you put yourself through this, I couldn't have been happier with life with a stoma, why have I gone and put myself through this!  I am in a lot of pain when I go to the loo, I feel awful pressure and I find it difficult to empty my pouch completely.  I have had many sleepless nights, going to the bathroom between 3 and 7 times.  I have now got a small pile, which is certainly not helping matters!  I had this when I flared with my UC and only now because I'm using my bum has it reared its ugly head.  

Fortunately I have only had two minor leaks, due to misjudging when I can pass wind and when I need the loo.  During the day I am going about 5-9 times.  Slowly, I am getting an appetite back and I am trying to eat little and often.  I am eating the same foods I did with my stoma, although I am sticking to bland foods for now.  No, I haven't fancied a curry yet!  The butt burn has lessened, just by using wipes, having baths and using barrier creams.  

My wound hasn't fully closed yet, but it is getting there.  I have visited the nurses at my GP and also done a few dressing changes at home myself.  The deep muscular pain has only just started to subside and I am able now to lie on my right when I sleep which is great.  

Maybe once the pain has subsided, I will be ok with having a 

j-pouch, I really hope so, because feeling like this is torture.  My poor body has had so much to adjust too, and only time will tell if having a jpouch will out weigh my desire to have my stoma back.  

Back Home after 2 days!

I had my Take-down surgery on a Monday and went home on Wednesday morning.  The surgery went well, with no complications.  I woke up in the recovery room feeling a bit sore and drowsy, I didn't have a catheter and I also had no PCA (Patient Controlled Analgesia) pump, so asked for some more pain relief.  The nurse looked at the wound, and it was so bizarre not having a stoma and a bag on.  I remember telling the nurse, that's it I'm done with surgery, NO more I said hmmm apart from a C-Section and I want twins, two babies, one pregnancy, job done!! We did laugh.  I was so excited the morning of my surgery, I was very happy.  My first poo put paid to that!  I was back on the ward very quickly and was drinking fortisip and water and also got out of bed so I could have a wee.  My stomach and all along my right hand side was very sore, it felt a very deep muscular pain, not surprising really.  A few hours later I had a little walk to the bathroom.  The nurses were all impressed with my speedy recovery, and I did well.  The first night after surgery that morning I had my first bowel movement!  Eeek there wasn't much, but it was very runny and extremely acidic.  I didn't expect to get butt burn that quickly but I did.  The pressure in my bum was unbearable.  I had two bowels movements that night.  In the morning the surgeon came to see me and was very pleased, as I had done a poo!!!  He said I could be discharged that day, which seemed really quick.  I told the nurses I would wait till the afternoon to make sure everything was ok before going home.  By mid day, the pressure was awful and I was in so much pain.  I laid on my bed with my knees up and managed to pass wind! thank goodness!!  haha.  It was a huge relief but the pain, spasms and fullness was horrid.  By the time my boyfriend came at visiting time I was so tired and emotional.  I was crying and didn't know what to do.  I felt overwhelmed by it all, my brain, my body and my poor bottom didn't know what was going on.  I missed my stoma.  I didn't feel I was emptying my pouch properly, I always felt "the urge".  Needless to say, I stayed the night and left the hospital in the morning.  

J-Pouch Op Tomorrow!

The day has nearly arrived, I am packing my bags for the hospital in preparation for tomorrows take down surgery!  I'm am feeling a mixture of emotions from, excited, nervous, sad, happy but in the most part I'm in denial!! I can't get my head around the fact that tomorrow I will have my reversal and have a poo (the normal way).  Today will possibly be my last stoma bag change forever, that seems incomprehensible.  I'm not nervous about the operation, but thinking about going for a poo is really, really scary.  I'm scared I will feel like I have UC again, scared about the possibility of being incontinent and scared I will feel restricted again by my bowel habits.  But I really can't control any of these things and try to remind myself to be positive and confident.  I am SO determined to be a successful J-poucher :)  Worrying won't get me anywhere.   So lets focus on what I am looking forward to:


Eating a more varied diet, especially salad.
Absorbing more nutrients and fluids.
Lying on my front.
Not having the bag on.
Low cut jeans and clothes.
Wearing small pants.
Another step forward to recovering and getting a job.
Reaching my goal of being healthy and being able to look forward to starting a family in a few years. 
No more medications.
No more operations.


Goodbye stoma, hello J-Pouch!


L x

Gastritis....ITIS...ITIS...ITIS!

Hello :)


Long time no blog! I have Gastritis, which is inflammation of the stomach lining...hmmm sounds all too familiar.  It has knocked the stuffing out of me!  I am not happy.  I went to the doctors last Thursday and he gave me a diagnosis and medication.  I've been on Ranitidine for four days and the vomiting has stopped for the last two days but I am still in constant pain and really suffering.  I cant help but feel alarmed by this sudden illness, I am naturally worried about the health of my stomach after the years of abuse from the concoction of drugs it has had to digest.  I've never had gas problems or gastritis before so this is new too me and I don't like it.  I feel anxious that all of a sudden I will deteriorate and need to go to hospital, which I know is silly but when you battle chronic illness this feeling can rear its ugly head when your ill.  I have had a strong talk with myself to GET A GRIP!  


This is not good timing either because I have my Pre-Op Assessment on Wednesday,just three days away.  I doubt they will be happy for me to have anaesthetic with my current Epi-Gastric problems.  What will be, will be...

Colds, applause and op date!

I had a lovely birthday and a romantic valentines day and then came a COLD...yuck.  So I have been suffering for over a week now but I'm bored now and SO over it. I am just getting on with things and ignoring how rubbish I feel.  I've just come back from the Knitting Club :) although some of us Crochet.  I had finally finished my African blanket and also a beautiful baby blanket.  I received a round of applause for my efforts, which was very sweet.  So I'm really happy today and have started the next baby blanket already.  

I have had THE phone call and now have a date for my last and hopefully final operation.  I am very excited and also apprehensive about it all.  I hope that I will feel confident with controlling my new bowels and will still have the sense of freedom I have at the moment with my Stoma.  

I ordered a few samples last week and will be testing them out and letting you know how I get on.

I hope you have a lovely day.

Lx

It's MY Birthday!

Wow, two posts in one day...I'm making up for lost time.  


So, today is my 28th birthday, ten years ago I thought 28 was ancient but now I'm 28, I've changed my mind...I actually feel quite young.  Or is that immature!?  I didn't think I would make 27, let alone 28, so today is a very good day.  I was only a couple of weeks post op on my last birthday and was pretty poorly still.  I remember I had some gorgeous flowers and lovely presents from my family and I spent most of the day in bed asleep.  This year I have celebrated my birthday quite a few times already, with meals out and cinema nights and a trip up north to see my sister.  In fact my birthday dinner out with family was an ALL YOU CAN EAT BUFFET!  A complete contrast to last year, hence the tummy increase...but it's all good.  I did have some pain behind my stoma that night, but it went away and the food was so worth it :)


For those of you in warmer climates, here are a few pictures of my walk the other day...it has reached -15 in England a few times last week...brrr.  But the snow was perfect and the walk was beautiful.

                              An adorable Shetland Pony, came over to say hello :)

L x

28th January 2012 One Year Post Op !

This is a very delayed post but!! hey ho like you care!  ;)  I celebrated my one year post op anniversary and treated myself to some lovely crochet books and a yummy cake.  Any excuse for cake, I say!  It was a very happy day, no tears were shed and I was pain free and my tummy enjoyed the cake and also the curry I had in the evening.  Yes, things have definitely improved for the best.
                             (Apology's for the terrible light in the pictures...it was an extremely dull day)

The year has flown by and if I compare myself to this time last year, the improvements are AMAZING.  I am beginning to enjoy the benefits of a colon less body.  The last operation has made all the difference and the constant flare has finally gone.  I don't miss the blood in the toilet one bit.  I'm so glad I did not wait any longer for that op.  I can finally start planning my new life with my j-pouch....which will behave! (fingers crossed)

So as I blew my candle out and made my wish, I felt so happy and totally blessed, life is good.  


I hope you are all keeping well and keeping positive. 


L x

The African Blanket

 Long time no blog, not much to report really.  I'm feeling well, and managing to do a lot more.   I've been sleeping better, which helps and I'm so pleased to be home.  I've been doing the usual things I like to do in January, which consists of spring cleaning (hmm its winter), drooling over new cushions which I think will add some funk to my living room and doing crafty projects to add a new spark to our flat.  With limited funds this can be harder and also more exciting.  I found two big cork boards in a charity shop this week and have decided to make a chalk board and fabric notice board.  Its nice to have the time to indulge in these sort of projects and life would be really boring if I didn't.  


I went back to my Knitting for the Needy group last week and took The African Blanket I have been working on since my last op.  It's nice to have the energy and be well enough to walk to the group and sit crocheting for an hour or more.  It has taken a lot of yarn, more because I wanted to make a really vibrant and colourful blanket so made lots of colour changes.  The pattern is just a normal granny square, but it goes on and on and on!! 

 Here it is in all its glory, I will take it to the group on Tuesday and will feel a little sad to say good bye to it, but knowing that it will go to Africa and make some one really happy is a lovely feeling.  Today I will start a new crochet project for the group but on a much smaller scale.  I will be making a baby blanket for the local hospital Neonate unit.  


This time last year I was in the midst of the worst flare up of my life and my Colectomy one year anniversary is soon, I can't help but remember all the terrible times I had but I am amazed at how well I am feeling and things are definitely on the up.  I had a curry last night! that says a lot.


L x 

Happy New Year and Pouchogram Success.

Ok, So I'm a wee bit late on this, but Happy New Year.  I have been extremely busy with family and now I am home sweet home and very much looking forward to a more relaxed pace of life.  I have some fabulous news to share with you, already this year is proving to be much better than the last.  I received a phone call from my consultants secretary informing me I am on the waiting list for takedown surgery and I passed my Pouchogram!!! Woohoo I am super duper pleased with this positive result.  Thank you God.  Its a fabulous feeling to know my pouch has healed successfully.  


I hope you all had a lovely Christmas and wish you all a Happy and Healthy New Year.  2012 I pray will be a fantastic year.


Love L x