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Jpouch removal – an explanation 

I know that these surgical treatments can be super confusing, I have explained to lots of family and friends to help them understand what is happening and so thought I would explain on here too.

Firstly, what is a jpouch?

Well, you can have a good read of my explanation here, but in short, a jpouch (also called an Ileo-Anal Pouch or Ileo-Anal Anastomosis) is an internal pouch formed from the end of the small intestine that is attached inside to complete the gastro tube from mouth to butt.  It is a ‘replacement’ for the large intestine and cannot be seen from the outside.

what is a jpouch

 

what is a j pouch

 

So this is what I had, I have no large intestine (colon) and my small intestine was formed into a pouch that was reattached to my bum.  Jpouches are pretty rare, they are becoming more common though and are sometimes called a ‘reversal’ after having an ostomy.

So the surgery I had in January was to remove my jpouch, unfortunately for me, it wasn’t working.  I had a lot of bouts of pouchitis (inflammation in the pouch) and issues with incontinence.  Some people absolutely love their jpouch and find it gives them a whole new lease of life.  For me, it wasn’t right and so the decision was made to remove it completely.

I had two options with my surgery, I could of opted for a temporary ostomy, where they would divert my small intestine away from the jpouch and out of a temporary loop ileostomy that would come out of my stomach.  This would give my body a rest and allow the jpouch time off.  I then could have a further surgery to reconnect it all again in the hope that the rest would have helped my jpouch and I would have returned to having everything connected internally.

loop ileostomy jpouch

 

 

Or my other option was the one I chose, I chose to have my jpouch removed completely along with my rectum and anus. So now, my digestive system starts at my mouth, goes down to my stomach and then into my small intestine.  They formed a permanent end ileostomy on my stomach and that is the end of my system, I have no large intestine, no rectum and no anus.

This was major surgery and quite a risk but I was at the point where I didn’t want to save my pouch, I was scared that I could have the loop ostomy and rest my pouch and still end up having all the symptoms of pouchitis, I also couldn’t bare the thought of multiple surgeries.

This is a BIG choice to make and anyone facing it should speak to their doctors and get all information and support available to them.  The bigger and permanent surgery was the right choice for me, I can only share my own experience but many other people make different options.

I feel a responsibility to try and share all choices when it comes to surgery and treatment as I know so many people read my blog and I would hate for anyone to not explore their own options.  You should always speak at length with your own doctors, nurses and surgeons.  The internet is a great place for information but it is not always helpful, I love that my little blog can be a tool in your kit to learn more about your illness, but make sure that no one place is your sole info source.

The jpouch didn’t work for me, but I am glad that I gave it a go as I think I would have always been wondering ‘what if’ if I didn’t.  But it does work marvellously for so many!

I hope this has explained a little more about jpouch removal, as always, if you have any questions, hit me up! You can find me on Facebook and Twitter.

It’s been a while… The bag is back

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total!  The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously.  I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!



The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure.  I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube.  I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.


Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely.  They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant.  So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin.  This is painful and when I stand, it feels like everything is going to fall out!  The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week.  Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick.  The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak.  The leaks are soul destroying.  There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it.  I’m not.

I don’t feel ready.  I change my bag but I hate seeing it, looking at it, touching it.  I wish I could ignore it completely.  I know this isn’t my usual happy and positive stance but it’s important that I’m honest.  And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag.  I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life.  You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all.  I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

grandfather and granddaughter

So I am home and recovering.  I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal.  It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family.  Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days.  They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic.  I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op.  We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles.  We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me.  Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing.  I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable.  It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to.  We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off.  During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!

 

Sam xxx

Guess what? It’s time!

I just had a call from the hospital and they’ve had a cancellation! I’m going in tomorrow morning for my op!  I am having my jpouch removed, my butt sewn up and a permanent ileostomy formed.

I am a bit in shock, it is all very real now.  I mean, I knew it was coming but this is it, the final day of my life without an ostomy.

woman with scars on stomach ibd blogger sam cleasby

I’m scared, upset and bewildered but life at the minute is crap, I am so ill, I go to the toilet 20 times a day and have accidents, so it has got to be better than this!

I will ask Timm to update when he can, if you don’t already, you can follow me on Facebook and twitter where I am more likely to be (though the internet/phone connection in the hospital is shit!)

It’s a big operation and recovery takes a while, but I will try and blog whenever I can.  I just hope this is the start of a new, happier and healthier life for me.  I’m a bit in shock and need to go pack my bags and get myself ready, so I’d better get off now as I think I am waffling.

I’ll see you all on the other side, yo.

 

Sam xxxx

What life with my chronic illness is really like 

Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic.  I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before. 

I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness. 

Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful. 

I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time.   I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather. 

My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself.  Between this and years of meds that batter you down, I literally catch every single bug going.  This means I’ve had a cold and cough since October.

There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep.  I take anything from 4-16  immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy. 

  
There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it.  The never ending treatment and the feeling this could be for the rest of my life is soul destroying.  Times when I can’t find a silver lining and wish I could just be normal. 

Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world. 

When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants.  It takes a mental strength to just get out of bed.  I pack supplies of meds, wipes, bags and spare underwear. 

So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this. 

Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house? 

No? Well, please have patience with me. 
Sam X 

Shit happens…

“So the decision is made? I’ll book you in for another ostomy”

Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed.  They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy. 

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch.  I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown. 

And I have made the decision.  I’m booked on the urgent list for a pouch excisionand permanent stoma.  There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me.  The pouch is fantastic for some people, but for me, it isn’t working. 

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.  

This isn’t fair. 

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries.  I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick. 

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair. 

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag. 

I have no positive spin today. No fun little meme with a quote by the Dalai Lama. 

Nope, I have pain. Raw, emotional, angry pain.  And that’s ok. 

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens.  And it is completely fine to not be ok with that. 

Accept your sadness. Revel in your anger. Acknowledge your pain. 

Tomorrow is a new day and we can figure out the positive shit then… 

Sam x 

Back in hospital

Hello you lovely lot. 

Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day. 

So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests. 

I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting. 

 
My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes. 

I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?! 

 
But anyway, I have news. 

After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.  
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great. 

  
Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma. 

I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break.  I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends. 

Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it. 

  
He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said  “do it mum!”  I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed.  This makes me so sad. But firms my belief that this pouch isn’t right for me.

I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’. 

So there we go.  I shall update soon and as always you can find me on Facebook Instagram and Twitter

Sam 

What is a Jpouch?

Though I have talked a lot about my different surgeries, I know it can be a bit confusing and difficult to understand and so I thought I would dedicate this post to explaining exactly what a jpouch is.

A  j-pouch has a few different names which can cause a little confusion, it is also referred to as an ileal pouch-anal anastomosis (IPAA), an ileo-anal pouch, restorative proctocolectomy, s-pouch, w-pouch or an internal pouch and it is a bag formed from the small intestine that is attached to the anus.  It was was pioneered by Sir Alan Parks at St. Mark’s Hospital in London in the early 1980s.

“It is a surgically constructed internal reservoir; usually situated near where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching or stapling them together. The internal walls are then removed thus forming a reservoir. The reservoir is then stitched or stapled into the perineum where the rectum was. The procedure retains or restores functionality of the anus with stools passed under voluntary control of the patient.” (via Wikipedia)

In simple terms, when the large intestine (colon) has been surgically removed, doctors create a pouch out of the small intestine that is attached back onto the anus.  This pouch acts as a store for waste matter so that patients regain the ability to ‘hold it’ when they need to poo and therefore improves life quality.

what is a jpouch

 

Ileo-anal pouches are constructed for people who have had their large intestine surgically removed due to disease or injury, this could be from;

  • Ulcerative colitis
  • Crohn’s disease
  • Familial adenomatous polyposis
  • Colon cancer
  • Toxic megacolon

It is entirely internal and not the same as an ostomy in any way.  From the outside you can not see anything and people with a jpouch go to the toilet and poo in the same way as anyone else.

 

Immediately after surgery, the patient tends to pass liquid stool with frequent urgency, up to 20 bowel movements per day, but this eventually decreases with time. Because the  jpouch is a considerably smaller space than the colon, patients tend to have more frequent bowel motions; typically 6-8 times a day.

Also because the small intestine does not absorb as much water as the colon, poo is much more fluid than usual and some patients need to take daily medication to slow the process and thicken the stool.  Because of the loose stools, more water is lost and patients can get dehydrated easily and can also suffer salt deficiency. For this reason, some are encouraged to add extra salt to meals or electrolyte mix drinks.

Because the ileum does not absorb as much of the gastric acid produced by the stomach as the colon did, poo also tends to burn the anal region slightly meaning many patients need to use wipes and barrier creams.

One complication of a jpouch is Pouchitis which is an inflammation of the ileo-anal pouch. The symptoms are normally somewhat similar but less acute than those of colitis, and include (sometimes bloody) diarrhea, urgency or difficulty in passing stools, and, in few cases, pain. The standard treatment for pouchitis is a course of antibiotics.  Other complications that can occur are pouch fistula, and pouch stricture.  Early complications can be leaks and the pouch coming apart which will require more surgery.

I can’t find any official success stats but I can say that my surgeon told me this.

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So you can see that even though this surgery is called a ‘reversal’ (meaning it is reversing the surgery of having a stoma/ostomy), it is not that simple and people with a jpouch have their lives changed forever.  You read an awful lot of negative stories about jpouches, but I always think that it is because all the people who are having a good experience aren’t on the internet telling you about it, they are off living their lives!

For me it has been 18 months since my surgery and in the early days, I did struggle and wonder if I had done the right thing.  As time goes on, life is getting a lot better.  I go to the toilet around 8 times a day but usually without urgency or pain.  My jpouch is working well and I am happy with it.

It hasn’t rid me of all the extra intestinal manifestations of having IBD, I still struggle with fatigue, bad joints and sore eyes.  I still take medication every single day and I have had to accept that i have a chronic illness that will never go away, an auto immune disease that affects my whole body.

I hope this post has answered some of your questions, the more we all speak out, the better it is for everyone.  I aim to educate, raise awareness and as always to #StopPooBeingTaboo

 

Love Sam xx

Bad days. And good!

I’m not having a great day today, I’ve had a stinking cold for a couple of weeks and I think my immune system has taken a battering and so I have been up a lot in the nights going to the loo. 

I woke this morning and my joints are absolutely agony.  My body is feeling broken and very, very old. I have been ignoring and trooping through for a while but today it is time to listen to my body and stop.  Today is about laying on the sofa and watching terrible day time TV.  My body is speaking and I am listening. 

I am pretty stressed at the minute and I don’t think that has helped.  Our car broke a month ago and we’ve been trying to get it sorted, it turns out it’s not worth spending the money on and so we have to buy a new one.  It’s money we could really do without spending/losing now.  Our rental house is going on the market at the start of next year and so we are house hunting.  Our work load has been HUGE over the summer and we are playing catch up.  And family stress of close relatives taking umbrage with something I have done (I have no idea what!) means I’m being deleted and blocked on Facebook and talked about behind my back. Part of me wishes they would just speak to me and tell me what’s wrong. The other part thinks I just don’t need the stress. 

I thought I would share this on here as it is how I have always dealt with my illness for the past two years. But then I thought about how I have been a little quiet of late on here about my health. And the reason for that is because it has all been loads better!  With a balance of meds, probiotics, diet and exercise things have been great and I haven’t had much to report. 

It made me think about how sometimes ostomies and jpouches have a bad reputation because we only talk about them when experiencing problems.  It made me want to try harder to write about all the positive things that have happened to my body since getting surgery, about how much better life is. 

And so I will try to remember to write about the good days as much as the bad days. 

Just not today as my hands and wrists have had enough. 
Sam x 

Happy birthday to my Jpouch!

I can’t believe my jpouch is one year old today!!!!

A year ago on 14th May 2014 I had just been through a really tough surgery. I had woken without my Ileostomy bag and was facing my first day for nine months without pooing through my stomach!!

IMG_2512.JPG

I was exhausted, terrified and in an awful lot of pain. I had a large tube in my bottom that would have to stay there for ten days and I also wouldn’t eat for almost two weeks.

Those first few days were bad. The pain, hunger, fear and emotional turmoil were so tough. To be honest the first few weeks were really awful, I was incontinent and taking so many drugs and learning to live with a pouch.

For the first few months I asked myself on a daily basis what had I done?! I had been warned that the recovery was brutal and would take 2 years but it was worse than I could imagine.  Everything seemed so much harder than with my stoma and I doubted my decision all the time.  Learning to use my pouch was like a toddler learning to use their bowels.  For the first weeks I had to go to the toilet every two hours, even through the night, setting an alarm.  This is because my pouch was made in a two step procedure, step one was colectomy and ileostomy and step two was pouch formation and reconnection – some people have the operations in three or more steps with the pouch being formed but not connected and then another surgery to connect it up a few months later.

The two hours was stretched to three and then four before the long  period of trying to ‘hold it’ for as long as possible to train the pouch to hold more stool and teach my body to go for longer periods between toilet visits.

The past year has been a huge learning curve.  There have been really difficult times where I have barely left the bathroom, there are times where I have had pouchitis, tummy bugs, butt burn, incisional hernia, surgery and so much more.  I still have ‘flare ups’ where my joints are so painful and I feel exhausted.  The fatigue hits hard at times.

But I can say, one year post surgery that I am really glad that I went ahead with the surgery.  My life is improving all the time, I can go longer between toilet visits and I am learning what food I can and can’t tolerate.  I rarely have accidents and I do feel that my health is improving all the time.  There are times when I don’t even think about toilets!!! It has been YEARS since I could say that!

sam cleasby so bad ass blogger

So happy birthday to my jpouch, it has been a crazy year! Here’s to the next one!!

 

Sam xx

 

Dehydration and ileostomies

I was warned when I was in hospital that dehydration is a massive problem for folk with ostomies and pouches, this is because your large intestine absorbs water from your food and a lot of the salt your body needs so if you don’t have a large intestine, you are in for a bit of trouble.

This means that I am always thirsty and drink litres and litres of fruit squash a day, I find water goes through my system too quickly and was advised by a doctor to try adding dilute squash to it as the body has to digest it and so hangs on to the fluids for that little bit longer.  I keep a store of squash in my ensuite bathroom as I drink two or three pints just through the night and so it stops me having to go downstairs at 2am.

Ostomy Lifestyle recommend this…

“People with ileostomies, particularly if the stoma is formed higher up in the bowel, can have more difficulties with their fluid intake. This is because it is the role of the large bowel to absorb water (and salt) and for people with ileostomies this is no longer being used. The small bowel will, with time, adapt to absorb more water and more salt, however careful attention should be paid to ensure that you are drinking an adequate, varied fluid intake (e.g. water, juice, cordial, herbal/fruit teas, etc) to maintain kidney health. Remember, you are aiming for light straw coloured urine.

For those who are more active it is even more important to pay attention to your fluid intake. Fluids lost through sweating contain electrolytes, so it is important to replace those with specialist sports drinks. 

Everyone should bear in mind that alcohol is a dehydrating fluid in the most part and caffeinated drinks such as tea and coffee cause you to lose more fluid in your urine. The majority of your fluid intake should therefore be from fluids such as water and fruit cordials.”

The other issue is salt.  As you don’t absorb salt well it is recommended to increase your salt intake at least for a while after surgery.  I find I crave salt and add it to pretty much everything since having my bowel removed.  I am a big believer that if you are craving something, it tends to be because your body needs it.

“Salt is important for nerve and muscle function and is found naturally in most food and drink. There are risks associated with both having too much and too little salt in our diets. Too much salt can lead to high blood pressure, which can make you more likely to develop heart disease, or have a stroke, while too little salt can cause headaches, cramps and fatigue. While there is some evidence that people with ileostomies can lose between 35-90mmol of sodium per day (equivalent to up to a teaspoon of table salt) because this would normally be absorbed in the large intestine, each person with an ileostomy will differ in terms of the amount they lose. There is also evidence that the small bowel of someone who has an ileostomy adapts over time to compensate for absorption issues. But, in the first few weeks after surgery you may need to add salt to your food and have additional salty snacks. There is conflicting information about long-term addition of salt to diet but evidence shows that most people have adequate salt in their diet to make up for what is lost through their ileostomy and there is no need to add more.”

Stomawise says…

“It is important to know the signs and symptoms of dehydration as well as preventative measures.  These symptoms can include thirst, dry tenting skin, abdominal cramps, rapid heart rate, confusion and low blood pressure.

Dehydration can occur after ileostomy surgery as the purpose of the large intestine is to absorb water from the indigestible waste and then expel the waste material from the body through bowel movements.

During ileostomy surgery, a part or all of the large intestines is removed, which prevents the body from absorbing water from the waste before it is excreted from the body. Dehydration can occur when the person does not drink enough fluids to replace the fluids lost as the waste moves through the stoma and into the attached bag.

Your Daily intake of fluids should be 8-10 (8 oz.) glasses per day and can be of any liquid containing water (soda, milk, juice, etc.) to help meet your daily requirement.

Dehydration can also upset your electrolyte balance (especially potassium and sodium) When the colon (large intestine) is removed, there is a  greater risk for electrolyte imbalance, Diarrhoea, excessive perspiration and vomiting can also increase this risk.

You should be aware of the signs and symptoms of dehydration and electrolyte imbalance. Dehydration and electrolyte imbalance is more common with an ileostomy as opposed to a colostomy.

Dehydration
Increased thirst, dry mouth, dry skin, decreased urine output, fatigue, shortness of breath, stomach cramps.

Sodium Loss
Loss of appetite, drowsiness and leg cramping may indicate sodium depletion.

Potassium Loss
Fatigue, muscle weakness, shortness of breath, decreased sensation in arms and legs, and a gassy bloated feeling may indicate potassium depletion.”

I am researching Himalayan Pink Salt at the minute for a future blog post, I’m not sure what I think yet but will write about it asap!

These are issues that most people don’t even think about, I thought I would bring it up as I recently spoke to two different people who highlighted to me that there are so many other issues and side effects to having Inflammatory Bowel Disease, a stoma or a pouch that people just do not know about and so thought I would share.

So next time you see an IBDer downing a pint in one or having an extra shake of the salt, you may just understand a little more.  And if you have a stoma or jpouch, take note and keep an eye on your hydration as the effects can be grim and we don’t need any other reason to feel crap!

 

Love Sam xx