The annoying and weird stuff about having an ileostomy

WARNING – STOMA PHOTOS

Although my life is better with a stoma there are obviously some things that are not so much. My first pet hate is the dreaded itch and it you don’t have a stoma then let me explain….

Sometimes your output ( poo ) leaks a bit under the baseplate, it can’t always be helped as there is always a small gap around the stoma so you don’t strangle it, ( believe me, I have wanted to strangle it a few times ) and this means that the poo burns the skin which starts off by causing the most painful itch that you can’t get to unless you remove the bag, and it can go on for a good while. Your skin eventually gets used to being burned by your poo and the painful itching stops, but it leaves very sore skin.

( The bobbly bit is a fistula where I get output from when I shouldn’t )

Also for no obvious reason your skin decides it doesn’t like the bag you have been using for the last 6 months, and reacts to it by being red and sore too.

( This photo is a mild soreness around the stoma, it has been more severe at times)

 

I started with one type of bag 3 yrs ago and all was well until one day I started with a reaction and it just got worse and worse, so I had to change my bag, no rhyme or reason.

I also hate it when ( again for absolutely no reason that you can think of) your output get so watery it looks like a well known water feature.

( gross I know, but thats the only word for it ). As you can imagine, changing the bag when you have Niagara falls doing its thing is no mean feat. Oh and it makes your skin red raw if it gets through your bag.

Granulation is fun, bumps and lumps of over granulated stoma develop and look unsightly (relatively speaking ). They can be uncomfortable and usually have to be frozen off with silver nitrate.

And another thing…….worrying what people think all the time, I really shouldn’t but sometimes I do. I try and be brave and ponce around the beach with my stoma cover out but deep down I am still acutely aware of folk looking. Half of me isn’t bothered and the other half, that annoying devil on my shoulder, tells me I am. It is a weird thing to be proud of my scars and showing them off, to that little voice that’s they’re saying ” should you really be showing the world ?” same with the blog, should I really be showing everyone my arsehole, cos that’s really what I am doing indirectly, or does it matter what people think? as long as I am helping people and raising awareness. I have decided to carry on and show the world because that is more important to me.

Using a disabled toilet is another thing, the amount of looks I get because I sometimes use a disabled toilet. If only they knew why, but why should they? it’s absolutely none of their business.

The fatigue….it is ruthless. I am not sure why I get it and if it has to do with my surgeries but it can be very debilitating. One minute you are like a ” normal “person going about your day, then wham, you are totally and utterly exhausted unable to function that well at all.

The strange….There are times when weird shit happens. You pass an identifying piece of food like a chunk of mushroom. I remember changing my bag and seeing two fairly large chunks slip out the end, and taking a few minutes to  identify it. You forget about that beetroot you had earlier and nearly pass out with fear when you empty your bag to see what appears at first glance to be a whole lot of blood.

You feel like you need a poo the old fashioned way, that’s very weird. You can feel gas travelling around your small bowel and it gets to that point when you would have passed wind from your bottom the normal way but it then carries on towards your stoma and you fart through that instead. Going through customs and instead of the officer patting you down and scanning the top of the bag through your clothes, asking if she can ‘have a quick peek’ !!! and when you open the peep hole in your bag she looks at you in a feeling sorry for you way, with an intake of breath through her teeth as if to say, that looks sore.

 

 

 

Meeting the TGEakin team.

I was extremely lucky to go to Belfast to visit TGEakin. You may have heard of Eakin’s products but don’t know a lot about them. Their most well known product is the Eakin cohesive seal. I have used this since just after having my surgery and cannot rate it highly enough. But there is one thing about it that is possibly better and that is the people who are part of the Eakin team.

This short video tells the story of TGEakin and how it all began.

 

Because I use the seal, they asked me to go over to Belfast as they wanted to produce a short documentary about the seal and how it helps you with getting on with life, they also didn’t want to use an actor and felt it would be much better using a “real” stoma patient who uses the product. Of course I said a definite yes to that.

All the arrangements were made, and off me and my husband went to Ireland. We had an amazing time, they treated me like a celebrity and were so welcoming when we arrived, and were shown round the factories. Tom Eakin himself came to say hello, as did his son Jeremy. The other son runs another part of the Eakin family business which you may have heard of.. Pelican Healthcare . I finally met Laura who I have emailed regularly because of my posts in ” A Bigger Life ” website but never actually knew what she looked like. I also met Kiera and Patrick who arranged the shoot. They were all lovely.

Laura and me         ( Laura deals with ” A bigger life” website)                                          

Kiera and me

Patrick, me, Jon ( hubby) and Kiera

In my protective clothing in the factory

The factory was so well organised and immaculately clean. It was so interesting to see how the products were made and how meticulous the staff were with making sure the products left the factory in perfect condition, I can see why Eakin’s seals are well liked.

The filming started on the streets with me and Jon visiting different places, and meeting friends going for coffee, having meals out and drinks. We then did the talking part in the hotel, which was the bit I was anxious about, but it seemed to go well, and I hoped they could edit it if it was awful. Sean ( the person doing the videoing) was good at making me more relaxed and I got to know them all comfortably by the end of the two days.

Here is the finished product, it is strange seeing myself in a video but it was great fun, and the fact that I am a genuine wearer of the seal. ( Oscar’s next year, must sort out my acceptance speech )

 

Visit their shiny new site at  www.eakin.eu

Body image and positivity

 

Body image and what we should look like haunt most people. Those with physical body changes , more so. Why should we worry if our bum looks big in something or if our features don’t conform to scientific studies of what beauty is? so what if we lost a limb or our hair? so what if we have a stoma…

As you can probably see from my posts, I am an open person when it comes to my stoma, but believe me, I have many hang ups about my body. I could write a fairly substantial list about what I don’t like, but for the most part, it doesn’t include my stoma. It’s things like, my ( slightly) large nose and lack of a great jawline, but really, why? why do I feel like that? because I know it isn’t perfect so therefore I don’t like it. What is perfection? well science has decided it is certain criteria and measurements that are deemed attractive, but if that were true why are we all different? and why do we find different people attractive than others? therefore science is not right. It has a lot more to do with the person we are, and how we carry ourselves than what we actually look like.

I happen to come across a really great programme called Naked Beach

The concept is quite scary to even the most body positive of people but it really shows you that in the end no one really cares what you look like. Three contestants who are very insecure about their bodies go to a private villa in Greece where a number of body positive people are there in the nude ( initially with body paint and knickers) and they help the three overcome their hang ups, and at the end they have to join the team and go naked. It really seems to work because the team that are there to help have all sorts of shapes and sizes, including Dan who had to have his arm and shoulder amputated. After watching it I felt sure I would have gone there and stripped right off and gone skinny dipping in the sea too.

I love the photo shoots from #GetYourBellyOut and Purple wings charity too, they really show that we are not really different from anybody else, we are just as gorgeous. The more we show that we don’t mind having our bottoms on our tummies then the more it becomes accepted as just one of those things like a broken leg, and nothing to stare at on the beach.

( photo Purple wings photoshoot, permission granted for this blog)

I am no spring chicken but have decided that I am comfortable with my body enough to wear clothes I like whether they are tight fitting or not. I will wear bikinis with my stoma bag on show on a crowded beach, why shouldn’t I? I realise that if you are not confident then you will think that everyone is looking at you and whispering under their breath. But maybe, just maybe they are thinking how good you look, how confident you are even with a stoma ( or other difference). If you speak to everyone you know, I can almost guarantee that there will be something they don’t like about their bodies, so that must be true about all those folk you think are staring at you.

I say embrace your body and it’s differences and don’t let me be the only one with a stoma and a bikini on that beach.

Oh, and watch  naked beach  

YOU ARE NOT ALONE

Crohns or colitis ? ( plus a bit about the IA information day)

Sorry I haven’t posted in a while, busy busy busy. I am also excited about a thing I was involved with to do with stomas, but it is still hush hush at the moment so I can’t tell you yet. Watch this space !!

I went to the National ileostomy and internal pouch association information day the other week in Birmingham, and it was a great day out. I met many people who I only ” know ” from social media so to meet them in person was so nice. It was based around  Living well with a stoma or internal pouch and it was very informative. We got to have a great taster session about exercise with Sarah Russell called Move without fear, which was great for me personally as I have a fear of exercise for my abdomen. She is a massive inspiration having achieved so much since having her own surgery.

I missed hearing a talk given by Natalie Gardner ( aka @thespooniemummy) with the young IA peeps which I am sorry about because I now wished I had been there, as it was about body image which is a topic that can mean a lot to people with a stoma, particularly the younger generation.

We also had a mindful session which gave us techniques on how to slow down and relax which I found useful. ( Although me and Sue did a bit of giggling 🙂  )

The talk I was very interested in was called ” Should it be called Crohns” but alas as is usual for me, it wasn’t at all about the subject I had thought it might be about. I might just add though that it was a very good talk and very interesting, so I am glad I attended. I really thought that it might be about the question mark over indeterminate colitis/ Crohns colitis. I thought maybe he was going to discuss whether Crohns and colitis were actually variants of the same disease, as I have often wondered. Yes they are both IBD, but many folk have been told one then changed many years later to the other. Some say they have been told they have both, is that possible? is it just the same disease showing in a different way? ( The talk was actually about who really discovered Crohns disease.)

Many years ago when I was first diagnosed, I was told I had Crohns disease and that diagnosis stayed for about 10 years. I even had a biopsy that showed Crohns of the large and small bowel. Those notes are now so old I don’t think I can get hold of them, it was also in a hospital in Surrey. Move forward years and I was then told I had indeterminate colitis ( unsure which IBD I have) or Crohns colitis ( Crohns of the large bowel). Then it was decided I had ulcerative colitis.

I have always had a few doubts about which one, even now without the large bowel. The histology said severe UC but there were some bits that could be Crohns related, like thickening of the bowel wall. I also had severe swollen skin tags before surgery which is more Crohns like, and mouth ulcers.

Now, things again seem strange for me once again. The perineal sinus tract that I have had for a few years and have had a few surgeries on, has now been proved to be a rectovaginal fistula. Fistulas can happen with UC but again are more likely to be Crohns disease. I also have the fistula at the base of the stoma ( which is part of my small bowel.) Hopefully nothing else will appear within the small bowel to suggest I am not clear of IBD.

 

  • FISTULA – an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. So could be linking any internal organ or skin together.

This is why it would be great to get the conversation going about the subject of one IBD or two? who else has the question mark over their diagnosis? I hope and think that I had UC with some tendencies of Crohns in the colon that has now been removed.

An eventful week

Well it’s been a full week with work and going out. Even though I have Laryngitis, with a cough and being mistaken for a seal, I actually enjoyed the week. The cough started a couple of weeks ago, then it made me lose my voice ( or at least most of it ) and a gland in my neck was painful, but weirdly I didn’t feel that ill most of the time. ( Except for coughing gagging and spluttering in the mornings ).

I still have the awful perineal sinus tract which is the thing that makes me feel worse than I actually am. It is becoming painful and I have leaked through my underwear ( with pads ) quite a few times.

Anyway, we had our young IA night out for Notts & Derby and it was great, I had a lovely time and there were quite a few of us who made it out. As the young IA rep ( I still find this funny as I am 52, ) I like to attend these events. Salts healthcare organise and pay for these nights and we are so grateful to them and their wonderful rep, Helen.

I had my MRI for the sinus on Thursday, so hopefully won’t be waiting too long for the flap surgery. This was at the Circle treatment centre ( QMC ) and it was very modern and lovely ( it is part private ) I went into the MRI feet first as it was for pelvis and rectum, although I don’t have a rectum : ), I had to try and not cough during it because the image might be affected, this was a challenge but with the help of Adele singing to me I managed it until the last minute.

 

Friday night was girly night out and I was ready for it. We had a great night out ( actually started at 4pm, so technically still day, but never mind ) went to a meal then some drinks and dancing and lasted until about 10pm, not bad for an oldie. I had one awful moment when I got up and realised yet again I had leaked, but managed to sort it out in the disabled loo. I have learnt my lesson to take out pads and swabs etc, with a longer top, so I don’t feel that I have to go home. Just a side note that a young man came out of the disabled toilet and said he used it because he couldn’t find the mens, my friend said well my friend ( me ) was genuinely able to use it , he said ” yeh right”, if only I had had more drink, I would have shown him. hahaha.

Since having a convex bag, Tomas has been amazing, no tantrums or leaks from him so far, I am happy about that, I even go an extra day sometimes. At the moment I use Pelican platinum convex and it has never lifted at all, I use the thin belt that hooks onto each side and it really does feel very secure. Unfortunately, no bag, as yet has stopped me taking off some mornings but at least the bag stays put.

 

So apart from sounding like Gollum, this week has been a good one.

The trouble with perineal wounds-wound care and dressings

 

 

Ok, so this is more of an update and a moan.

I have had this stupid perineal sinus tract for two years now, after the proctectomy I have had two further surgeries to try and sort it out. Now I don’t blame anyone for the complication, but I do think I should have more wound care because of living with such an awful wound for this length of time. No one seems in a hurry to help me, and no one seems in a hurry to sort me out.

Just before I went home I still had blood on the sheets and the ST ( yes, a sanitary towel was stuck to my buttocks as a dressing) felt wet and uncomfortable. I asked a nurse if she would help me tidy and clean myself up, which she did as best she could, even she didn’t really know what to do with the wound. So again, I had a sanitary towel stuck to my cheeks, this time I said look, can we just stick it to the pants? it’s doing the same thing but not causing me a rash by sticking to my skin. I definitely believe that had I not asked to change the ” dressing” , it wouldn’t have been done before I went home. and I was never given any information about the care of the wound for any of the operations.

That was fine up to a point, but what to do when the operation failed an the sinus returned a few weeks later ? No one really helps with that except my stoma nurse really. I role a swab up and place that over the wound ( right between the cheeks ) but I still need to wear a thin pad as it can leak through. The discomfort is sometimes awful too, any wound hurts and this is no exception. It feels bruised and sore, so sitting for any length of time ends up being painful. Also being up and down, standing and sitting causes the leaks to be worse, so what do you do?

I suppose what I am trying to say is, there is nothing dressing- wise, that I have been given that is specifically helpful for a butt wound. You get sore ( like nappy rash) constantly changing the swab, and you are constantly aware that you might leak through. This has been me for two long years, so you would think that because of the long waits for surgery, someone would have come up with something better than this. The only time anyone checks it out is when I go to my practice nurse one in a while, this waiting cannot be doing me much good. I am now awaiting another MRI to see why it is back with a vengeance, so will have to wait for that result before I get put on any list, and they have to coordinate the plastic surgeon again so that could take a while.

So I need the powers that be to come up with better care for the perineal / perianal wounds. Most people have to wait a long time with no real support before they get surgery. I never imagined straight after my original surgery that my stoma would be less of a bother than my bottom.

I also didn’t think the timeline for sorting me out would be horrendous.

 

 

Thank you for making my stoma journey less bumpy along the way

I think it is time I publicly said some thanks to those folk in my life that I couldn’t be without, and who have helped me get through the toughest times in my life.

 

You can become quite insular after stoma surgery, it’s all about you for a long time. How am I feeling ? what hurts? can I cope ? people running around after you whilst you are in hospital ( which in my case was almost 3 months ) help with taking the kids to various activities, some of which were not that close to home. Supporting me in my recovery which must have been an absolute nightmare, because it certainly was for me so god knows what goes through the minds of those close to you.

Firstly I would like to thank my husband, who has been amazing and pushed me through the tough times, which were many, having me crying every time he visited me in hospital because I knew I could cry to him. He would work all day and visit me all evening, then go home late and make tea for himself and my daughter, for three months, all whilst refitting our kitchen so that it would be ready when I got home. When I was discharged he sorted out a wheelchair so that we could go out by the river and I would walk a few steps then get in again, this would slowly increase each time we went out.

He even learnt how to clean and pack my wound when we went to my sister’s down south for her birthday party. ( Luckily she had it at home because I would have to lie down for a rest every now and then.) I had a rectal catheter in too and he would have to empty and measure it before he went to work and again at night. Not to mention my low moods, they were very dark times and he kept it together for me.

My mum is next. She visited nearly every day and again put up with my tears. She helped me wash, and took my soiled clothes home to wash. I could nod off if I wanted to because it’s my mum and she was there no matter what.

My wonderful friends need a mention too, I had many visits from my friends, again being there for me and my family. Jo and Helen would take my daughter to her choir rehearsal ( half an hour away) every week, sometimes twice a week. They cried when they saw me so ill, they cheered me up too. All my closest friends were wonderful and still are. A few of them came to clean my house when I was recovering at home, I love them all.

 

My children I thank for carrying on with university and school without falling apart seeing their mum in such a state. Helping dad at home, and being there.

The wonderful nurses on the ward who were amazing and never stopped looking after me to the highest degree. A few times I think I must have been a real handful, but they never changed their lovely ways.

A very special thanks to my stoma nurse, Kate, who came to see me just before my emergency surgery and then all through my hospital stay and beyond. I call her my friend because that is how she treated me, we laughed quite a bit, but she also saw me at low times. She held my hand when I had the NG feeding tube inserted ( let me tell you now, that is an experience ) and I can ring her anytime and she will get back to me.

To my surgeon, who saw how ill I was and got me to surgery and probably saved my life. He had a tough job because I was so ill and weak and I know that although it has been a journey and a half ( and still ongoing) I feel very safe in his care.

To my work friends and managers, your support has been lovely and has helped me get back to work much easier with your help and care. Being at work can sometimes be a challenge with my ongoing medical issues, but I feel able to cope much better knowing that I have that solid support.

I would like to thank ‘ A bigger life ‘ and TG Eakin for having me as a resident blogger, they have helped me get my story further, and I can give my help to others too.

To the Notts & Derby ileostomy team and young IA group. Thank you for accepting me onto the committee, I might not know what I am doing half the time 😉 but I totally enjoy it, and I love the young IA nights out too ( thank you Helen from Salts for arranging these great evenings)

Finally I would like to thank my many new friends in the stoma world. Opening up about my journey has been a great experience and the support from everyone who’s own journey has been a challenge, is something I couldn’t be without. Support groups ( which I am with a fair few online ) are brilliant for the vast experience of stoma life, and stoma suppliers also come in to that category because they offer similar support.

 

THANK YOU EVERYONE

Let’s change the stoma bag

 

I felt the dreaded itchiness

This meant only one thing

It was time to change the pouch

along with the Eakin ring.

I can usually go a few days

And this was now day 2

I thought about leaving it longer

and changed my mind ,as you do.

Out came the adhesive remover

with the black bag ready as well,

A tissue tucked up underneath

He might squirt, it was difficult to tell.

The bag was off and all was good

Tomas was unusually still,

He can be a crafty bugger

And change his mind at will.

I cleaned him until he was poo free

Then used the barrier spray,

How easy was that, I’m almost done,

“Good job”  I hear you say.

The seal goes on, without a fight

The bag is next to me

Oh no I forgot to cut the hole

A wasted minute or three,

I snipped round the hole

as quick as I could

Before he made a mess,

I didn’t make it, he woke up

It was like a volcano I’d guess.

Start again I would have to do

cos poo was on the seal

I made sure I was more prepared

as this shit often gets real.

 

 

 

 

 

Early morning wake up call

 

 

I finally nodded off to sleep

My mind got out of hand

I think up all scenarios

That would keep me from dream land.

Would Tomas misbehave tonight?

Would I misjudge the bag

Or would I change it far too late

And wake up ready to gag

Sorry if it’s too much info

But stoma life is real,

Worrying what I can eat that day

Or should I skip that meal?

Shit in a bag, and belly farts

Is the life that I now lead

So if you want to be my friend

A sense of humour is all you need

Friends are very special

They know you inside out

They embrace your quirks wholeheartedly

Without showing any doubt.

Now back to being in my bed

And in a restless sleep,

I wake 3 hours later

In a bed with poo knee deep.

I jump up quick as lightening

Grabbing many tissues

Why do I have to live like this

Others don’t have these issues.

“F–k boll–ks, sh-t, tw-t”

I couldn’t type the real words

I was too busy washing and changing

After being covered in my turds.

I need to tell the real life trials

The life of an ostomate

It’s not just shitting in a bag

It’s a life of love and hate.

My stoma gave me back my life

I know this to be true

But occasionally I have to remind myself.

That it’s not all about the poo.

TOMAS THE STOMA 

TIES® solution – NO OSTOMY BAG NEEDED

TRANSCUTANEOUS IMPLANT EVACUATION SYSTEM

Well I must say this is very intriguing, is it something I would consider? possibly. It feels very futuristicky ( is that a word?) but as my husband says, if you lost a leg you wouldn’t think twice about using a prosthetic. Same with glass eyes etc… my only thoughts are the issues that those women had with the mesh for prolapsed bladders etc and the pain and complications they experienced, but this was made from  polypropylene and the TIES® is titanium.

It is still in early stages, but not that early, I wrote to Ostomycure who own TIES® and they wrote back with some information that they are happy for me to share. It is not available for sale as yet but it’s quite exciting.

 

“TIES Solution has received the CE Mark in June 2016.  We are planning to look for approval in Canada and Australia in the near future and as well  to submit TIES for FDA approval in the near future but this is going to take at least 24-36 months.
 
We are implementing an additional clinical trial in hospitals in Sweden and the UK. The study will be performed by Dr David James in Leeds and Dr Ed Westcott at St Thomas’ in London. 
 
The lid has to be changed every week. We’ll post the added centers on our website as they commit.
 
Please find attached pictures from an article that gives more information on TIES. Please also visit our website  www.ostomycure.com . We shall post regularly news, articles and product information.”
 
 
Regarding your questions:
1. TIES has received the CE mark which means it has successfully met the regulatory safety requirement regarding class IIb medical devices including clinical testing in human beings. 
2. We are developing a special lid with a hatch that clips onto the device’s external part without touching the skin. A clip-on plate that also does not touch the skin allows the fixation of a conventional single use bag for the drainage of the waste. After drainage, the plate is removed (and can be re-used). The hatch is cleaned and closed until the next time for drainage. It can also be worn during the night if so wished. The lid protrudes about 15mm above the skin.
3. The concept is all about providing a continent ileostomy that eliminates the need of conventional skin glued bags. 
4. There is no cramping or discomfort. When it is time to drain the waste, the patient “feels” it, similarly when one still has a physiological digestive system (colon, rectum). 
5. In the first 6 weeks the patient needs to wear the bag as usual to allow the tissue to grow into the titanium device. After that time the lid can be used.  The number of times the patient needs to go to the toilet diminishes over time when the intestine above the device tends to enlarge slowly to create a natural “pouch”. But the number of times depends largely on the length of the remaining intestine, the diet and the amount of food ingested.
6. There is no erosion or excavation since the patients are not in an inflammatory situation. In UC and Crohn, once the inflammatory part has been removed and an ileostomy put in place, there should not be any inflammation.
7. Should the device need to be removed, the surgeon will dissect around it and perform a conventional ileostomy as it was before.
 
Best regards

Johan Järte MD 
Medical Director 

 

I still have more questions but they can be answered as needed. Like the urge thing and what you do to empty. I can see from the above photos that you attach a bag when needed but then what? does it just seep out ? do we kind of strain like with an anus? or does the act of opening it trigger evacuation?

As I am  googler, I found the care manual that you get following the surgery. It seems you bend slightly forward to drain the internal pouch (that will eventually form ) it might take a while initially but should get quicker as things heal. Care has to be taken not to knock anything until you are fully healed.

One minute I think it sounds wonderful and I would consider it if given the opportunity, and then another minute I think it sounds very scary and robocop like. I also wonder if you can see the cap bit more under clothes than the actual bags we have now, definitely through tight clothes I would think.

Will it take off ? only time will tell.