#WorldIBDDay2020

Let us all have a think about our own journey’s of IBD, where are you now? still struggling? still coming to terms with your diagnosis? or are you lucky enough to be in remission?

We have all been in one of these positions at some time or other and unfortunately some are stuck in one of them for a long time. Talking poo is a taboo subject even now in 2020 so many people won’t talk about their bowels for fear of humiliation. They can only just about speak to a doctor.

It can be a fear of cancer, a fear of someone poking around and looking into their bottom. A fear of whats to come. I know this as I have been there too, at 19 years of age having a nice young doctor poking his fingers up my bottom is mortifying I can tell you. Being in hospital with a flare up and soiling myself before I could get to a toilet, pressing the bell in the toilet after I missed and got it all over my nightie and slippers then a new young male nurse coming in and me saying would he mind if I had a female nurse because I felt scared of what he would think, and too self conscious to let me help me clean myself up.

Seeing A LOT of blood instead of poo and wondering what the hell was happening inside my body. Being threatened with an NG tube if I continued to be sick every time the pain waves came. I will never forget…

Fainting with the pain when having a bowel movement and my husband finding me on the floor. Not having the energy to get out of bed for days/ weeks at a time. If you have a fear of needles you soon won’t have, blood thinning injections so you don’t clot because you can’t move except to try and make the toilet ( with a drip ) cannulas every four days because each one clogs up or just because they have to be change,  blood tests galore. You are lucky if you have someone who can find your vein straight away, otherwise it’s pin cushion time, especially if they can’t get a cannula in first time, OUCH.

Most people will need surgery at some point in their lives, you are very lucky if you don’t. The surgery isn’t for the faint hearted either, it is major surgery where parts of your intestines will be removed. You may then have other manifestations on IBD, fistulas, perianal disease, skin issues, eye issues, sores, mouth ulcers of the type specifically given to those with the disease and many many other life altering problems that refuse to mend. The surgeries seem never ending, no one told you what else you might have to fight through.

But you do fight and that is why you are all awesome.

Never underestimate the shear strength of an IBD patient, they have been through hell and back………………… and not just once.

 

4 year stomaversary

I started this post just before the coronavirus pandemic became more widespread  so that is why it hasn’t been mentioned in this post, yes I am worried as I have other health issues that mean I could be vulnerable if I do get the virus, stay safe everybody.

Sometimes it seems an age ago, sometimes just yesterday, but what is for certain is that it’s a rollercoaster ride having stoma surgery. 

Stomaversary 3rd April

How do I feel 4 years on ? Do I celebrate or commiserate? Well I am certainly still here, and mostly enjoying life. I say mostly just because of the little blips I keep having or have had since surgery. My stoma’s friend the fistula, that’s a big blip and so is my leaking bottom parts, that’s more than a blip, but in general I feel good.

 

All the years living with IBD make me realise things are so so much better with a stoma. I can go out and about without the worries that go with having a severely diseased colon and although I still need to use a toilet to empty my bag, the urgency isn’t there anymore.

What about body image after all these surgeries? I admit I don’t like the bottom of my abdomen scar and having my large bowel removed seems to have made me lose my power of a fast metabolism, that I don’t like, as I have a love of anything sugary. I am still going to the gym which I actually like when I am there, and I come away feeling much better. I have limitations at the gym but I work around them. ( Alas this is not to be anymore for the foreseeable future due to coronavirus)

I have met some wonderful people in the stoma community and have a new interest with my blog which has given me some great opportunities. I have brilliant family and friends so I manage my issues with support. I have been lucky enough to have helped others with my story and hope to keep helping others who need it. My story isn’t there to frighten but to prove life goes on with a stoma and it isn’t so scary after all once you are through the surgery and recovery period.

One thing to mention is that most stoma patients don’t just have the stoma to cope with, many of us have either complications from surgery or disease severity before surgery, and /or other auto immune diseases/ issues, so life can be difficult but with the right support, we can enjoy our lives.

I am awaiting for another MRI to see why I still leak and am on a different inhaler for my asthma. I still have foot drop after walking a distance and have been given various devices to help me, but to be honest they are not that great. I have had a confirmed diagnosis of idiopathic intracranial hypertension after two lumbar punctures found raised pressure, which I have pulsatile tinnitus and headaches, luckily for me I don’t appear to have papilledema which causes blindness due to the swelling of the optic nerve.

It would seem I am doomed to ill health, and believe me I felt that way when I started with all this and still do to some extent, why me ? who knows but it all happened in the last ten years ( apart from the Crohns colitis, that was when I was abut 20 years old.)  It could always be worse so for now I cope with what has happened.

Once again stay safe everybody and hopefully this awful time will pass quickly.

 

 

The never ending story

 

 

December

Recovery is very slow at the moment because my wound from the IGAM flap surgery is still healing. I have had two patches that have opened up and the second one is still being dressed daily. I have been told to stay off my bottom as much as possible to give it chance to close up.

Things are very tough and mentally draining. The constant leaking from my other orifice is probably on balance the worst of the two evils because I don’t have an answer yet as to why I am still leaking there. No one is keen to take a look yet so I will still be like this for a few more weeks until I eventually get an appointment through to see my colorectal surgeon, then of course there will be more of a wait for tests, then more of a wait to get back for the result, ( been there too many times to be optimistic ).

I am prone to random bouts of tears, suppose this is normal after a large surgery when things haven’t healed as quickly as expected but I am sure I will be right again soon.

My buttock / thigh scar is still looking ok although I have large patches that are still numb and may well stay numb but also quite painful at times like someone has booted me up the backside . I do find that I can’t sit for long anyway before it gets uncomfortable ( and it increases the leaking ). As the swelling has gone down I can now see and feel where the muscle was taken from that area, it feels very strange and from the side I am sure my buttock looks square.

I have no idea whether the leaking ( with blood sometimes , and not just a bit) is serious or means things haven’t worked, but finding it difficult to get hold of the right people to ask it a huge task.

I have decide to reduce my hours at work which I know is the right thing to do, at the moment I am on reduced hours until I feel up to normal life. I had to go back to work as I was getting brain mush from crap daytime TV.

Looking forward to a few festive days with my family, and I hope all my followers and readers had a fabulous healthy happy Christmas and New year.

January

Leaking has calmed down a lot and my bottom feels fine, so feeling that bit better about it all, long may it last. Still feels weird down there though so will see over the coming months if things are genuinely on the mend.

 

Where is the post surgery counselling for patients and their families

I feel the need to express my concern about how little help ostomates and their families get about coming to terms with life changing surgery. I am starting a petition which I intend to take to the government asking them to make it part of the policy for post surgical care,  that we receive help mentally post surgery from someone who has knowledge of life changing surgeries, until we can cope for ourselves. This would also help with any complications that have arisen from surgery as I would also like the counsellor to have access to the surgeon and stoma nurses to quick refer any physical difficulties we may have back to them. Surgeons can’t just leave people to suffer with complications like hernias and fistulas for years on end before they get repair surgery, as quality of life is reduced so much by these things.

I have met and spoken to many people who have had this surgery and who feel lost once at home on their own. They don’t feel able to go out much because of body image, (a big concern for most ostomates )as well as leaking, pain, and they think that this is their life from now on. They don’t like to bother medical professionals all the time if the bags don’t work or their skin is raw they feel there is nothing to be done. They don’t realise that it is not normal and they should keep going back until it is sorted. Post surgery counselling and care would help those many people in this position.

I had counselling that I had to ask for myself, and I had to refer myself which seems the way nowadays, it is wrong on so many levels. My main concern is the amount of time it takes to get a first appointment, mine was months after my surgery and I was really really struggling. Secondly the counsellors themselves have absolutely no idea what it is like to live with a stoma and the lifestyle changes that involves. I was given cognitive behaviour therapy which didn’t really help me at all, after my sessions ended I just pretended they helped so I could get out of there. I know I had some post traumatic stress but CBT doesn’t do anything for that ( at least that was my opinion for me and my mental health) People need to be put in touch with stoma associations and groups, as I have also met people who were not aware they existed. It would have made so much difference in their recovery.

After a couple of months at home it is generally assumed that we can get on with things and don’t need as much support, but it is exactly that time when it is needed the most. Any concerns have become apparent by then, folk have had time to dwell on the enormity of there surgery, body image issues have surfaced and family concerns may be bubbling away, sex, relationships and seeing your partner/parent/ family member who was once bubbly and active, become reclusive and depressed. If you haven’t got a partner you may be worrying about telling someone, and what will happen when you do.

These are all real concerns that may not go away without support and help from a professional counsellor with the right skills.

I am drafting a petition to the government to get funding for tailored counselling specifically designed to meet the needs of ostomates. I will post it on social media and my blog and I hope I can get as many signatures as needed to make this possible.

Thank you

 

 

Can fashion and comfort combine for ostomates?

 

 

 

 

 

 

 

 

 

I have been quite brave with dresses since getting Tomas but I am always checking and patting that area. I suppose I feel blessed with having an ” outie” for a stoma in that my peristomal skin is reasonably good, but the downside is that you can see the telltale lump under my clothes ( or maybe I can but others can’t, but I think they can)

There are many people asking what they can wear that is not just baggy trousers and saggy tops, so I am going to find out. I already have a page about the subject  HOW TO FEEL GOOD IN CLOTHES

But this is how I feel, and not necessarily how everyone feels.  I now think I need to look into this subject a bit more. Many ostomates feel self conscious when going out for a posh night out in their glad rags, and we check ourselves in the mirror at every angle, but of course we all know that our silhouette can change during the night, so a flimsy wispy dress is a no no for many but the very daring.

There are some wonderful lingerie and underwear now for ostomates, some are very well known now and do well, for example VANILLA BLUSH 

(I have noticed that Vanilla Flush do a lovely lounge wear bottoms and I am a bit tempted to get them, and they are also available for men)

But I would love to see more clothing lines. I know that a lot of high street clothing can be worn by us but it would be nice to see things such as body con dresses and jumpsuits that are made with us in mind. Most jumpsuits show the outline of the bag or if you wear a band, you can see that through the material. The materiel needs to be thicker but still lightweight . Same for tight ish dresses. I wear high waisted jeans that are as soft as possible but must admit that the band can still drag my bag downwards, which is uncomfortable and leads to itching. I usually end up with leggings because they are the most comfortable thing I own. Crossover tops/ dresses, belts and patterns all help to hide lumps and bumps that we don’t want on show.

The good news is that the ideas are starting. I went to the Purple Wings charity ball and conference this year and there was a new product there, that was exciting.

I AM DENIM is the new jean for ostomates. They are low cut but have a waistband that hides everything else, wonderful. Just the fact that there are people out there that care and are willing to design and try warms my heart. They are dearer that the average pair of jeans but the way they are made and the added benefits mean that the production costs , I expect, are more.

But that can’t be it can it? well I have been scanning the world wide web and found some fairly obscure companies that seem to think we all want high  waisted  elastic polyester trousers and old fashioned knitted tops, or underwear ( not knitted underwear ) and we are all over 70yrs old ,hmmmm it all seems like hard work. As a rule I think we can wear most things but I have definitely tried on a few things and been very disappointed. Not sure what the answer is, just to find what works for us all I suppose. We all assume our bags can be seen, but in reality is it just our insecurities ?

We need more designers so if any of the clothing companies are reading this, you have a niche market waiting…………….

If anyone has any useful information regarding clothing, not necessarily made for ostomates, but maybe an item of clothing that has made them feel fabulous, let me know and I will add it to my page. Does it camouflage the outline? Is it comfortable? Is it patterned or plain?

A stoma’s life by Tomas the stoma

I woke up on a human

She didn’t seem that pleased

I caused her lots of problems

Especially when she sneezed.

I showed her my annoyance

That I was also taken from

The place that I was happy

Connected to her bum.

 

We decided on a truce from then

We would both do our bit,

She would do the cleaning

And I would do the shit.

 

 

She cleans me very carefully

With different creams and sprays

If she does it properly

My bag will last for days.

I can’t help being naughty though

Especially when she sleeps

I will fill the bag with lots of crap

And that is when it seeps.

 

She jumps up out of bed and shouts

“You’re such a bleep bleep bleep,

You have done this once too often

And disturbed my beauty sleep”

I decided to be nice for once

And stopped my messy play,

I was very tired myself of course

I’d had a busy day.

 

She eats things that turn runny

And things that can be red

She eats things that are smelly

And wonders why I shit the bed.

 

There are times though , that she likes me

When I act all sweet and cute

She will let me in the shower

In nothing but my birthday suit.

I relish in the freedom

I love the clean fresh smell,

The foamy soft light bubbles

Make me poo and fart so well.

 

I know she doesn’t mind this

As long as I keep it zipped

When she steps outside the shower

I am meant to stay tight lipped

No pooping on the towel

No pooping on the floor,

I’m to keep my side of the bargain

And not spray up the door.

 

Then she will keep me in the open

And let me play outside,

While she finishes her ablutions

I stay quiet on her side.

Just when she thinks she’s done it

And got me under some restrain,

I do what I do best of course

And we fall out once again.

 

 

Trying to control high anxiety-#WorldOstomyDay2018

It is #WorldOstomyDay so I thought I would write about something that affects many IBD and stoma patients, which is anxiety and / or depresssion. It is a taboo subject that needs more exposure so instead of telling my stoma story I thought I would share this important message instead.

 

Knowing you are booked in for surgery is a scary time, no matter what surgery or how many you have had previously. The nearer it gets, the more nervous I am. I have had other scarier surgeries where I was extremely ill, but it doesn’t matter, to me this next one is just the same. One of my worries about surgery is getting through the anaesthetic, I always think that maybe I have developed a heart complaint since last time and I might not make it. I know it is probably irrational ( notice I say probably, another one of my things is if I think it will go ok , I jinx it) It doesn’t matter that I have a pre op, that just makes me think they missed something.

 

I have high anxiety levels, when I had counselling they said it was very high. I have lived with anxiety for years and had panic attacks if I was in a situation my mind couldn’t cope with. Luckily with meds the panic attacks are much less severe ( I used to actually be sick and that caused more panic when I was going anywhere in case I was sick). This seemed to all start when the ulcerative colitis started, I would panic incase I needed the toilet when out, or if I started with a flare I would worry how ill I could become, as my first few flares were terrible and I was in hospital for ages, and being in my early twenties and never having been in a hospital before, I found it very overwhelming and scary. I thought I would die. They didn’t know what was wrong for a while and it was awful, so I am sure that is why I became the way I did. It ended up that if I was going anywhere away from my normal life, the panic would set it. I went to see We Will Rock You in London with some friends and remember sitting there in this big theatre feeling very sick indeed and looking around searching for toilets. I got through the first half but in the interval we all went outside for a drink and a break, I just burst out crying saying I couldn’t go back inside the theatre bit. I insisted I would be ok in the bar on my own and waited there for them. I rang my sister and told her what was happening . She wanted to come and fetch me ( she lived in London at the time) but I decided not to as my stuff was at the hotel. It was weird that I felt slightly safer in a very quiet bar than go back into that theatre again.

The panic feeling lasted all through the night and all the next day, and it wasn’t until I got home that I felt better. This has happened to me many times and I would even turn down some invites away because I just couldn’t control the attacks.

I remember taking a plastic bag out with me on the simplest of nights out, just in case, and the counsellor said I was using it as a crutch and I needed to stop taking one out otherwise I wouldn’t get better. I totally understood the reasoning and gradually, along with meds ( although I think the meds did most of it) I improved dramatically. The only problem is I don’t ever want to come off them incase it returns, a vicious cycle. I have had to increase them occasionally since my initial surgery as depression sneaked in and I went through a very dark time in the hospital. You can feel yourself slipping, I have never had it before but you can feel it coming like a dark cloud and don’t know how to stop it. I couldn’t stop crying either and I wasn’t the only one on the ward to feel like this at times. I am glad that I am ok now, and I understand how easily depression takes over. It doesn’t make you a weak person, it means you are going through something that you need help with at that time.

The kind of surgery that I have had is traumatic and has big implications on body image, anyone who has had a major surgery, especially one where your body has been altered ( and I don’t mean cosmetic ) is a candidate for mental health issues and needs all the support they can get. I do think that we should get some form of counselling BEFORE the surgery and after. I know if it is an emergency then that can’t happen, but in my case I was an emergency, but knew stoma surgery could be a possibility the weeks leading up to it, and the doctor must have known that too, but it ended up being a very quick chat with a stoma nurse whilst I was on the ward ready for surgery the next morning

These are life changing surgeries and more pre care needs to be done to help patients come to terms with what will happen to them.  I also feel that having IBD is life changing and more needs to be done to support those with these hideous diseases. I have been there and it’s not pretty. Helping the patients make the decision for stoma surgery is a must, you really don’t know if you are making the right choice to have one or not. If you had asked me if I would have had surgery sooner, the answer is a resounding “YES”. I was left to become so ill that the surgery became an emergency and the decision was taken from me.

 

The colorectal nurse, a rare breed indeed, National Nurses Week

Seeing as it is National Nurses Week I decided to write a post about the amazing colorectal nurses who cared for me for many many weeks on the colorectal ward E14 at the Queens Medical centre, Nottingham.

#ThisNurse

They were all totally awesome and caring but a few of them went above and beyond. One nurse in particular was so kind all the time but I remember if I was upset which was often, and she was on duty, she would come and kiss my forehead. This was such a nice gesture that I would like to thank her for making me feel so cared for. She had the softest lips too so it really made you feel better. ( it probably sounds more weird than it actually was lol).

They would help me with my depression and chat to me when possible. They clubbed together and bought me a cuddly toy and a card for mine and my husbands anniversary, as I was very poorly on that day. If they saw me walking only a few yards, they would make me feel like I had walked a mile. The sisters on the ward were not like Hattie Jacques as you would imagine, but lovely knowledgable people who knew when I  needed to do certain things even if I really couldn’t face it, to letting me off now and again when I was at my worst.

I remember my appetite was non existent for many weeks and I was so scared of not ever getting it back, my family would be worried and try and force me to eat more which of course didn’t work. The nurses would tell me that if I only ate a very small amount, it would be helping and try not to worry about it, that it would improve over time. The more I stress about it the worse it would be, so I tried not to worry, as it happens I did need to be NG tube fed eventually, but the nurses were always calm so they helped in many ways over the food issue. Of course ,they were right and my appetite eventually returned with a vengeance.

They cleaned and packed my wounds daily, gently and caring. They washed me and changed my soiled clothes, never making me feel like I was to blame.

They spent time with me, time they didn’t really have.

Considering their job work load and the type of ward they work on ( all poo and bowels) they are angels. They care for some of the most ill patients as their chosen field,  in colorectal, they have to be a special person to choose that calling.

From the healthcare workers to the sisters, you are one in a million.

You are never “Just a nurse”

 

Surgery next week eek eek

Surgery for the perineal sinus is nearly here. Am slightly apprehensive but more excited to get it done. It has been such a long wait ( over a year) that I can hardly remember using knickers without having to use pads. I will then have a month before I go away with the girl friends. I know these sinus tracts can come back and I shall just have to be super confident that mine won’t,  I don’t relish the flap surgery but will still have that over the leaking any day of the week. The surgeon will open up the proctectomy scar and perform a sinus excision and will also explore the area for other issues that may be there, such as suspected fistula and also a cyst, the cyst showed up on the MRI, I will then be sewn shut again as before.

I had my pre op last week which seemed to go ok, they checked my heart and lungs, and asked lots of questions then did a blood test, which I haven’t heard anything so assume it was ok. I am a born worrier though and have had a cough and allergy symptoms for months, but the GP assures me it’s chronic sinusitis so I will have to stop thinking I have every other disease known to man. Fingers crossed I don’t get cancelled.

I have been on a diet and resumed low level keep fit ( 10 minutes most days on a rower, I know its not much but it is something lol) I haven’t had chocolate, cakes etc for ages and cannot quite believe it as I am a known chocaholic and lazy bugger. I am hoping it will help me survive general anaesthetic ( I am also a tiny bit hypochondriac when it comes to being put to sleep ).

Not looking forward to getting up at the crack of dawn either, there for 7am ?????.

I am an inpatient but unsure how long for , but hoping it is ward E14 because they are lovely , and know me from my long stay previously so will be great to see them, then it’s home to recover ( on my side 😉  )

Not all stomas look the same- not all scars are the same-not all stories are the same.

WARNING PHOTOS OF SCARS, STOMAS, AND WOUNDS

 

I decided to ask my lovely stoma people if anyone would be willing to show their stomas or reversal/ surgery scars on a blog page, so that I could show that no two stomas are the same and that not all scars are the same either. Many people who have had this type of surgery worry that something is wrong when they see a picture of a stoma, and theirs is not the same.

I felt the same when I was shown a booklet the day before surgery that showed a cute little rosebud stoma on a perfectly clear tummy. This was one of the images.

In reality it is nothing like this. There may be a few lucky people with one similar but I have yet to meet one. The nearest I have come across and I might say, very jealous of, is this one…

How neat is that? unfortunately for this lovely lady, she eventually had to have a different kind of stoma, a loop ileostomy which is a “Demon” she said. Her scar healed well.

This lady had an original ileostomy that was very sore as it dipped into the skin, but had a new one placed which is much better. One that dips or is flush with the skin can cause major skin irritation and is very difficult to treat.

This selection was from someone who had a bowel resection in the beginning, theses are the scars, then a stoma. Her scar healed really well.

This following image is of a stoma, but also a fistula where they were not able to close the incision. This person will be having surgery in April to close the fistula and have a reversal , so no more stoma.

The following selection is from a woman’s first stoma which was a loop ileostomy. When this was taken down it was by the drawstring method and then the resulting scar which I think is very neat. The patient then had a j pouch but eventually that failed, so she had a new ileostomy which was very recessed and eventually was taken down again and the j pouch revised.

A stoma now, that has a scar next to it from repeated peristomal abscess / ulcer. It just goes to show that not all scars are the same.

Again a wound that is dressed, caused by an abscess due to hidradentis supparativa ( I had never heard of it either, its an auto immune disease that causes abscesses mainly on and under the breasts, under arm and groin ). With scar running down the middle from ileo surgery.

When they did the barbie butt surgery with this next patient they opened up the original abdomen scar.

The following few pictures are of an end ileostomy and a scar from a mucus fistula on the right . ( where the end of the rectum that has been kept and bought through the abdomen so that the mucus can be collected into a smaller pouch whilst it heals.) The rectum still produces mucus fluids even though it isn’t connected to anything.

A Crohns patient had a temporary ileostomy formed and a loop colostomy made permanent. this a scar that is only three weeks old.

All these lovely people were happy to help me raise awareness of all things stoma, and are very brave with their stories. For most of them, this has been a difficult time with many hurdles, but they have all come through in the end.

Thank you to each one of you who were kind enough to share their surgeries with us.