6th year stomaversary

 

Today marks 6 years since stoma surgery and it always gives me a jittery feeling thinking back. It was such a long and difficult journey which I wasn’t sure I would survive, so remembering those times can be unsettling.

APRIL 3rd 2016

12.30pm I was being put to sleep and for the following 7 hrs approximately, I was having my life saved. Around 8pm I remember waking up with an NG tube down my nose and my family around my bed on the high dependancy ward.

The next three days are a slight blur, but I remember snippets of things that are vaguely daunting and just a bit scary. Tubes and wires, the awful NG tube scraping my throat so that it was painful to swallow. The central line in my neck that needed resiting to the other side.

Then ten weeks on the ward, the most difficult of all my hospital stays. Sepsis and rectal catheters, high temperatures, another NG tube but this time for feeding me. Tears and depression, fear and exhaustion. Scar opening up and needing packing, more tears wondering how on earth I am going to cope, seeing my stoma for the first time.

Then a turn for the better, with light at the end of the tunnel. Sunshine, a better future. Getting acquainted with my new side kick Tomas, feeling better and stronger each day. Feeling well.

This is just a very short version that began on the 3rd April 2016. A lot has happened since those early years with Tomas the stoma, good bad and downright painful but I think we make a great team.

 

It’s not all bad

 

Cut the bag, size to fit

Making sure there is no shit

Coming out the edges, under the bag

All my hard work, my shoulders sag

Do I change my bag? Or just my seal?

whatever it takes to for my skin heal

 

Tomas just laughs and poo’s some more.

I try to catch it before it lands on the floor

Nothing to lose, I grab the bag

My son then walks in and starts to gag.

Get out I shout, whilst holding my belly

OMG mum, that really is smelly.

 

I slam the door shut and get back to my job

It takes all my strength to try not to sob.

The bag it on, my skin starts to sting

Just in time as the phone starts to ring.

Leave me alone, I am cleaning my stoma

For doing all this I deserve a diploma

My knowledge is vast regarding my poo

And everything else to do with the loo.

 

This is why I shout out about my condition

And having it done isn’t a terrible decision

Despite the poo and sometimes the pain

And the fact that I wouldn’t go through it again

I am left with a blob that I have to look after

But it helped me to live and overcome a disaster

I no longer have to rush to the loo

And there are many more things that I now can do.

So if you are worried about having this done

Just remember you will feel like your life has begun.

hidden disability is still not acknowledged

 

I have just has another little holiday in Spain ( I know, I know, I am a lucky bugger) and I need to air a couple of things about hidden disability.

Firstly the good things, I went through the body scanner and discreetly told the person that I have a stoma ( I don’t know how you other ostomates feel, but if I mention stoma a lot of people don’t know what I mean, and ileostomy just might as well be” fuzzy wuzzy was a woman” – sorry for the reference, so I often have to say colostomy bag and then they get it. I am not happy with this as there are quite a few differences, and I DON’T have a colostomy.)

 

The woman asked me to stay with her until another woman joined us and they explained that they would take me to a private space just to check on the bag. They didn’t ask to look inside, just a quick look overall. I don not have a problem with this and I understand why they need to do this. They were lovely and we chatted a bit, they said I was very confident and some other women had been very tearful when told they need to move to a private room. I suppose it would be better if they mentioned what they intended to do, but as I had had this before I was ok, they actually were very impressed with the black colour and texture of the modern stoma bags too. So all in all a very pleasant experience.

I have never used the hidden disability lanyard until recently at the airport, I thought it might help me by alerting staff that I may need to be checked on now and again, or they might just ask me if all was well and if I needed assistance with anything ( I have other health issues too ) Well I might just have well not bothered, no one acknowledged me at all so I won’t be bothering again.

Why you may ask, did I feel I might need someone? let me tell you why. On the way back from Spain we were last in the long queue through customs going up and down those cordons. I hadn’t really fancied emptying my bag on the flight but realised that my bag was close to exploding. No one was around at all until I got nearer the end and I told this man my predicament and instead of perhaps ushering me through a bit quicker ( which he could have done, as parents with young children and other non hidden disabled folk were going through easily) he said that at the beginning of the barriers and around the corner there was a new loo, great thanks. I eventually got through customs and ran off to find the toilets.

 

This could definitely have been handled better, either by having a decent sign regarding the new loo, or letter me fast track, it isn’t a big deal to them yet it would have meant a lot to me.

Why do we have to look disabled before we are seen as needing help? Too many people have the lanyard now so it is being ignored and I didn’t get any help from it so it might as well go in then bin. Anyone else have a story about hidden disability issues? I would love to hear them and maybe write a post including good and bad experiences.

 

Tomas travels again

My latest travels took us to Spain and with all the preliminary faffing with covid papers and tests etc we were on our way. Tomas behaved reasonably well, actually with what I threw at him he behaved amazingly well. We went for two weeks with my husband and friends and I ate the equivalent of a small house, not to mention the alcohol. I daren’t weigh myself yet until I settle back in to my normal routine back home.

I ate everything and anything, and waited to see if it affected me and my digestive system. Seafood, copious amounts of bread ( it was usually complimentary so I had to eat it ) things I knew I should have chewed better but forgot until it was already on it’s way. So all in all, Tomas was amazing it was just me who wasn’t.

I use social media a lot and it seems that with all my friends and groups of ostomates, I always expect to see someone on the beach with a stoma, but in six years I never have. It has always been just little old me, and this year I felt vulnerable and stared at. i kept tucking my bag into my bikini bottoms whenever I got up off my sun lounger to go to the toilet or the bar because everyone seemed to be looking at me ( I am not paranoid) and usually I walk tall and proud but this time I didn’t feel confident and I can’t explain why, maybe next time I will be back to being confident me. The photo at the top was taken on a secluded beach with just some of my closest friends and husbands so I felt happy to keep my bag out then.

We went to the mud flats to have the healing and cleansing salt water pool muds rubbed onto our skins and then washed off in the water, it was quite an experience and I actually enjoyed it. I made sure Tomas and bag were covered so that the mud wouldn’t get on to them and it seemed to work, I just felt the need to change my bag later that day.

I shall keep raising awareness and showing my stoma bag off ( when my confidence lets me) and I want others to know that you can still live your life the way you want to and get out there in the big wide world.

 

Time for Tomas to have a makeover

Since getting my stoma five years ago to now has been a bit of a rollercoaster of leaks, trying different bags and seals, discomfort etc to now needing a refashion of Tomas. Unsure yet if they will keep it the same side or have to move it to my left side.

The last few months was a worry for me because my stoma now doesn’t work or produce output, but weirdly the fistula does it all now. it’s very near my skin so very difficult to make sure my skin is protected and another thing I have found out is that the pressure of the fistula doing it’s thing can cause the leaks because it is against the base plate where the force is. ( hmmm very jedi )

Anyway, I think it is time for Tomas to be reborn. That pesky fistula has had it’s day and I just hope another one doesn’t form, three’s a crowd.

My most recent bag change has cemented my feelings, I get sore skin even though output hasn’t always leaked, from the general tight skin and a vein that is visible and uncomfortable coming from the area of the fistula, with smaller veins coming from the stoma, I am sure the fistula has caused all of this. All I want is to have a nice stoma without added extras, I have kept going with this for 5 years. The fistula pushes the stoma to the left so it is awkward as F to put the bag on in exactly the right place.

The Eakin seals have helped so much these last years and without them I feel sure my skin would be so much worse.

It has been a few months since my surgeon has passed me on to a colleague due to retirement but I haven’t heard anything probably because of backlog covid etc. I have managed this long so a bit longer is neither here nor there. I have such a love hate relationship with Tomas, if it was a normal stoma with no issues I would be so happy because the stoma actually is great ( when it was working) . I rarely got partial blockages, and have never had a full one, it just seemed to cope with whatever food was given, with no trouble. Even a pea popped out in full like it was being shot from a cannon, hilarious. A slither of mushroom, no problem just popped out too. Peanuts on the other hand can be troublesome for me, I did have a  partial blockage from too many handfuls of peanuts, I just massaged around and drank plenty of fluids, luckily it seemed to work.

So to have to change because of an added complication is a worry.

As you can from these photos through the years, you can see the fistula changes, and I suppose it will only get worse.           

very small fistula
Slightly bigger but still manageable
Starting to cause trouble
Not a pretty one
double trouble
Double trouble
Comical side, to help me through the difficult bag changes

 

 

 

CT with contrast allergic reaction

 

I have other ailments as well as having a stoma, one of them being idiopathic intracranial hypertension, which causes the fluid surrounding the brain to build up and cause severe headaches,( not too bad at the moment) pulsatile tinnitus ( horrific) and other things. Anyway, I needed to have a CT non invasive angiogram, which is a CT of the blood vessels in the brain with a dye injected into my arm.

I have had many similar with an MRI and when they asked if I had had contrast before, I said yes with an MRI. I also have mild asthma so mentioned that too.

Well, all I can say is, I will never have another one, it was awful. On the day it was fine, had the CT scan, did feel the stuff go in as was told I would and it felt very warm all through my body, but was told it was normal so wasn’t worried.

The next day it started. I began itching and itching and itching. A rash started to develop and it just spread all over my front and back, my eye swelled a little bit and a light rash appeared on my forehead. I looked a mess to be honest and rang the doctors. No one seemed in a rush to see me and just suggested over the counter antihistamines. Well it didn’t touch it and over the weekend in the evening I rang 111 for advise, that was a waste of time as they suggested I try the local late night chemist, who also wasn’t able to offer anything else.

Things didn’t get any better, but no worse and I rang the GP again who said they would send a prescription to my chemist of stronger antihistamines. I started on them and still not much improvement, AND no one had seen me.

The rash started to go but then the itching went to a new level. I couldn’t bear any clothes touching my body and was a mess. Again I rang the GP and they gave me prednisolone to try and help.

Three weeks on and I am still very itchy but have just got to get over it myself as no one seems to want to help. It feels like ants crawling over and I have little spots on my head too. I decided to look up on google and found it to be a common occurrence with CT contrast dyes to get some form of reaction.

I am still to find out how long this will last, I can scratch myself raw if I start so sleeping is difficult, I am reluctant to ring the GP practice again as they don’t really know the answers, I have had one doctor tell me that it could be kidney issues that the contrast has caused and that is why I am itchy, but another said highly unlikely so with that I won’t hold my breath for any other meds that might help, will go another week and see.

Anyone else have a similar reaction?

If it’s not one fistula it’s the other

I am now being referred to St Marks hospital in London for my vaginal fistula / defect. I have had issues ” down there” for years since my first surgery, and since the rectum removal so a bit longer won’t make much difference in the scale of things. Just hope they can help me.

Why do things occur or worsen straight after seeing your surgeon? you wait for ages to see them, then as soon as you are back home, things suddenly get 100 times worse. My stoma fistula has now decided to over power my stoma. For the last few weeks the fistula has decided to produce all the output whilst my stoma has none. The plumbing has altered and I don’t know what this means for the stoma. Will it wither and die? or will it keep on moving as if output will pass, but it never does?

 

Have you ever seen Scrad from Men in Black 2 with Jonny Knoxville? well this is Tomas and the fistula ( the fistula being the annoying second character attached to the first)

I think I need to consider a refashion sooner rathe than later and maybe re-site Tomas to the other side of my tummy, and just hope that I don’t get another one. My surgeon is retiring at the end of May so I think I need to ask for his advice re another surgeon.

Anyone else had a refashion or siting? how was your recovery? how long were you in hospital for?

FIVE YEAR STOMAVERSARY 3RD APRIL 2021

What a rollercoaster those five years have been.

A gastroenterologist who nearly killed me by leaving me suffering, to ten weeks in hospital having major scary open surgery to remove my large bowel and have an ileostomy formed, including 3 or 4 days on the high dependency unit ( I was a bit out of it there so don’t remember exactly how long).

Waking up with a naso -gastric tube the size of a hosepipe down my nose, and having a second central line put in my neck.

A slow recovery with many complications, rectal stump blowout which caused pelvic sepsis, and feeling so ill I thought I might die. A wound that opened up at the bottom which needed packing for 6 months. A fistula developing at the base of my stoma ( this all happened in hospital ).

Losing over 2 stone in weight and needing another tube for feeding, this one was slightly less hosepipey. Being very depressed and ill.

Having PTSD symptoms ( ongoing with counselling )

Having my remaining rectum and anus removed and sewn shut, developing a perineal-vaginal fistula and needing 3 surgeries then more extensive surgery. More embarrassment by having to have a medical photo of my rectal fistula.

Then ……Feeling better each day and meeting new people, joining the committee of the Notts & Derby Ileostomy association and becoming their Young IA rep. Going back to work and feeling part of life again. Holidays, nights out ( Pre-covid) and finally smiling again.

Starting this blog. Meeting the TG Eakin team and blogging for them on A Bigger Life website and community, along with a promotional video.

Don’t give up.

 

THE DISABILITY THING

I don’t like to class myself as disabled because people look at me and might even question me, which in turn makes me feel that I shouldn’t have that blue badge, or the orthotic for my foot drop or that my fistulas are not visible so therefore I don’t look ill or have chronic health issues.

I look like I can function as any healthy person might, but I do have health problems that you can’t see.

I have had neurological problems for many years which include foot drop which shows itself on many an occasion and can cause my foot to miss steps or even miss nothing in particular. If I walk any real distance my foot starts to drop and drag, it is tiring and awkward.

I fall and trip often.

I do worry that one of these days I might do something more serious than cuts and bruises, I have been close to hitting my head a few times.

They say it might be MS as I have a lot of clinical aspects but they won’t commit yet. They treat me as if I have got MS but I haven’t had a clear diagnosis, it can take years before they decided for sure.

I have a diagnosis of Idiopathic Intracranial Hypertension too, which means I have some mega headaches and awful pulsatile tinnitus because the fluid around my brain is more than it should be. I have had lumbar punctures to remove that pressure and all I can say is I am glad I don’t have it as severe as some. I was having a lumbar puncture for MS when they found my pressure to be high.

Then of course there are the fistulas that I have lived with alongside the stoma for nearly five years. I get pain and leakage and it generally makes me tired. I had a big chunk of muscle removed from my buttock and thigh which can have it’s own troubles.

I am not here to say look at me, feel sorry for me, my life is great even with my problems, I am happy and manage as best I can .I am here to ask everyone to accept others, and just because they look great, there may be hidden disabilities or health issues that you just cannot see. If someone gets out of a car with a blue badge, assume there is a hidden disability if it isn’t obvious. You don’t get given a blue badge without reason and it is not for anyone to judge if you need it or not, same for disabled toilets, and the worst culprits are usually other disabled people who’s disability or health issues are visible and don’t need to feel like they need to explain themselves.

 

I have actually never been approached by anyone but I can see the look. I know that some folk look at me and think I am just sneaking into the disabled toilets because I can’t be bothered to queue. If I don’t need to use them I won’t.

The trouble with fistulas

 

Living with fistulas can be so unpredictable. One minute you have discomfort and excessive leaking, the next nothing. You and your surgeon have no idea whats going on, is it healing? oh hang on a minute it’s started again.

My vaginal fistula has returned after serious major surgery to get rid of the little bugger. I am upset but most of all I kind of knew it would happen. They are dreadful to heal and most don’t, and folk live with them for years. Suffering with leakage, either fluid if not connected to a bowel, or faeces if it is connected, so that faeces comes out of the vagina/ bladder/skin.

All the surgery for IBD are major and hard going, and that is the same for fistula.

I don’t actually understand why these things are so difficult to cure, but I also don’t understand why we are left for years without much help. It usually take me a year each time it starts again after surgery, to actually get anything done and that means spending hundreds of pounds on pads and underwear during that time, not to mention the discomfort and pain it can cause.

THIS IS SURGERY FOR A MUSCLE TRANSFER AND FLAP SURGRY TO TRY AND CURE THE FISTULA, IT HASN’T WORKED.

I have a stomal fistula which I have had since my first surgery nearly 5 years ago, I decided to leave it be until the other fistula was sorted, but that seems never ending and the stomal fistula is causing so much more problems.

It has grown a lot since those early days where just a small amount of poo would come out of it as well as the stoma end. I could just about cope but now, it looks like another stoma and it seems to poo more that the stoma itself, as I suspect it connects further down and diverts the output to the fistula. It is at the skin edge so the output usually seeps under the bag at some point. I have also had terrible trouble with ballooning, where the bag lifts in the night because of excess gas, this then causes leaks usually near the fistula.

THIS IS THE EARLY DAYS OF THE SMALL FISTULA

THIS IS IT NOW, I HAVE ALSO HAD A REACTION TO MY BAG WHICH CAN HAPPEN SOMETIMES.

It is very difficult to cut the wafer to fit around my weird shaped stoma, and take me a few goes at it even now. AS YOU CAN SEE, THE FISTULA CAN CAUSE SEVERE SKIN EROSION UNLESS THE BAG FITS PERFECTLY, AND STICKS WELL.

I feel it won’t be long before I admit defeat and have a stoma revision surgery. Does anyone else have a fistula story that has become frustrating?

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