Nine year stomaversary

Nine years since the above photo, nine years since my life changed. Nine years sice emergency total colectomy with ileostomy. Nine years since I was in hospital for 10 weeks at deaths door.

This photo haunts me a bit because I was so poorly, my eyes are dead. I was only just over the initial surgery when I had a rectal stump blowout which lead to pelvic sepsis, then an awful complication of an ongoing ( nine years to be exact) pelvic collection leading to a fistula connecting from the collection to my perineal area, then causing a hole in the back wall of my vagina. I couldn’t eat so needed an NG tube for feeding, and to stop the sepsis I had to have a rectal catheter inserted into my rectal stump to my pelvic area.

Nine years of constant leakage and intermittent pain. Surgeries, some very big surgeries, taking muscle from my thigh/buttocks and creating a flap. All failed.

As you can probably tell, I am not doing so well, I am usually very upbeat and an attitude of just getting on with it. But that attitude gets me nowhere, everyone thinks I am doing ok because that is what I choose to show the world, I am not ok. I go out and enjoy my evenings, but can leak through my clothes, My friends have had to ( and want to ) help. If I sit for any length of time at work or stand for any length of time ( you can see where it gets awkward even considering telling them because nothing can be done) I get discomfort/ pain. It can travel across both buttocks and weirdly down my flap scar. I need and love my job so will just carry on.

Medical professionals leave you to get on with it until things get very bad, and even then most don’t understand the impact. GP’s will do what they can, but it’s not their area so to speak, so they try and help but can’t make big decisions.

I google and join groups just to get some idea of how little is being done for people with colorectal/gynae fistulas or perianal Crohns disease. Since my last surgery about 6 weeks ago where they lay open the fistula and debride it, and repair the hole in the vagina, it has left me with discomfort bordering on pain at times, a lot of leakage and a feeling that the gynae repair has failed. I have had antibiotics three times and my GP thinks I have a low grade infection which may benefit from long term antibiotics.

I emailed my surgeon’s secretary nearly a week ago with her saying she will pass on my message, nothing has happened except I now have this low grade infection issue.

If i’m honest, the stoma has been the least of my problems and has generally behaved apart from a few blips and the stomal fistula ( yes another one there)

So this year my stomaversary is a reminder that I am still unwell after nine years, so won’t be celebrating.

Another short stay in the hospital

 

A few weeks ago I started getting a bit of tummy ache with nausea after my evening meal ( it honestly wasn’t my cooking), this was on and off until earlier this week. I had made a yummy shepherds pie but with swede mash, my plate was completely empty it was that nice.

I went to bed and can’t remember if I had that weird tummy ache thing again, but anyway I went to sleep. I kept waking in the night with quite painful colicky spasms, but tried to manage some sleep. When daylight came I had a look in my bag and the stoma was swollen and I had very little output. Usually I have a fullish bag and need to empty a couple of times in succession. The pain was coming in waves so my husband said to ring the stoma nurses or GP. I changed my bag first because I needed to cut the hole much bigger to accomodate the alien trying to get out of my tummy. Then I rang the GP first, that was fun, ” You are number 22 in the call queue”.

When I finally got to speak to the receptionist to ask what I should do, she went off to speak to someone and then said A&E. Now I don’t mind this but I do think the GP should have maybe got me into the surgical triage unit at least. Anyway I tried my normal stoma nurses at the hospital but had to leave a message, so tried the stoma team at NAMS, which is where we have to order our stoma supplies from and where there are stoma nurses, they said A&E too.

So we decided we should go there, hoping that I don’t have to sit in the waiting room for ever and a day. I was in a lot of crampy pain still with virtually no output. When I went to the reception window I said I have a stoma blockage and he could see I was in some pain, and the lady next to him said, straight to majors. Thank you thank you.

I was getting upset with my situation and they were really nice to me, put a cannula in and gave me intravenous paracetamol then saline.

I kept being wheeled around the busy majors department a bit like a car park, one in, move one, move back etc. They kept me next to a nightmare patient who kept threatening to remove the cannula that was giving vital meds, the doctors and nurses kept explaining that she had a very fast heart rate and could go after the drip had finished, she wasn’t happy with that and kept going on and on. In the end they said take it out then go ( knowing full well that wasn’t going to happen). Meanwhile I was trying to relax to keep my pain at bay to no avail.

Next they decided I should have a CT scan, and off we went, when we got there they said good I have a cannula. It then dawned on me that I can’t have CT contrast otherwise this would happen, and I forgot to mention it.

CT with contrast allergic reaction

So off we wheeled again to majors.

They then decided it would be best that I see the surgeons, and they would arrange for them to see me.

We waited……and waited…. 4 hours so far for them. Ok I think we need to get you to the surgical triage unit and wait there.

Off went again. At the door to the unit, they more or less chucked me off the trolley saying trollies weren’t allowed in there ????? weird I had been taken in before on one ( and I saw many a patient come in on them too). So they sat me on a chair with others who had been waiting years by the looks of it. I had my obs taken and after about an hour I decided to ask if I was back of the queue again. No there was one more in front, would I like a bed?

Yes please I would like a bed, it was now 5pm and I had been at the hospital since 10am. I was put in a side room with my phone barely charged and waited again. My husband had been back just to see how I was doing and waited with me for another 4 ish hours. Finally a junior doctor came in and asked what was happening with my stoma. I explained how it was swollen and not producing much and I had pain. He was debating whether to see it but decided we should wait for the registrar. It shouldn’t be too long but you never know. He seemed to think i would be staying in anyway. I sent my husband home and waited again. The nurses kindly charged my phone for me.

The registrar arrived, actually fairly speedily in the scale of hospital time. and asked if he could take a look. The bag came off and the small amount of fluid that had managed to get out smelled like nothing I have ever smelt. I apologised but he didn’t flinch, good lad.

The swollen stoma was still swollen and the output during the examination was zero. He had a feel around and told the junior doctor what he was looking for and how the fistula was the only part that had any output. ( This was the case for about a year I explained). I think deep down they were fascinated, and he said he would get a rubber catheter to see if he could unblock it. So in went the tube through my fistula, and he prodded it around up and down ( It reminded me of having your fat sucked out) He said he couldn’t really get anywhere and tried the stoma itself, this showed that it was only going down a couple of inches. He tried again and to my ( and definitely his) surprise, the other end of the catheter came out the fistula. I have tried to recreate the image just for you, you lucky things. ( I am no picasso I’m afraid, the brown bit is the catheter, and the stoma was much fatter than this)

He then said he didn’t think this blockage would resolve by itself and that I may need surgery, but would see a colorectal surgeon the next day.

I stayed in overnight in that room. Extremely boring as it was just four walls and a clock, I did have a bathroom of sorts to myself though. The tap on the basin was a bit weird, you turn it on and a jet shot out all over you, very interesting. My husband said that’s because it is actually a bidet tap not meant for there at all.

A few saline drips later and I tried to sleep,I had no pyjamas as we didn’t know I would be in. But they gave me one of their mini toothbrushes and micro mini toothpastes.

I slept in my top but decided to take off my bra, I got it half way off then realised I had my drip on the other arm and couldn’t get the bra off any further. Just in time a nurse popped her head in and saved me from embarrassment.

So far I hadn’t been sick, just nausea so no NG tube for me this time, phew. But I was super tired.

The NG tube (nasogastric)

Next morning I still wasn’t allowed to eat, it had been 24 hours by then, but it was ok I knew that I might need surgery. A nurse arrived a bit later and said I needed to move again to green bay, I had no idea where that was and had an awful feeling it was back on those chairs, but luckily it was a proper bay of four beds. I settled down there saying hi to my fellow patients, and waited for my husband and daughter to bring my belongings, I couldn’t wait for my pyjamas, body lotion ( I was so dry since being in here) and my charger. Although I sent a much longer list these were my main items.

I finally got to see the colorectal surgeon who had a quick look in the bag and said I may have a kink in the bowel, and there was some output so we should watch and wait as these things often do resolve. I could eat and drink and I was happy with that, and spent a better nights sleep.

I woke the next morning with the colorectal surgeon back. He asked how things were and I said maybe some improvement, and he said I could stay another night to see or go home to wait how things went. I asked that if I went home does that mean if things were not right, would I have to go back through A&E, but no I didn’t as they would give me a 72 hour access to go straight to the unit if I needed. Ok then I will go home, and here I am writing this from my sofa wrapped in a blanket hoping I am healing.

 

Round and Round

When I had my original stoma surgery I never dreamed I would be in this position nearly 8 years later.

After the IGAM flap surgery I thought that might be it with the big surgeries, but it seems not.

I have been informed that I have a pelvic collection 4cm x 5cm that links to the back wall of my vagina creating a large hole that the infection has created. I don’t really have a back wall at all now now. The collection then passes out my vagina.

Things have now changed slightly, as I discovered last Thursday, a new hole has opened up in my flap scar ( where my rectum etc used to be) and I now leak out of that. I had this before the flap surgery so I can now assume that it failed. I have to roll up swabs and tuck them between my bum cheeks to catch the flow of gunk.

My surgeon has just spoken to me and said he would be truthful and that because I have a very rare complication seldom seen, he is unsure how to proceed, and after discussions with colleagues he said that the only solution is probably to open up my long tummy scar again and start removing all the infected tissues and open my bottom scar again and do the same from that end. It would be a massive surgery he said. I may need a tummy muscle removing or another type of flap surgery but he made sure I was aware how much of a big surgery this would be.

We have decided that he will write to St Marks hospital in London as they are the leading consultants in the field and may have someone there, who is willing to take me on. I am very nervous with what the surgery may be but hope someone there will know how to sort me out. I absolutely like my new consultant and feel that he has drawn the short straw with me, having taken me on after my other consultant retired, and not being a part of the other surgeries. He has said that he is unsure at the moment how to help me except his proposed surgery and agrees that is would be wise to see if I can have someone with exceptional knowledge of my sort of complication.

He understands the effect this is having on me, physically and mentally and wants to help make me better in any way he can, and I can only wait for news from St Marks. I am scared, tired and put on a brave face most days.

To look at I seem absolutely fine, but underneath I am not fine and I would like to think I hide it well. Only a select few know the full extent of living with chronic ill health and I have great support so am one of the lucky ones.

 

 

Up & Downs of IBD fistulas

 

 

Fistulas are bloody awful, and not only that, the medical profession struggle to control them. Not only that, patients have no support whatsoever as to living with a fistula ( or two in my case) we are expected to live our lives for months to years with a draining fistula. I am usually a very upbeat person but these last few weeks are getting me down. It’s also one of those things that is difficult to explain. I have tried in previous blog posts but fistulas and sinus tracts are quite the enigma and even when I google about one of mine, there isn’t much there.

Many surgeries later and my vaginal and stomal fistulas are still making my quality of life miserable at times and all the while I have to just get on with it. I had a big IGAM flap surgery which although the flap and the rectal end of the fistula healed, the vaginal end didn’t, so now it is classed as a complicated case that needs careful management. All the while I am left with horrible symptoms and no one to support me whilst I wait…and wait.

This week has been particularly awful, this time the vaginal fistula has been playing up, every few weeks it will leak like a sieve and my day to day life becomes a chore, then it settles down again until the next cycle. Its just a fluid stuff that comes out but it burns and I am sore. The stoma one is constant poo because it has now taken over the job of my stoma, it must have grown to the extent that it has blocked the plumbing so to speak.

My main fear is leaving the vaginal fistula to become bigger and reconnect to the flap, as it stands now it has got worse over the months. I feel the need to tell anyone who will listen that life with a fistula is draining ( a little joke is allowed ). I can sometimes feel poorly and tired, irritable and upset, but keep it to myself because after six years of the same old thing, it becomes boring to hear.

Constant leaking and discomfort, soreness and pain. This is what a fistula is like.

I have no contact with a nurse to see how things are, and getting my appointment through with my colorectal surgeon is slow.

I am going through a phase of aggghhhhhhhhh. ( dictionary meaning..an emotion felt when everything is going wrong )

I have spoken about this before but those with fistulas need more help, there should be something in place where we can call someone and see someone whilst waiting for our appointments. Just a little support goes a long way.

 

A Bigger Life post re small bowel MRI

This post is on the A Bigger Life website .

 

 

I have had a small bowel MRI before I had my ileostomy, but this was slightly different to what I remember. They gave me some scrubs to wear which were throw away ones and a bag for my items.

I still had to drink this mixture, but I have to admit it wasn’t nearly as awful to drink this time. It was almost water but with a tinge of something, maybe like a shot of bowel prep. I had a canula placed so that they could give me the contrast. I chatted to the nurses who were also very lovely and when I went outside the room to wait I heard one of the nurses/ HCA’s say ‘ What happens when they remove the large bowel? Does the end just hang?” it did amuse me and I wouldn’t have minded her asking me.

I did find the prep went straight through to my stoma very quickly and I found myself going to the toilet a lot with very watery output. In fact as soon as I had wiped the end of the bag, it ran out again like having a pee.

When it was time to go in for the MRI I did one last empty and mentioned to them that it was filling up quickly. They were great and said to let them know if I needed to go during the procedure.

They put two cage like appliances over me, which I thought I hope it doesn’t squash my bag too much and pop it.

I was hoping to have a little relax and maybe a snooze ( I know it is quite loud but you get kind of used to it) but to my dismay the machine kept asking me to hold my breath for about 30 seconds then breath for every scan.

The first bit was over with then it was time for the contrast to go into my arm, so I took the opportunity to ask if I could go and empty again. They didn’t seem to mind but it was a slight nuisance getting all the gear back off and on again after I had been. She was probably tutting in her mind.

It was some more “ Hold your breath…..now breathe” for about ten minutes and I was all done.

My stoma had had enough filling up I was pleased to see, so after I was dressed and in the car, I decided to do a bit of shopping, this could have been a slight mistake because my stoma decided it had more prep to get rid of, so I did a quick supermarket sweep whilst holding my bag to stop it bouncing around with the fluid like a water balloon, paid then drove home, went to the toilet, and relax.

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.

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.

 

OSTOMY AWARENESS DAY 3RD OCTOBER

I am all for raising awareness and feel that it is important to show a stoma in all its glory, otherwise there really isn’t any point telling people what it’s all about without the fine details.

People are curious and have never seen a stoma, yes they can look scary and unusual, believe me I didn’t want to look at mine for weeks, and in hospital my stoma nurse changed my bag a few times with me looking away. But after I got used to it I would have people ask me questions about it and I was more than happy to oblige. ( I assume if someone didn’t want to know about them then they wouldn’t read my blog).

Stomas can look very different from person to person as the reasons for having a stoma vary too, mine is an ileostomy where I had my entire colon removed and my small bowel ( Ileum) was bought through my tummy. You can have a colostomy where you will have some large bowel left ( Colon), you can have a urostomy ( which is for your urine) there are still some more for example a jejunostomy where the part of the small bowel called the jejunum would be bought through. These are the main types but you can have many others.

 

Some protrude out more than others like mine, this is handy when you have an ileostomy or high colostomies because your output is much looser, a lower colostomy will usually have thicker output much like normal poo but most are made in the same way, this diagram is excellent showing how an end ileostomy is made from INSIDE OUT OSTOMY LIFE

These photos were from a previous blog post from some very brave and wonderful people.

For some of us having a stoma it isn’t the end of surgery, we often have our rectums and anus completely removed too, ( Barbie or Ken butt ) to make sure our disease has gone and doesn’t cause problems. Like me you might develop fistulas and sinus tracts which is not uncommon with Crohns disease and ulcerative colitis. As you have probably read before I have had surgery to remove a perineal fistula by having an IGAM flap. ( a large piece of muscle from my thigh and buttock was placed into my rectal dead space and a flap of blood rich skin was sewn over that part ) I also have a stomal fistula which will need surgery in the future.

So if you know someone with a stoma of any kind, remember that they have usually been through a few tough surgeries to get to the point where they look and feel well. You cannot see anything so please don’t judge us if we need the disabled toilet or can’t walk far due to fatigue. These surgeries are life saving but there is usually a cost to that.

 

The wrong thing to say to an ostomate

This week I have seen some comments on other stoma advocate’s posts that have upset me. I don’t mind the odd joke about my stoma as I am very open and a lighthearted joke or two lightens the mood. I can laugh about it quite happily with my friends and family.

But get me a stranger being rude and unkind and it makes me think that it is what everyone really thinks deep down. People commenting with the puking emoji on seeing a stoma is one of those. But the very best of the bad bunch is one that my friend The spoonie mummy mentioned on social media this week. It was from Twitter and the person concerned is a nurse in America I won’t be naming though, they can’t help being an arse ( excuse the pun)

Comments such as ” I can deal with anything in the nursing field…but a trach and an ostomy I just can’t do” ( puking face)

(A trach is short for a tracheostomy which is an opening created in the neck through to the windpipe so that a tube can be inserted to help with breathing, it is a different type of stoma hence the ending of ostomy.)

” I gag every time I hear I have a patient with one ” ( puking face).

” They are both nasty as FK to me and stink sooo bad” ( puking face)

What are their mentors teaching them? I hope these comments are seen by their employers so that they can decide if nursing really is the job for them.

Now don’t get me wrong , I can assume a lot of people might find stomas difficult and even scary, but putting such things on social media for the world to see really does make me feel sad to the point that I think if they feel like that then does everyone? Am I kidding myself that I can change the negative thoughts of people by being an advocate for raising awareness? These kind of comments really sets things back a few steps, but we must push through them or we end up hiding.

A similar comment on another post by Mr Colitis Crohns of eight puking face emojis this time from a primary school teacher. With the added poetry of ” F…ing gross”. Can you imagine if your child had a stoma and was under her care? hmmmm.

You may think, why are you telling us if it can be upsetting? well I think it is important to know that our job is to teach these ( luckily only a small few) people that their words and thoughts are inappropriate and really don’t help new stoma patients to overcome their fears. Exsisting ostomates are slightly more thicker skinned and we need to be the voice to let the world know that having a stoma of any description is perfectly fine and not dirty, smelly or any other discriminatory remark that these people think.

I have also read on an Australian site that there was a case that found a comment relating to the physical manifestations of a disability ( in this case a stoma ) at a workplace, the person had comments from her boss that were classed as discrimination, and acting in an insulting manner, so I urge these people to think before they speak.

Just as an extra note, I know you get derogatory comments in all walks of life not just stomas.

 

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