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.



 

Cruising with Tomas the stoma

 

I have just come back from an amazing cruise with my husband ( and Tomas). I know you may be thinking ‘ And?”, well what I really want to say is what went well with a stoma and what didn’t, so that others will know what to expect. I suppose I am writing a bit of a travel blog with some stoma bits in between, and yes it was amazing and wonderful so I apologise now if you are jealous in any way. 😉

Customs wasn’t an issue at all, we flew from Gatwick this time and they didn’t have the booths to walk into, so I didn’t bleep going through the ordinary checks, in fact my husband did, so he needed the frisking and I didn’t have to say anything to them going through.

I was so brave I didn’t keep my sprays and adhesive remover on me at all, just in the main case in the hold, I felt confident with my stoma bag .I know, it’s madness. My fellow ostomates will understand why this was  Russian roulette. It was fine though so all good 🙂 usually I will have a clear bag with a few essentials in and that is usually enough. Not sure why one would need an extra clear bag except if you take your makeup etc in your hand luggage too. I just put that in the main case.

The ship was amazing, it was a Thompson  (TUI ) and the cruise was called ” Highlights of the mediterranean”. We were late booking so didn’t get the outside cabin with windows but we were more than impressed with it all the same. You still have to go through their own customs and check in and out off the ship. We were due to dock at Corsica, Italy ( Rome) then Florence or Pisa, then St Raphael ( for Monaco/ St Tropez), Barcelona and back to Palma.

The food and drink didn’t cause an issue with Tomas either but I was careful what I picked to eat, there was such a variety it would be impossible not to find anything suitable. I do sometimes get random watery output but never really find the cause, and it seems to right itself, this happened once on the ship and I just had to make more regular trips to the toilet. ( Info on the toilet facilities to come)

My only issue which was annoying is that I liked to wear a dress in the evening which are body hugging up to a point, so I tried my support band. It helps to hide the fact that I have a stoma but I worry that it squashes it all too much. I was right to worry, When we went back to the cabin afterwards and I undressed, I had pancaked and my base plate had lifted up causing a leak. As luck would have it, it didn’t go through to my band or my clothes, it just meant a nuisance bag change late at night. This is one aspect of a stoma that irritates me and makes we want to be ” normal” again. The fact that I have to check my clothes at all angles before I feel confident to go out the door, and I don’t really have anything that keeps me in place but isn’t too tight, is another.  I do use an intimate wrap under my dresses which helps a bit, but it isn’t deep enough to cover the whole bag, so I either stick out slightly at the top or the bottom bit where I empty digs into the top of my leg.

Ok, the toilets…… they are like aeroplane and train toilets, and by that I mean that anything on the front of the bowl doesn’t flush away properly if at all, so it took a while to sort out each time to leave everything tidy for the next person.  Not so good in the shared toilets on deck. The actual public toilet rooms in the ship, and in Italy Spain and France were good in all other respects, far better and cleaner than any we have here in England. The disabled toilets are all amazing even the one at the airport in Palma, I think we have to up our game here, ours are invariably disgusting and need inspecting before we dare sit on them. It is best to make sure some loo roll is stuck to the front to empty onto first but even then it doesn’t always flush there at all, but at least you could move it down a bit lol ( sorry too much information for some).

Usually on a beach I am happy to have Tomas’s cover out on show but on the ship sunbathing I didn’t feel as comfortable, there was no reason for this, but my thoughts were that these folks will see me all the time I am on here, but on the beaches they don’t know me and probably won’t see me again, not sure why I felt I might be judged, it’s just how I felt. One day it was quite empty when we got back from shore so we had nearly a whole deck to ourselves to use the sun lounges, so I braved it then and it felt good. Only a handful of people went by and if they did glance I didn’t notice. Normally I am very open about it all but I just felt slightly more vulnerable on there.

I did a bit of a pose when no one was around 🙂

Finding toilets on land could be difficult unless you were happy to buy a coffee or two, although after the fact I did see some public ones about. One cafe in Florence had an agreement to let cruise ship customers use their toilets if they had their cruise sticker on, which was good except I think they had an agreement with all cruise liners because the queue trailed outside the shop.

Back on the ship…

The staff on board couldn’t do enough for you and were very polite and treated you like kings and queens, it was lovely. They tidied the cabins 3 times a day, the end of the day they put chocolates on the pillows and turned down the beds. The towel art was amazing too.

I worry every time I go to bed in a hotel/ friends/holiday though. I don’t leak very often but you never know. I would be mortified, never say never.

There were many bars and restaurants, all excellent, with the all inclusive drinks being good brand names.( at least you know what you are getting then) You could pay for a premium package but there is no point really. Anything extra that you wanted either from the onboard shops or excursions etc had to be paid onto your Thompson card at reception first, or you could leave your bank card details prior to setting sail. We just topped up our card at reception if we wanted to spend anything extra.

It was great to wake up to a new place every day, and for those worried about sea sickness, it was fine most of the time. One day it was slightly swaying when you stood up and it took me a little while to get used to it, it made me feel slightly off. I was told this was a rare occurrence. Even though it carried on through the night, it didn’t bother me after that and it only happened once that badly. Don’t let it put you off if you are thinking of a cruise, it was a small part of a large great time.

FLORENCE

Beautiful buildings and churches.

ROME- BASILICA AND THE ENTRY TO SISTINE CHAPEL ( you can’t take photos actually inside the chapel, and you have to have your shoulders covered in both places of worship). This was my favourite bit and I was really looking forward to it, I was not disappointed.

All I can say is, don’t let travelling with a stoma stop you, yes there are challenges but they can be overcome, and to stop going places just to feel safe and cocooned means you are not getting the best from your one life. There are some considerations, but you know your own stoma and body so just take the time beforehand to get things organised and make sure you take everything you need. I can guarantee if you are not sure whether to take an item or not, take it because you’ll wish you had.

 

 

 

What is a perineal sinus tract exactly ?

SURGERY DATE FOR WIDE EXCISION AND GLUTEUS MAXIMUS FLAP 27TH SEPTEMBER 2018

 

Because I have now been pencilled in for my surgery date I thought I would explain what it is I actually have, and what they are going to do about it. I have mentioned that I have this complication but never went into real depth. At the end there is a youtube video of the same surgery i will be having, so if you are not too grossed out, take a look.

After having the proctectomy I stupidly thought that would be it for surgery and I could then get on with my life. I had been sewn shut ,so what could possibly go wrong ? Well there were plenty of things as it turns out. I noticed after about a month that there was fluid coming out from that area on to my underwear. It was watery and yellowish. I went to my GP who took a swab and it was an infection that needed antibiotics. I went on those for a few weeks but it didn’t really do anything.

Off I went to see my surgeon when I could get in ( which wasn’t very quickly). This had started in about December 2016, and I think it was roughly February at this point. He put me on my side and prodded and probed and said ” You have a perineal sinus tract”. Apparently it can happen especially after pelvic sepsis, and because I had had a lot of complications pre proctectomy with rectal stump blowout, I was the lucky one.

Because I had the large bowel and rectal stump removed, I developed a hole that leaked whatever was forming in the cavity space that was left. It is a long fibrous blind end tract covered in infected granulation tissue with an external opening. They can vary in size, and my surgeon wanted to do an MRI scan to see how big it is and how it affects my perineal area.

Now I had to wait for that scan appointment to come through. It took quite a few weeks, then I had to wait again for an appointment with my surgeon for the results, which took quite a few weeks too. At the appointment he said that there was a cyst at the top of the tract and he couldn’t be sure if the two were connected or not. He needed to speak to the radiologist to discuss and he would get back to me. It could mean a larger operation for a flap surgery or it could mean a smaller operation to get rid of the sinus.

I again waited weeks for this, and then had to wait more weeks to see the surgeon again. We were now in to 2018, over a year since the original appointment, and all this time I have a constant leak which often hurt to sit and made that area sore. I could almost feel it filling up and the pressure was painful then it would settle into a leak, then the cycle would start again. I often leaked through clothes even wearing pads, and that would stop me staying out , I would just go home. I have fabulous friends and family who would sometimes get me into the toilets and rinse and dry clothes with the dryers.

My surgeon decided to do the smaller surgery ( this still involved general anaesthetic) and try and excise the sinus. I got that surgery in May and I was left with a much bigger leaking hole, with not much information to go with it. I managed to get an appointment with my surgeon and he said that the sinus tract was too big to cure with simple measures and I have a large deep cavity close to my skin. I need the bigger flap surgery. I would need to see plastic surgery as they would help with the surgery.

I didn’t wait that long to see the them and he said I would either need a muscle from my inner thigh or the buttock muscle to put into the cavity to help heal, he thinks it is more likely the latter one as the cavity is deep and that muscle is larger ( thanks mate). I will be in hospital for about a week to make sure it has all taken well. I asked what if it didn’t work ? He said I had the other one spare. Let’s hope it works then. I am likely to be off for 6-8 weeks. I am very scared of this one, I know it will be uncomfortable to say the least, and although it is my only real hope of getting rid of the sinus, it could fail and isn’t guaranteed. I think about how mutilated I might feel and that I will look like Frankenstein’s monster before I am finished. I know that I need this, but really thought I was done with all this surgery malarkey.

It’s quite amazing how you and your body cope with all these ups and downs, it is so  mentally draining and so into the unknown, you don’t know what the outcomes are going to be, and whether you will be ” cured “. You worry about the pain and recovery, you worry about work, you worry about body image. But in the end you have no choice, I don’t want to live with a constant leak , fatigue and a low immune system as my body tries to fight the sinus damage and fails to make a difference. Antibiotics don’t help in this situation either, so no matter what infection swabs show, they won’t eradicate it. It has to be surgery.

I HAVE DECIDED TO SHOW YOU THIS YOUTUBE VIDEO BY THE COLORECTAL JOURNAL, OF THE TYPE OF SURGERY I WILL BE HAVING AND HOW IBD SURGERY CAN AFFECT YOU IN WAYS YOU DON’T REALISE.  I OFTEN THINK HOW WHAT SEEMS LIKE A SMALL HOLE CAN CAUSE SUCH A BIG OPERATION. IT IS FAIRLY GRUESOME, YOU HAVE BEEN WARNED, BUT ALSO VERY INTERESTING AND MUCH MORE INTRICATE THAN OPENING ME UP AND STUFFING MUSCLE INTO THE SPACE THEN SEWING ME BACK UP AGAIN.

Bend over……….

I had a humiliating experience the other day, and I think that although I can laugh about it now, not many people would be very happy with what happened.

I am a fairly strong person when it comes to showing body parts, and most IBD-ers know what it is like to have their lower body on show to GPs, consultants and the like.

I had an appointment with the plastic surgeon to discuss where he will take muscle from to fill the dead space where the perineal sinus is. All was well, he had a look and we discussed options, then the fun part begins. ” Before you go I would like a photograph of the wound, if you nip along the corridor there is the medical photography dept, take this form with you”.

Me and mum went there to find the chap was out the office just for another five minutes. We waited and he arrived, firstly I was slightly shocked that he wasn’t in a white coat or medical looking at all. I went along with it though and turned down a chaperone thinking that inside the room there would be a clinic setting with a clinic bed and blanket to cover bits that didn’t need to be in the shot.

How wrong I was, inside was a fairly large photography studio exactly like any other, those umbrella things and bold lighting, with a black large cloth at the back. NO BED, just a couple of stools/chairs. He studied the form and said ” Not sure how we are going to do this”.

” Maybe stand on that cross” I felt a bit like a deer in headlights, not sure who was more embarrassed.

I had to stand in the middle of it all, drop my jeans and pants ( take out my dressing from between my cheeks ) bend over and open my cheeks with my hands………. I know……… I was pretty mortified. To top if off he bent down with his camera to take the shots. ” Just a couple more”. It felt like a porn shoot.

Now I may jest telling the story, but OMG. I can’t be the only one who has a wound in a dodgy place can I? it was as if he had never come across this situation before. I didn’t dare say no because my plastic surgeon had requested it and I didn’t want to delay surgery.

Would you have done it to??Or maybe you already have? I didn’t even know there was such a dept in the hospital.

 

” I don’t feel very well today” dodgy experience at hospital

 

WARNING CONTAINS CLOSE VIDEOS OF TOMAS

 

Sorry it’s been a while since my last post, I do appreciate my followers and readers. This one is a bit of a rant and slightly longer than usual.

If it’s not one thing, it seems to be another lately. I always seem to feel ill and I am getting totally fed up with it.

Yes my surgery saved my life and I am very grateful, but I know that I will never be free from the constraints of stoma life. Totally wearing whatever I want without worry of seeing the bag through the clothes. Eating whatever I want without worrying if I have chewed enough or eaten something that will block the stoma. Not having an off day when I know that I have eaten something that has caused nausea and very watery output and pain.

I have been waiting a year and a half for a definitive surgery to close the perineal sinus tract in my proctectomy wound. Why do we have to wait so long between appointments? why in any other situation would that be ok? I have a life on hold, I am trying to hold down a job, I am trying to plan things in my life that I can’t guarantee, holidays, special occasions. It is my son’s graduation this week and I feel unwell. I have been waiting for this day for three years with utter excitement and now I am worried that I won’t feel up to scratch.

Do I have to just concede that this is my life now? Is it enough to have major surgery that saves your life but also changes it? Why do I feel like this? do all ostomates feel like this? Is it normal for me to be a bit off colour in some form or other a lot of the time?

 

I STARTED TO WRITE THE ABOVE POST ABOUT A WEEK AGO but I didn’t have time to finish it  because I became more unwell. I was very nauseous with a pain behind the stoma like trapped gas, that would come in waves and often wake me in the night . On changing my bag I notices that the stoma wasn’t moving at all which is not right. The only time it moved was when the trapped air that had built just above it, and got very uncomfortable and nauseating, released along with very watery poo. Then the stoma would contract a bit and go back to not moving at all. I was very concerned that this was not normal for me and I spoke to my GP and because of the nausea and pain behind stoma, he would refer me to the assessment unit at hospital.

I was struggling to drink enough because of the nausea so was very dehydrated and weak. Anything made me wretch and gag. They checked my blood pressure and took blood, then they took an x ray.

The wait was horrific. We got there at 11am and I was still waiting for the doctor to see me with the results at 6.30pm. All the while feeling ill and tired and sitting in a chair.

The doctor eventually came, almost discussed the findings in the waiting area with me and another patient present, then changed his mind and took me into a room.

” I think you have a partial obstruction and you need fluids so I am going to admit you” I was pleased something was being done and I was asked to sit back outside in the waiting area while they find me a bed on the ward next door. I would be given some intravenous fluids overnight then see how I am in the morning and  whether the problem had resolved itself.

A nurse then came to check my observations again ” You need to drink more, you’re blood pressure is very low” I explained that I was trying but very nauseous so was struggling. ” Have you passed urine in the last 6 hours?” No I said.

An hour and a half later, my bed was ready. I was not given fluids until then  ( after four painful attempts at putting a cannula in ) so I assumed they were not  too worried.

 

 

I know they are busy with very poorly people, but I must say there were only a handful of patients all day, and I overheard a nurse say how quiet it was,  what would the wait be like when full? There were invariably about four people of various uniforms behind the reception, chatting and eating. Throughout the day I tried to catch their eye to ask the progress, but never managed it. I ended up going to them. I do understand that it was the doctors I was waiting for and although the wait was horrific, that didn’t bother me as much as other things.

This wasn’t my best experience with the NHS and I am by no means saying I have not had great care in the past, because I have had amazing care by truly caring people, but I have also had shockingly bad care too. Why so different I wonder???

The doctor first examined me by sitting me on the bed and pulling my stoma bag half off. I yelped and said I usually use spray. At the same time my output was very watery and it went everywhere. He flapped about apologising, and mopped up a bit. ( It was on my trousers and pants at this point, nothing was going to get rid of it because it was like brown water ).

A very quick look and a ” It looks a nice pink colour” and it was done. I was left to sort myself out. I told him that my stoma which I have lived with for two years day in and day out, was not behaving in the usual manner. I wasn’t someone who had run to A&E every time my stoma had a wobble, but I knew this was different for me. My stoma wasn’t moving at all, I was very very nauseous and had pain behind the stoma, and I told him.

” It moves inside pushing the contents through that’s why, the movement is before it comes out the stoma” he answered. WHAT?

I could hardly say ” Excuse me but you are very wrong, a stoma will wriggle and move continuously with the rest of the bowel, I see mine all the time and it moves ALL the time” He was a doctor and I was not, so I let it go. It also wasn’t as moist as usual ( sorry, I know that is many folks worst word ever made 😉  )

 

 

On the ward I relaxed a bit and was grateful for a bed. I got chatting to a lovely lady opposite, and eventually she needed an NG tube. I hate them. She definitely hated them. I could hear her saying stop it hurts, I can’t do this etc, and they said have a drink of water. She was gagging and spluttering and it made me join in. I felt so sorry for her. They stopped after a while and left her without the NG tube. the four of us ( patients) agreed they should offer sedation, but they can’t. ( I still don’t understand why not, as I had it put in when asleep having surgery). They then kept reiterating to her that she had refused it and did she understand the consequences. Poor bugger she didn’t refuse it, she just couldn’t bear it.

I then had two student nurses either side of me saying how lazy other nurses were and they shouldn’t need to be told what to do, they should know their jobs blah blah blah, going on and on.  Not great to hear, but one of them apologised for talking about it over me afterwards.

But again had two other wonderful nurses who listened and cared, and I thank them for that. They spent time with me and other patients, and were kind.

I was allowed home the next afternoon, still not with a 100% diagnosis, but felt a bit better. The consultant in the morning  ( upper gastro and liver )was very abrupt and didn’t hang around long enough to ask much. Stoma still not active apart from air forcing poo out but I could eat and the fluids had helped a lot. I will try and manage at home if it gets worse or happens again, as I am not confident unless I see a colorectal or stoma doctor. Obviously if I have absolutely no output, and vomiting profusely, I will.

Sorry for the moan, I have a bee in my bonnet at the moment. ( BTW I made it to son’s graduation although didn’t feel well enough to celebrate afterwards watching England, perhaps for the best as it happens )

One proud mummy ( he got a first : )   )