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.



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.






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?

Merry Christmas to all my followers

I would like to thank all my followers and readers a very merry Christmas and a happy new year.

I am so grateful to you all for reading and commenting on my posts and I hope you will stay for 2019 too ;). I couldn’t do it without you.

The fact that you have read and liked my musings has helped me to come to terms with my new life. It has been difficult, funny, sad, scary, lovely, but through having a stoma I have met some wonderful people, and chatted via message to folk who know what it is like to live with a stoma.



What can I eat with a stoma? The mystery question


This is a question that has always seemed a bit of a mystery for most ostomates, some can eat everything without much trouble and others get blocked if they so much as look at a baked bean.

I am hit and miss. Most things are reasonably ok if I don’t mind my output changing quicker than the speed of light. It’s ridiculous how one minute things are good and my poo is like toothpaste, next it’s like pee ( but with bits of lettuce ( even if I haven’t eaten any). But what causes all this change ? What am I eating that decides the consistency?

The other issue is that a colostomy or  ileostomy will react differently, and a colostomy that is higher will be different to a lower placed one. Most people with have totally different experiences with food, so I will tell you about me, and what the experts say.

When you first get an ileostomy your output WILL be watery and maybe much more than you hoped. But the good news is that once your stoma has settled into its new position and healed, it starts to get better at processing foods. There will always be those than have issues regularly or have high output stomas that cause lots of issues. I will leave them for now and just focus on a well healed ‘ fairly normally behaved’ stomas.

This piece of information from the Canadian society for intestinal research explains the “why is our bowel different”, perfectly. Please have a read if you are unsure about your diet especially in the early days  DIET & OSTOMIES

I am hit and miss. Most things are reasonably ok if I don’t mind my output changing quicker than the speed of light. It’s ridiculous how one minute things are good and my poo is like toothpaste, next it’s like pee ( but with bits of lettuce ( even if I haven’t eaten any). But what causes all this change ? What am I eating that decides the consistency?

The other issue is that a colostomy or  ileostomy will react differently, and a colostomy that is higher will be different to a lower placed one. Most people with have totally different experiences with food, so I will tell you about me, and what the experts say.

When you first get an ileostomy your output WILL be watery and maybe much more than you hoped. But the good news is that once your stoma has settled into its new position and healed, it starts to get better at processing foods. There will always be those than have issues regularly or have high output stomas that cause lots of issues. I will leave them for now and just focus on a well healed ‘ fairly normally behaved’ stoma.

Lets start with cruciferous vegetables 

These are your greens, broccoli, cauliflower, sprouts, radish, kale etc

Well with all these veg you need to be careful in the first few months of a new stoma. Introduce them slowly and chew really well. If you feel unwell and your output is watery or hardly there, then leave them for a while longer and try again. I can eat most of them now and only really have trouble if I don’t chew them well. Same with salad stuff except tomatoes I tend to peel.

Sweetcorn I don’t touch at all as they don’t break down in normal bowels so there is no chance with mine.


I have never been a huge drinker but I have always liked a good night out and cocktails on holiday so was very apprehensive with my first drink. Well the verdict is that I get dehydrated and hungover with just a small amount, which is a right bloody nuisance as my output gets like water. Wine is the worst, I feel quite poorly after wine. Gin and tonic is better and cocktails I just drink and worry about it later.


I avoid apple skins, oranges and anything with a skin or pith. It isn’t worth the hassle. I loved grapes but the thought of peeling each one isn’t funny .Maybe a few of you are ok with grapes and that’s fine, but I worry. You then think what about smoothies? I can be really healthy and drink fruit instead. So off you go to get all the fruit you can carry with a big smile on your face then WHAM. Newsflash, blending fruit is worse for you than whole fruit because you absorb the sugars etc too quickly and don’t absorb the fibre as well as you would. Who knew? Who is the annoying person to make this claim? How the hell do they know this? I still think a home made smoothie can’t be that bad.


i have first hand experience that unless we chew super well, mushrooms will pop out of your stoma and still look like a mushroom ( although yes in smaller bits, unless you really don’t have any teeth). I was cleaning my stoma when two pretty large pieces popped out. I was shocked and stunned but amused that I could tell what it still was. The good news was that it didn’t get stuck so maybe the texture helps it slide out?

The smelly stuff

Ok, because foods go through our small bowel fairly quickly ( the experts say 8 hours, I think it can be quicker) we still get the smells from the foods we eat come through into the bag. FISH is a classic example, it stinks and lingers so you need to be prepared to spray before and after, especially if you are out. EGGS are another one that smells for a while afterwards. I also find that kebab meat and a lot of processed foods are very pungent. You may also find foods like cabbage, onion, spouts etc are quite strong coming out the “other” end. You can get things to put into your bag that help with smells, some drops and sprays. Many say putting mints in helps with the smell. Everyone smells when they have been to the toilet so we are no exception, it’s just that our smells can be stronger.

The colourful stuff

I like salted veg crisps, but when I first had them I got a shock when I went to the toilet. My output was red and I thought I was bleeding out, it turned out to be the beetroot crisps coming out. So if you notice your output is a strange colour, then don’t panic for a minute and go back over what you have eaten, or indeed drunk.

As I said at the beginning, everyone is different but don’t avoid foods just because others can’t manage them, you may be fine and as long as you are careful and chew well, try them. Remember that the early weeks are more difficult while your stoma etc is healing, but things improve so that over time you know what you can and can’t eat.

Happy eating 🙂

My latest surgical adventure

As I am at home recuperating, and because I can’t drive, sit properly or go out, I decided to write a post about my complications of stoma surgery.

( great to get those TED socks off )


My latest ramblings about surgery started many many months ago with a barbie butt. I had my rectum and anus removed in November 2016 and it went fairly well I thought. The pain wasn’t so bad ( if having your bottom removed had something to compare to) I struggled to find a comfy spot but felt I could cope.

For two years things were not as straight forward. I developed a persistent perineal sinus tract that was a nightmare. A hole had appeared that constantly leaked fluid from my pelvic cavity. It was uncomfortable and mentally challenging. I would go out with friends sometimes, and leak through the dressings. As you can imagine, it wasn’t a barrel of laughs. I had an MRI to check how deep etc, then the waiting for results and hospital appointments and decisions what to do with me took TWO years. Does anyone know the psychological trauma of leaking constantly through your non bottom does to you?

Anyway, it was decided I may need a flap of muscle to transfer into the wound, but my surgeon then decided to open me up to check first and see if he could clean it out. In May this year I had this done.

I woke up to a wound that was big enough to fit a fist in and a sanitary pad stuck to my bottom.  I was sent home with absolutely no aftercare at all except to get my GP nurse to change dressing ( i.e sticking another pad to my arse).

My nurse was confused as the wound was a gaping cavity and she felt it should be packed. She rang the hospital ward who didn’t really have a clue but said it didn’t say to pack it. I was in limbo with a wound you could lose your plunger in. My consultants secretary was off so I couldn’t ask him. I didn’t get to see a doctor when I left the hospital. So my nurse just did as she was told and I just continued to leak. I rang my surgeon who booked me to see him and he explained that the cavity was too big to heal without flap surgery and he would book me in asap. I really like my surgeon, but really???

After about two months my sinus decided to stop leaking as much ( bloody typical) and wasn’t as painful, the hole had shrunk.

Two months later I went down to surgery after seeing a plastic surgeon too, and woke up without the flap surgery once more. They had opened me up and noticed that the end of the sinus that led to my pelvic cavity was healing, so they tidied me up and sewed me shut. I was pleased that it was all over now, and that I hadn’t needed the more complex surgery, although I have some reservations about it returning.

For example, the consultant that came to see me the next day said ” I always tell my patients not to worry at all if the hole returns, it might do because there is still a cavity but you can then go to your GP nurse to get it packed so that it can heal from the inside out.”

I feel some concerns here.

Since my original surgery I have also been plagued with a stomal fistula. This is another abnormal tract but from my small bowel through to my skin right next to the base of my stoma, you really couldn’t get any closer. This meant that when my stoma poo’s, the fistula poos too, that’s fun. I managed with it for these last two years fairly well. But it can be painful and awkward. As you can see from the pics, I have a very sore patch where the output touches the skin. As you can see, it has stripped my skin there so when any output gets onto it, which is most days, it is agony with pain and itchiness like nothing I have experienced.

The bag has started to lift when it poos so that my skin is unbearably sore, and I have leaked about 5 times in a few weeks. once at work (you just stand there for a second not knowing what the hell you are going to do ), and another time in my uniform but after I had got in from work. The rest was all in the night, the most recent the night after I got home from hospital. I tried to get out of the bed quickly but remembered that I had had surgery on my bottom so was unable to leap gracefully out, I kind of rolled onto the floor. I stood, wobble a bit and felt it run down my leg. This was not fun at 5am with a bruised stitched arse.

I was cursing and yelping with pain from my middle and bottom but didn’t manage to wake anyone for moral support, I felt putting the “big” light on and stomping around might be a step too far, so I got on with it and sorted myself out.

I have been advised to get the surgery and now feel the time is right. I am so not happy with it at the moment, the thing has got bigger and therefore more output comes out of it, and then more leaks and soreness. This surgery should then be it I hope. Would I go through stoma surgery again under the same circumstances? I have to say yes because these are smaller issues than the bigger picture, and yes it is hard but life with IBD is no walk in the park.

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.




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 TIESÂŽ is titanium.

It is still in early stages, but not that early, I wrote to Ostomycure who own TIESÂŽ 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 . 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.