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 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 . 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.


A stoma’s life by Tomas the stoma

I woke up on a human

She didn’t seem that pleased

I caused her lots of problems

Especially when she sneezed.

I showed her my annoyance

That I was also taken from

The place that I was happy

Connected to her bum.


We decided on a truce from then

We would both do our bit,

She would do the cleaning

And I would do the shit.



She cleans me very carefully

With different creams and sprays

If she does it properly

My bag will last for days.

I can’t help being naughty though

Especially when she sleeps

I will fill the bag with lots of crap

And that is when it seeps.


She jumps up out of bed and shouts

“You’re such a bleep bleep bleep,

You have done this once too often

And disturbed my beauty sleep”

I decided to be nice for once

And stopped my messy play,

I was very tired myself of course

I’d had a busy day.


She eats things that turn runny

And things that can be red

She eats things that are smelly

And wonders why I shit the bed.


There are times though , that she likes me

When I act all sweet and cute

She will let me in the shower

In nothing but my birthday suit.

I relish in the freedom

I love the clean fresh smell,

The foamy soft light bubbles

Make me poo and fart so well.


I know she doesn’t mind this

As long as I keep it zipped

When she steps outside the shower

I am meant to stay tight lipped

No pooping on the towel

No pooping on the floor,

I’m to keep my side of the bargain

And not spray up the door.


Then she will keep me in the open

And let me play outside,

While she finishes her ablutions

I stay quiet on her side.

Just when she thinks she’s done it

And got me under some restrain,

I do what I do best of course

And we fall out once again.



Trying to control high anxiety-#WorldOstomyDay2018

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


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


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

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

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

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

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


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.


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.




More than one autoimmune disease


The list goes on

How many people have more than one autoimmune disease? It seems to me to be quite a few after seeing this topic many times on our forums.

I have been told that I have MS ( multiple sclerosis), it affects my left leg, sometimes quite severely. I get foot drop when I walk constantly for a time. I also get spasms and spasticity where I don’t have control over the leg. This is me after walking for a short while. They say it is mild at the moment which is encouraging, but you never know what is around the corner in life.

I have a foot brace thing which in all honesty doesn’t fit inside many shoes and is uncomfortable to wear, and I have a walking stick which I hate using as it makes me feel old. Because people don’t really know about this I think that if they see me with a stick they will wonder what I have done, and say that I am ok when they see me. So I kind of hide the fact. I have had my fair share of feeling that I am not believed that I just don’t tell anyone, I have enough on with the stoma stuff.

The thing is it is quite common for people to have more than one auto immune disease, because our auto immune system is already under attack it is easier for more to get in on the act. There have been papers on the subject, but also on the subject of MS and UC. Is has been noted that there is often a link between the two diseases which leads them to think it is more than a coincidence.

They have also thought that drugs such as infliximab which is an anti-tumour necrosis factor “a” therapy drug ( TFNa), could be involved. I have to then add in the mix that I was never given this or another type of that drug, so that isn’t true in my case. There is ongoing research into this finding so I hope they find out something in the near future. The package inserts do state that it may trigger a new onset of MS, so they are taking things very seriously.

There are many links to more than one disease, I have to admit that they give reasons like environmental and genetics, which covers them for almost any reason. They also say that some autoimmune diseases are more likely to link, based on a shared gene. Work keeps going with the help of people with more than one disease who donate their blood for research purposes. If there is progress with one of these diseases then that helps progress for other autoimmune diseases too.

I also have asthma so I have 3 known auto immune diseases which is then classed as a syndrome, MAS ( multi autoimmune syndrome). More than one is Polyautoimmunity. I would be very interested to hear if any of my ostomate friends have more auto immune diseases, and also others who have them but not IBD.




What is a perineal sinus tract exactly ?



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.