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I remember always having some sickness and bowel issues as a child. I would often be very very constipated and be sitting on the toilet for hours until I had seat marks embedded into my legs. I also had sickness bouts every few months, they would come on for a few hours and then I would be right as rain again.

Thinking back, this could have had something to do with the diagnosis of IBD (inflammatory bowel disease) many years later.

I am also very sure that a stressful situation started my first proper flare. I was going to see my sister in London the next day, but stupidly went out the night before with my purse in my handbag, in the purse was just over a hundred pounds and my train tickets, bank cards , photos and other special things.

I went to the busy bar to get a drink with my two friends and when I went to get my purse out it had gone and my bag was wide open. A wave of mixed emotions followed. I was so upset and angry and just didn’t know what to do. We went outside and there were some policemen who helped me to call the bank and cancel my card, they said I was the fourth person that hour.

I went home upset all night and my dad sorted out more train tickets ( we did eventually get the money back from them for the original ones) and I still went to London. I started to feel generally not myself, I got loose stools and when I looked in the mirror I thought my eyes looked sunken and dark.

I got home a few days later and things deteriorated from there. I started to be sick , I had an awful pain where my appendix was and I was struggling to make it in time to the toilet. The doctor came out and said he thought I had appendicitis and needed to go to hospital. ( This is not uncommon , it can mimic appendicitis) I had never ever been in hospital let alone had any surgery so was petrified. I got there and the doctor examined me. He said because of the diarrhoea he didn’t think it was my appendix and they would do a few tests and I would be admitted. The sickness, pain and diarrhoea were terrible and I thought I was dying. It was taking a while for a diagnosis and I had to have many tests. I was bleeding a lot too which was scary and I just thought ” I have cancer”. I was on a drip and often needed the toilet urgently which would cause accidents as I couldn’t get there quickly enough with the stand and drip in tow. It felt degrading and humiliating, although no nurse ever minded, I minded, I was a young woman who shouldn’t be soiling herself and need looking after.

I was put on intravenous steroids and fluids and couldn’t eat with the sickness. I was advised I might need a naso gastric tube to stop me being sick and I refused I was so scared. I was started on Olsalazine but remember at the time I wasn’t advised that I should be taking it indefinitely, so when those were finished I didnt’ get anymore and became ill again.

I started to respond to the meds and they also told me I have IBD but they were not sure if it was Crohns disease or ulcerative colitis. ( They never really knew at all because they called it indeterminate colitis after that as it could be Crohns disease even now ) I spent some years in and out of hospital with this awful disease, with many people not understanding how severely ill you can be with it. Many think that IBS is similar but I can safely say they are nothing alike. When I am in remission I have IBS so that will tell you something about it. IBD can kill you as I nearly found out last year. I am in no way saying IBS isn’t horrible, but it is not IBD.

My life was not how I imagined it should be, the illness was ruining my life, I was having flares at times when I should be well, for example when I was about to have my babies I would flare, and those flares lasted for a good few weeks after the birth. Most christmas’ were the same and I remember missing one Christmas day with my family and being stuck in bed. I was in hospital when my children were very small which was awful. Going for meals would sometimes end with me going home early because I would feel unwell.

I do think that although the surgery for me and my family was very traumatic, I can go out and enjoy my life now more than I ever could before. I have my off days but if I really think about it, it is nothing compared to the off days with an UC flare.

September 17, 2017

Colonoscopies

Colonoscopies can be performed for a variety of reasons but I will give you my take on them. I have had numerous with and without sedation.
The fear is greater than the actual procedure. There always will be exceptions to that rule but in general I find the whole thing not nearly as bad as I anticipated. The worst bit by far is the preparation.

You will be given some form of bowel preparation which is often a salty awful tasting mixture that you need to drink over a period of time, and because you can’t eat ,it is very nausea inducing I am afraid. But you just have to get on with it. After so long you need to start going to the toilet.
DO NOT PLAN ON GOING ANYWHERE as you will almost certainly need to go lots of times to clear your bowel out. Because of the timing of the prep you will be able to sleep, and in the morning you will need to drink one more sachet usually. You should be fairly clear after a while but the urges may still be there. As long as you have done as they asked you are ready. ( things may vary depending on when you are booked in, either morning or afternoon).
When you arrive at the endoscopy unit you will be taken to see the nurse before hand to talk about sedation and consent etc..you will be asked to get into a gown and you usually have to wait a short while for your slot, this is the time that most folk are nervous about the unknown, please don’t be, it is ok.
Next, you will taken into the procedure room where you will see a bed, a monitor and various other machines and items. Your doctor will there ready fro you , as will a nurse or two. One of the nurses will get you comfortable and look after you the whole time.If you asked for sedation this will be given now, you will have a cannula placed in your hand or arm and the sedation will be given.

The nurse will give you an oxygen nasal cannula or similar which is just a small foam piece attached to oxygen that you place in one nostril. You may get a different type but essentially they will be the same idea.
Once the sedation starts working you will feel very relaxed and may not remember too much, you are still awake and may even watch the monitor if you are not too squeamish. You will be on your side with your knees up and they will then insert the camera. Lubricant will be used to help it in and you should feel fairly comfortable.
The doctors ( as there may be two) will guide the scope around the bowel and may ask you to move into a different position now and again.

If they take biopsies you will not feel this. Sometimes you make be asleep and sometimes you may wake a bit. I do find some pain when they are moving the scope around the bowel corners, as they tend to use your tummy to help push it around, but in all honesty it is soon forgotten.
Eventually it is over and you are wheeled into the recovery bay where they will let you sleep off the sedation. You then get a cup of tea and biscuits and are on your way. You won’t be allowed to drive after sedation. If you are lucky you will be given a copy there and then of the report.
Good luck and don’t be scared, it’s a breeze. You have probably been through far worse with what has got you there in the first place.

September 11, 2017

Tomas the stoma on holiday

Nerves are kicking in just slightly. Looking forward to going away with the girls to Spain, but still have some reservations regarding Tomas and my sinus etc….lots of potential issues.

Tomas is behaving pre holiday so that’s good to start with. Hopefully he is good while we are there.

As I was going away with close friends I was ok, but just because of my leak and bottom problems I was nervous on the way to the airport. I was given a Diazepam to calm my nerves and it worked a treat. I was totally calm, probably too calm as I fell asleep on the plane.

At the airport I had to go through the body scanner at East Midlands. I mentioned the ” bag” and all was well, I was just patted down and was on my way. They didn’t even swab me this time which I was surprised with because the bag was a bit full and could have been anything. We then had a coffee and then we were off.

After a few hours of me snoring on and off and waking myself up, we landed in Spain. It was lovely and warm. After we unpacked we went to the beach. I had two pina coladas and was totally drunk because of the Diazepam I expect. When we got back to the apartment I fell asleep, woke up later and felt brilliant.

I noticed a lot of looks on the beach at my bag, or maybe it was the cover with Tomas on , who knows. Because I am a member of a lot of forums and groups I see stomas and ostomates all over the web all the time and marvel at how many of us there are, so was mildly surprised to find that I appeared to be the only one on the whole of the beach each day. It brings it home just how uncommon it actually is despite the push from the media and us lot.

One woman said ” I like that” pointing to my cover, I thanked her and said I had had a big operation, she looked embarrassed and apologised, I think she thought it was a fancy bum bag lol. Now that is an idea !!!

I couldn’t go in the sea or pool because of the sinus leaking, I even had to wear a pad in my bikini bottoms. We went for some lunch and that was where I had an accident which upset me. Whenever I sit i tend to leak through the sinus tract, but this time I leaked through my shorts, my lovely friend Helen came to the toilet with me and took my shorts to dry under the hand dryer, and I changed the rest. I was in tears and felt so fed up. The feeling passed and I got on with it again. I was constantly checking myself though which was very annoying but it was something I couldn’t help. I remember lying in the sun with my friends next to me and knowing that I was the only one that would have to check my bag and my bum constantly, and would need to know where the loo was. luckily it was very nearby.

Talking of toilets, Spanish toilets are on the whole very nice. Their disabled loos are amazing. At the airport there were three disabled toilets, all were massive and clean, and had all the things you could possibly want. ( see previous post about toilets in Japan).

I changed my bag twice over the five days mainly because of the heat, I felt the skin was starting to itch but there were no other issues at all with the bag. I drank plenty of water ( and alcohol) and ate lovely food. I over did it one evening and was sick in the middle of the night, I say it was over indulgence, everyone else said it was mixing my drinks.?

I did enjoy the holiday and because the friends I went with are my very closest, I could relax enough to tell them if things were not great, but be open enough that I could change and air Tomas in front of them. I had fun, I drank, I ate and I sunbathed.

My stoma looked a bit like a dartboard though, white bits and red bits, but the red is just where the mouldable ring has pressed onto the skin and where I got a bit itchy with the heat.

On the way back from Spain, the airport again was non eventful, I didn’t even travel with a note about the stoma or any extra stuff relating to it. I just thought I would explain when the need arose, and it didn’t. They could hardly deny the facts. A few of us took extra suitcases and hand luggage, it meant I could take whatever I needed without worrying about space. Hand luggage on it’s own would have been a struggle, I wouldn’t be sure what to do with make up solutions , suncream AND stoma solutions in those see through bags.

I would definitely go on a girlie holiday again , but would be so much happier with the sinus gone. Having a constant leak is no fun at home, but on holiday it is a menace. The actual stoma side was ok up to a point ( you are never totally normal). There were some clothes I would have liked to have worn but the bag showed through a bit so couldn’t. Playsuits and some tighter fitting stuff, usually the lighter colours. I really need to invest in a nice not too tight stoma band, just to stop it dangling. If anyone has any ideas of comfy bands that are not totally tight like the support bands I would be very grateful.

The moral of this blog is… don’t be afraid to go away, nobody is perfect so why should you be the only one?

August 27, 2017

The gym, a stoma, and a 50yr old woman…..go on then.

I hate exercise of any description, and having a stoma gave me a wrongly perceived excuse not to do any. But thanks to those wonderful ostomates who are bodybuilders like Blake Beckford and Zoey Wright ( thanks guys), I couldn’t use that one anymore. My husband is a keen health and fitness person who will look lots of information up to “help” me find the exercises I can do, and came across these stunning specimens before I had time to think of a suitable reason as to why they could do it and I can’t. I don’t run ( genuinely) as I have a weak leg. So that was out of the question. When I try to run I look like Miranda Hart doing her gallop.

When I last went to the gym it was way before pre surgery and I have to admit, I didn’t lose a bean so that put me off. I worked hard then too, but probably failed with the eating side. I love food, good and bad and can quite easily devour a family bag of galaxy counters without any trouble.

I was always fairly thin so got away with eating anything I wanted, up until I hit 40. That changed everything, I went from about 8.5 stone to a good 10.5 in about ten years. I am 5 foot 7 inches tall. When I became ill I dropped again to about 8 stone, only this time I looked ill and was ill. This photo was just after I came out of hospital and I hate it.

I ate what I liked because I could, and I was encouraged to, it meant I could eat all the things that were bad because I needed to add weight. Now, I can’t stop and I know I have to do something about it. Because I am so bad at sticking to it, my husband thought it might be a good idea to blog about it so the whole world can see if I don’t stick to it. Hmmm

As luck would have it ( sarcasm)…….we have a multi gym in our garage ( no excuses about cost then ). Jon has devised a programme for me and I had my first session. Now even though having a stoma doesn’t stop you doing things, I am terrified of getting a hernia, this is something that can happen more readily with someone with a stoma, but I thought to myself that there are many of us who exercise very happily if you take the right precautions. Firstly was the very flattering stoma support band. I am not a fan, I feel hemmed in and my stoma feels flat. When I sit it kind of flips up at the elastic or bunches up a bit, I feel I am always checking my tummy more with that on than without, but needs must this time.

Lovely isn’t it ? Bridget Jones springs to mind ” Hello mummy”.

Anyway, to start with I will be doing 15 mins on the bike, now this is already an issue because I find them so uncomfortable even with the gel seats, especially with my bottom problems, so luckily Jon got me a peddle thingy that you can use sitting on a comfy chair. He thinks of everything. ( sarcasm).

I then did some lateral pull downs with the cables attached to weights. He did take a picture but I wasn’t impressed so won’t show it this time. Camera angle and all that.

I then did some lateral side and front rises. This hurt the most and the embarrassing thing was, we tried various weights and the only one that I could do was……..the bloody bar on its own. The shame of it. Then on to the rower which I liked. this was my first session and it was ok. I now have a legs day to come. My stoma felt fine, I didn’t feel that I was causing damage so that was good. I was careful not to lift too heavy a weight ….as you can see, and hopefully in a few weeks I might manage a weight on the end.

I won’t bore you with it all the time but will keep you updated.

Weight 26/8/2017 11st 1lb

Waist – I would rather not say at this present time 😉

Cellulite – lots.

August 21, 2017

Talking toilets…an inconvenience

Toilets are a necessity for everyone, but if they are dirty, in disrepair or just downright odd this is a nightmare too, especially for someone with a stoma or a bowel condition like Crohns disease or ulcerative colitis . We spend a fair bit of time in them so it is very important.

Take the one in the photo for example. Look closely and you can see a very odd toilet layout. In the reflection of the tiles you can see the bowl right ? now look where the loo roll is……. yep 5ft above your head. What the hell is that about? This was in a Wetherspoons in Camden. I wouldn’t mind but the loo roll dispenser has to be the most annoying one ever too. I have seen some strange or filthy toilets in my time but never one where the loo roll was so out of reach. I was so bewildered by this, that I decided to tweet Wetherspoons about it. They replied and said that a lot of toilets were set up like this, I disagree I have been to a few and none of them were set up like this. If there are others, I feel it means they have a complete lack of interest in their customers and they should be embarrassed.

I have decided to check out some others, and name and shame or congratulate the owners. In fact if anyone would like to join in and send me any pics of toilets good and bad, I might do a poll or toilet wall, and send the owners a “Tomas trophy” for best and worst.

I know that people can use them and cause a mess.

But on the other hand staff should check them regularly for their customers. This loo was ok but the floor was dreadful, you don’t want your trouser leg in that when you pull your bottoms down.

What about the wonky loo seat? Not nice for most folk, but for us ostomates who sit right back on the seat to empty our bags its awful.

And if anyone has pee’d on it……..

You might say that we could be the dirty ones because we empty our poo into the loo regularly, but let me assure you that most of us are super careful and super aware of what we are doing and where it will go, and because we clean the bags etc we clean where we have been as well. The last thing we want is for someone to use the loo after us, and know what we have been doing. In particular, if we are at a friends and need to use the loo, their is no way in the world that I want to leave any evidence that I have a bag ( even if they know)

I prefer the disabled toilets, yes I am allowed to use them and yes, if anyone dares question me I will tell them why I am allowed to use them, and possibly I might even show them. These seem to be cleaner because they are not used as often I suppose, and they are bigger for us to sort ourselves out properly, although most of these don’t have a decent shelf to put essentials on, so if anyone is reading this who has toilets, be a dear and stick a shelf up.

How about this in Japan?

Toilets for Ostomates

Necessity of Toilets for Ostomates

Many Japanese ostomates are hesitant to leave home and have active lives in the community because they worry about how they will empty their pouches or handle leakage problems should they occur away from home. It is particularly stressful and instills panic to deal with leakage of stool or urine while in public. In a JOA survey, 50% of ostomates reported these helpless feelings.
Therefore, it can be said that the availability of public toilet facilities to meet ostomates’ needs is the key to their sense of well-being and rehabilitation in the community.

(Can you imagine our government going this far? This is fantastic to see, I just happened to come across it when googling.) There is more…

a) Toilet
b) Small-sized sink with a warm water nozzle (for discarding stool in the pouch and washing in an upright position)
c) Wash stand
d) Medium-sized sink with a mirror and a hand held warm water shower (for washing or changing the wafer, and for rinsing and cleaning the peristomal skin)
e) Large and deep sink (for washing soiled clothes, etc.)

4) Preparation of the Environment
– Clear instructions on how to use each facility and its equipment
– Control of access to the toilet room. Easy access and use by ostomates is the basic premise, but safeguards against use by unauthorized persons are also important, especially at transportation terminals.
– Signage indicating the availability of ostomate facilities should be clearly visible at the entrance of each toilet room.

The installation and practical use of toilets for ostomates in Japan is just beginning, and we are in the process of trial and error to establish an optimum facility. To attain this goal, ostomates must be responsible for cooperating with the related authorities, owner organizations, and facility developers on all stages from planning to use and improvement.

It is expected that with increased availability of toilets for ostomates throughout the country, the rehabilitation of ostomates into the community will be accelerated, providing a better Quality of　Life for Japanese ostomates.
It is also hoped that through this initiative, public awareness of ostomates’ problems will be enhanced.

This just blew me away……..

3) The ease of using the facilities and equipment must be examined in view of the flow of an ostomate’s body movements and various changes of posture required from the start to the end of caring for his problem (such as changing the entire pouching system, standing, sitting, etc).

Click here to read the full article

How amazing if this were to happen in our lifetime, no one with any disability would have to worry about going out incase of problems ever again. The other amazing thing is that they have rolled this out over many parts of Japan but we don’t even have one on colorectal wards let alone anywhere else.

August 16, 2017August 22, 2017

Colorectal surgeon appointment today

Ok, so I have been waiting quite a while with a persistent perineal sinus, I had to have an MRI and this has been ongoing since Christmas 2016.

This morning I went to see my lovely surgeon, and I got the results of the MRI and his opinion.

Apparently I have a sinus tract in the wound AND a cyst. According to the radiologists, they are not connected. My surgeon is not so sure so he needs to speak with colleagues and radiologists to discuss what sort of operation I may need. It may be a simple laying open of the sinus tract to drain the contents properly ( when he says simple, that is simple to what I have had before). Otherwise he said it was possible I may need a more extensive surgery and in that case, he needs to consult a plastic surgeon so that the sinus has the best chance of not returning. ( Thought he was going to say , so that I would have a nice neat bottom afterwards , no such luck)

If the former, it will be a quick straightforward operation, if the latter, it will be more extensive and longer recovery ( but he assured me it would be nothing like my first operation which I was in hospital for nearly 3 months, glad to hear that ).

All in all, much as I thought except the added cyst. Could still be waiting a while…..

August 13, 2017August 29, 2017

Everything you wanted to know about a stoma but were too afraid to ask

I know that a lot of people don’t know much about stomas and would like to know more, either because they may need one in the future, know someone with a stoma and don’t like to ask, or are just curious.

All of these are ok.

I will try and answer some questions that I have been asked in the past, also if there are any questions you would like to ask, please feel free to get in touch.

WHAT DOES IT LOOK LIKE AND HOW IS IT MADE?

Ok, you may have seen photos of stomas and no two are the same.

Let’s start with a urostomy. This procedure is used to divert urine from diseased or damaged sections of the urinary tract. The most common urostomy is the ileal conduit. The surgeon will attach a piece of small intestine to the two ureters ( these are the tubes that carry urine from the kidneys), the other end is brought through the abdomen to form the stoma. There may also be a pouch made by the small bowel that acts a bit like a bladder that can store the urine before it is released through a catheter ( continent urinary diversion).

Ileostomy and colostomy are made with the bowel. Colostomy is when some of the large bowel is brought out through the abdomen and ileostomy is where a piece of small bowel is brought through.

This is a diagram that is one common way to bring the bowel through the skin, as you can see it is turned inside out and stitched to the skin. It is from www.insideoutostomy.life , a great site for information and keeping fit with an ostomy.

Tomas is an “outie” as he is quite long but some are almost flush to the skin.

Does it smell?

Yes, but only when you empty it. Same as going for a normal poo. The smells might be slightly stronger because the foods are not as digested.

Does it hurt?

Not the stoma itself, there are no nerve endings in the stoma. Sometimes the skin around the stoma can get sore, or we may get pain behind the stoma. on the flip side there is no control over when the stoma does its thing,so that is why we need a bag / pouch to collect the poo.

What does the bag look like?

There are various types, some are closed and you change the whole bag ( usually for colostomies) mine is a drainable bag because my output is similar to porridge, the colon was removed and that was where the water was absorbed back into my body. This also means that I can easily become dehydrated. This is the exact type that I now use, Pelican Platinum contour mini, and I really like it for comfort and neatness.

The drainable end is cleaned and the folded up into the bag and secured with velcro tabs, nothing can get out and it doesn’t smell at all when sealed. You can get them pre cut to size if you know the correct size for your stoma, or you can cut them yourself, this is better if for example your stoma is not perfectly round.

Can you have sex normally?

Absolutely no difference ( except it can sometimes sound like a packet of crisps rustling about ) you can also tuck it inside itself a bit to make it smaller. There are some really small ones available but non drainable.

What about bathing or showering?

Some people will shower without their bag, I personally don’t because it can get messy and you can bet that Tomas will decided to work just as I am drying myself, and because I like to sit up on the bed and air Tomas, I am happy to clean it then. A colostomy might be easier if you know when you might be about to poo, or at least you could take a chance after you have pooed. ( with some colostomies, the poo is more like a normal poo). With an ileostomy or urostomy this would be like Russian roulette.

How do you empty the bag?

Some people stand or kneel over the toilet, I personally prefer to sit. I will make sure the toilet is clean ( This is a pain in public toilets, people can be so dirty). I will then sit right back on the seat and empty the contents between my legs. I will often put a bit of tissue on the front of the bowl as this helps to flush it away cleanly. it is like a having a normal poo but quicker.

How often do you change/ empty the bag?

this can vary depending on the type of ostomy. My experience is I change it every 2/3 days, and empty it when I go for a wee, or if it is more active it can be more.

What about at night?

I will empty just before I go to sleep, and sometimes I automatically wake up in the early hours to a fairly full bag, this can be more wind ( yes we fart into the bag) and that makes the bag balloon. One thing, if someone farts and it smells, it won’t be us. I find that ballooning can sometimes cause a leak,then I have to change the bag. Once you leak, thats it, there is no quick fix.

Why do you need a stoma?

For me it was a bowel disease called Ulcerative colitis, part of a group of bowel diseases called inflammatory bowel disease ( Crohns disease is the other main one). For others it could be many reasons, trauma from an accident, cancer, diverticulitis ( another bowel disease which manifests as inflamed or infected pockets in the colon. others get obstructions which can lead to perforation if left too long ( as can IBD). There are some patients who require both a colostomy/ileostomy and a urostomy. These amazing people are affectionately called ‘Double baggers”.

Can you get pregnant with a stoma?

The short answer is yes, you can go on to have a baby normally. There are some small considerations that your stoma nurse or midwife can help you with. The stoma can change shape along with the tummy, so the bags may need to be altered through the pregnancy. Scar tissue can stretch and be uncomfortable, but this won’t cause any concerns for the baby. There is support throughout pregnancy.

Does it feel different without the colon?

i have to say that no, it doesn’t feel different. I did hope to be slimmer around that area, but unfortunately other organs move into the space.

What does it feel like to not have a rectum or anus?

I still get the feeling that I need to poo the old way. It is a total impossibility for me, as nothing is connected and I have no “hole” ( unless you count the annoying Perineal sinus after proctectomy. )

the urge is a phantom pain, like after an amputation ,which is what a colectomy is, an amputation. Everything is removed and sewn or packed shut. This is where the term Barbie Butt comes from, because it looks like a dolls bottom now.

Because of scar tissue, it is not absolutely discomfort free for now, but I hope in the future it will be normal.

If you would like to add any more questions to the list please use the contacts form.

August 5, 2017October 3, 2017

Consequences for IBD patients when consultants can’t commit

This is a subject close to my heart and a very controversial one. There will be many people who are concerned with this subject but I feel it needs to be said.

I am a member of many IBD and stoma forums and the most overwhelming subject that keeps cropping up is patients being left to the “wait and see” approach. This to me is very dangerous as I also note that many patients’ bloods and observations are not indicative of the disease progression. These patients are being left in an unbearable position, in pain and suffering and for many this carries on for many months. It also means that if surgery is later than it should be, then the consequences of that can be major. There should not be anyone that is having life saving surgery for IBD ( there are some exceptions, like toxic mega colon that cannot be foreseen ). But I do know from experience that surgery could have been sooner with better outcomes.

I was one of those patients. Yes my consultant knew I had severe left sided disease, although it was constantly put down. It started as severe proctitis then gradually worked its way round to the left. I was feeling extremely ill, and my bloods were showing this at times. I was having temperature spikes, but because it wasn’t happening in clinic, I was disbelieved. I ended up with emergency surgery with no chance of reversal because my rectum was too severely diseased, to the point that I had rectal stump blow out, a major rare complication. I was also nutritionally poor before surgery.

These concerns are real and need addressing, the surgeons seem to have the right idea, ” don’t wait” . They are the ones that have to operate on people that could have been much better in health and now have many issues that could bring poorer outcomes. It will be the surgeons that have to work with what they have been given. I am sure the consultant GI’s are trying to do what they think is right for a chronic condition but I implore you to listen to the patient and take a leaf out of the surgeons’ book. It doesn’t mean you have failed ,it means you haven’t. I know that IBD is a complex and unpredictable disease with many forms, and very difficult to treat, but if treatment is not working anymore then enough is enough.

August 4, 2017October 3, 2017

Leaky Barbie Butt continued ..

You would think that having your arsehole removed would stop anything going in and coming out of it, but oh no I am left with a perineal sinus that is such a massive nuisance. The other thing that is annoying is the fact that because I can function near normally I am put on the back burner by the medical profession.

I don’t mean to moan, ok I do, I understand that many people are very sick and need urgent care, which I was one of them last year, but if an operation leaves someone with a drop in their quality of life then please don’t leave me for 8 months in that condition. I didn’t even know that a sinus could form let alone know that I might be a good candidate for it. ( I had a rectal stump blowout which caused pelvic sepsis). Could it even cause more serious issues if left? I am left with this constant drip drip which I am sure you can imagine is not much fun. You get very sore and constantly aware of that wetness, not nice when you are trying to get on with life.

My appointment is in two weeks ( fingers crossed that it doesn’t get cancelled again) and I cannot wait. I know something needs doing but I also know that I will again have to wait.