When things don’t go quite according to plan

STOP I WANT TO GET OFF

Having surgery is a rollercoaster ride at the best of times, but what if things don’t go smoothly? how does that feel? it can be quite a challenge to keep positive. Was it something you did? or didn’t do? Was it something someone else did or didn’t do? It doesn’t matter what caused it, this is where you are and you have to get on with it.

All surgeries come with risk, and some more than others, bowel surgery in particular is a surgery with many risks, wound dehiscence ( where the wound breaks down in some way and the scar may open). This complication is strange as it isn’t a question of just stitching you back up, you need to have the wound packed over possibly many months to heal from the inside out. My abdominal wound opened up at the bottom and it took 6 months to fully heal , to view CLICK HERE 

Weirdly it looked very painful but wasn’t really painful at all, and although the finished scar is not as neat as i had hoped, it looks like another belly button as it dints in too, but it healed well without infection.

This most recent surgery has some wound dehiscence , but because of where it is I won’t be putting you through the image. It seems to be closing quicker than the previous one.

I suppose my two most life altering complications were the rectal stump blowout ( in short, rectal stump blowout is a dreaded complication of an often already complicated patient scenario that causes pelvic sepsis )

The stump that was left in situ to be removed at a later date when I was more stable decided to blow its stitches causing pelvic sepsis. I had to have a rectal catheter placed through the burst stump into my pelvic cavity to drain the gunk that was gathered there. Lovely.

I would say it was one of the most uncomfortable things ( excluding or same as an NG tube) that I had. There is a balloon at the top that gets inflated after the tube has been placed, but whenever I sat or moved awkwardly, the damn thing brushed against something inside and caused the most excruciating pain for quite a few minutes. Unfortunately for me, the nurses didn’t really know the pain it might cause and kept insisting I sit out of bed now and again. I eventually spoke to a consultant who needed to reinsert it and he understood my issue and said I couldn’t sit with it, It was all quite traumatic, I had the drain for a good couple of months. This complication in turn caused the fistula and ongoing bottom complications that are still ongoing today but hopefully sorted with this  latest surgery.

The other complication is with Tomas the stoma.

I know, he is lovely and cute and all that, and I probably would have died without him, but he is a complete pest at times. It started very early in my stoma journey in hospital. When Kate my stoma nurse and I discovered that poo was coming out of the bottom of my stoma where it meets my skin.

WARNING, PICTURES OF STOMA POOPING

As you can see, this can be a big nuisance for many reasons

  1. The stoma can be quite watery or busier at different times and this can cause the bag to lift as it loses stickiness.
  2. This as you can imagine, causes leakage onto the skin
  3. And this in turn causes sore skin and incessant itching in that area.
  4. It is difficult to change my bag standing up because I can’t put anything under the spout to catch poo as it comes out onto skin as well anyway.
  5. I am constantly in a battle with my skin to keep it becoming a real problem, and I like to air it as much as possible when I change it, so it isn’t a quick change for me, it is time consuming.
  6. I have the dilemma of deciding on more surgery to move the stoma to the other side of abdomen and hope I don’t get more issues doing that.
  7. There are probably more but having a brain fog moment

All I can say is this, there is always light at the end of the tunnel, things do improve, and although it might not be the life you had hoped for, this new life brings new friends and new beginnings and maybe a life that’s worth living.

That leads me nicely ( ok plugging my daughters band Marty) to a song my daughter wrote for the band Marty, and I listened to it and thought it had some great words of encouragement if you are having a tough time coming out the other end of illness.

If you would like to follow the band you can find them on most social media sites @thebandmarty

 

 

Muscle flap surgery recovery -part 2

It has been four weeks since my surgery and some aspects are going well whilst others that I am struggling with and don’t know how serious it is,  who knows as I can’t get to see anyone until 6th November.

The scar on my buttock and thigh is very neat , it has opened up right near the flap by approx 2cm x 1cm, which the district nurse is dressing daily, but the rest of the scar looks pretty great and I am sure in about a year if will be exceptional. Some parts are still numb an other areas are quite tender with nerve endings and when I walk upstairs I get a weird sensation of pulling and twinging I assume it is where the muscle is missing.

I am feeling stronger after not being able to sit for 4 weeks ( that was hell on earth as I couldn’t lie down on my right side for two of those weeks  due to the wound and drain site )

The following, I hate to say does show the NHS in a poor light. I love the NHS and it has done a lot for me, but it has also been a nightmare at times, not the people who work there,( although there have been one or two questionable employees whom you wonder what on earth they are doing in a caring profession with the general public)  just the systems that are in place. They are dreadful with next to no way of getting in touch with anyone who has answers to questions you may have regarding your surgery.

When the wound was checked initially in the earlier days there was some discussion with the district nurses as to whether the flap had opened up slightly, this was a big concern and they rang my GP to see if he would come and take a look. Based on the complex surgery he was reluctant to know what he could do anyway so arranged for me to go to the surgical assessment unit at the Queens Medical Centre. This was utterly awful from start to finish…

  1. Because I wasn’t allowed to sit at all ( I was 10 days post op) I had to have an ambulance, which I waited for four hours. ( Again all the actual staff were second to none for care, the ambulance men in particular were amazing)
  2. I was put in a triage room ( this was at about 7pm) no one came to see me for a good 45 minutes, not even to say hello.
  3. The actual room was not clean. The last photo was of some suspicious droplets from the bed to the toilet.
  4. I was eventually seen at 1am by the doctor who said the wound was fine. So all that for absolutely nothing, on an uncomfortable trolley bed on my side. I eventually was told by my plastic surgeon that he had explicitly wrote on my notes that if there was any query about the wound I should go to the City hospital wound and dressing unit. !!!!!!!!!. I also needed to wait possibly another 4 hours for an ambulance home. All this being 10 days out from major surgery, again the staff were apologetic but the system was not set up for post surgery patients with possible concerns that need attending to quickly.
  5. As it happens my wound did open up but not at the flap but just near it so it is fine for district nurses to sort for now. But I started with a different symptom and that was leakage from my lady parts. Was this normal ? what should I do? plastics said they couldn’t deal with it as they didn’t repair that part, but trying to get hold of my colorectal surgeon is something on another level. Unfortunately for me he is semi retired so is not there very often. His secretary emailed him and he said he wanted me in clinic the next week, but as things don’t run smoothly for me, the appointment was made for two weeks instead ( he wasn’t in the trust the week he suggested, you are probably thinking as I was, why was I told he wanted to see me the first week when he actually wasn’t going to be there), his secretary said no one else would be able to see me, ( how does she know this without asking?) and when I asked for her email so that I or district nurse could send some photos she wasn’t exactly happy about it and said she didn’t have one that was secure and gave me an unmanned one from someone who was leaving soon ” But you can’t send photos willy nilly, just this once” yes miss. If there was even a small chance that the surgery hadn’t worked as planned I would have thought they would be fighting over them selves to get me looked at, but alas no.

So as it stands at the minute ( or sits haha) I am waiting to see my surgeon to see if my leaking is normal or not. It certainly feels strange, a bit like it did when I had the fistula so am concerned about the wait, I think there should be someone or some way to get hold of someone quicker if things aren’t necessarily going in the right direction.

Muscle transfer and flap surgery recovery IGAM flap

WARNING- This post has surgical wounds.

I have just had a big surgery for a perineal vaginal fistula.The procedure is known as an IGAM flap. Inferior gluteal artery myocutaneous flap reconstruction. I had a wide excision so that my surgeon could clear the fistula and unwanted tissue and repair the vaginal wall, then muscle was taken from my buttock and top of thigh to fill the dead space, where a flap of attached tissue was laid over to cover it, and stitched into place, this ‘ paddle’ as they called it, enabled them to view the wound regularly to make sure the flap was working and no tissue necrosis was forming.

DAY 1- SURGERY DAY- PART 1

I set my alarm for 5am so that I could drink the rest of the pre-op drinks.  I didn’t need the alarm. My nerves are just starting again so I watch The Real A&E in the hope that it takes my mind off my problems.

Weird being up and showered by 5am, don’t normally see this side of 7am unless I am going somewhere hot. No bikini where I was going.

Nerves were kicking as we made our way to the ward. I was prepped and ready to go. Usually I walk with my pillow and anti slip socks down to the theatres but this time I was in a brand new theatre further away so got to have a ride on a bed. I was given an epidural for after surgery pain relief, which took a few goes because of my ” Wonky back”, anaesthetists words, as was ” Did you know that this kind of surgery is very painful?”. Thanks for that. The oxygen mask came next, not keen. It reminds me of horrible teeth extraction as a kid with the gas. I can still smell it. After a few stabs in my arm, a vein was suitable and a few minutes later I was asleep.

I remember waking up and being told that surgery was finished and all went according to plan. I wasn’t in pain because of the epidural, and I am one of the lucky ones in that anaesthetic doesn’t affect me badly. I was taken to the ward. I couldn’t see much of the wound yet, I had a drain in the top of my thigh which I thought was a weird place until I saw the actual scar…..

 

The next day the nurse changed my dressing and I asked if she would take a photo of my scar on the buttock, I unfortunately won’t be showing my actual flap as is it hidden between my butt cheeks, but you can get the idea that it is a rectangular piece of skin and tissue that is stitched there. When I first saw the photo I was a bit shocked at the scar, it was like a great white shark bite is the only thing that came to mind. Although since then I have other pics that show it looking reasonably neat and tidy, and a district nurse has since said that it actually looks good and some that she had seen looked barbaric, so I guess it’s not too bad after all.

First pic is second day, second pic is about 10 days post surgery.

 

The care was excellent and my surgeon and plastic surgeon came and said they were pleased with the result and were hopeful that this would do the trick with the fistula. I opted to have the epidural removed after only a couple of days because it caused awful itchiness, and my left leg went too numb and they were concerned the epidural had done something. It was all good and the numbness went away ( except at the site of surgery).

I was very surprised how quickly they discharged me, drain came out on day four and that is when they let me go home. I was a bit concerned because the drain site was leaking, and I wasn’t allowed to sit at all for four weeks AND I wasn’t allowed to lie on back OR right side for much the same. This is all well and good but eating was a mess and my left leg was so so achy and painful after a short while. I didn’t get any offer of occupational therapist to see how I would cope with this, and mentally it was dreadful after about 2 days at home.

I have an issue with NHS surgery aftercare, it is more or less none existent as I will explain in my next post. In fact if it wasn’t my surgery and life on the line it would be comical. When you are discharged home even with district nurses ( who can’t tell if surgery is failing or what the fluid coming out of other exits is ( yes this was happening ) then you would think there was a plan to get in touch with someone who does……..

 

 

 

Living with fistulas

A fistula is an abnormal hollow tube that forms and links two organs of the body. I was originally told I had a perineal sinus tract ( an abnormal tube that is closed at one end) but they later found it to be a fairly long and wide fistula.

I have an unusual fistula, because I don’t have a rectum but have a fistula there that connects to the top part of my lady bits near my cervix. It is unusual because when I google it they don’t seem to be very popular AFTER rectum removal. A fistula connecting the two is called a recto/vaginal fistula but mine doesn’t come under that heading. My surgeon called it perineal/vaginal fistula, and although it is awful to live with ( especially 3 years down the line and two failed surgeries) if I still had my bowel then bowel contents would come out of my female parts, so there are some things to be thankful for.

This is a ( very) basic diagram where my fistula is in red so you can get the idea what is happening with me.

Needless to say, I leak out of both bits more or less constantly. It seems to come in waves of severity. I think the fistula kind of drains, then fills up then drains and so on. Sometimes it leaks just yellow fluid, others it can leak the fluid with blood or/ and  pus ( grim, believe me I know how it sounds, but I also know how it feels) If they don’t drain properly or close up temporarily then an abscess can form and you can become quite unwell. A surgical thread called a Seton is placed into the fistula to keep it open and draining and sometimes if they are tightened regularly then the fistula MAY heal. ( Although if you speak to people who have this they might not agree that a fistula can be cured this way)

They are notoriously difficult to get rid of and my upcoming flap surgery in October is the last resort really. There are no promises that it will work and I can only hope that it gets rid of the damn thing. The flap surgery I was having for the perineal sinus is pretty much the same, I will be having my buttock muscle used to fill the dead space in my pelvis after the fistula has been removed. So a plastic surgeon does the difficult bit this time. I asked him what would happen if it didn’t “take” the flap graft and he said ” You have another one” hmmmm.

I am very scared of the recovery for this operation and just hope it goes as smoothly as possible. If anyone has had this type of surgery I would be grateful for any tips.

 

I often mention my stomal fistula on here which I have had since the original surgery. This is where an abnormal link occurs from somewhere in my small bowel to the skin surface just at the base of the stoma. This time my poo does come out onto my skin around the stoma. Now this is quite difficult to manage and live with too. Apart from the fact that my skin has to be protected, I find it hard to cut my base plate to exactly the right shape AND to place it in the correct place. I have tried quite a few things and know in my heart that I will be having surgery to get rid of that too. Fistulas are not very common with ulcerative colitis and are more usual in Crohns disease, so I often wonder if I had Crohns of the large bowel, as I was told it was once ,then they said Crohns colitis then back again until it was settled on indeterminate colitis. Of course as with most things fistula can develop from other reasons too.

As you can see quite clearly, my fistula looks like a mini stoma and that connects somewhere inside along the length of the small bowel. It is tiring to look after two fistulas and I would like to be able to get on with my life without them. My stoma is great in every other way so surgery comes with worries too because I have no other problems with it at all so could I be causing more issues that isn’t there now… decisions decisions.

 

Where is the post surgery counselling for patients and their families

I feel the need to express my concern about how little help ostomates and their families get about coming to terms with life changing surgery. I am starting a petition which I intend to take to the government asking them to make it part of the policy for post surgical care,  that we receive help mentally post surgery from someone who has knowledge of life changing surgeries, until we can cope for ourselves. This would also help with any complications that have arisen from surgery as I would also like the counsellor to have access to the surgeon and stoma nurses to quick refer any physical difficulties we may have back to them. Surgeons can’t just leave people to suffer with complications like hernias and fistulas for years on end before they get repair surgery, as quality of life is reduced so much by these things.

I have met and spoken to many people who have had this surgery and who feel lost once at home on their own. They don’t feel able to go out much because of body image, (a big concern for most ostomates )as well as leaking, pain, and they think that this is their life from now on. They don’t like to bother medical professionals all the time if the bags don’t work or their skin is raw they feel there is nothing to be done. They don’t realise that it is not normal and they should keep going back until it is sorted. Post surgery counselling and care would help those many people in this position.

I had counselling that I had to ask for myself, and I had to refer myself which seems the way nowadays, it is wrong on so many levels. My main concern is the amount of time it takes to get a first appointment, mine was months after my surgery and I was really really struggling. Secondly the counsellors themselves have absolutely no idea what it is like to live with a stoma and the lifestyle changes that involves. I was given cognitive behaviour therapy which didn’t really help me at all, after my sessions ended I just pretended they helped so I could get out of there. I know I had some post traumatic stress but CBT doesn’t do anything for that ( at least that was my opinion for me and my mental health) People need to be put in touch with stoma associations and groups, as I have also met people who were not aware they existed. It would have made so much difference in their recovery.

After a couple of months at home it is generally assumed that we can get on with things and don’t need as much support, but it is exactly that time when it is needed the most. Any concerns have become apparent by then, folk have had time to dwell on the enormity of there surgery, body image issues have surfaced and family concerns may be bubbling away, sex, relationships and seeing your partner/parent/ family member who was once bubbly and active, become reclusive and depressed. If you haven’t got a partner you may be worrying about telling someone, and what will happen when you do.

These are all real concerns that may not go away without support and help from a professional counsellor with the right skills.

I am drafting a petition to the government to get funding for tailored counselling specifically designed to meet the needs of ostomates. I will post it on social media and my blog and I hope I can get as many signatures as needed to make this possible.

Thank you

 

 

The annoying and weird stuff about having an ileostomy

WARNING – STOMA PHOTOS

Although my life is better with a stoma there are obviously some things that are not so much. My first pet hate is the dreaded itch and it you don’t have a stoma then let me explain….

Sometimes your output ( poo ) leaks a bit under the baseplate, it can’t always be helped as there is always a small gap around the stoma so you don’t strangle it, ( believe me, I have wanted to strangle it a few times ) and this means that the poo burns the skin which starts off by causing the most painful itch that you can’t get to unless you remove the bag, and it can go on for a good while. Your skin eventually gets used to being burned by your poo and the painful itching stops, but it leaves very sore skin.

( The bobbly bit is a fistula where I get output from when I shouldn’t )

Also for no obvious reason your skin decides it doesn’t like the bag you have been using for the last 6 months, and reacts to it by being red and sore too.

( This photo is a mild soreness around the stoma, it has been more severe at times)

 

I started with one type of bag 3 yrs ago and all was well until one day I started with a reaction and it just got worse and worse, so I had to change my bag, no rhyme or reason.

I also hate it when ( again for absolutely no reason that you can think of) your output get so watery it looks like a well known water feature.

( gross I know, but thats the only word for it ). As you can imagine, changing the bag when you have Niagara falls doing its thing is no mean feat. Oh and it makes your skin red raw if it gets through your bag.

Granulation is fun, bumps and lumps of over granulated stoma develop and look unsightly (relatively speaking ). They can be uncomfortable and usually have to be frozen off with silver nitrate.

And another thing…….worrying what people think all the time, I really shouldn’t but sometimes I do. I try and be brave and ponce around the beach with my stoma cover out but deep down I am still acutely aware of folk looking. Half of me isn’t bothered and the other half, that annoying devil on my shoulder, tells me I am. It is a weird thing to be proud of my scars and showing them off, to that little voice that’s they’re saying ” should you really be showing the world ?” same with the blog, should I really be showing everyone my arsehole, cos that’s really what I am doing indirectly, or does it matter what people think? as long as I am helping people and raising awareness. I have decided to carry on and show the world because that is more important to me.

Using a disabled toilet is another thing, the amount of looks I get because I sometimes use a disabled toilet. If only they knew why, but why should they? it’s absolutely none of their business.

The fatigue….it is ruthless. I am not sure why I get it and if it has to do with my surgeries but it can be very debilitating. One minute you are like a ” normal “person going about your day, then wham, you are totally and utterly exhausted unable to function that well at all.

The strange….There are times when weird shit happens. You pass an identifying piece of food like a chunk of mushroom. I remember changing my bag and seeing two fairly large chunks slip out the end, and taking a few minutes to  identify it. You forget about that beetroot you had earlier and nearly pass out with fear when you empty your bag to see what appears at first glance to be a whole lot of blood.

You feel like you need a poo the old fashioned way, that’s very weird. You can feel gas travelling around your small bowel and it gets to that point when you would have passed wind from your bottom the normal way but it then carries on towards your stoma and you fart through that instead. Going through customs and instead of the officer patting you down and scanning the top of the bag through your clothes, asking if she can ‘have a quick peek’ !!! and when you open the peep hole in your bag she looks at you in a feeling sorry for you way, with an intake of breath through her teeth as if to say, that looks sore.

 

 

 

Meeting the TGEakin team.

I was extremely lucky to go to Belfast to visit TGEakin. You may have heard of Eakin’s products but don’t know a lot about them. Their most well known product is the Eakin cohesive seal. I have used this since just after having my surgery and cannot rate it highly enough. But there is one thing about it that is possibly better and that is the people who are part of the Eakin team.

This short video tells the story of TGEakin and how it all began.

 

Because I use the seal, they asked me to go over to Belfast as they wanted to produce a short documentary about the seal and how it helps you with getting on with life, they also didn’t want to use an actor and felt it would be much better using a “real” stoma patient who uses the product. Of course I said a definite yes to that.

All the arrangements were made, and off me and my husband went to Ireland. We had an amazing time, they treated me like a celebrity and were so welcoming when we arrived, and were shown round the factories. Tom Eakin himself came to say hello, as did his son Jeremy. The other son runs another part of the Eakin family business which you may have heard of.. Pelican Healthcare . I finally met Laura who I have emailed regularly because of my posts in ” A Bigger Life ” website but never actually knew what she looked like. I also met Kiera and Patrick who arranged the shoot. They were all lovely.

Laura and me         ( Laura deals with ” A bigger life” website)                                          

Kiera and me

Patrick, me, Jon ( hubby) and Kiera

In my protective clothing in the factory

The factory was so well organised and immaculately clean. It was so interesting to see how the products were made and how meticulous the staff were with making sure the products left the factory in perfect condition, I can see why Eakin’s seals are well liked.

The filming started on the streets with me and Jon visiting different places, and meeting friends going for coffee, having meals out and drinks. We then did the talking part in the hotel, which was the bit I was anxious about, but it seemed to go well, and I hoped they could edit it if it was awful. Sean ( the person doing the videoing) was good at making me more relaxed and I got to know them all comfortably by the end of the two days.

Here is the finished product, it is strange seeing myself in a video but it was great fun, and the fact that I am a genuine wearer of the seal. ( Oscar’s next year, must sort out my acceptance speech )

 

Visit their shiny new site at  www.eakin.eu

Anxiety, the invisible disability

 

 

#MentalHealthAwarenessWeek

Anxiety disorders are debilitating and I wouldn’t wish them on anyone. I have been a sufferer of anxiety for many many years, have seen a few counsellors, and have tried many things to overcome it. In my case the only thing that really works in any real sense, is antidepressants, and even they can’t fully control my anxiety.

Mine really kicked in when I was diagnosed with IBD. The uncertainty and fear really got to me. I can’t remember which was my first full blown panic attack but I do remember each one.

I went to London with some friends to see a show ( We will rock you ) and we were stopping over, I was looking forward it a lot and off we went on the train. I was fine up until we came into St Pancras and the panic hit me like a brick. I was a mess and what made my anxiety attacks unbearable was the fact that instead of feeling nauseous I would actually vomit.

So I jumped off the train and tried to find somewhere to be sick, I just had to go behind a bollard type thing, it was awful. These attacks occurred whenever I was going somewhere new. I went a few times to London to do a show and each time I suffered with an attack, which stopped me going away again for many years. When we were in the show, I came out in the interval and couldn’t go back in. I was crying and really was struggling. I convinced my friends to go back into the theatre fro the second half whilst I just sat in the bar on my own ( this felt better than going back in there). I rang my sister and she chatted to me until my friends came out. I had a similar one in Madame Tussauds and knew that my trips London were coming to an end for me.

I was invited to see Paddy McGuinness at a club in Nottingham with two other friends, I didn’t know the girls all that well at that time ( Since then we have become firm friends ) and one of the husbands said he would take us. I remember standing at the window looking for them and starting a panic attack. My husband tried to calm me and said it would be fine and I tried to calm the rising nausea and anxiety. I decided I would be ok and off I went. Well, in the car I spent the whole time keeping myself from being sick, it was scary and I just couldn’t get myself over it. We got there in one piece and finally my nerves calmed and I enjoyed the evening, being pleased that I had pushed myself through it. I don’t think my two friends knew anything about what I was going through in that car journey.

I used to go to adult tap dancing at my daughters ballet school, and we were going to perform at their annual show. We rehearsed all year and sorted outfits and logistics of where we were all going to stand etc, then at the dress rehearsal I was again struck down with this bloody awful debilitating panic and sickness, I managed to do the dress rehearsal and then a couple of days before the show, I just knew I couldn’t do it. The feeling of letting the team down was immense, and I felt a complete failure, a failure in life. I hated myself and the fact that I just couldn’t control my anxiety. It was time to see a doctor, and I was referred to a counsellor. I told her that I had got to the point that I would have to take a bag with me just in case I was sick. Because I knew I usually was sick, I really needed that crutch.

I had a course of counselling, which was fine, but it really needed me to do the work still, I knew what I had to do but no one can really tell you how to do it no matter what they say.

Years later and I was going to do a car boot at the local racecourse ground, I filled the car and me and two friends went in convoy with our cars. It was early hours and we had to queue to get in, I was in front of my friends and I got the panicky feeling again. My back went so hot it felt like it was against a radiator and I started to feel sick again. I was so cross with myself as I just couldn’t control it. I rummaged round for a bag to be sick in but didn’t have one. I had to phone my friend in the car behind and ask her if she had a carrier bag. She managed to find one and ran round to me so I could be sick in it. My friends are amazing and have always supported me, but I hated the way I was.

 

I was put on Citalopram anti depressants for my anxiety and have been on them ever since. They have helped me so much so that I can go abroad with my friends and am fairly ok. I say fairly because sometimes I have had those feelings but they have been so much better. Usually at the airport on the way there but I haven’t actually been sick.

I don’t think you can totally be free from anxiety disorders, you just have to manage them the best way you can. I really do believe that it is a disability because it impedes on your daily life. Just because you can’t see it, doesn’t mean it isn’t there.

 

 

Body image and positivity

 

Body image and what we should look like haunt most people. Those with physical body changes , more so. Why should we worry if our bum looks big in something or if our features don’t conform to scientific studies of what beauty is? so what if we lost a limb or our hair? so what if we have a stoma…

As you can probably see from my posts, I am an open person when it comes to my stoma, but believe me, I have many hang ups about my body. I could write a fairly substantial list about what I don’t like, but for the most part, it doesn’t include my stoma. It’s things like, my ( slightly) large nose and lack of a great jawline, but really, why? why do I feel like that? because I know it isn’t perfect so therefore I don’t like it. What is perfection? well science has decided it is certain criteria and measurements that are deemed attractive, but if that were true why are we all different? and why do we find different people attractive than others? therefore science is not right. It has a lot more to do with the person we are, and how we carry ourselves than what we actually look like.

I happen to come across a really great programme called Naked Beach

The concept is quite scary to even the most body positive of people but it really shows you that in the end no one really cares what you look like. Three contestants who are very insecure about their bodies go to a private villa in Greece where a number of body positive people are there in the nude ( initially with body paint and knickers) and they help the three overcome their hang ups, and at the end they have to join the team and go naked. It really seems to work because the team that are there to help have all sorts of shapes and sizes, including Dan who had to have his arm and shoulder amputated. After watching it I felt sure I would have gone there and stripped right off and gone skinny dipping in the sea too.

I love the photo shoots from #GetYourBellyOut and Purple wings charity too, they really show that we are not really different from anybody else, we are just as gorgeous. The more we show that we don’t mind having our bottoms on our tummies then the more it becomes accepted as just one of those things like a broken leg, and nothing to stare at on the beach.

( photo Purple wings photoshoot, permission granted for this blog)

I am no spring chicken but have decided that I am comfortable with my body enough to wear clothes I like whether they are tight fitting or not. I will wear bikinis with my stoma bag on show on a crowded beach, why shouldn’t I? I realise that if you are not confident then you will think that everyone is looking at you and whispering under their breath. But maybe, just maybe they are thinking how good you look, how confident you are even with a stoma ( or other difference). If you speak to everyone you know, I can almost guarantee that there will be something they don’t like about their bodies, so that must be true about all those folk you think are staring at you.

I say embrace your body and it’s differences and don’t let me be the only one with a stoma and a bikini on that beach.

Oh, and watch  naked beach  

YOU ARE NOT ALONE

Crohns or colitis ? ( plus a bit about the IA information day)

Sorry I haven’t posted in a while, busy busy busy. I am also excited about a thing I was involved with to do with stomas, but it is still hush hush at the moment so I can’t tell you yet. Watch this space !!

I went to the National ileostomy and internal pouch association information day the other week in Birmingham, and it was a great day out. I met many people who I only ” know ” from social media so to meet them in person was so nice. It was based around  Living well with a stoma or internal pouch and it was very informative. We got to have a great taster session about exercise with Sarah Russell called Move without fear, which was great for me personally as I have a fear of exercise for my abdomen. She is a massive inspiration having achieved so much since having her own surgery.

I missed hearing a talk given by Natalie Gardner ( aka @thespooniemummy) with the young IA peeps which I am sorry about because I now wished I had been there, as it was about body image which is a topic that can mean a lot to people with a stoma, particularly the younger generation.

We also had a mindful session which gave us techniques on how to slow down and relax which I found useful. ( Although me and Sue did a bit of giggling 🙂  )

The talk I was very interested in was called ” Should it be called Crohns” but alas as is usual for me, it wasn’t at all about the subject I had thought it might be about. I might just add though that it was a very good talk and very interesting, so I am glad I attended. I really thought that it might be about the question mark over indeterminate colitis/ Crohns colitis. I thought maybe he was going to discuss whether Crohns and colitis were actually variants of the same disease, as I have often wondered. Yes they are both IBD, but many folk have been told one then changed many years later to the other. Some say they have been told they have both, is that possible? is it just the same disease showing in a different way? ( The talk was actually about who really discovered Crohns disease.)

Many years ago when I was first diagnosed, I was told I had Crohns disease and that diagnosis stayed for about 10 years. I even had a biopsy that showed Crohns of the large and small bowel. Those notes are now so old I don’t think I can get hold of them, it was also in a hospital in Surrey. Move forward years and I was then told I had indeterminate colitis ( unsure which IBD I have) or Crohns colitis ( Crohns of the large bowel). Then it was decided I had ulcerative colitis.

I have always had a few doubts about which one, even now without the large bowel. The histology said severe UC but there were some bits that could be Crohns related, like thickening of the bowel wall. I also had severe swollen skin tags before surgery which is more Crohns like, and mouth ulcers.

Now, things again seem strange for me once again. The perineal sinus tract that I have had for a few years and have had a few surgeries on, has now been proved to be a rectovaginal fistula. Fistulas can happen with UC but again are more likely to be Crohns disease. I also have the fistula at the base of the stoma ( which is part of my small bowel.) Hopefully nothing else will appear within the small bowel to suggest I am not clear of IBD.

 

  • FISTULA – an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. So could be linking any internal organ or skin together.

This is why it would be great to get the conversation going about the subject of one IBD or two? who else has the question mark over their diagnosis? I hope and think that I had UC with some tendencies of Crohns in the colon that has now been removed.