Away with the girls and Tomas

I have just come back from a lovely five days with my best friends to Barcelona. I was so ready for this break after having just recovered from my third surgery.

I had been buying clothes and bikinis for months so that I was prepared to feel great and confident on that beach and when out and about. Yes I am in my early fifties, but that doesn’t mean I should be make do with a knitted all in one swimsuit and a potato sack. I have enough issues with feeling good in what I wear with a stoma, so adding my age to the mix would just stop me going anywhere.

I am always nervous at the airport, this time not just because of Tomas causing mayhem in the customs queue, but because I have the added fun of rolled up gauze between my cheeks of my arse to absorb the perineal sinus leakage. My imagination was running wild with the that one through the scanner I can tell you. As it transpired, nothing actually happened.

This time I went through the scanner as usual and explained the stoma. The female customs officer was again lovely and said she would test the bag with the hand held drug scanner in a private room. ( Last time they just check the area of clothes over the bag. She shouted to her colleague that she had to take me off to scan me, this was embarrassing as I had to walk off to a private space behind a curtain with a second officer present. Everyone looked and I felt that they must be thinking I was a suspicious character if they needed me to go off to be searched. I felt I needed to explain to the second officer why I was being scanned as this hadn’t been explained. They were both good with me and I undid my trousers for them to put the drug detector thing on top of my bag. She went off to test the swab and came back saying all was well and I could go.

The flight was uneventful too ( my bag didn’t explode) and I was able to enjoy it.

I know that heat and alcohol are not good for us ostomates, but I still had a bit. I made sure I drank plenty of water in between and didn’t have any ill effects. Even after an evening ended with four shots of Limoncello 🙂

I decided to bite the bullet and eat seafood for the first time. I chewed well and had muscles, octopus and squid. In fact I enjoyed the seafood paella that much I had it about three times. Tomas coped perfectly and I now feel I can eat almost anything I want.

( Excuse the goofy teeth effect, it’s my brace lol)

For the first time I decided to use my  stoma support band, I am glad I did because I felt great in my dresses and you couldn’t see the telltale bump of Tomas. No one would know about my hidden stoma if I chose to cover up.

I had a couple of moments when my stomal skin itched, but this happens to me anyway because of the fistula. I changed my bag twice in the five days just because it felt dirty and the stickiness had been disrupted a bit with the shower and beach. I took a suitcase as well as hand luggage, I think just hand luggage would be hard work with the liquids I need. Not just stoma sprays but makeup etc , suncream and other toiletries. Luckily some of my friends felt the same and took cases too.

It is weird to not catch the sun all over your tummy, you end up a bit like a dart board when the bag comes off. I noticed this before…..

At Barcelona airport I forgot to take my leaflet out my bag that has my ileostomy explained in lots of different languages. I walked through the scanner and it must have flagged something because the Spanish women took me to one side and frisked me. She came across the tell tale bump of my stoma and I tried to explain what it was ” Stoma”…… Nothing from her….. ” I have stoma” ” Ileostomy ?”  . She didn’t seem to comprehend and kept patting it. In the end I pulled my trousers out a bit to reveal the bag, that did the trick and she moved me on.

Although I don’t usually mention the MS  illness in my blogs because I tend to disbelieve the diagnosis, I walked into the town with my friends and my left leg was just a complete pest. Whenever I walk any particular distance my leg becomes so weak and wobbly that I get foot drop. I then often go over on the ankle which I did then. It is such a nuisance as it makes me slow and I need to hold on to someone for the rest of the walk.

I felt very relaxed and enjoyed my break, just not looking forward to my fourth surgery, this will entail the surgeon and plastic surgeon using either the gracilis muscle from my thigh or the gluteus maximus muscle to fill the dead space in my pelvic cavity. It is the only option I have to get the best chance of stopping a perineal sinus tract  reforming. Who knew that these complications even existed? I certainly didn’t think that after my initial near death major bowel surgery , I would still be in and out of the operating theatre.

I will definitely be needing further holidays after the next one.

 

 

 

Ostomy and J-pouch moms

 

 

Although I am not someone who had a stoma and then had children, my story is the other way around, but the reason I joined this lovely group was because I had IBD whilst being pregnant. I just thought it might help someone on there who was considering getting pregnant before surgery.

Ostomy and j-pouch moms is a fantastic group for anyone considering stoma or j-pouch surgery and having children. There is a lot of support on there with others who have experienced this, so are used to all the questions.

Tara started the group in Canada and here is her story….

I’m from Toronto, ON, Canada. I was initially diagnosed with UC at the age of 17. I gave my IBD the best fight I could, through prescribed medicine, natural medicine and diet. I eventually decided my best option for a life outside of the hospital and chronic illness was surgery to create an Ostomy. At the time of my decision, I was diagnosed with crohns and colitis. The pathology of my removed colon showed a definitive crohns diagnosis. Months later, I decided to make it permanent and had the Barbie butt surgery.

Life has been good with an Ostomy. For years I decided it was my personal business that I had an Ostomy. Only some friends and family knew about it. I worked, traveled, swam, danced and dated and married. I thought since I was doing so well, maybe I could help others that weren’t, so I went to an Ostomy Toronto meet up. It was at that first meeting that I met some amazing ostomates that became good friends. The more meeting and events I went to, I made more friends that had been through what I had been through. I never knew I needed them in my life. I also met a lot of amazing colonless peeps online. I decided to “come out of the bathroom”, and I made a public post about having an Ostomy. I started volunteering for Ostomy Toronto, I wrote regularly for the newsletter, spoke to nurses and became a proud advocate.

Years before my husband and I started trying to conceive, I was worried if it was even possible to become pregnant. I had a friend do a google search for me. She found an article that was short and basically said it was possible. Through Ostomy Canada Society, I also made friends with other Ostomy mothers and had them share their stories with me. I also spoke with a GI and some stoma nurses, who all confirmed it was possible. When my husband and I were ready to start a family, through a fertility doctor, we found out that I had scar tissue around my Fallopian tubes. Our doctor said our best chance of getting pregnant was IVF. Thankfully, the first try took. Our daughter is now 4.

When I was trying to get pregnant and when I became pregnant, there was no specific support group for women with ostomies. I asked around in various groups on Facebook. So many questions were left unanswered. At 8 weeks pregnant, I decided to start Ostomy and Jpouch Moms. I added all the women I had met that far, who were moms, ostomates and jpouchers.

HOW UTTERLY CUTE IS SHE?

It was so great to have these ladies at my fingertips. I also never thought it would grow as much as it did. I have also added 4 admins to help with adding members, deleting spam posts or overly negative(even bullying comments) and to help with posts that get members interaction. While some hurtful comments aren’t always caught or deleted, we do our best to keep it a positive place. It’s not a group where bully’s post rampantly. With all the negativity on the internet it’s just not tolerated in the group.

The group is close to 2,000 members. While it’s a large number, I can’t help but think, that there are way more women who need to know our group is here to support them. That it is possible to become pregnant with an Ostomy or Jpouch and it has happened for a lot of women who’s doctors have told them it isn’t possible. I started a page called Ostomy and Jpouch Moms Worldwide in hopes that members or even non members would write their inspiring stories, spread more awareness and who knows, maybe some from the medical field will find the page, read features and change how they look at our fertility. I’m always happy when someone wants to be a feature. I also recently started an Instagram account for further awareness.

While I have help from admins, our time is stretched between being Moms, work and sometimes our health. I’m so grateful to those who are willing to help in any way. If any advocates are reading this. Please share with your followers and feel free to contact me directly about spreading more awareness at tara.parkal@gmail.com or send me a message on Facebook.

Please click on the links below to get through to the pages.

OSTOMY AND JPOUCH MOMS

OSTOMY AND J-POUCH MOMS WORLDWIDE

 

International Children’s Ostomy Educational Foundation UK (ICOEF UK )

                                   INTERNATIONAL CHILDREN’S OSTOMY EDUCATIONAL
                                                                               FOUNDATION UK
                                                                                  ICOEF UK

I am amazed that I haven’t heard of this wonderful charity before now , that is why I have decided to help promote what they do for children who have bowel, bladder or intestinal diversions.

These wonderful puppets help children cope with the big changes in their lives due to these surgeries.

Introducing The Gastronauts®

For children who have more than just butterflies in their tummies.

These fun Ostomy puppets help stoma nurses assist ostomate children and parents through their life changing medical procedures.

The Gastronauts were developed by Liz and Phillip Prosser, authors of “Unwanted Baggage”, a resource book for all ostomates.

Here are a few of these lovely puppets.

These individual personalised puppets are for children who have bowel, bladder or intestinal diversions. Each puppet is designed to reflect the child’s own diversion with its own ostomy bag, catheter, gastrostomy tubes etc.

 

This is how it all began……

Judith White, President, International Children’s Ostomy Educational Foundation UK
(ICOEF UK) – www.icoef-uk.com

Life changed for a fifty year old, living in the depths of Mid Wales. Liz Prosser woke up from an operation which left her with a stoma. What was a stoma and what would happen to her from now on and for the rest of her life? She researched the subject as much as she could and found very little to satisfy her knowledge. So, Liz, together with her husband Philip, who are both writers, produced a resource book ‘Unwanted Baggage’, but this wouldn’t help parents of children who had gone through the same experience as herself.The majority of the time Liz was confined to bed. In the evenings, to help to pass the time,
Phillip would sit on the edge of her bed discussing the days’ events. During one of these discussions, Liz said she would like to help mothers and children with bowel and bladder conditions like herself. She had the experience of the operation, the experience of changing her lifestyle. What happened next was to change their lives and the lives of 12,300 children worldwide and all in the space of just six years! Phillip, acting the fool as he does, wrapped a scarf around his arm, made a face with his hand and started talking to it. Liz saw the funny side of this and at that moment forgot her medical condition laughing at her “stupid” husband.

On thinking further, they decided to purchase a puppet and modify it to have exactly the same appendage as a child. Phillip sourced a 15” puppet and one was made for a child in a hospital in Wales. This was a great success and the
hospital asked for another one to be “manufactured” and, again, given to the child. The hospital noticed that the child talked to her puppet, which became a personal friend, as her puppet would not “tell Mummy” of her hurts and anxieties. This puppet was used as a friend to cuddle, a friend to take to bed, indeed a friend to share all her problems with on a one-to-one basis.More and more puppets were made and adapted by Liz, while Phillip sourced the puppets, arranged postage, etc. and introduced a ‘Knit and Natter’ group to help Liz, as demand was increasing at an alarming rate. One day, an email arrived from the USA asking for a puppet.
Liz started correspondence with Janet who now runs things from the ‘other side of the pond’ in the USA. Liz still produced the puppets for the USA, indeed the rest of the world. These would come into her in one’s and two’s which meant she could still have the pleasure of overseeing each puppet.I worked together with Liz on a local newspaper and have kept friends ever since the early days. It was after spending a Christmas with her and Phillip down in Wales I was asked to become involved with her charity. I would be her ‘legs’, running around the UK, doing talks and study days together with manufacturers and charity clubs. We have never looked back.
Last year saw me in Cape Town, South Africa, at the World Council of Enterostomal Therapists (WCET) Congress presenting an abstract on ‘The importance of using puppets as a tool to educate children into their new medical way of life’.
In 2016, the workload was so great that it was decided to divide the world into four main areas. I would control the UK, Janet would look after the USA, while Ruth would run Australia, leaving Liz and Phillip, who moved to France, to set up the EU countries.
The International Children’s Ostomy Educational Foundation UK (ICOEF UK for short) is operated throughout the United Kingdom by five trustees, and a small number of volunteers.
We meet five times a year and more often when major items need discussing. At the last meeting I was elected to President, while John White is Vice President. He looks after the dayto day running of the charity leaving me to oversee the puppet orders. This works well for us and keeps the wheels well oiled.Here in the UK, we have cut down on the number of puppets we can stock as our only source of supply is from abroad. These have to be ordered in massive amounts. The storage of 500 15” small puppets and 500 30” nursing teaching puppets requires a large space. When an order comes in through the post or via the website the details are checked and confirmed.
Each child’s puppet costs £35 to produce, so a donation to help fund the postage and packing is always welcome. The medical ‘bits’ are put into the puppet bag together with the puppet and are sent out to one of our sewing teams. These are collected when completed and the finishing touches added. Each child receives their puppet in a cardboard box, together with a
sterilizing plastic bag, a cloth bag (to carry the puppet to School), a Membership Certificate and a letter from me. Each puppet is numbered and from this number we can identify were the puppet comes from, the child’s name, the procedure and the hospital where it was carried out. On the outside of the box is an A4 label addressing the puppet to the child; not to the
parent, unless requested specifically.
The main problem in supplying children with puppets is Data Protection. We have the puppets to give to children if we can find them. The other problem is volunteers. We need people to be our ears and eyes and to tell parents and carers about our charity and the website.
If parents are informed about the charity, they can then make contact and directly order the puppets from us and this, in turn, avoids any Data Protection concerns.
Since ICOEF was formed, we have helped 12,300 children worldwide and over 2,500 here in
the UK.
There are over 53 reasons why a child may be ostomised. So, please ask yourself, the next time you’re out shopping or on holiday, is that child ‘normal’? I’ll bet you – you will never know.

 

Please click on the link to see more of what this wonderful charity is all about. Judith and her husband are now in their 70’s and are hoping to pass on the care of this charity to someone dedidcated and committed , who is willing to work with them with a view to taking over.

 

 

 

The Gastronauts® are personalised by the trustees and Volunteers of the

 

INTERNATIONAL CHILDRENS’ OSTOMY EDUCATIONAL FOUNDATION UK.

The colorectal nurse, a rare breed indeed, National Nurses Week

Seeing as it is National Nurses Week I decided to write a post about the amazing colorectal nurses who cared for me for many many weeks on the colorectal ward E14 at the Queens Medical centre, Nottingham.

#ThisNurse

They were all totally awesome and caring but a few of them went above and beyond. One nurse in particular was so kind all the time but I remember if I was upset which was often, and she was on duty, she would come and kiss my forehead. This was such a nice gesture that I would like to thank her for making me feel so cared for. She had the softest lips too so it really made you feel better. ( it probably sounds more weird than it actually was lol).

They would help me with my depression and chat to me when possible. They clubbed together and bought me a cuddly toy and a card for mine and my husbands anniversary, as I was very poorly on that day. If they saw me walking only a few yards, they would make me feel like I had walked a mile. The sisters on the ward were not like Hattie Jacques as you would imagine, but lovely knowledgable people who knew when I  needed to do certain things even if I really couldn’t face it, to letting me off now and again when I was at my worst.

I remember my appetite was non existent for many weeks and I was so scared of not ever getting it back, my family would be worried and try and force me to eat more which of course didn’t work. The nurses would tell me that if I only ate a very small amount, it would be helping and try not to worry about it, that it would improve over time. The more I stress about it the worse it would be, so I tried not to worry, as it happens I did need to be NG tube fed eventually, but the nurses were always calm so they helped in many ways over the food issue. Of course ,they were right and my appetite eventually returned with a vengeance.

They cleaned and packed my wounds daily, gently and caring. They washed me and changed my soiled clothes, never making me feel like I was to blame.

They spent time with me, time they didn’t really have.

Considering their job work load and the type of ward they work on ( all poo and bowels) they are angels. They care for some of the most ill patients as their chosen field,  in colorectal, they have to be a special person to choose that calling.

From the healthcare workers to the sisters, you are one in a million.

You are never “Just a nurse”

 

3rd surgery done, what next?

Dressed in my sexy gown and Teddy socks I am ready and waiting to have my surgery for persistent perineal sinus and exploration.

I nervously walk to the pre theatre room to have my anaesthetic, pillow tucked under my arm ( we are told to take the pillow with us from the ward.) There are a few people in there, my anaesthetist included. I have seen her already when she went through the choices I have with pain relief. I feel quite calm really, must be getting used to this.

My cannula goes in, oops missed, I will get a bruise. In it goes again, this time ok. ” Just giving you something to relax you” she says, it works really well and I feel pleasantly drunk. I tell them so, I then get the oxygen mask and don’t panic at all.

 

When I wake up I don’t feel any pain at all, just a bit of a sore throat. A nurse is sat beside me all the time in recovery. I go off to the ward to recover some more. I remember being told that my packing in the wound will dissolve and the nurse at the GP should just change the dry dressing.

I didn’t know that this would cause me so much stress. I go to see the nurse at the GPs after I am discharged and she seems to have never heard of dissolvable packing and that it usually needs repacking daily. She phones the ward but no one there seems to know the answer to what I had inside the wound. We decide that I would keep trying the surgeons secretary and she will just change the dry dressing as told on the notes. I wasn’t told much at the time and didn’t have a visit from the surgeon letting me know anything. I have a letter that states I will likely need further definitive surgery and he will speak to the plastic surgeons.

 

This is all I have so I ring around to try and find out if I need repacking or not, I get tearful after being told to ring back on Sunday when my notes might be on the system as they have gone to coding. I resign myself to this and worry about the future surgery, I know that is not going to be an easy surgery as it will probably involved mutilation of my buttocks to sort out a flap. ( This had been discussed previously ) If I thought my body image was wrecked with a stoma, then I ain’t seen nothing yet.

The journey from beginning to end is not over yet as I had hoped , but I will carry on in the usual manner and take it as it comes.

Leave my supplies alone

 

I just have to vent my frustration at the messing about of my stoma supplies my NAMS, the Nottingham Appliance Management service. They have obviously been told to keep everyones supplies to the cheapest and to the minimum.

I understand that some supplies are dearer than others and I am happy to change to a cheaper product ( f I am consulted first ). BUT DO NOT REMOVE ONE ALTOGETHER. This is stressful and I am unhappy abut it. I rang to order my supplies this morning to be told my barrier spray which I have had since surgery and need as I have a fistula at the base of my stoma and an allergy to a lot of plasters and some base plates. I was told that it was no longer on my prescription and if I wanted it back on, I needed my stoma nurse to email them with the reason.

HAVE YOU EVER HAD A STOMA ? HAVE YOU EVER HAD TO PUT ON A POUCH THAT STICKS TO YOUR SKIN EVERY DAY FOREVER? whoever decides what we can and can’t have needs to be on our stoma forums to see what a mess our skin can get into if we don’t look after it.  If it ends up  that I cannot have it anymore I will be coming to you to sort my skin out.

I know this way of ordering will be happening all over the country eventually and what is more annoying is the fact that it is one stoma supply company that got the contract and they then try and push their products on to you.

FITTLEWORTH PROMISE ON THEIR WEBSITE.

“We promise to deliver on time, wherever and whenever you need products, ensuring you always get the bet possible service. We will never change your products without first discussing this with you and your healthcare professional, meaning you’ll receive products and accessories to meet your needs, everytime you order.”

 This didn’t happen to me, and it hasn’t previously , when I rang to order my usual adhesive remover spray when they just said it wasn’t available anymore !!!! The company I use for that spray was not very happy at all.

I get that the NHS has to be careful with money now, and I am happy to be asked to try a different brand, but to deny altogether is totally unacceptable.
Read the label , it says protect the skin, not heals the skin after the fact.
NAMS say we can only have remover spray if your skin is affected, what they fail to realise it it’s the barrier spray that stops the skin getting sore, you have it totally wrong NAMS.

 

 

Surgery next week eek eek

Surgery for the perineal sinus is nearly here. Am slightly apprehensive but more excited to get it done. It has been such a long wait ( over a year) that I can hardly remember using knickers without having to use pads. I will then have a month before I go away with the girl friends. I know these sinus tracts can come back and I shall just have to be super confident that mine won’t,  I don’t relish the flap surgery but will still have that over the leaking any day of the week. The surgeon will open up the proctectomy scar and perform a sinus excision and will also explore the area for other issues that may be there, such as suspected fistula and also a cyst, the cyst showed up on the MRI, I will then be sewn shut again as before.

I had my pre op last week which seemed to go ok, they checked my heart and lungs, and asked lots of questions then did a blood test, which I haven’t heard anything so assume it was ok. I am a born worrier though and have had a cough and allergy symptoms for months, but the GP assures me it’s chronic sinusitis so I will have to stop thinking I have every other disease known to man. Fingers crossed I don’t get cancelled.

I have been on a diet and resumed low level keep fit ( 10 minutes most days on a rower, I know its not much but it is something lol) I haven’t had chocolate, cakes etc for ages and cannot quite believe it as I am a known chocaholic and lazy bugger. I am hoping it will help me survive general anaesthetic ( I am also a tiny bit hypochondriac when it comes to being put to sleep ).

Not looking forward to getting up at the crack of dawn either, there for 7am ?????.

I am an inpatient but unsure how long for , but hoping it is ward E14 because they are lovely , and know me from my long stay previously so will be great to see them, then it’s home to recover ( on my side 😉  )

Not all stomas look the same- not all scars are the same-not all stories are the same.

WARNING PHOTOS OF SCARS, STOMAS, AND WOUNDS

 

I decided to ask my lovely stoma people if anyone would be willing to show their stomas or reversal/ surgery scars on a blog page, so that I could show that no two stomas are the same and that not all scars are the same either. Many people who have had this type of surgery worry that something is wrong when they see a picture of a stoma, and theirs is not the same.

I felt the same when I was shown a booklet the day before surgery that showed a cute little rosebud stoma on a perfectly clear tummy. This was one of the images.

In reality it is nothing like this. There may be a few lucky people with one similar but I have yet to meet one. The nearest I have come across and I might say, very jealous of, is this one…

How neat is that? unfortunately for this lovely lady, she eventually had to have a different kind of stoma, a loop ileostomy which is a “Demon” she said. Her scar healed well.

This lady had an original ileostomy that was very sore as it dipped into the skin, but had a new one placed which is much better. One that dips or is flush with the skin can cause major skin irritation and is very difficult to treat.

This selection was from someone who had a bowel resection in the beginning, theses are the scars, then a stoma. Her scar healed really well.

This following image is of a stoma, but also a fistula where they were not able to close the incision. This person will be having surgery in April to close the fistula and have a reversal , so no more stoma.

The following selection is from a woman’s first stoma which was a loop ileostomy. When this was taken down it was by the drawstring method and then the resulting scar which I think is very neat. The patient then had a j pouch but eventually that failed, so she had a new ileostomy which was very recessed and eventually was taken down again and the j pouch revised.

A stoma now, that has a scar next to it from repeated peristomal abscess / ulcer. It just goes to show that not all scars are the same.

Again a wound that is dressed, caused by an abscess due to hidradentis supparativa ( I had never heard of it either, its an auto immune disease that causes abscesses mainly on and under the breasts, under arm and groin ). With scar running down the middle from ileo surgery.

When they did the barbie butt surgery with this next patient they opened up the original abdomen scar.

The following few pictures are of an end ileostomy and a scar from a mucus fistula on the right . ( where the end of the rectum that has been kept and bought through the abdomen so that the mucus can be collected into a smaller pouch whilst it heals.) The rectum still produces mucus fluids even though it isn’t connected to anything.

A Crohns patient had a temporary ileostomy formed and a loop colostomy made permanent. this a scar that is only three weeks old.

All these lovely people were happy to help me raise awareness of all things stoma, and are very brave with their stories. For most of them, this has been a difficult time with many hurdles, but they have all come through in the end.

Thank you to each one of you who were kind enough to share their surgeries with us.

 

 

 

Still waiting………….What has happened to our NHS?

 

Ok, so over a year ago I had my bottom removed, my rectum and anus to be exact, and sewn shut. I thought ” Great I can start to recover and get on with my life”, how wrong was I.

A month or so later I noticed some fluid coming out of the wound. I got my poor husband to take a look ( he gets all the good jobs) and low and behold I have a neat little hole. I went to see my GP who took a swab and said I had an infection. I was given antibiotics and things improved for about three days. It came back with a vengeance. I was due to see my surgeon anyway and he said it was a sinus tract. He wanted to leave it for a bit as they can sometimes heal themselves. A few months later I was still in distress with the fluid and pus coming out so my surgeon said he would do an MRI to see the wound and how the sinus was situated inside. I again has to wait a few months for the MRI and again to see the surgeon for the results.

The result was that the sinus seemed to have a cyst at the top near the bottom of my spine and he wasn’t sure if it was connected to the sinus. He needed to ask some colleagues opinion and get back to me. The surgery would either be a simple laying open of the sinus tract which can sometimes return though, or a bigger operation to fill in the dead space left in my pelvis which is causing the leakage and some sort of flap surgery where a plastic surgeon would be involved.

I waited more weeks and rang a few times for an update. Eventually the secretary said he wanted to see me in clinic again to discuss. I then had to wait a few months for that appointment which was just over a year later from the proctectomy in which I have this continuous leak with discomfort and often leakage through clothes. It has been a complete nightmare especially when I am out of the house either socialising or at work. I have leaked bloody fluid at a party and my wonderful friends had to strip me in the toilet and rinse my clothes and dry it under a hand dryer. I was close to going home but didn’t. I leaked at a restaurant on holiday in Spain and leaked through my shorts, and again needed help to tidy myself up. This is all with panty liners on too. What is going on here? because I am now a minor surgery in comparison I am deemed well enough to suffer. I now sometimes wear “nappy” pants which is demoralising enough. I get through lots of panty liners which is costing me money as I have not been offered an alternative.

Yes this is a moaning blog post, I feel I have to moan to keep sane. People need to see what is happening to their neighbours, friends and family.

I don’t blame the NHS per say, I blame the government for allowing this to happen. My surgeon is so busy that he is back logged with surgeries. The 18 week NHS deadline is a farce. What happens when you are not seen within the deadline ? nothing at all. I can’t afford to be off work because I need those weeks to recover from surgery. I pick up every bug going because I have the sinus and it is tiring. I have very low Vitamin D and borderline iron deficiency, which I am convinced will improve once I am done with surgeries.

I feel left in limbo for a year with no date yet for my surgery, I am struggling to cope with it all now and can’t plan my life. I have made the mistake of believing the NHS dateline and booked an paid for a holiday with my friends in plenty of time to recover, or so I thought….. alas it looks like I might not make the holiday after all. I can see my beloved NHS taking a turn for the worse this time, and it truly breaks my heart.

I was in this predicament in the first place because there were no beds, and I was pushed to one side. It isn’t just me, it is many people playing the waiting game………..and that game is in extra time.

Notts and Derby Ileostomy and Internal Pouch Association

 

Exciting times ahead.

I have joined the committee of the Notts & Derby Ileostomy Association. It is something that I have fancied doing for a few months now, I want to be able to help others by either helping fundraising of just be able to chat to new ostomates. The funny thing is I am now the young IA rep ( I know right? I must be the oldest Young IA rep ever). We meet every couple of months for a meal and a chat, courtesy of Helen who is our local Salts healthcare rep. ( Salts is a stoma appliance supplier among other healthcare things) we have a great evening checking out different pub foods and a glass of wine or beverage of your choice, in and around the Nottinghamshire area.

Everyone is lovely and were very welcoming at my first meeting. It was also agreed for me to take on the social media aspect, which I love anyway so it seemed the natural choice for me to offer.

The Notts & Derby branch also has regular meet ups for coffee and cake so if you are from these areas and would like to come along please have a look at our website for more information.  NOTTS AND DERBY IA

If you have twitter please follow @NottsDerbyIA and show your wonderful support.

We have a facebook page for young IA so please come and find us there at Young IA Notts and Derby.

You can join the association if you have an ileostomy or an internal pouch, but we also welcome anyone with any type of stoma, family members, friends and carers also welcome.

We joined in when Salts healthcare had a presentation of their new Confidence Be bags too, along with Colostomy UK. This was at an invitation event in Nottingham. I have decided to trial the confidence Be bags and so far they seem to work really well with some great new benefits.

Our AGM was well attended and we had lots of stoma suppliers present. Our new president, Mr Abercrombie,  gave a very informative speech about the approach to surgery being carried across the UK  – GIRFT ” Getting it right first time”, and the variations in patient care across those hospitals. It means that hopefully in the future, all patients from all hospitals will get the same high level of care no matter where you live. Which can only be a good thing.

If anyone would like more information about the Notts & Derby IA then please message me and I will be glad to help.