More than one autoimmune disease

 

The list goes on

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

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

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

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

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

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

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

 

 

 

What is a perineal sinus tract exactly ?

SURGERY DATE FOR WIDE EXCISION AND GLUTEUS MAXIMUS FLAP 27TH SEPTEMBER 2018

 

Because I have now been pencilled in for my surgery date I thought I would explain what it is I actually have, and what they are going to do about it. I have mentioned that I have this complication but never went into real depth. At the end there is a youtube video of the same surgery i will be having, so if you are not too grossed out, take a look.

After having the proctectomy I stupidly thought that would be it for surgery and I could then get on with my life. I had been sewn shut ,so what could possibly go wrong ? Well there were plenty of things as it turns out. I noticed after about a month that there was fluid coming out from that area on to my underwear. It was watery and yellowish. I went to my GP who took a swab and it was an infection that needed antibiotics. I went on those for a few weeks but it didn’t really do anything.

Off I went to see my surgeon when I could get in ( which wasn’t very quickly). This had started in about December 2016, and I think it was roughly February at this point. He put me on my side and prodded and probed and said ” You have a perineal sinus tract”. Apparently it can happen especially after pelvic sepsis, and because I had had a lot of complications pre proctectomy with rectal stump blowout, I was the lucky one.

Because I had the large bowel and rectal stump removed, I developed a hole that leaked whatever was forming in the cavity space that was left. It is a long fibrous blind end tract covered in infected granulation tissue with an external opening. They can vary in size, and my surgeon wanted to do an MRI scan to see how big it is and how it affects my perineal area.

Now I had to wait for that scan appointment to come through. It took quite a few weeks, then I had to wait again for an appointment with my surgeon for the results, which took quite a few weeks too. At the appointment he said that there was a cyst at the top of the tract and he couldn’t be sure if the two were connected or not. He needed to speak to the radiologist to discuss and he would get back to me. It could mean a larger operation for a flap surgery or it could mean a smaller operation to get rid of the sinus.

I again waited weeks for this, and then had to wait more weeks to see the surgeon again. We were now in to 2018, over a year since the original appointment, and all this time I have a constant leak which often hurt to sit and made that area sore. I could almost feel it filling up and the pressure was painful then it would settle into a leak, then the cycle would start again. I often leaked through clothes even wearing pads, and that would stop me staying out , I would just go home. I have fabulous friends and family who would sometimes get me into the toilets and rinse and dry clothes with the dryers.

My surgeon decided to do the smaller surgery ( this still involved general anaesthetic) and try and excise the sinus. I got that surgery in May and I was left with a much bigger leaking hole, with not much information to go with it. I managed to get an appointment with my surgeon and he said that the sinus tract was too big to cure with simple measures and I have a large deep cavity close to my skin. I need the bigger flap surgery. I would need to see plastic surgery as they would help with the surgery.

I didn’t wait that long to see the them and he said I would either need a muscle from my inner thigh or the buttock muscle to put into the cavity to help heal, he thinks it is more likely the latter one as the cavity is deep and that muscle is larger ( thanks mate). I will be in hospital for about a week to make sure it has all taken well. I asked what if it didn’t work ? He said I had the other one spare. Let’s hope it works then. I am likely to be off for 6-8 weeks. I am very scared of this one, I know it will be uncomfortable to say the least, and although it is my only real hope of getting rid of the sinus, it could fail and isn’t guaranteed. I think about how mutilated I might feel and that I will look like Frankenstein’s monster before I am finished. I know that I need this, but really thought I was done with all this surgery malarkey.

It’s quite amazing how you and your body cope with all these ups and downs, it is so  mentally draining and so into the unknown, you don’t know what the outcomes are going to be, and whether you will be ” cured “. You worry about the pain and recovery, you worry about work, you worry about body image. But in the end you have no choice, I don’t want to live with a constant leak , fatigue and a low immune system as my body tries to fight the sinus damage and fails to make a difference. Antibiotics don’t help in this situation either, so no matter what infection swabs show, they won’t eradicate it. It has to be surgery.

I HAVE DECIDED TO SHOW YOU THIS YOUTUBE VIDEO BY THE COLORECTAL JOURNAL, OF THE TYPE OF SURGERY I WILL BE HAVING AND HOW IBD SURGERY CAN AFFECT YOU IN WAYS YOU DON’T REALISE.  I OFTEN THINK HOW WHAT SEEMS LIKE A SMALL HOLE CAN CAUSE SUCH A BIG OPERATION. IT IS FAIRLY GRUESOME, YOU HAVE BEEN WARNED, BUT ALSO VERY INTERESTING AND MUCH MORE INTRICATE THAN OPENING ME UP AND STUFFING MUSCLE INTO THE SPACE THEN SEWING ME BACK UP AGAIN.

Bend over……….

I had a humiliating experience the other day, and I think that although I can laugh about it now, not many people would be very happy with what happened.

I am a fairly strong person when it comes to showing body parts, and most IBD-ers know what it is like to have their lower body on show to GPs, consultants and the like.

I had an appointment with the plastic surgeon to discuss where he will take muscle from to fill the dead space where the perineal sinus is. All was well, he had a look and we discussed options, then the fun part begins. ” Before you go I would like a photograph of the wound, if you nip along the corridor there is the medical photography dept, take this form with you”.

Me and mum went there to find the chap was out the office just for another five minutes. We waited and he arrived, firstly I was slightly shocked that he wasn’t in a white coat or medical looking at all. I went along with it though and turned down a chaperone thinking that inside the room there would be a clinic setting with a clinic bed and blanket to cover bits that didn’t need to be in the shot.

How wrong I was, inside was a fairly large photography studio exactly like any other, those umbrella things and bold lighting, with a black large cloth at the back. NO BED, just a couple of stools/chairs. He studied the form and said ” Not sure how we are going to do this”.

” Maybe stand on that cross” I felt a bit like a deer in headlights, not sure who was more embarrassed.

I had to stand in the middle of it all, drop my jeans and pants ( take out my dressing from between my cheeks ) bend over and open my cheeks with my hands………. I know……… I was pretty mortified. To top if off he bent down with his camera to take the shots. ” Just a couple more”. It felt like a porn shoot.

Now I may jest telling the story, but OMG. I can’t be the only one who has a wound in a dodgy place can I? it was as if he had never come across this situation before. I didn’t dare say no because my plastic surgeon had requested it and I didn’t want to delay surgery.

Would you have done it to??Or maybe you already have? I didn’t even know there was such a dept in the hospital.

 

” I don’t feel very well today” dodgy experience at hospital

 

WARNING CONTAINS CLOSE VIDEOS OF TOMAS

 

Sorry it’s been a while since my last post, I do appreciate my followers and readers. This one is a bit of a rant and slightly longer than usual.

If it’s not one thing, it seems to be another lately. I always seem to feel ill and I am getting totally fed up with it.

Yes my surgery saved my life and I am very grateful, but I know that I will never be free from the constraints of stoma life. Totally wearing whatever I want without worry of seeing the bag through the clothes. Eating whatever I want without worrying if I have chewed enough or eaten something that will block the stoma. Not having an off day when I know that I have eaten something that has caused nausea and very watery output and pain.

I have been waiting a year and a half for a definitive surgery to close the perineal sinus tract in my proctectomy wound. Why do we have to wait so long between appointments? why in any other situation would that be ok? I have a life on hold, I am trying to hold down a job, I am trying to plan things in my life that I can’t guarantee, holidays, special occasions. It is my son’s graduation this week and I feel unwell. I have been waiting for this day for three years with utter excitement and now I am worried that I won’t feel up to scratch.

Do I have to just concede that this is my life now? Is it enough to have major surgery that saves your life but also changes it? Why do I feel like this? do all ostomates feel like this? Is it normal for me to be a bit off colour in some form or other a lot of the time?

 

I STARTED TO WRITE THE ABOVE POST ABOUT A WEEK AGO but I didn’t have time to finish it  because I became more unwell. I was very nauseous with a pain behind the stoma like trapped gas, that would come in waves and often wake me in the night . On changing my bag I notices that the stoma wasn’t moving at all which is not right. The only time it moved was when the trapped air that had built just above it, and got very uncomfortable and nauseating, released along with very watery poo. Then the stoma would contract a bit and go back to not moving at all. I was very concerned that this was not normal for me and I spoke to my GP and because of the nausea and pain behind stoma, he would refer me to the assessment unit at hospital.

I was struggling to drink enough because of the nausea so was very dehydrated and weak. Anything made me wretch and gag. They checked my blood pressure and took blood, then they took an x ray.

The wait was horrific. We got there at 11am and I was still waiting for the doctor to see me with the results at 6.30pm. All the while feeling ill and tired and sitting in a chair.

The doctor eventually came, almost discussed the findings in the waiting area with me and another patient present, then changed his mind and took me into a room.

” I think you have a partial obstruction and you need fluids so I am going to admit you” I was pleased something was being done and I was asked to sit back outside in the waiting area while they find me a bed on the ward next door. I would be given some intravenous fluids overnight then see how I am in the morning and  whether the problem had resolved itself.

A nurse then came to check my observations again ” You need to drink more, you’re blood pressure is very low” I explained that I was trying but very nauseous so was struggling. ” Have you passed urine in the last 6 hours?” No I said.

An hour and a half later, my bed was ready. I was not given fluids until then  ( after four painful attempts at putting a cannula in ) so I assumed they were not  too worried.

 

 

I know they are busy with very poorly people, but I must say there were only a handful of patients all day, and I overheard a nurse say how quiet it was,  what would the wait be like when full? There were invariably about four people of various uniforms behind the reception, chatting and eating. Throughout the day I tried to catch their eye to ask the progress, but never managed it. I ended up going to them. I do understand that it was the doctors I was waiting for and although the wait was horrific, that didn’t bother me as much as other things.

This wasn’t my best experience with the NHS and I am by no means saying I have not had great care in the past, because I have had amazing care by truly caring people, but I have also had shockingly bad care too. Why so different I wonder???

The doctor first examined me by sitting me on the bed and pulling my stoma bag half off. I yelped and said I usually use spray. At the same time my output was very watery and it went everywhere. He flapped about apologising, and mopped up a bit. ( It was on my trousers and pants at this point, nothing was going to get rid of it because it was like brown water ).

A very quick look and a ” It looks a nice pink colour” and it was done. I was left to sort myself out. I told him that my stoma which I have lived with for two years day in and day out, was not behaving in the usual manner. I wasn’t someone who had run to A&E every time my stoma had a wobble, but I knew this was different for me. My stoma wasn’t moving at all, I was very very nauseous and had pain behind the stoma, and I told him.

” It moves inside pushing the contents through that’s why, the movement is before it comes out the stoma” he answered. WHAT?

I could hardly say ” Excuse me but you are very wrong, a stoma will wriggle and move continuously with the rest of the bowel, I see mine all the time and it moves ALL the time” He was a doctor and I was not, so I let it go. It also wasn’t as moist as usual ( sorry, I know that is many folks worst word ever made 😉  )

 

 

On the ward I relaxed a bit and was grateful for a bed. I got chatting to a lovely lady opposite, and eventually she needed an NG tube. I hate them. She definitely hated them. I could hear her saying stop it hurts, I can’t do this etc, and they said have a drink of water. She was gagging and spluttering and it made me join in. I felt so sorry for her. They stopped after a while and left her without the NG tube. the four of us ( patients) agreed they should offer sedation, but they can’t. ( I still don’t understand why not, as I had it put in when asleep having surgery). They then kept reiterating to her that she had refused it and did she understand the consequences. Poor bugger she didn’t refuse it, she just couldn’t bear it.

I then had two student nurses either side of me saying how lazy other nurses were and they shouldn’t need to be told what to do, they should know their jobs blah blah blah, going on and on.  Not great to hear, but one of them apologised for talking about it over me afterwards.

But again had two other wonderful nurses who listened and cared, and I thank them for that. They spent time with me and other patients, and were kind.

I was allowed home the next afternoon, still not with a 100% diagnosis, but felt a bit better. The consultant in the morning  ( upper gastro and liver )was very abrupt and didn’t hang around long enough to ask much. Stoma still not active apart from air forcing poo out but I could eat and the fluids had helped a lot. I will try and manage at home if it gets worse or happens again, as I am not confident unless I see a colorectal or stoma doctor. Obviously if I have absolutely no output, and vomiting profusely, I will.

Sorry for the moan, I have a bee in my bonnet at the moment. ( BTW I made it to son’s graduation although didn’t feel well enough to celebrate afterwards watching England, perhaps for the best as it happens )

One proud mummy ( he got a first : )   )

 

 

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.