Well I must say this is very intriguing, is it something I would consider? possibly. It feels very futuristicky ( is that a word?) but as my husband says, if you lost a leg you wouldn’t think twice about using a prosthetic. Same with glass eyes etc… my only thoughts are the issues that those women had with the mesh for prolapsed bladders etc and the pain and complications they experienced, but this was made from polypropylene and the TIES® is titanium.
It is still in early stages, but not that early, I wrote to Ostomycure who own TIES® and they wrote back with some information that they are happy for me to share. It is not available for sale as yet but it’s quite exciting.
“TIES Solution has received the CE Mark in June 2016. We are planning to look for approval in Canada and Australia in the near future and as well to submit TIES for FDA approval in the near future but this is going to take at least 24-36 months.
We are implementing an additional clinical trial in hospitals in Sweden and the UK. The study will be performed byDrDavid James in Leeds andDrEd Westcott at St Thomas’ in London.
The lid has to be changed every week. We’ll post the added centers on our website as they commit.
Please find attached pictures from an article that gives more information on TIES. Please also visit our websitewww.ostomycure.com. We shall post regularly news, articles and product information.”
Regarding your questions:
1. TIES has received the CE mark which means it has successfully met the regulatory safety requirement regarding class IIb medical devices including clinical testing in human beings.
2. We are developing a special lid with a hatch that clips onto the device’s external part without touching the skin. A clip-on plate that also does not touch the skin allows the fixation of a conventional single use bag for the drainage of the waste. After drainage, the plate is removed (and can be re-used). The hatch is cleaned and closed until the next time for drainage. It can also be worn during the night if so wished. The lid protrudes about 15mm above the skin.
3. The concept is all about providing a continent ileostomy that eliminates the need of conventional skin glued bags.
4. There is no cramping or discomfort. When it is time to drain the waste, the patient “feels” it, similarly when one still has a physiological digestive system (colon, rectum).
5. In the first 6 weeks the patient needs to wear the bag as usual to allow the tissue to grow into the titanium device. After that time the lid can be used. The number of times the patient needs to go to the toilet diminishes over time when the intestine above the device tends to enlarge slowly to create a natural “pouch”. But the number of times depends largely on the length of the remaining intestine, the diet and the amount of food ingested.
6. There is no erosion or excavation since the patients are not in an inflammatory situation. In UC and Crohn, once the inflammatory part has been removed and an ileostomy put in place, there should not be any inflammation.
7. Should the device need to be removed, the surgeon will dissect around it and perform a conventional ileostomy as it was before.
Best regards
Johan Järte MD Medical Director
I still have more questions but they can be answered as needed. Like the urge thing and what you do to empty. I can see from the above photos that you attach a bag when needed but then what? does it just seep out ? do we kind of strain like with an anus? or does the act of opening it trigger evacuation?
As I am googler, I found the care manual that you get following the surgery. It seems you bend slightly forward to drain the internal pouch (that will eventually form ) it might take a while initially but should get quicker as things heal. Care has to be taken not to knock anything until you are fully healed.
One minute I think it sounds wonderful and I would consider it if given the opportunity, and then another minute I think it sounds very scary and robocop like. I also wonder if you can see the cap bit more under clothes than the actual bags we have now, definitely through tight clothes I would think.
I have just come back from an amazing cruise with my husband ( and Tomas). I know you may be thinking ‘ And?”, well what I really want to say is what went well with a stoma and what didn’t, so that others will know what to expect. I suppose I am writing a bit of a travel blog with some stoma bits in between, and yes it was amazing and wonderful so I apologise now if you are jealous in any way. 😉
Customs wasn’t an issue at all, we flew from Gatwick this time and they didn’t have the booths to walk into, so I didn’t bleep going through the ordinary checks, in fact my husband did, so he needed the frisking and I didn’t have to say anything to them going through.
I was so brave I didn’t keep my sprays and adhesive remover on me at all, just in the main case in the hold, I felt confident with my stoma bag .I know, it’s madness. My fellow ostomates will understand why this was Russian roulette. It was fine though so all good 🙂 usually I will have a clear bag with a few essentials in and that is usually enough. Not sure why one would need an extra clear bag except if you take your makeup etc in your hand luggage too. I just put that in the main case.
The ship was amazing, it was a Thompson (TUI ) and the cruise was called ” Highlights of the mediterranean”. We were late booking so didn’t get the outside cabin with windows but we were more than impressed with it all the same. You still have to go through their own customs and check in and out off the ship. We were due to dock at Corsica, Italy ( Rome) then Florence or Pisa, then St Raphael ( for Monaco/ St Tropez), Barcelona and back to Palma.
The food and drink didn’t cause an issue with Tomas either but I was careful what I picked to eat, there was such a variety it would be impossible not to find anything suitable. I do sometimes get random watery output but never really find the cause, and it seems to right itself, this happened once on the ship and I just had to make more regular trips to the toilet. ( Info on the toilet facilities to come)
My only issue which was annoying is that I liked to wear a dress in the evening which are body hugging up to a point, so I tried my support band. It helps to hide the fact that I have a stoma but I worry that it squashes it all too much. I was right to worry, When we went back to the cabin afterwards and I undressed, I had pancaked and my base plate had lifted up causing a leak. As luck would have it, it didn’t go through to my band or my clothes, it just meant a nuisance bag change late at night. This is one aspect of a stoma that irritates me and makes we want to be ” normal” again. The fact that I have to check my clothes at all angles before I feel confident to go out the door, and I don’t really have anything that keeps me in place but isn’t too tight, is another. I do use an intimate wrap under my dresses which helps a bit, but it isn’t deep enough to cover the whole bag, so I either stick out slightly at the top or the bottom bit where I empty digs into the top of my leg.
Ok, the toilets…… they are like aeroplane and train toilets, and by that I mean that anything on the front of the bowl doesn’t flush away properly if at all, so it took a while to sort out each time to leave everything tidy for the next person. Not so good in the shared toilets on deck. The actual public toilet rooms in the ship, and in Italy Spain and France were good in all other respects, far better and cleaner than any we have here in England. The disabled toilets are all amazing even the one at the airport in Palma, I think we have to up our game here, ours are invariably disgusting and need inspecting before we dare sit on them. It is best to make sure some loo roll is stuck to the front to empty onto first but even then it doesn’t always flush there at all, but at least you could move it down a bit lol ( sorry too much information for some).
Usually on a beach I am happy to have Tomas’s cover out on show but on the ship sunbathing I didn’t feel as comfortable, there was no reason for this, but my thoughts were that these folks will see me all the time I am on here, but on the beaches they don’t know me and probably won’t see me again, not sure why I felt I might be judged, it’s just how I felt. One day it was quite empty when we got back from shore so we had nearly a whole deck to ourselves to use the sun lounges, so I braved it then and it felt good. Only a handful of people went by and if they did glance I didn’t notice. Normally I am very open about it all but I just felt slightly more vulnerable on there.
I did a bit of a pose when no one was around 🙂
Finding toilets on land could be difficult unless you were happy to buy a coffee or two, although after the fact I did see some public ones about. One cafe in Florence had an agreement to let cruise ship customers use their toilets if they had their cruise sticker on, which was good except I think they had an agreement with all cruise liners because the queue trailed outside the shop.
Back on the ship…
The staff on board couldn’t do enough for you and were very polite and treated you like kings and queens, it was lovely. They tidied the cabins 3 times a day, the end of the day they put chocolates on the pillows and turned down the beds. The towel art was amazing too.
I worry every time I go to bed in a hotel/ friends/holiday though. I don’t leak very often but you never know. I would be mortified, never say never.
There were many bars and restaurants, all excellent, with the all inclusive drinks being good brand names.( at least you know what you are getting then) You could pay for a premium package but there is no point really. Anything extra that you wanted either from the onboard shops or excursions etc had to be paid onto your Thompson card at reception first, or you could leave your bank card details prior to setting sail. We just topped up our card at reception if we wanted to spend anything extra.
It was great to wake up to a new place every day, and for those worried about sea sickness, it was fine most of the time. One day it was slightly swaying when you stood up and it took me a little while to get used to it, it made me feel slightly off. I was told this was a rare occurrence. Even though it carried on through the night, it didn’t bother me after that and it only happened once that badly. Don’t let it put you off if you are thinking of a cruise, it was a small part of a large great time.
FLORENCE
Beautiful buildings and churches.
ROME- BASILICA AND THE ENTRY TO SISTINE CHAPEL ( you can’t take photos actually inside the chapel, and you have to have your shoulders covered in both places of worship). This was my favourite bit and I was really looking forward to it, I was not disappointed.
All I can say is, don’t let travelling with a stoma stop you, yes there are challenges but they can be overcome, and to stop going places just to feel safe and cocooned means you are not getting the best from your one life. There are some considerations, but you know your own stoma and body so just take the time beforehand to get things organised and make sure you take everything you need. I can guarantee if you are not sure whether to take an item or not, take it because you’ll wish you had.
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.
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.
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 )
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.
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.
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.
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
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