Merry Christmas to all my followers

I would like to thank all my followers and readers a very merry Christmas and a happy new year.

I am so grateful to you all for reading and commenting on my posts and I hope you will stay for 2019 too ;). I couldn’t do it without you.

The fact that you have read and liked my musings has helped me to come to terms with my new life. It has been difficult, funny, sad, scary, lovely, but through having a stoma I have met some wonderful people, and chatted via message to folk who know what it is like to live with a stoma.

THANK YOU THANK YOU THANK YOU THANK YOU

 

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

 

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”

 

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

(Opinions expressed and writings and content are solely my own and do not express the views or opinions of the IA)

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.

Barium meal and enema

 

The dreaded Barium…………..

When I first started with ulcerative colitis I had to have many tests, and I remember having both of these. I had these as an inpatient but you may get a referral to go in for the test. This can be for all reasons from the throat down to the large bowel.

Let’s start with Barium meal. ( swallow, meal, follow through) It isn’t quite a meal but a thick revolting drink that you need to take and as the liquid travels through your digestive tract, intermittent pictures / x rays are taken to see if there are any strictures or abnormalities. I think I had to drink three drinks, two were just like paint and if you were feeling unwell to start with, you definitely would after taking them. The other one was a slightly different taste, and I think it was a mixture that would produce gas so that the bowel etc can be seen clearly, this was all about twenty years ago so it may be different now. It seemed to take a while because they didn’t take pictures for at least 20 mins to allow the mixture to travel down. When it comes out the other end it lays on the bottom of the toilet as it is that dense, it takes ages to go. You can’t eat for about six hours before this procedure. You may be asked to move into different positions to get the best images.

You may also need a muscle relaxant which is an injection into an already inserted cannula.

Barium enema next, ( lower GI exam ) good fun not. You have to have bowel prep for this one as it is for the large bowel only. You are then strapped to a bed and they insert a tube into your bottom ( I think they taped it your buttocks to stop you pushing it out). They then filled your large bowel with the Barium liquid, then the fun part. They give you an injection to relax your bowels then you are tipped all different ways on the bed to get the liquid all over. Very strange feeling not to mention the absolute urge to poo. I remember that being the worst bit, not being able to expel the tube and the stuff. You could feel the Barium going in too, anyone who has had to use the enemas for IBD will know how this feels and how difficult it is to keep in anything that is squirted up there.

When the solution has covered the inside of the colon, most of it is drained out, air is pumped in and x rays are taken. When they have finished, the tube is removed and you think you will poo that stuff all over as soon as you stand up. You don’t of course, and a short while after, you will probably go to the toilet and like the Barium meal, the horrible Barium stuff will linger in the bottom of the toilet for ages. Oh yes, and your poo might be white too.

Good luck

More updates on perineal problems ( bottoms)

 

 

I went to see my surgeon this week about my bottom problems. I am now on the waiting list for further surgery to explore and excise the perineal sinus. He will take a biopsy to see why it bleeds out the sinus when I have my menstrual flow. It will be totally cleaned out and packed with antibiotic gauze like when I had the proctectomy. He is not using a plastic surgeon this time but if it returns he will do the larger operation.

Not sure how I feel about this, it is ok but the chances of it coming back are quite high so am I better off having the larger flap operation now rather than later? who knows? I will just have to see and hope that this clears it up and I can get back to some normality.

I have already signed the consent form so I know it has to be within the 18 week deadline for the NHS I just hope it is sooner than that. Not sure how much longer I can put up with the uncomfortable symptoms. Not to mention the cost of panty liners.

I think people are probably a bit bored with the ” having an operation ” thing when it is your third one in two years, it becomes nothing , but to me it is still a big deal having to go through it again. Because I look ok it is assumed that I am ok, but mentally I am going through a phase again. It must be because the operation is all set, I seem to have a mental wobble and my mind does overtime. I just want it all to be normal down there without worry of leaking and discomfort. I never knew when I had a proctectomy that this could happen, I assumed that when it was taken away, that would be it,  all better. But alas, this is so not the case for a lot of people. It wasn’t until I read about it that it is very common to get wound issues like sinuses and fistulas, and they are notoriously difficult to treat. This is ok but we have to work and live and to keep having time off puts us in the ” always off ill ” bracket, which I do not like being in.  Work are fine about it at the moment, but I am not.

I feel we are left for months while they figure out what to do with the sinus’s , and then wait more months for MRI’s, then wait some more months to see the surgeon again with the result, then wait some more months for the operation. It has now been a year since the proctectomy and just under a year since the sinus developed and I am only just on the list for more surgery. The government need to sort this out, get more money into the NHS because the waiting lists just to get back to see your own surgeon is ridiculous. I am struggling along after two major surgeries that have left me with a complication, and I am the one to suffer because it is not major surgery this time, so therefore not urgent enough to bother with.

The discomfort is tiring and horrible to live with for this length of time. I am being tested for fibromyalgia too as my body just feels so sore all the time, this is something that can develop after big surgeries apparently. My joints feel swollen and achy and I guess I just feel sorry for myself at the moment. This is not a great week.

Sorry that this is a very negative post this time, that is how I am feeling right now.

Next post on these issues will be the surgery itself, watch this space if you would like to know what they do, the recovery process and whether it actually does go away never to return. If fibromyalgia does enter into the equation I will also let you know.

 

 

Colonoscopies

 

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

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

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

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

Talking toilets…an inconvenience

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

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

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

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

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

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

And if anyone has pee’d on it……..

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

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

How about this in Japan?

Toilets for Ostomates

 Necessity of Toilets for Ostomates

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

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

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

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

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

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

 

This just blew me away……..

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

Click here to read the full article

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