I feel things are on the up with spreading the word about stomas. More people are open to their new anatomy and more people are shouting about it.
Thank you to those who took park in my small video to raise awareness.
I feel things are on the up with spreading the word about stomas. More people are open to their new anatomy and more people are shouting about it.
Thank you to those who took park in my small video to raise awareness.
WARNING- This post has surgical wounds.
I have just had a big surgery for a perineal vaginal fistula.The procedure is known as an IGAM flap. Inferior gluteal artery myocutaneous flap reconstruction. I had a wide excision so that my surgeon could clear the fistula and unwanted tissue and repair the vaginal wall, then muscle was taken from my buttock and top of thigh to fill the dead space, where a flap of attached tissue was laid over to cover it, and stitched into place, this ‘ paddle’ as they called it, enabled them to view the wound regularly to make sure the flap was working and no tissue necrosis was forming.
DAY 1- SURGERY DAY- PART 1
I set my alarm for 5am so that I could drink the rest of the pre-op drinks. I didn’t need the alarm. My nerves are just starting again so I watch The Real A&E in the hope that it takes my mind off my problems.
Weird being up and showered by 5am, don’t normally see this side of 7am unless I am going somewhere hot. No bikini where I was going.
Nerves were kicking as we made our way to the ward. I was prepped and ready to go. Usually I walk with my pillow and anti slip socks down to the theatres but this time I was in a brand new theatre further away so got to have a ride on a bed. I was given an epidural for after surgery pain relief, which took a few goes because of my ” Wonky back”, anaesthetists words, as was ” Did you know that this kind of surgery is very painful?”. Thanks for that. The oxygen mask came next, not keen. It reminds me of horrible teeth extraction as a kid with the gas. I can still smell it. After a few stabs in my arm, a vein was suitable and a few minutes later I was asleep.
I remember waking up and being told that surgery was finished and all went according to plan. I wasn’t in pain because of the epidural, and I am one of the lucky ones in that anaesthetic doesn’t affect me badly. I was taken to the ward. I couldn’t see much of the wound yet, I had a drain in the top of my thigh which I thought was a weird place until I saw the actual scar…..
The next day the nurse changed my dressing and I asked if she would take a photo of my scar on the buttock, I unfortunately won’t be showing my actual flap as is it hidden between my butt cheeks, but you can get the idea that it is a rectangular piece of skin and tissue that is stitched there. When I first saw the photo I was a bit shocked at the scar, it was like a great white shark bite is the only thing that came to mind. Although since then I have other pics that show it looking reasonably neat and tidy, and a district nurse has since said that it actually looks good and some that she had seen looked barbaric, so I guess it’s not too bad after all.
First pic is second day, second pic is about 10 days post surgery.
The care was excellent and my surgeon and plastic surgeon came and said they were pleased with the result and were hopeful that this would do the trick with the fistula. I opted to have the epidural removed after only a couple of days because it caused awful itchiness, and my left leg went too numb and they were concerned the epidural had done something. It was all good and the numbness went away ( except at the site of surgery).
I was very surprised how quickly they discharged me, drain came out on day four and that is when they let me go home. I was a bit concerned because the drain site was leaking, and I wasn’t allowed to sit at all for four weeks AND I wasn’t allowed to lie on back OR right side for much the same. This is all well and good but eating was a mess and my left leg was so so achy and painful after a short while. I didn’t get any offer of occupational therapist to see how I would cope with this, and mentally it was dreadful after about 2 days at home.
I have an issue with NHS surgery aftercare, it is more or less none existent as I will explain in my next post. In fact if it wasn’t my surgery and life on the line it would be comical. When you are discharged home even with district nurses ( who can’t tell if surgery is failing or what the fluid coming out of other exits is ( yes this was happening ) then you would think there was a plan to get in touch with someone who does……..
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
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 email@example.com or send me a message on Facebook.
Please click on the links below to get through to the pages.
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.
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”
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.
(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.
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.
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.
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