Welcome to my blog
TOMAS AND I WOULD LIKE TO WISH EVERYONE A HAPPY CHRISTMAS. THANK YOU FOR FOLLOWING OUR STORY SO FAR, ( AND A BIG THANK YOU TO MY SUBSCRIBERS) AND I HOPE YOU ENJOYED IT ENOUGH TO STAY ANOTHER YEAR. I REALLY HOPE THAT 2018 KEEPS MY FELLOW OSTOMATES HEALTHY AND THAT THEIR STOMAS BEHAVE THEMSELVES.
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.
12 DAYS OF SURGERY
On the first day of surgery my surgeon gave to me…. a stoma totally new to me.
On the second day of surgery my surgeon gave to me… 2 invasive tubes, and a stoma totally new to me.
On the third day of surgery my surgeon gave to me..3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the fourth day of surgery my surgeon gave to me….4 toilet runs, 3 sick bowls , 2 invasive tubes and a stoma totally new to me.
On the fifth day of surgery my surgeon gave to me… 5 sore rings…………………4 toilet runs , 3 sick bowls, 2 invasive tubes, and a stoma totally new to me.
On the sixth day of surgery my surgeon gave to me…6 needles stabbing , 5 sore rings………………4 toilet runs, 3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the seventh day of surgery my surgeon gave to me…7 night lights glaring, 6 needles stabbing , 5 sore rings……………….4 toilet runs, 3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the eighth day of surgery my surgeon gave to me….8 nurses wilting , 7 night lights glaring, 6 needles stabbing, 5 sore rings………………4 toilet runs , 3 sick bowls , 2 invasive tubes and a stoma totally new to me.
On the ninth day of surgery a surgeon gave to me…9 doctors frowning, 8 nurses wilting, 7 night lights glaring, 6 needles stabbing, 5 sore rings……………..4 toilet runs , 3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the tenth day of surgery my surgeon gave to me….10 patients puking, 9 doctors frowning, 8 nurses wilting, 7 night lights glaring, 6 needles stabbing, 5 sore rings………….. 4 toilet runs, 3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the eleventh day of surgery my surgeon gave to me…11 latex probings, 10 patients puking, 9 doctors frowning, 8 nurses wilting, 7 night lights glaring, 6 needles stabbing, 5 sore rings…………..4 toilet runs, 3 sick bowls, 2 invasive tubes and a stoma totally new to me.
On the twelfth day of surgery my surgeon gave to me… 12 drip tubes bleeping, 11 latex probings, 10 patients puking, 9 doctors frowning, 8 nurses wilting, 7 night lights glaring, 6 needles stabbing, 5 sore rings…………….. 4 toilet runs, 3 sick bowls , 2 invasive tubes and a stoma totally new to me.
MERRY CHRISTMAS EVERYONE
I AM SO PLEASED THAT RACHEL AGREED TO WRITE A PIECE FOR MY BLOG, RACHEL HAS A UROSTOMY AND AN ILEOSTOMY, BUT WE WOULD LIKE TO FOCUS ON THE UROSTOMY AS THIS STOMA IS DIFFERENT FROM OTHER STOMAS FORMED BY THE BOWEL, AND I WOULD LIKE TO HELP RACHEL RAISE AWARENESS FOR ALL STOMA TYPES.
To access Rachel’s blog -Rocking2stomas-please click here.
UROSTOMY – THE MIDDLE CHILD OF THE STOMA FAMILY
When you hear the word ‘stoma’ or ‘ostomy’ most people instantly think of it in regards to bowel difficulty, usually a ‘colostomy’ or ‘ileostomy’. However, there is one branch of the stoma family that seems to get forgotten about.
This is the humble UROSTOMY also known medically as an ileal conduit, a type of urinary diversion. This is where a small segment of small intestine usually the ileum is used as a conduit for the urine. The ureters are attached to it and the surgeon brings the segment to the surface of the abdomen to create a stoma where the output is collected by a pouch. Now there are different reasons for having a urostomy and not all are due to cancer. Some of these can be birth defects, trauma, interstitial cystitis, fowlers syndrome, overactive bladder, neurological diseases, hospital malpractice and radiation damage. Sometimes there is an assumption not just in the community but also amongst the stoma companies that most urostomates are due to cancer and over a certain age, this is not the case anymore. More and more younger urostomates are coming through and I believe this is due to an increase of neurological diseases and bladder diseases.
As a urostomate and an ileostomate, I can see a huge difference in the level of understanding and awareness. This was one of the main reasons as to why I started my blog ( www.rocking2stomas.co.uk) to try and bring urostomates into the forefront and an online presence. I didn’t want us to be the ‘ forgotten stoma’ not just in the media but also amongst the ostomy community itself. We are in the minority compared to colostomates and ileostomates but are equally important. However, the last year there has been a big push for this awareness and there has definitely been a change. Bloggers are including urostomates in their posts more and companies are doing research and trying to involve us more. This truly warms my heart and will help with urostomates feeling part of the community and not so isolated. We are like the middle child in the stoma family…..quiet, misunderstood and forgotten but now it is time for us to stamp our feet and be counted.
Determined to do something about this, I linked up with the UROSTOMY ASSOCIATION (UA) ( https://urostomyassociation.org.uk) , a charity offering support and information to anybody with a urinary diversion, both before and after surgery. I produced a poster to combat this difference in awraeness levels, with the help of a few friends who, like me, are not afraid to show the world their stoma bags. 24 amazing men and women of all ages sent me their pictures, ROCKING their urostomy bags ! One of the aims of the poster was to highlight the fact that not all stomas are to do with bowel difficulties.
We are BEAUTIFUL, we are BRAVE, we are WARRIORS! But most of all we are SURVIVORS of our individual illnesses!!
CROHNS AND COLITIS AWARENESS WEEK 1-7 DEC
WARNING EXTREME TOILET HUMOUR
There are many occasions when things don’t go to plan with a stoma, it can be a right nuisance but you can laugh about it after, if you can see the funny side.
1. Splashback, we’ve all been there sitting right back on the loo, you pop a piece of loo roll onto the front of the bowl and open the bag. Before you know it the bit of loo roll had slipped and the poo has gotten all down the front of the bowl AND splashed back onto yours truly. You might not even know it’s happened until you catch a glimpse of the underside of your underwear. Either that or it’s all over your thighs. Maybe you have extremely watery output and open the end, find there is some air so give it a squeeze, before you know what has happened its missed the bowl altogether.
2. The placing of the bag. This one happens to me on a regular basis, you clean yourself up get everything organised , cut the base plate to a perfect size peel off the seal and carefully place it over the stoma, you stand back to admire your work … and realise the opening is somewhere facing your other leg. ?
3. The noises, these will only happen in a quiet public place or when you are relaxing quietly watching a good film. People will look but you can tell they are not convinced it was a fart but are not quite sure what it was. You try and muffle the stoma by covering it will anything you have to hand. This seems to work initially but not for long.
4. Back to the loo, when it doesn’t flush properly, usually a public loo who’s water pressure is useless, and the toilet tissue at the front of the bowl trick hasn’t worked. You usually have to wait and try again. What do people think you are doing in there ? they hear rustling about, and the loo flushing but no one comes out.
5. Naughty pesky stomas on change day. They can all misbehave when you are trying to clean them, particularly if you are airing the pest. Just when you think it is safe to leave it alone, wham.. output all over the place and you can’t get tissues quick enough, and once it starts it’s like mount versuvius, trouble is you can’t put the bag on until it settles because it will be all over that too. You shout at it because it makes you feel better, yes I know you do too
6. You are constantly checking it’s still there. Yep your hand creeps up and you check that you are not ready to burst, do you leave it a while longer and risk it or do you decide the risk is too great? it can be a shock to find the bag full when you can’t really feel it filling up.
7. Absentmindedly squishing the contents. ( for non stoma folk, it is very clean and nothing gets out )This one sounds disgusting but is something you just do quickly now and again.. It starts when you are checking the contents, is it still watery? has it thickened up yet ? is it ready to empty? then you end up just squishing it about for a short while. No reason.
8. Smelling a fart and being able to categorically shout ” It is definitely not me”
9. Who else can watch TV , talk to your friends on the phone ( or in person ), go out for a drink, eat, sleep…..all whilst having a poo. The ultimate multitasker.
#MakingTheInvisibleVisible
GO PURPLE FOR CROHNS AND COLITIS AWARENESS WEEK 1-7 DEC 2017
The most usual symptom of ulcerative colitis is diarrhoea, mostly bloody. Bleeding ulcers and pain are another. Extreme tiredness and weight loss can and usually do occur. Crohns disease is very similar but can affect the whole digestive tract, where as colitis affects the large bowel. ( There are other manifestations of both diseases that affect the whole body).
My story starts about 30 yrs ago when I was in my late teens early twenties. I was the usual teen, out most nights managing to get to work the next day. Totally enjoying life. Then wham…..
I had gone out with friends to town and was going to visit my sister in London the following day. Stupidly I had taken my purse that had train tickets, credit cards and photos in, plus extra money for the trip ( I know, complete idiot). I remember going to the bar and feeling for my bag and realising the zip was open and my purse had gone. I was in total shock and didn’t know what to do. I told my friends and we had a look round, went to the toilets, and generally panicked. I went outside and found two policemen, I told them and they said that I was the fourth one that hour. They helped me cancel my cards and advised me to look in the bins around the square. Nothing. These people were going to have fun with my stuff and money. Grrrrrr, I am totally convinced that it started the IBD, yes I might have had it in me but that triggered the reaction. If only those selfish people knew what stealing my purse actually did to me…..
I had to go home ,and we rang our parents for a lift ( I had no money for taxis or even the bus). After a lot of hassle, I still went to London to see my sister. Dad managed to get my money back from the original tickets.
When I was there I started to feel unwell. I got diarrhoea and remember looking in the mirror thinking I looked very dark under my eyes. I came home a few days later and was being sick along with the diarrhoea. I started getting a contraction type pain near my appendix that made me sick. I became very unwell and had to have the doctor to me. He thought I had appendicitis and told me I needed to go to hospital, I was petrified having never been in hospital in my life. My mum and dad were away so my friends took me.
I was taken straight to a surgical ward and the doctor came to talk to us. He put a gloved finger up my bottom ( as you can imagine, I was a young woman and he was quite a dishy doc so I was mortified). They did various other checks and it was decided I didn’t have appendicitis but they were not sure what yet.
Mum and dad were back and spent most of the time at the hospital with me when allowed. I was put on a drip poked and prodded and was really ill. I was being sick with the pain constantly and was threatened with the NG tube if it didn’t stop. I refused and suffered the sickness. Things became worse when I went to the toilet and lots of blood came out. I often didn’t make it to the toilet either, this was awful and I dreaded the pains that made me want to go because I knew I wouldn’t make it. I thought I was dying and the doctors were still unsure what was wrong. My stool samples were so thin and bloody that they couldn’t grow anything from them in the lab. I lost so much weight that I struggled to walk. I was given steroids intravenously along with fluids and needed a daily injection into my tummy to stop blood clots.
One memory was of me trying to get to the toilet quickly with a drip in tow. I got into the cubicle and missed the toilet, there was blood and poo on my nightie and on the floor, I didn’t have a clue what to do, I was attached to the drip so couldn’t take the nightie off. I pulled the emergency cord and a young male nurse knocked on the door. I was so embarrassed I asked if he minded getting a female nurse to help me, he didn’t of course but I felt awful. I had never experienced this kind of feeling before and I didn’t like it at all.
The pain was still there like a contraction and once, I remember lying against my mum and suddenly the pain eased for a bit for the first time in days, I told her that I might have to get some sleep incase it came back, I didn’t dare move and I managed to be comfy for a short while.
After ten days of shear hell, I turned a corner and started to improve. The euphoria was amazing, it was strange after so long feeling very ill to feel well again.
The doctors then came to see me and informed me I had IBD but they weren’t sure if it was crohns or ulcerative colitis. I didn’t get much information and at that point wasn’t put on meds. I came home to recover and after two weeks at home I started again with the pain, sickness and diarrhoea. I was totally upset and didn’t have a clue what was happening to me. I became bed bound once more and the GP came again and told me I needed to go back to hospital. Off we went again and again I was strapped to the drip etc..
Again I was sick and had bloody diarrhoea, and was on the ward for another ten days.
This time I was given some new meds called Olsalazine along with the steroids. I began to improve again and was discharged back to my parents care. I was tapering off the steroids and was ok.
Between times, I had a barium enema and barium meal, now there’s a treat, not.
After a few more weeks those dreaded symptoms again returned. I was totally devastated and was back in the hospital. This time we realised that I was supposed to carry on with the Olsalazine but was never told this so when I had my last one that was given, I didn’t take anymore. As I said earlier I wasn’t really given any idea what to expect with the disease and what the outcome could be in the future. Although this time they gave me information on Crohns and Colitis UK. I decided to join and was so glad I had. I began to understand my disease and what it could mean for me in the future.
After a few years I was diagnosed with Crohns disease so I at least knew what to expect. But strangely this diagnosis was changed to Crohns colitis or indeterminate colitis because they couldn’t decide which one.
The following years were difficult, I married and had children with flare ups that lead to hospital again , which became much harder when you have a young family. Christmas’s usually meant a flare up and I hated it. I hated what this disease was doing to me and the fact that family life was often disrupted. One particular flare was so painful on the toilet that I was sick then fainted. My husband heard me shout when I came round. It was very scary, that happened twice.
I remember being in a long flare that grumbled along and one gastroenterologist telling me to spend quality time with my children because I may need big surgery. This was very scary stuff.
I was eventually put onto Azathioprine which put me in a very long remission ( more or less, I still got bouts of diarrhoea ) of about 14 yrs, which I was taken off due to possible long term side effects. This was the start of my last flare before surgery.
The rest is Tomas the stoma.
The following comments are from some wonderful people who agreed for me to publish them so that they could tell everyone how life with a stoma is for them, they belong to a group on Facebook called ” Making ostomies cool”. I have then added my own thoughts on body image. I have also added a gallery to my website featuring some of the following.
” I have had my bag for almost 10 years, have had two babies with it ( I am a mom of five), met the love of my life with it….I definitely will always struggle with my self confidence but I am learning. This is the second photo i have ever taken and shown with my bag. I just want people to know you can be sexy, feminine, masculine or whatever you want. The bag doesn’t define you.” Sheri
” I cried my eyes out, even though I’d had years of knowing it could happen one day. When I saw it for the first time it was no better truth behind my smile, I hate it ” Melanie
” I adore my stoma. It has given me a chance to start living in ways I didn’t think possible. I have had crohns for 10 years and other health problems too so never had the chance to have friends or have sleepovers. Missed most of my education due to this horrid disease. Now I have my bag I couldn’t be happier tbh, Iv’e never felt so attractive.” Rebecca
” I don’t mind my stoma, I hate my body. I have lost so much weight, gone from 9st 6lbs to 5st 4lbs.” Lynda
” I am quite open about my stoma and how much I hate it, but this photo is probably when I felt most confident, was a night out for my friends birthday.”
Hayley
” I had my stoma op on the 30/03/2017 and it is all good as I was in pain 24/7, and I am not in pain as much now so I don’t mind my stoma as I feel better day by day” Joe
“I love my stoma, it saved my life 3 times. Although for some,a stoma can alleviate symptoms and give the person their life back after many years of suffering, where as for me, my health has only declined since my original stoma surgery 4 years ago.” Robyn
“I love my Stoma it’s given me my life back but I do not like to see myself naked. I’m not the slimmest of people and the medication I take keeps me fat. I have a high Stoma so I the bag when out and unless I tell people nobody knows I have one” Sue
” I have my life since my stoma.Even when I have issues, still wouldn’t do back” Krista
“I got my life back. It was planned surgery due to Crohns Colitis. I suffered terrible continence issues for years, recurring perianal abscesses and fistula which refused to clear, despite Seton drains being stitched in. I had my Colostomy in January 2010 and by November 2011, the abscesses cleared, the last drain was removed and the fistula plugged. The photo is taken on board Ventura for our daughter’s wedding October last year. It was an amazing experience and I would have had to miss it if I hadn’t had my Colostomy.”
Hazel
“I told my surgeon I’d rather die than have a stoma. Then the first time I saw it after surgery I cried and told the nurses I hated that they’d given me a slimy red penis thing sticking out my tummy, I was only diagnosed with UC ten days before surgery. The day before I found out I needed surgery I was told by a different consultant that I’d avoided surgery. Then my usual consultant told me the following day that if I didn’t have surgery in the next 24 hours I’d be dead in 48 
? Was a bit of a whirlwind” Hayley
” Hated it mines was emergency surgery but getting there now x” Karen
” I hated my colostomy. Refused to look at it. Then after 6 yrs I got used to Stan. Now I have a Ileostomy and hate it lol. Have asked surgeon if my reversal doesn’t work can I please have a Colostomy again lol.
I had mine because of radiotherapy damage, so it was a shock. Hubby has been nothing but supportive, it’s me who gets embarrassed when it farts etc.”Mary Anne
“I’m pretty confident with my stoma. I never really experienced any body image issues that had to do with my stoma (who is named mt. Vesuvius, icky Vicky for short). The way I see it, my body is the way doctors made it. I had no say in the matter. Why should I feel bad for something I had no control over? It also helps that I’ve never given a flying fuck what other people think of me. It’s like they say, “you can be the ripest, juiciest peach in the world and there will still be someone who doesn’t like peaches” so I wear my bag out all of the time. If someone asks me about my bag then I have no problem answering their questions. It’s better that it happens to me than someone else with a bag who may not feel so comfortable with talking about it. I think of it as me doing my little part to raise awareness.
Feel free to use my name and pic. ”
Haylee
“Mine was emergency but I’ve learned to embrace it and raise awareness for IBD and ostomy life”
Leelo
” I love mine! Had to be told about it four times (it was emergency surgery for septic shock so they only told me after the fact, and being on sedation in ICU meant I kept forgetting). I think it’s cute though and my scars make my tummy soft. I hated my body before but it seems wrong now for me to hate something I was so close to losing.”
Amy
“Here I am on holiday 
?”
Linda
” I hated mine and still do. I wouldn’t deal with it for the first 3 months so my husband was the one who would clean it and do the bag changes. I’m finally doing it on my own now but i still hate having “Henry””Mary
“I was in the hospital for four weeks while they tried to save my colon. Then they came and told me they were going to have to remove it. I had no clue what it was all about. I just knew I was very sick and in extreme pain. I had a perforated colon, diverticulitis, and extremely inflammed colitis. I had colitis all my life and wasn’t diagnosed till now. Then one of my nurses told me she had an ileostomy. I was surprised. She was beautifuI, looked healthy, and didn’t seem to have any issues with it. It was because of her, that made me accept my fate immediately. I think the doctors were quite surprised when I told them “let’s get er done”. I never had an issue with it then and still don’t. Most of the time, I don’t even realize I have it. Gotta watch that. LOL I look at it as something I really needed to save my life. And that is quite okay. I’m single and if I was to ever be in a relationship again, he better be very accepting of it and I think many would anyway if they love you.” Wanda
“I suffered for 29 years with chronic constipation before having my iliosomy 8 months ago it is reversible but I am not having it reversed because now I am not in and of hospital every couple of weeks in pain through not having my bowels opened for weeks at a time then getting it stuck so hospital had to keep clearing me out I think if I had it reversed I would be back to square one I have my good days and my bad days but more good than bad xx” Lynda
“I hate mine and the condition I am in. 
“Do not let the bag stop you…. it came into your life so make it live your life.”
Celia
” I’m free when I’m riding.”
Tiffany
“I was looking at it thinking it my stoma equals life and not living in the bathroom then I’m all in!!! I thought I’ll deal with the rest as it comes. Meaning relationships, accidents, kids. I was 27 and didn’t have any of those then. I had almost died twice and didn’t care that I had a bag!” Shana
This is probably the most difficult hurdle of stoma surgery. Even if you had chance to talk about it before hand, it is not the same as actually having this thing protruding from your tummy that you actually poo from.
If you had emergency surgery you don’t even get much chance beforehand to get used to the idea. What you thought it might be like and what it is actually like is a million miles away. The shock can kick in months after surgery when you are suddenly alone with IT. You will go through loss because yes you have lost a part of your body and it has been changed to something alien. There are the scars to contend with too, they can be very large and the shape of your tummy can alter dramatically. Will you be able to cope? will others think it gross? do I tell or do I not?
The thought of managing it on your own forever ( if permanent) or for many months (if temporary) is a very scary prospect. You don’t know if IT will behave at work or when you are out and about. You may have other complications that you are coping with at the same time.
Will your relationship with your partner change? will they find it hideous? You like to think that the answer would be no of course not if they love you, but I can assure you that I have seen posts on forums where the partners cannot cope with the idea of the stoma and the relationship fails. So in reality there has to be some post surgery counselling and I find it strange that this doesn’t happen.
For some people, they can cope because they see it as something that has made their life better, or saved their life, others cannot get their heads around that and need help with their thoughts.
Things you used to wear may not feel right anymore. I struggled for months with jeans as they felt like they pulled the stoma bag down. I can see mine protrude through some clothes and this does bother me, especially when the bag starts to fill. Some people may avoid swimwear altogether and might even decide not to go away at all because they feel their body is not good enough to show.
Counselling would help with this. They could help with the questions on body image and what your thoughts were when you first saw your stoma. It is good to talk to others too, especially the open ones who manage very well and don’t really care what people think. They can talk about why think that way and how they think that way. Some patients will avoid stoma surgery for years until they really are so ill that they have to have it, Avoidance to surgery and to even speaking about it is common. Things are slightly easier if the stoma is definitely temporary, as patients can then see light at the end of the tunnel and know they haven’t got to live forever like that.
Coping with the news that you need a stoma, or in some instances you woke up with one, can be so different for everyone. Why the surgery was performed in the first place, because it’s not all about IBD , can determine how you are able to adjust. Same for your age, not forgetting that young children have stomas too and their parents are the ones learning to cope.
You can rediscover your body after stoma surgery, it takes time and your whole life is revolving around this new body, but like everything in life, you get used to it, you may not totally like it or even accept it but it is there and only you can deal with it,
The awareness of stoma surgery has increased dramatically over the years with blogging and TV appearances by ostomates. The #GetYourBellyOut campaign has a big impact on the way stomas are viewed now too, and all these things help people to see that their bodies are actually ok and nothing to be ashamed of. It doesn’t mean you want to be a stripper or belly dancer any time soon, but it does mean you don’t need to hide yourself away.
WARNING, STOMA PICS IN POST
I would not have managed without my wonderful stoma nurse, Kate.
Some hospitals don’t have stoma nurses or even colorectal wards, and this is very sad. To have major bowel surgery with the formation of a stoma and no one there who really knows what to do, must be terrifying. There were times ( not many I admit) where the night shift on my ward was thin on the ground, so we were given agency nurses and although they were lovely, many had never seen a stoma and knew nothing about looking after one. I had a leak once and wasn’t overly confident to sort myself out, the one nurse who knew how to do it was very busy, so the agency nurse came to help. She looked pretty overwhelmed so I suggested if she could help me undress and sort my bedding out, I would sort the stoma, she was more than happy with that. I had to take the bull by the horns and do my bag myself. Can I just add that I was very unwell and struggled to move about at that point, I wasn’t being lazy.
This is why stoma nurses need more exposure, they care for people who have had a massive life change with a big body image issue. They deal with poo on a daily basis as do the colorectal nurses ( another breed of nurse that needs more recognition).
When you get a stoma there are many questions and things that can go wrong. If you are lucky enough to have a stoma nurse you have someone available for those scary moments. On the various forums that I am a member of, I am very concerned about some of those ostomates who are overwhelmed and more or less left to their own devices, sometimes not even knowing how to order their next lot of supplies, this is not good. The only real help they get is from the online forums and sites and although this is helpful, it is by no means medical and is really only other peoples experiences. The other thing that totally amazes me is the amount of ostomates with very extensive sore peristomal skin. After a long time of trying various remedies and nothing happening, that’s it, they are left to struggle. I had sore itchy skin one time but nothing to the scale of these poor patients and it drove me insane.
Stoma nurses are there for you.
If you get a blockage or are unsure if it is a blockage, rather than panicking and running straight to A&E I can call Kate and she will run through my symptoms and if necessary will see me fairly quickly. Without that, the scariness of what is happening to you can be overwhelming. Same goes for any pains and bleeding, you worry about hernias and any damage you have done to the stoma.
An example for me is a couple of weeks ago when I was changing my bag, I was shocked to catch a glimpse of the underside of Tomas, because he droops down a bit it is difficult to get a good look. I seemed to have cut Tomas quite deeply ( in my mind anyway) and I was terrified what damage I had done and HOW I had done it. It looks like a ridge and it had a dark bruise/ blood line. I shouted my husband and he took a couple of pics for me to see it properly.
I think because it droops I might be catching it on the base plate, which is not good because it will always be like that then, as my stoma is slightly in a dip at the bottom too. I kept my eye on it for a few days and decided I should ring my stoma nurse. Would it heal ? would I need something doing ? eek. I hadn’t noticed any bleeding which is why I didn’t know I had done anything at all.
I went to see Kate and she put my mind at ease and gave me some tips to try and heal it and stop it happening again. We were not entirely sure why it occurred but at least I have someone to have a look and keep their eye on it. I also got the added benefit of her checking the whole stoma and skin at the same time.
As an added bonus, I asked her to write a piece for my next blog about the day in the life of a stoma nurse, so watch this space.
I realised after the fact that my family just had to get on with it all without any real medical support, the support was all for us patients, and yes we needed it, plenty of it, but what of our families?
Most of us have been unwell on and off for years, and I don’t mean just a bit off, I mean full on housebound, bed bound, unable to attend events kind of ill. The year before my surgery I was a mess and my poor family rallied round and did things without me. I missed concerts that my daughter was in, quality time with my son when he was home from university, and my husband did everything and was marvellous. I had friends who did the running around for me too. Not everyone is as lucky and I cannot imagine how hard it must be for anybody who has to go through it alone. This would also apply for any type of chronic illness too.
My husband, wider family and friends watched me deteriorate over the year without proper support from anyone. The gastro team kept suggesting that although I had severe left sided disease I was also a bit depressed and should snap out of it. This was awful for me and my husband , because I thought he would believe them ( and he almost did, as they were the experts after all ) and I started to doubt myself, even though I was having temperature spikes, loosing a lot of blood and was constantly being sick. I couldn’t understand why I wasn’t being helped.
God only knows what my family thought. Yes I was ill, but was I as ill as I seemed? They had to wrestle with what they were seeing and what was being told to them. I had to wrestle with the feelings of illness and the thought that I was losing my mind.
Eventually my husband ignored the team and took me to A & E where I was admitted and was told by my surgeon that I needed a total colectomy within 72 hours ( it ended up being the next day, a Sunday). I remember my kids coming to see me before surgery was decided and I knew they must have been terrified even though we had discussed surgery within our family many times. My son said it would be the best thing and I would get off all those nasty drugs that I was given for the IBD. He was right of course, that was a good factor to consider.
As you can imagine, there were questions about why I had been left. But they never really got answered.
After surgery I was very poorly with complications and my husband came every day for nearly three months with me in tears every time. We spent our 20yrs anniversary on the ward, I was going to try and get to the Costa downstairs as our anniversary date( we live the high life ) but couldn’t face it. The ward had bought me a cuddly toy and anniversary card to cheer me up .
It took it’s toll on my family, and although I knew this, I was too self absorbed with my own problems to realise. Whenever I cried he said he felt that all eyes were on him and that they would think he must have done something to make me upset as I only got upset when he came. But in reality of course this wasn’t the case and the other patients knew I was in a dark place and very ill and often upset throughout the day, it just all floods out when a loved one comes to see you. The doctors don’t really have the time to sit with relatives and explain everything so they only hear second hand from the patients themselves and that can get twisted like Chinese whispers. I wasn’t doing very well so he arranged a visit from my sister in London as a surprise to see if she could help with my mood and get me moving more. I remember seeing her peek around the curtain and again I cried. This was becoming ridiculous. She talked me into getting in the wheelchair and taking a trip to Costa with them all. This was a military procedure as I had a rectal catheter in and couldn’t get very comfortable without a mass of pillows in strategic places, blankets etc.
I promised her I would try and get up every day, and I did. I wanted to do it for my family. I realised that I had been so self absorbed with my pain and worries I hadn’t even thought about my family’s feelings, I felt awful for this. It was the hardest months for us all. Even after I was discharged the journey wasn’t over. My husband would take me out in the wheelchair by the river , and each day we would get a little further and I would get out and walk back. There were times when I would be sick at the side of the path and I said on numerous occasions that I thought I would never be the same , would never be able to walk the whole path, would never nip to the pub for a quick drink with him after work (this one sounds weird to put in but this was something that we enjoyed and I missed). I wonder if he thought the same. He certainly never said, he just said that of course we would and things would get better. He was absolutely right but he must have had doubts.
In order for me to be allowed home he volunteered to empty and measure my rectal catheter twice a day, he would make sure I drank and ate enough, take my pills and generally be my total carer until I was well. He was my total rock but really got no support . He even packed my wound on several occasions so that they would allow me to go away for a few days. He is a tough cookie so many people think it didn’t affect him, but I saw the odd time when he could have done with someone out of our circle to talk to, but there wasn’t really anywhere specific to the needs of relatives in this situation. I have read many a story like mine with people who are in hospital for many weeks/months and their families just have to cope with all the ups and downs.
My friends had also left visiting times in tears seeing me in such a bad way. Everyone cared so much but they also could have done with some kind of support network. Maybe some information about what was happening and why, or a support group within the hospital for relatives and friends of those who have complicated illnesses or surgeries. I know this costs money and, to be honest, I would love to start something like this with the support of the wards, but I have no proper medical background so don’t think it would be allowed.
But I do have the experience, and that could be enough.
Years ago when I was hospitalised with my first ever flare of ulcerative colitis I was constantly being sick. The pain was awful and that was the culprit of the vomiting. The sickness got so bad that I was threatened with the dreaded NG tube.
Even at that age (20) I knew I wouldn’t like that at all and refused profusely after hearing another patient gagging and spluttering behind the curtain when having theirs put in, they couldn’t do it. I know a lot of people are scared of having this done, it seems very alien and frightening.
I had the NG tube fitted whilst I was under general anaesthic at the time of my stoma surgery, so I was spared the spluttering and gagging ( and so were the doctors). I remember waking up in the high dependency unit feeling like I had been run over by a train. The worst thing for me initially was the NG tube, it gave me such a sore throat and when I tried to speak it moved a bit in my throat and was such a weird sensation. They used to attach a see through bag to the end and you could see the bile etc collecting into it, that was enough to make anyone feel sick. I was so happy when they finally said I could have it removed, the nurse told me to take a deep breath in then breathe out slowly while she pulled it out, this wasn’t overly pleasant but was over with fairly quickly.
I was in hospital quite a few weeks and was still very malnourished, I was not eating well at all because of the pelvic infection and had lost over two stone. I wasn’t surprised when my dietician said I should really consider a feeding tube to help me get the goodness and calories I needed. I said no a few times because I was scared but also felt very embarrassed when I think of all the young children going through this. I can guarantee that they are much braver than the likes of me.
A few days later my stoma nurse came to see me, I always got on very well with her so when she said it would be in my very best interests to have the feeding tube. I was feeling brave so said yes but only if they could get someone there and then before I changed my mind. These tubes are slightly narrower than the ones for sickness but to me they still looked like a hose pipe. I had some water next to me and when the doctor started to insert the tube I just drank and drank. All was going swimmingly until I ran out of water. I panicked, grabbed the tube and pulled it out. Doh
The doctor had almost finished too , oops. I said can we try again and I got a bigger drink to gulp down. This time it worked, I only gagged a very small amount when the tube was going past a certain known spot, this is called the oropharynx. They then send you for an xray to check it is in the right place as they can then remove the guide wire that is running through the NG tube.
This pic is the feeding tube, the top pic is the one I had during surgery. There are other ways to feed patients , intravenously is one that is used a lot for IBD. It is called a PICC line ( peripherally inserted central catheter) and tends to be used when someone needs help with meds or feeding over a long period of time.
Before they hooked me up to “dinner” the tube was flushed through, I was fed throughout the night and was fascinated when the fluid followed the tube and down into my nose, it was quite cold when in went through the throat, very strange. I was fed this way every night for a few weeks until one morning I felt unwell and was sick. The tube came up into my mouth, I shouted the nurse who told me not to panic and to pull the tube out. I was flailing about trying to pull it out through my mouth and of course it wouldn’t come out because it was taped to my nose. I realised and pulled it out through my nose. Phew I wouldn’t want to repeat that in a hurry.
I was lucky that I didn’t need to have it again, I was reprieved. I made sure they saw me eating as much as I could ( this wasn’t much but they said I was getting enough now to put some weight back on.)
All I can say is that if I can do it, anyone can.
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