Body image and coming to terms with a permanent/temporary 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.

Why stoma nurses are important

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.

No help for the families of IBD and stoma surgery patients?

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.

The NG tube (nasogastric)

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.

 

How my ulcerative colitis started

I remember always having some sickness and bowel issues as a child. I would often be very very constipated and be sitting on the toilet for hours until I had seat marks embedded into my legs. I also had sickness bouts every few months, they would come on for a few hours and then I would be right as rain again.

Thinking back, this could have had something to do with the diagnosis of IBD (inflammatory bowel disease) many years later.

I am also very sure that a stressful situation started my first proper flare. I was going to see my sister in London the next day, but stupidly went out the night before with my purse in my handbag, in the purse was just over a hundred pounds and my train tickets, bank cards , photos and other special things.

I went to the busy bar to get a drink with my two friends and when I went to get my purse out it had gone and my bag was wide open. A wave of mixed emotions followed. I was so upset and angry and just didn’t know what to do. We went outside and there were some policemen who helped me to call the bank and cancel my card, they said I was the fourth person that hour.

I went home upset all night and my dad sorted out more train tickets ( we did eventually get the money back from them for the original ones) and I still went to London. I started to feel generally not myself, I got loose stools and when I looked in the mirror I thought my eyes looked sunken and dark.

I got home a few days later and things deteriorated from there. I started to be sick , I had an awful pain where my appendix was and I was struggling to make it in time to the toilet. The doctor came out and said he thought I had appendicitis and needed to go to hospital.  ( This is not uncommon , it can mimic appendicitis) I had never ever been in hospital let alone had any surgery so was petrified. I got there and the doctor examined me. He said because of the diarrhoea he didn’t think it was my appendix and they would do a few tests and I would be admitted. The sickness, pain and diarrhoea were terrible and I thought I was dying. It was taking a while for a diagnosis and I had to have many tests. I was bleeding a lot too which was scary and I just thought ” I have cancer”. I was on a drip and often needed the toilet urgently which would cause accidents as I couldn’t get there quickly enough with the stand and drip in tow. It felt degrading and humiliating, although no nurse ever minded, I minded, I was a young woman who shouldn’t be soiling herself and need looking after.

I was put on intravenous steroids and fluids and couldn’t eat with the sickness. I was advised I might need a naso gastric tube to stop me being sick and I refused I was so scared. I was started on Olsalazine but remember at the time I wasn’t advised that I should be taking it indefinitely, so when those were finished I didnt’ get anymore and became ill again.

I started to respond to the meds and they also told me I have IBD but they were not sure if it was Crohns disease or ulcerative colitis. ( They never really knew at all because they called it indeterminate colitis after that as it could be Crohns disease even now ) I spent some years in and out of hospital with this awful disease, with many people not understanding how severely ill you can be with it. Many think that IBS is similar but I can safely say they are nothing alike. When I am in remission I have IBS so that will tell you something about it. IBD can kill you as I nearly found out last year. I am in no way saying IBS isn’t horrible, but it is not IBD.

My life was not how I imagined it should be, the illness was ruining my life, I was having flares at times when I should be well, for example when I was about to have my babies I would flare, and those flares lasted for a good few weeks after the birth. Most christmas’ were the same and I remember missing one Christmas day with my family and being stuck in bed. I was in hospital when my children were very small which was awful. Going for meals would sometimes end with me going home early because I would feel unwell.

I do think that although the surgery for me and my family was very traumatic, I can go out and enjoy my life now more than I ever could before. I have my off days but if I really think about it, it is nothing compared to the off days with an UC flare.

 

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.

Tomas the stoma on holiday

Nerves are kicking in just slightly. Looking forward to going away with the girls to Spain, but still have some reservations regarding Tomas and my sinus etc….lots of potential issues.

Tomas is behaving pre holiday so that’s good to start with. Hopefully he is good while we are there.

As I was going away with close friends I was ok, but just because of my leak and bottom problems I was nervous on the way to the airport. I was given a  Diazepam to calm my nerves and it worked a treat. I was totally calm, probably too calm as I fell asleep on the plane.

At the airport I had to go through the body scanner at East Midlands. I mentioned the ” bag” and all was well, I was just patted down and was on my way. They didn’t even swab me this time which I was surprised with because the bag was a bit full and could have been anything. We then had a coffee and then we were off.

After a few hours of me snoring on and off and waking myself up, we landed in Spain. It was lovely and warm. After we unpacked we went to the beach. I had two pina coladas and was totally drunk because of the Diazepam I expect. When we got back to the apartment I fell asleep, woke up later and felt brilliant.

I noticed a lot of looks on the beach at my bag, or maybe it was the cover with Tomas on , who knows. Because I am a member of a lot of forums and groups I see stomas and ostomates all over the web all the time and marvel at how many of us there are, so was mildly surprised to find that I appeared to be the only one on the whole of the beach each day. It brings it home just how uncommon it actually is despite the push from the media and us lot.

One woman said ” I like that” pointing to my cover, I thanked her and said I had had a big operation, she looked embarrassed and apologised, I think she thought it was a fancy bum bag lol. Now that is an idea !!!

I couldn’t go in the sea or pool because of the sinus leaking, I even had to wear a pad in my bikini bottoms. We went for some lunch and that was where I had an accident which upset me. Whenever I sit i tend to leak through the sinus tract, but this time I leaked through my shorts, my lovely friend Helen came to the toilet with me and took my shorts to dry under the hand dryer, and I changed the rest. I was in tears and felt so fed up. The feeling passed and I got on with it again. I was constantly checking myself though which was very annoying but it was something I couldn’t help. I remember lying in the sun with my friends next to me and knowing that I was the only one that would have to check my bag and my bum constantly, and would need to know where the loo was. luckily it was very nearby.

Talking of toilets, Spanish toilets are on the whole very nice. Their disabled loos are amazing. At the airport there were three disabled toilets, all were massive and clean, and had all the things you could possibly want. ( see previous post about toilets in Japan).

I changed my bag twice over the five days mainly because of the heat, I felt the skin was starting to itch but there were no other issues at all with the bag. I drank plenty of water ( and alcohol) and ate lovely food. I over did it one evening and was sick in the middle of the night, I say it was over indulgence, everyone else said it was mixing my drinks.🙄

I did enjoy the holiday and because the friends I went with are my very closest, I could relax enough to tell them if things were not great, but be open enough that I could change and air Tomas in front of them. I had fun, I drank, I ate and I sunbathed.

My stoma looked a bit like a dartboard though, white bits and red bits, but the red is just where the mouldable ring has pressed onto the skin and where I got a bit itchy with the heat.

On the way back from Spain, the airport again was non eventful, I didn’t even travel with a note about the stoma or any extra stuff relating to it. I just thought I would explain when the need arose, and it didn’t. They could hardly deny the facts. A few of us took extra suitcases and hand luggage, it meant I could take whatever I needed without worrying about space. Hand luggage on it’s own would have been a struggle, I wouldn’t be sure what to do with make up solutions , suncream AND stoma solutions in those see through bags.

I would definitely go on a girlie holiday again , but would be so much happier with the sinus gone. Having a constant leak is no fun at home, but on holiday it is a menace. The actual stoma side was ok up to a point ( you are never totally normal). There were some clothes I would have liked to have worn but the bag showed through a bit so  couldn’t. Playsuits and some tighter fitting stuff, usually the lighter colours. I really need to invest in a nice not too tight stoma band, just to stop it dangling. If anyone has any ideas of comfy bands that are not totally tight like the support bands I would be very grateful.

The moral of this blog is… don’t be afraid to go away, nobody is perfect so why should you be the only one?

 

 

 

The gym, a stoma, and a 50yr old woman…..go on then.

I hate exercise of any description, and having a stoma gave me a wrongly perceived excuse not to do any. But thanks to those wonderful ostomates who are bodybuilders like Blake Beckford and Zoey Wright ( thanks guys), I couldn’t use that one anymore. My husband is a keen health and fitness person who will look lots of information up to “help” me find the exercises I can do, and came across these stunning specimens before I had time to think of a suitable reason as to why they could do it and I can’t.  I don’t run ( genuinely) as I have a weak leg. So that was out of the question. When I try to run I look like Miranda Hart doing her gallop.

When I last went to the gym it was way before pre surgery and I have to admit, I didn’t lose a bean so that put me off. I worked hard then too, but probably failed with the eating side. I love food, good and bad and can quite easily devour a family bag of galaxy counters without any trouble.

I was always fairly thin so got away with eating anything I wanted, up until I hit 40. That changed everything, I went from about 8.5 stone to a good 10.5 in about ten years. I am 5 foot 7 inches tall.  When I became ill I dropped again to about 8 stone, only this time I looked ill and was ill. This photo was just after I came out of hospital and I hate it.

I ate what I liked because I could, and I was encouraged to, it meant I could eat all the things that were bad because I needed to add weight. Now, I can’t stop and I know I have to do something about it. Because I am so bad at sticking to it, my husband thought it might be a good idea to blog about it so the whole world can see if I don’t stick to it. Hmmm

As luck would have it ( sarcasm)…….we have a multi gym in our garage ( no excuses about cost then ). Jon has devised a programme for me and I had my first session. Now even though having a stoma doesn’t stop you doing things, I am terrified of getting a hernia, this is something that can happen more readily with someone with a stoma, but I thought to myself that there are many of us who exercise very happily if you take the right precautions. Firstly was the very flattering stoma support band. I am not a fan, I feel hemmed in and my stoma feels flat. When I sit it kind of flips up at the elastic or bunches up a bit, I feel I am always checking my tummy more with that on than without, but needs must this time.

Lovely isn’t it ? Bridget Jones springs to mind ” Hello mummy”.

Anyway, to start with I will be doing 15 mins on the bike, now this is already an issue because I find them so uncomfortable even with the gel seats,  especially with my bottom problems, so luckily Jon got me a peddle thingy that you can use sitting on a comfy chair. He thinks of everything. ( sarcasm).

I then did some lateral pull downs with the cables attached to weights. He did take a picture but I wasn’t impressed so won’t show it this time. Camera angle and all that.

I then did some lateral side and front rises. This hurt the most and the embarrassing thing was, we tried various weights and the only one that I could do was……..the bloody bar on its own. The shame of it. Then on to the rower which I liked.  this was my first session and it was ok. I now have a legs day to come. My stoma felt fine, I didn’t feel that I was causing damage so that was good. I was careful not to lift too heavy a weight ….as you can see, and hopefully in a few weeks I might manage a weight on the end.

I won’t bore you with it all the time but will keep you updated.

Weight 26/8/2017  11st 1lb

Waist  – I would rather not say at this present time 😉

Cellulite – lots.

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.