Everything you wanted to know about a stoma but were too afraid to ask

I know that a lot of people don’t know much about stomas and would like to know more, either because they may need one in the future, know someone with a stoma and don’t like to ask, or are just curious.

All of these are ok.

I will try and answer some questions that I have been asked in the past, also if there are any questions you would like to ask, please feel free to get in touch.

WHAT DOES IT LOOK LIKE AND HOW IS IT MADE?

Ok, you may have seen photos of stomas and no two are the same.

Let’s start with a urostomy. This procedure is used to divert urine from diseased or damaged sections of the urinary tract. The most common urostomy is the ileal conduit. The surgeon will attach a piece of small intestine to the two ureters ( these are the tubes that carry urine from the kidneys), the other end is brought through the abdomen to form the stoma. There may also be a pouch made by the small bowel that acts a bit like a bladder that can store the urine before it is released through a catheter ( continent urinary diversion).

Ileostomy and colostomy are made with the bowel. Colostomy is when some of the large bowel is brought out through the abdomen and ileostomy is where a piece of small bowel is brought through.

This is a diagram that is one common way to bring the bowel through the skin, as you can see it is turned inside out and stitched to the skin. It is from www.insideoutostomy.life  , a great site for information and keeping fit with an ostomy.

Tomas is an “outie” as he is quite long but some are almost flush to the skin.

Does it smell?

Yes, but only when you empty it. Same as going for a normal poo. The smells might be slightly stronger because the foods are not as digested.

Does it hurt?

Not the stoma itself, there are no nerve endings in the stoma. Sometimes the skin around the stoma can get sore, or we may get pain behind the stoma. on the flip side there is no control over when the stoma does its thing,so that is why we need a bag / pouch to collect the poo.

What does the bag look like?

There are various types, some are closed and you change the whole bag ( usually for colostomies) mine is a drainable bag because my output is similar to porridge, the colon was removed and that was where the water was absorbed back into my body. This also means that I can easily become dehydrated. This is the exact type that I now use, Pelican Platinum contour mini, and I really like it for comfort and neatness.

 

The drainable end is cleaned and the folded up into the bag and secured with velcro tabs, nothing can get out and it doesn’t smell at all when sealed. You can get them pre cut to size if you know the correct size for your stoma, or you can cut them yourself, this is better if for example your stoma is not perfectly round.

Can you have sex normally?

Absolutely no difference ( except it can sometimes sound like a packet of crisps rustling about ) you can also tuck it inside itself a bit to make it smaller. There are some really small ones available but non drainable.

What about bathing or showering?

Some people will shower without their bag, I personally don’t because it can get messy and you can bet that Tomas will decided to work just as I am drying myself, and because I like to sit up on the bed and air Tomas, I am happy to clean it then. A colostomy might be easier if you know when you might be about to poo, or at least you could take a chance after you have pooed. ( with some colostomies, the poo is more like a normal poo). With an ileostomy or urostomy this would be like Russian roulette.

How do you empty the bag?

Some people stand or kneel over the toilet, I personally prefer to sit. I will make sure the toilet is clean ( This is a pain in public toilets, people can be so dirty). I will then sit right back on the seat and empty the contents between my legs. I will often put a bit of tissue on the front of the bowl as this helps to flush it away cleanly. it is like a having a normal poo but quicker.

How often do you change/ empty the bag?

this can vary depending on the type of ostomy. My experience is I change it every 2/3 days, and empty it when I go for a wee, or if it is more active it can be more.

What about at night?

I will empty just before I go to sleep, and sometimes I automatically wake up in the early hours to a fairly full bag, this can be more wind ( yes we fart into the bag) and that makes the bag balloon. One thing, if someone farts and it smells, it won’t be us. I find that ballooning can sometimes cause a leak,then I have to change the bag. Once you leak, thats it, there is no quick fix.

 

Why do you need a stoma?

For me it was a bowel disease called Ulcerative colitis, part of a group of bowel diseases called inflammatory bowel disease ( Crohns disease is the other main one). For others it could be many reasons, trauma from an accident, cancer, diverticulitis ( another bowel disease which manifests as inflamed or infected pockets in the colon. others get obstructions which can lead to perforation if left too long ( as can IBD). There are some patients who require both a colostomy/ileostomy and a urostomy. These amazing people are affectionately called ‘Double baggers”.

Can you get pregnant with a stoma?

The short answer is yes, you can go on to have a baby normally. There are some small considerations that your stoma nurse or  midwife can help you with. The stoma can change shape along with the tummy, so the bags may need to be altered through the pregnancy. Scar tissue can stretch and be uncomfortable, but this won’t cause any concerns for the baby. There is support throughout pregnancy.

Does it feel different without the colon?

i have to say that no, it doesn’t feel different. I did hope to be slimmer around that area, but unfortunately other organs move into the space.

What does it feel like to not have a rectum or anus?

I still get the feeling that I need to poo the old way. It is a total impossibility for me, as nothing is connected and I have no “hole” ( unless you count the annoying  Perineal sinus after proctectomy. )

the urge is a phantom pain, like after an amputation ,which is what a colectomy is, an amputation. Everything is removed and sewn or packed shut. This is where the term Barbie Butt comes from, because it looks like a dolls bottom now.

Because of scar tissue, it is not absolutely discomfort free for now, but I hope in the future it will be normal.

If you would like to add any more questions to the list please use the contacts form.

 

 

Now there is work to do….

I have read some of my posts again and have decided it is time to tell you about the good things. I know the surgery sounded scary, and yes it was, but you know ? it is over and I am fine.

I like being different now, and I like telling my story. I feel empowered that I got through it and out the other end stronger,  and keen to let people know that the word STOMA isn’t a scary word, and having your bowel come out through your abdomen doesn’t stop you living and having fun. It does take time to recover, but you do recover.

Yes, I can eat most things, just a few things need a bit of care and chewing. Yes, I can have a drink or three of alcohol, as long as I make sure I drink water in-between, I have been just fine. I go on holiday with no real problems, maybe I need to change the bag a bit more often if I am hot, but it doesn’t melt and fall off. I get sore skin occasionally but I can sort it out. I don’t feel odd because I know lots of people of all ages have been through the same thing. There is a great support network that you must use to the max and this will help you to feel that you are not alone. There are many Facebook pages for ostomates, and lots of great websites which I have listed on my Tomas site.

If you are scared of the surgery, just remember that you will almost certainly feel better when you have recovered, than the reason you needed the surgery in the first place. They don’t perform this surgery lightly, so you will need it if you are having it.

Give yourself time to recover. If it’s only a few months and you still don’t feel yourself, give it longer. The surgery takes it out of you, mentally and physically so you need time to come to terms with it all, and again, use the support from hospitals, GPs and counselling. My surgeon said it is at least a year before you are near your normal self, longer for others. But you do recover, and stronger than ever. Yes, there are hiccups along the way, and I am not saying its easy, and there will be some unfortunate people that have a very tough time, but as a general rule, you can live a near normal life. There is more awareness now about ostomy surgery, and I am glad to be part of that awareness.

It helped me to decide to name my stoma, and I know a lot of others who have done the same, it helps to come to terms with the new normal, and you can treat it like a separate being who can be naughty / nice/ poorly, I also found it therapeutic to write down my thoughts via this blog, I also have counselling to help put things into perspective.

I am not saying things will be easy, they most certainly won’t be at first, but know that there is light at the end of that tunnel, and the pain and worry won’t last forever. I speak from big experience, because things that could have gone wrong, went wrong for me. My scar opened up and I needed it packing for 6 months, my rectal stump blew its stitches causing pelvic sepsis and I have a small fistula at the base of my stoma which causes poo to come out there as well as the spout, I was in hospital for nearly 3 months, but even despite all of that, a year on and I feel better that before. I do have off days and I allow myself that, but I try to do the things I did before with more pride, I enjoy things more because I know that I was so ill I might never have done those things ever again.

It is ok to be scared , it is ok to be angry, it is natural and inevitable but remember that your family and friends will also be going through some feelings of fear and anxiety. They will be scared for you, and want you to be better. I don’t think relatives have a lot of support . My husband was there for me every day but at the same time had to work and look after our family, all whilst seeing me in pain and discomfort. He would see me cry all the time, and he would need to be seen to be strong for me, but deep down he had his own fears. I never knew that my husband went home thinking that the ward thought he must be a horrible person because I would cry whenever I saw him. This of course wasn’t the case for my other patients or the staff but that is how he felt.

I want others to know my story so that they know what is normal and that everyone goes through the same sort of feelings. Good luck to everyone having surgery or those who have had it already, you will only hear the scary stories, but there are many stories not so scary in the end.

 

What on earth can I wear?

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I have to say that I just cannot get on with stoma support wear. In all honesty I have only tried the one we get on prescription similar to the above picture. I just find it tight and restricting, my skin around Tomas starts to itch too.I worry that when the bag starts filling, it will squish it and it will leak. I think I won’t be able to tell when it needs emptying. I would like a nice lacy very stretchy and not too tight, band. I have seen some that look nice but don’t want to spend money on them if they are not right, so if anyone has some nice support wear that I have described, please let me know.

I must say, I do quite well with clothes now. For months I wore leggings and that was about it. I still love them for comfort but I have worn dresses and jeans. I have always worn high waisted jeans, as they are much more comfortable than the low or mid waisters that cut into your tummy and you can’t sit down and eat without being really uncomfortable.

I wear skinny jeans quite happily and tights dresses too. I used to think everyone and his dog would see my bag, but they really can’t. It is something that you get over with time.

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I still scrutinise myself before I step out the door, but when I first had Tomas, I wore for comfort and covering up. I thought I had to wear loose tops/tunics and shouldn’t wear tight things as I saw myself as flawed. My only issue with a dress is when my bag starts filling , it flaps about a bit unless I tuck it into my pants, and you can notice it through the dress. This is why I thought a stoma support garment might help, it probably does as far as flattening it all, but I just feel as though it is doing something that I can’t see. At least I can tell when I need to empty if the bag is loose.

As far as sex goes, it is no different than before surgery. ( Except it sounds like a bag of crisps between us ). I would still like a nice lacy something, to cover it, but really want it to be comfortable. I am very lucky that my husband is fantastic and doesn’t see the bag whatsoever. So I am not at all bothered about showing it in front of him.

I still wear baggy or tunic tops, but again more for comfort than self confidence. I am not ashamed of my body and scars, in fact I am very proud of them. It shows what I have been through and overcome.

It is very inspiring to see my fellow ostomates getting on with it and looking fabulous at the same time. I am going on holiday in a couple of weeks and aim to wear my bikini with pride. Watch out for my next blog about flying with a stoma and being abroad.

Problem solving, and book writing.

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A funny thing happened this week. We went to Manchester as my daughter had an audition for university and my son goes to Manchester Uni, so we killed two birds with one stone and stopped at a Travelodge.

This was my first stay in someones else’s bed, not family. I made sure I had a spare ileostomy bag with ring seal, barrier spray, adhesive remover spray, poo bag. Good, I could go away in peace knowing I had my kit. NOT.

I woke up at about 6am and knew things were not quite right. I felt my bag and it had ballooned again, but because of that, it had come away from my skin, luckily only slightly, but enough to have a small leak. Bugger.

Oh well, I had my kit bag so I went into the bathroom ( I must add that I have never changed my bag standing up, so this was a novelty.I will not be repeating it either ). Luckily I got my fresh stuff out before I took the existing bag off as low and behold, I hadn’t packed the scissors or pre cut my bag. ( you have to do this in order to fit the bag around the stoma).OH NO, what do I do?, I don’t want to wake the family up, but I can’t really go to sleep either. I laid on top of the bed with the old bag still attached but with a slight leak, and tissues stuffed around it. As I lay there for about half an hour, I could feel that my skin was getting a bit sore and itchy, I knew it shouldn’t be left much longer.

There was nothing for it, I got dressed with some tissue pressed around the base of my bag, and went down to the reception.A lovely young man came to the desk ( he wasn’t English so although he spoke very well, I knew it might be a struggle). I asked if they had some scissors I could borrow. ” I am happy to get you them, but I will need to cut whatever you need cutting” said he.

Hmmm , ok ” I just need to borrow them for a very short while” said I

” I can’t give you the scissors I am afraid but am really happy to cut something for you” he repeated.

Right. ” I have a stoma, and need to cut the bag to the right size to fit my stoma”

Silence.

 

He looked slightly confused, then I heard a voice from his office behind him.He went in the office, came back and said. ” My manager says you can take the scissors” LOL

On another note, I feel strongly that there isn’t really much reading material for the very younger 0stomate, or young children who have family members with ostomies. So I have started to write a small book about ostomies, in a cartoon funny way that they will appreciate, nothing too intricate but enough not to scare either. It will be starring Tomas The Stoma, with cartoon pictures of Tomas doing various things stoma related. It would be lovely for your views, so that I can research the need for this. So far the forums I have asked have been a very positive response, which leads me to believe that it is needed or wanted. Should there be much charge? should I see if the NHS would be interested? Maybe another way to get it out there? Please get in touch and let me know your thoughts xxxx

Back at work

Well I have been back to work for two weeks on phased return, and I am glad to be back.Everyone is happy to see me luckily, and I have been reasonable well. I did have a small leak from my proctectomy before I went back and a swab found infection so was on antibiotics for that, which cleared up fine.Only thing is it left me with oral thrush so am on oral suspension for that.

This morning I woke up with a slightly swollen eye and itchy skin, so it seems I am allergic to something, maybe that thrush stuff, annoying. Will see what happens today, luckily I am off work today anyway.

Tomas decided to make himself known in a training session, by making loud noises,there were only three other people and at first I made excuse about tummy rumbles, but the noise didn’t really sound like that so I fessed up. Those happened to be folks who didn’t know about him, so otherwise I would have laughed it off.

I have been lucky that I have not had a leak at work, usually I don’t leak, but this week my stoma bag leaked twice at home.They were both small leaks that didn’t spoil anything, but you always have that fear, and I noticed both as I got up in the morning, so it set my morning routine askew and I felt a bit rushed. I like to air Tomas for 20 mins when I change my bags, to help prevent itchy skin and time for the barrier spray to soak in. I found myself pressing the edges of the bag over my clothes all morning to double make sure it was stuck well. It could be a lot worse though, and I could leak at work or all in the bed. All in all, work has been great, and I have settled back into it, and all the new things that have been introduced in the year I have been off.

I was measured for a hernia belt too last week, I wasn’t sure about them at first, as I thought they might feel very tight, but I was pleasantly surprised. I get three on prescription a year, and not only that, I can have them in the pants style with lace. I have decided to try them both and decide on the third, based on the outcome. I will mainly use them for if I wear dresses and skirts ( those that know me will probably say, never then) but even tighter clothing would look better as the support with hold it all in and flatter, but allow the bag to fill up still.

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You can get them from the NHS or websites that do ostomy underwear.

 

On the up

It has been 8 months since my first main surgery and 3 weeks since my proctectomy, and I am doing well. I can sit pretty well without much discomfort and am beginning to feel my old self. The scar is less sensitive and the bruising on my inner cheeks has gone 😉 It is great not to leak fluid constantly from my rear end, and I am saving on sanitary pads and loo roll.I still don’t know if I made the right decision to leave more surgery on Tomas, because he is being a right pest. I get itching under the bag, my poo sometimes gets onto my skin next to Tomas and becomes sore, and the skin that connects to Tomas , a part of it has decided to pop out and curl over which is sore. I can still handle it but it is a nuisance. I am seeing the stoma nurse soon, so will see what is happening, and seeing the surgeon for my check up in February.

I have found that my hair under my fringe is very thin, this can happen apparently when we have had this sort of surgery, and I hope it thickens up soon. Having Tomas to concentrate on with twitter etcetera is a help, and I am thinking of doing more with the concept.

I go back to work in the new year and am really looking forward to it, I am a bit apprehensive as I know some things have changed, but the team are fantastic so I am sure I will get plenty of support. I am hoping I will start to feel “normal”and my mind won’t constantly be on my health. My friends and family have been my rock, and because they know all about me, I don’t feel embarrassed about things. I do worry that Tomas will make a lot of noise at times, especially at work, but me being open about it means I will probably come clean.

I haven’t mentioned up to now, that I had a confirmed diagnosis of multiple sclerosis, which I kind of denied the idea for quite a while. I have some symptoms that need treatment but I am not going to dwell on this for now as this blog is for Tomas and me, but I may tell the odd snippet now and then. Although I was advised to have vitamin D supplements ( a high dose) which is great for your immune system, I was never told this before, and it may have been worth taking them with the colitis too, as that is also an autoimmune disease.

I am going to have a better christmas than last year as I was unwell then, with the start of my last flare of ulcerative colitis. I can relax at home and enjoy time with my family.

Please follow Tomas on twitter @tomasthestoma

PERINEAL PROCTECTOMY (BARBIE BUTT)

 

Well its two days before surgery at the moment , and I am shitting myself (not literally, thats impossible). I have high anxiety levels where my whole body is on high alert. I feel on the verge of panic constantly. I hate this feeling, I wish I wasn’t such a worrier, my mum almost skips into surgery , whats that about ?.

My bag will be packed soon, I keep looking at it ready but not quite sorting it out yet. I have to be on the ward at 7am and have four pro op drinks to drink before midnight, then two more a couple of hours before my op. Thats great, that means I should drink them before 7am in case. The surgeon is refashioning my stoma too, although I need to ask again if it is worth the risk, as I am coping ok with it now. The risk was …more prone to hernias, and prolapse of the stoma. Don’t fancy either of those thank you.

I am trying to fill my few days before surgery so I am not thinking too much all the time, it is very hard to do. Even though the last surgery was awful, I am much healthier but also have the time to worry, I didn’t really have time before.

THE DAY OF SURGERY

We had to get up very early, I had to drink 2 pre op drinks, 2 hrs before surgery so I played safe and had them before 6am. Gross that early in the morning but had to be done.

 

We went to the surgical admissions ward and I had various checks, then got into my gown. My surgeon came to see me, and I mentioned my worries regarding having my stoma redone. After a short time, we decided to leave the stoma and concentrate on the proctectomy. I am able to look after Tomas as he is for now at least.

When it was time, I had to walk down to theatre, it was the walk of doom, I really wanted a sedative before all this, but no luck. The anaesthetist said I wouldn’t need an epidural for after pain relief this time and should be ok with intravenous painkillers. I lay on the bed, the surgeon was there too. Before I knew it, It was done.

I woke up in recovery, in complete pain,the worst I have ever had, the nurse soon filled me with pain relief and then I was fine.I had a bit of temperature but that got sorted very quickly.I felt the odd twinge but all was ok. I had a cup of tea and a sandwich, then had to wait the whole afternoon for a bed on the ward. Meanwhile, my catheter was removed and I had some fluids. I was soon asking to use the loo. They tried a bed pan and I just couldn’t wee, so they got a commode, and again, I tried, but just couldn’t wee. I got quite scared and soon needed to wee like a horse.Apparently this is not uncommon after this type of surgery, as they are so near the bladder, and have also put in pain blocks, so another catheter was inserted, and oh the relief. Eventually , at 8.30pm, I was moved to my favourite ward. My wound was looked at, and deemed very good, I was settled and ok.

I started being a bit itchy, which I had last time and they said I was allergic to the antibiotics, but I wasn’t on those. My cannula stopped working so they gave me morphine by injection. As soon as it was done, I knew it was the morphine. My arm went red with a largish white patch where the injection site was. The doctor had to draw around it to make sure it didn’t spread. Luckily all was fine and I was swapped onto Tramadol. I had a comfy night and in the morning was the doctors rounds. He was pleased with how it had gone, and said that my surgeon had found some infection in the stump still, so had put packing up there with antibiotic gel, and sewn me shut. The packing absorbs eventually.

I had on my sexy socks, and was told they would leave the catheter in another day then to see how I got on.I stayed one more night, then the next day, I thankfully had a wee, ( I rang round family to tell them the good news 😉  ) I was allowed home.

I decided to have a look at my wound at home. I was a bit shocked, if I thought my other scar was frankenstein-like, I was in for a shock. I had bruising, but the scar was long and swollen.No wonder I was having trouble sitting. It became a bit more uncomfortable as the days went on, but I managed to sit very wonkily. One cheek then the next until it was easier to get on the bed and lay on my side. Cleaning the wound was fun too, either in the shower with the spray directed onto it, or a very shallow bath to splash myself with.

It has now been 10 days, and it is not too bad.Slightly more comfortable to sit longer with, we have bought some foam to cut into a seat shape made from memory foam, I hope it works as I want to see my daughter perform at christmas at the theatre.

I have taken a photo of the wound, but am not ready to show all just yet. Watch this space.

I wonder what happened to whatshername…oh yes , me

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Back to stoma talk. Can’t be helped , this is me now , confused, sad, happy, weird , questioning, always questioning. Is it normal for ones emotions to jump about so much? I think I am used to having a stoma one minute, to pure fear with the thought of living like this for the rest of my life. For instance, have you thought about coping with a stoma when you are old? I have. I see older folk in the hospital with stomas, who struggle to cope now for various reasons, arthritic fingers, dementia, waiting for help from the busy nurses. For the nurses, it should be a dream patient, one who doesn’t actually shit the bed, but they would come with their own stoma issues. Only nurses who work with stomas all the time, truly know.

As of the 17th of this month, I have absolutely no way of going back ( I don’t now really, but I still have my bottom even though it isn’t connected to anything ). I won’t ever use the toilet for a poo the same way EVER again.I will always have Tomas, ALWAYS.

What about when my skin gets wrinkly and baggy, will the bags fit properly? We hear about the young people with stomas much more now, before it was very taboo, but why? didn’t anyone ask the mature stoma folk what its like? I don’t ever remember any stories or pictures of elderly stoma patients enjoying life. Maybe because they were just getting on with it, not worrying about what people thought. I would love to hear from an elderly  person with a stoma,( did you name it?,) and listen to their story. If anyone reads this, please let me hear your side of the stoma story.

Not sure if I am doing the right thing by being so open about my journey, but when I see others doing the same, I feel proud. ( and upset, I thought I was the only one being so graphic, then more people might read my blog, but alas….I am not alone).

Not long before I go under the knife again, am so scared of it all. I read up about it, sometimes wishing I hadn’t, sometimes glad that I did. It still feels a bit like a dream (nightmare ?) and one that I won’t be waking from.

I am feeling very morbid at the moment, I am sure it is because of the upcoming surgery, the winter drawing in, coldness etc… I feel isolated in my own mind, with my own thoughts. Will I be able to enjoy christmas? how much pain will I be in? eeek. If I am like this now, what will I be like the day before?. I need a sedative from now until then.

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I have had problems with peas lately.

They seem to bother Tomas. I end up very watery as the skins block the output, and it makes me feel just ugh . I have had them before though, so I think I don’t chew as well as I should the more I get used to it all. I had a small amount of mushy peas the other day, and I think even those are no good now, I assume that being mushy, it would go through no bother, think again. It makes changing the bag a barrel of laughs. I get through a million tissues. First time I have seen Tomas look like he is having a wee. Mums first comment on seeing it in the first place months ago was ” it looks like a penis” .Today it is a lot better, but I hate the fact I have to be careful what I eat, I have found going for meals, a pain in the barbie butt,( haha) I might love the sound of it but you can bet that there will be something used in the dish that could cause me problems. People who know me, know i like to eat so this is sad news.

I can’t wait for all the surgeries to be over with, not long now, hopefully my and my families life will take an upward turn for next year.

 

 

 

Now for something completely different

I have decided to put together some of my most favourite photos , some weird, some comical, some very normal but just different ,but mostly fun. Hope you like them, I will put a small description by them.

Thought I would have a change from bags and bowels.

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This picture is a wonderful rooftop view of Corfu town.

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A roof top ( theme here somewhere lol) of the bell tower in Riva Del Guarda31795_1347525572707_6540856_n

A cute bird in Corfu

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My boxer enjoying the Devon coast

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One of my favourites. Turkey.

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Albert and Misty, captions please

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Beam me up Scotty (poor mum )

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Beautiful tree in Barcelona.

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An amazing work of art, Barcelona

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Autumn.

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Just found this amusing,

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Totally reminds me of Greece

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Same reason.