Sex With An Ostomy (and numerous other health issues)

So after doing the deed the other night I couldn’t help but lay there giggling.  Luckily, it wasn’t a reflection on the sex which was, as always, very good, but I realised that between us me and Ste had ‘on’ two ostomy bags, a Peg-J tube and three heat pads.

I see many people on ostomy support groups siting relationships and sex as one of the most worrying aspects about their diagnosis or getting an ostomy.  I want to tell you – DON’T!

I am not going to go too far into the relationship side of things, other than to say anyone worthy of your time and love should not and will not care if you have an ostomy.  Prior to meeting Ste but post surgery, I was dating and I told a couple of guys I went on dates with about my bag.  They were both very supportive and lovely about it.  We didn’t get as far as the bedroom, but the fact they were willing to see a possible romantic future with me regardless, meant a lot.  I think being upfront and honest from the start is important.  Although not an easy subject to broach with a relative stranger, you will not be pursuing something and start developing feelings for someone who can’t handle it.

And there will be people who can’t handle it.  I now get to see both sides of the relationship as someone with chronic illnesses and as a partner of someone with chronic illnesses.  Believe me, however hard it is dealing with your own medical issues, watching your partner go through it is so, so difficult.  I think people who are told early about someone’s medical conditions and decide they cannot, for their own reasons, begin to pursue a relationship, should not be vilified as long as they are kind and honest.

So, the bit you have all been waiting for… the sex!  Well I am not going to say it is easy by any stretch of the imagination, but with the right person it really does not matter or interrupt proceedings at all.  I don’t even notice my bag, or Ste’s when we are in bed.  A couple of times we have had to adjust positions due to getting tied up with his PEG-J line but we generally just laugh about it and normally make a joke about tying each other up.

tied up

As a woman I have the general body worries – my ‘mum tum’, if I haven’t had chance to shave, my morning breath.  My ostomy bag is pretty low down the list of worries when it comes to having sex.  I am no expert but I have my own experiences to draw on and thought the easiest way of answering some of these which I see people asking about, would be to write a list.  So here are my ‘top tips’ and I hope they help!

My Top Tips For Sex With An Ostomy

EMPTY YOUR BAG – I always empty mine before getting into bed anyway, but the last thing you want is a bulging sack of poo between the two of you while you are trying to feel sexy.  Obviously, if the moment takes you by surprise you might not have had chance, but during the day you will be regularly emptying it for comfort anyway.

SELF – CONFIDENCE – This is probably one of the hardest things to master.  Being body confident and feeling sexy with your bag may take some time but with the right partner and some time you will get there.  In the mean time there are a couple of things you could use to help!  First up – sexy underwear.  The Jasmine Stacey Collection has been designed by an ostomate who knows what it is like and it is stunning!  Some of the pieces are even crotchless, so you can keep your bag covered up while still enjoying yourself, if that makes you feel more comfortable.  Jasmine designed the range as she was fed up of high waisted underwear which is perfect for ostomates, being boring, practical and unsexy.

Check out the Jasmine Stacey Collection website here

You could also try a bag cover.  Ostomy bags can generally look a bit clinical, so why not cover it up with a pretty cover (if you are really good, you could colour co-ordinate to your underwear).  I have previously bought covers from Stoma Style and can highly recommend them.  Lisa is fantastic and can help design you something amazing – the link to her Facebook page is here.  The lace heart bag cover design is a particularly good one for sexy time and there are lots of colours available.

FORGET ABOUT IT – This may sound easier said than done but when you are with your partner, you should be focusing on them, you and the moment, not worrying about other things.  Enjoy the moment.  Being intimate is all part of a healthy relationship and can definitely still be loved and enjoyed, even if you have an ostomy.

TAKE YOUR TIME – Don’t feel forced to rush into anything and make sure you take time to heal if your surgery has been recent.  The last thing you want to do is cause further issues.  Listen to your doctor’s advice for how long to wait post surgery and then only do it when you feel ready, you may need a little longer,  There are plenty of things you can still do to be intimate in the mean time even if you don’t jump straight in with full sex straight away.

BE PROUD OF YOUR SCARS – There is a story to everyone’s scars.  A journey you have been on.  Be proud of them, proud of what you have battled through and your victory.  Your partner may have been by your side during this battle and will be equally as proud as you are of them

EXPERIMENT – You may need to try different positions, especially at first while your body is still recovering from surgery.  Any persistent or severe pain needs to be reported to your doctor though to be checked out.  Having arthritis too, I have to be careful when my joints are bad but I am still able to enjoy a great sex life and so should everyone.

So I hope my list will have helped some of you.  Given you ideas of things to try or just the knowledge that people with ostomies (as well as other health issues) still enjoy a happy, exciting and regular sex life, no matter what the circumstances!

Please feel free to ask questions in the comments below and I will try my best to answer them but please go forth and enjoy some sex today with less worries and hang ups!

 

Urostomy – The Middle Child Of The Stoma Family by Guest Blogger Rachel A.K.A. Rocking 2 Stomas

Rachel is a great friend of mine who I also co-host The IBD & Ostomy Support Show with.  She has an ileostomy like me but also a urostomy so is known as a ‘double bagger’ in the ostomy world.  Rachel is extremely knowledgeable and does an amazing job advocating for other ostomates.  She is working immensely hard to raise awareness of urostomies.  September is urology awareness month and as my youngest son suffers from a urology condition, Rachel is sharing his story on her blog.  I asked if she could write a post for me with some information for people who don’t know much about urostomies.  She has taught me an awful lot through reading her blog and I am so pleased to be able to call her a friend.

rach 4

Urostomy – The Middle Child Of The Stoma Family

Hi I’m Rachel and I blog over at Rocking2Stomas and I am what’s known in the ostomy world as a ‘Double Bagger’. I have an ileostomy (formed in 2012) and a urostomy (formed in 2015) due to a rare neurological disease called Pure Autonomic Failure. Having both types of stomas I have seen a HUGE DIFFERENCE in the level of awareness and information available to urostomates.

My bladder failed at 21 while I was working in a busy Radiotherapy and Oncology department treating cancer patients with radiation. I started getting lots of UTIs and my bladder stopped emptying properly. I was taught by the urology specialist nurse to use Intermittent Self-Catheterising (ISC) a few times a day, which was a nightmare working in a busy hospital. In the end this stopped working and I was given a urethral catheter where the bag was attached to my leg. It was at this point I had to resign from my job because it was a nightmare to cope with and the spasms were horrific. It felt like my bladder was giving birth to my catheter and was extremely painful. In the end I was given a Supra-Pubic Catheter (SPC) which goes through the gap in the pubic bone into the bladder. Although this was better, it was not ideal and eventually after 6 years of this it took its toll on my bladder.

In 2015 I had a routine cystocopy to check my bladder and it was in a really bad way. My bladder was extremely small, very damaged and the results of a biopsy showed that the cells had started to mutate. Therefore, within 2 weeks, I had my bladder and lymph nodes removed and a urostomy formed. My life is 1000 times better now than it was with the SPC, and even as a double bagger life is so much better than it was.

rach

So What Is A Urostomate?

A urostomate is somebody who may have had their bladder removed and a urostomy (medical term Ileal Conduit) formed due to urological disease, trauma, neurological conditions or birth defects. 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 the conduit and the surgeon brings the segment to the surface of the abdomen to create a stoma, where the output is collected by a pouch. It is important for me to point out that there are different urinary diversions that surgeons may perform. If you would like to know more about this please read this post.

Top 5 Points Every Urostomate Should Know

Here are my top five things us middle children should know:

1. Use a night drainage system at night! This is recommended for urostomates, however, I am aware that not everybody will use a night bag and prefer emptying their pouch at night compared to being tethered to the bed. Although this is personal preference all literature suggests that it is advisable to use a night bag, due to any potential reflux of urine back into the kidneys when your bag is full and you do not wake up. Also because the urine may be sitting there for hours there is a higher chance of getting urinary crystals on your stoma.  See my post about urinary crystals here.

2. Change your night bag and connectors regularly every 5-7 days.

3. Always make sure you have night bag connectors in your hospital bag as they are like gold dust when you get admitted!

4. Change your urostomy pouch in the morning – through experience I have found it is far easier and less messy doing it in the morning. I do it before I start drinking, as it tends to be more active than my ileostomy, especially if like me, you drink a lot!

5. Preparation is key when changing your pouch – having bags cut ready etc is handy if your urostomy is particularly active.

I hope you have found my tips useful.  Please follow me on Twitter, Facebook, Instagram, YouTube – Rocking2stomas Vlog and Pinterest – rocking2stomas

Bag Leaks

The past month has seen me suffer from about six full blown bag leaks.  By full blown I mean that I haven’t noticed it start slowly and output has leaked onto my clothing, and at night onto bedding too.

Since starting to use the Salts bags about eight months ago I haven’t had any.  I have been super lucky in finding a bag that works so well for me.  The leaks I have had recently have been down to my hernia making the area around my stoma not flat anymore, the warm weather and extremely sore skin due to the previous leaks, which then creates a vicious circle.

Having a leak can make you feel seriously demoralised.  I get mad at myself as maybe I didn’t concentrate enough when I was putting my bag on.  I get upset and feel dirty.  I get annoyed and resent my stoma, especially when I get a bout of them like this.  It can also be really embarrassing, especially when in public or in bed with your partner.

Luckily, Ste also has a stoma and knows all about these feelings too.  While still using my old type of bag, and not long after we got together, I had a huge leak in his bed.  I was mortified but he was amazing.  He grabbed me stuff to clean up with and change my bag.  He then stripped the bed and put fresh covers on.  Then he went down and put the sheets in the washing machine and brought me up a cup of tea.  It was so reassuring and lovely and I couldn’t be more grateful of how he handled that night.  Not everyone has such as supportive partner so I feel extremely lucky.

So, what to do when you have a leak?  At home it is a little less embarrassing and you have all your stoma supplies and clean clothes to hand.  I suggest rinsing any soiled clothes and getting them in the washing machine as soon as possible to try and prevent staining.  Me and Ste both have the waterproof mattress protectors on our beds to prevent anything getting onto the mattress.  I got mine from Asda.  My delivery company, Bullen, also supply bed pads as a complimentary item.  These are great to take when you are staying away from home.

I always carry an emergency kit in my handbag or car.  I manage to fit enough for 3 bag changes in mine and have 3 bags, scissors, adhesive remover spray, hand sanitizer, barrier wipes/spray, rubbish bags, a small pack of wet wipes, a few dry wipes and some tissues.  I don’t always take a change of clothes around with me as I don’t like having to take a massive bag out everywhere I go.  I did for the first few months until I felt more settled with my stoma and found a bag which suited me.  It is always handy to pop a spare outfit in your car though, especially if you will be out for a whole day or far away from home.

As for how you deal with it mentally, all I can say is it does get easier the longer you have your ostomy.  I don’t think I will ever be ‘ok’ with it happening.  I can, for the most part, handle it better now as changing my bag comes more naturally which makes the whole process quicker and easier.  When it happens a lot in a small space of time you may start to feel down.  Try not to blame yourself.  Speak to your stoma nurse.  It may be a case of needing your stoma remeasured or to try a new product and they can help and advise with that.  And you may hate your stoma for a while (Stanley’s name changes to ‘Shitbag’ when I am in a mood with him) but remember the reason it’s there. I may not have been here today without it.  My stoma has given me a new lease of life and for that I will always be grateful, leaks and all.

 

Dressing With An Ostomy – My Story With Clothes Since Surgery

WithI found out I was having surgery and an ileostomy the day before it happened, It all happened pretty quickly but as I had been a member of a few IBD support groups for about 8 months by then, I felt a little calmer and more assured after seeing so many amazing people still living their lives post ostomy surgery.  The stoma nurse came in and drew the black circles on my belly the morning of my surgery.  She explained they would try and place it so that it wouldn’t interfere as much with clothing, waistbands etc.

My recovery post surgery went pretty smoothly,  My stoma started working really quickly and my stoma nurse was coming every day to help me change my bag which I was slowly getting used to.  I was being allowed to eat and started gaining some weight.  My next thought was, once I have to lose the PJ’s what the hell am I going to wear with this?  Not only did I have the bag to contend with, I was still swollen from the surgery too.

I have always been a girlie girl.  I enjoy getting dressed up and doing my hair and make up.  I think as I have been poorly since being a baby, it has been one way I make myself feel a little better about myself and a bit more confident.  I can cover up my under eye circles, I can moisturise the dry patches, I can put on my a fierce outfit and pair it with a special necklace which means a lot to me. I don’t look as much like a sick person I suppose!

So I started online shopping from my hospital bed, first purchasing a pair of high waisted leggings and a pair of high waisted trousers with a couple of new tunic dresses to try them with. When I got home I sorted my wardrobe and threw out a lot of my old clothes… short tops which wouldn’t cover my bag so I thought I wouldn’t be able to wear them again and alot of my normal jeans as I felt these would just be so uncomfortable I thought I would have to be in leggings for the rest of my life. I had got on better with the high waisted leggings but did not find the trousers comfortable at all. I resigned myself to tunic dresses, long and baggy tops and leggings and although you can buy some nice ones I found myself wearing the same things over and over.

Then one day, a few months post surgery, on a trip to New Look I saw the jeggings which I had bought before and had a thought. The high waisted trousers I had bought were too restrictive and felt uncomfortable, especially in those first few weeks after my operation. But the swelling had gone down and I was a good size 8 (whereas I had dropped to a small 6 before the surgery). I picked up a pair in a size 10. They looked like jeans, but had a little more stretch to them and with being that little bit bigger went over my bag no problem and without feeling restrictive. I felt like I had had a minor breakthrough! I have since purchased jeggings in black, light blue denim, dark blue denim and white. They are a staple in my wardrobe and I couldn’t recommend them more to people with ostomies who struggle with the restrictiveness of high waisted trousers and jeans. You can also buy low waisted jeans to wear underneath your bag with a long t-shirt as another option!

I still tended to wear longer tops but the last few months and especially with the weather getting warmer I’ve started experimenting with shorter tops. As I can wear the jeggings over my bag it’s still not on show and I’ve got more and more confidence as time has gone on.

Next – dresses and skirts. Dresses through the winter weren’t an issue as I would normally wear my high waisted leggings (I recommend the New Look ones by the way!) or tights underneath. I found when I went to go to a family party that I struggled to feel comfortable in the dress I had chosen as I felt my bag was sticking out. That’s when my Jasmine Stacey high waisted knickers came to the rescue. They smoothed out the lumps and bumps created by my bag and gave me the little extra support that I normally get from leggings or jeggings. I instantly felt better in my dress once they went on! I’ve also recently bought a couple of skirts which I wear up around my waist and tuck my vest top in. I feel this is another small step forward in confidence and as the skirts are a nice cotton material and not as tight, you can’t see my bag at all. The pleated skirts are great for this. Result!

Playsuits are also one of the comfiest items of clothing I find in this weather! No worries about the bag showing and not restrictive at all. Extra comfy for those bloated days and there are some super pretty ones about!

cof

And last but not least…you can always wear your bag out and proud! This is how I was dressed on a trip to IKEA the other day. It was hot, I didn’t want my bag tucked in my shorts so I popped in one of my amazing bag covers from Stoma Style and went for it! Nobody said anything and I didn’t see anyone overly staring either. But then I was in IKEA, one of my favourite places, and looking for house stuff so maybe I didn’t notice!

cof

I’m sorry I’m unable to give as many tips to my male readers but Ste has told me that the longline t-shirts in Primark with the curved bottom are great as they are low enough to cover his bag and there are some really nice ones at good prices!

The purpose of this post is to hopefully inspire some new wardrobe choices, show that you can wear anything you wore before surgery with a little time and some growing confidence and that a stoma does not mean you are stuck in leggings for the rest of your life! I hope the amazing photos I’ve been sharing this week have given you more ideas. Thankyou so much to all the ladies who have sent me photos! The men are welcome to join in too!

If you have any questions or would like some advice or support I am more than happy to try and help. Either pop a message in the comments or PM at http://www.facebook.com/thespooniemummy

One Hull of a Dad

Dressing With An Ostomy Week – Bellies Clothes Donate or Swap Group

Has anyone heard of the Bellies Clothes Donate Or Swap group?

People with IBD can often be affected by unintended weight loss and gain due to their disease or medication. This affects the clothes size you wear and often results in your wardrobe being half full of clothes you can no longer wear.

Two lovely ladies, Sarah and Brenda, decided that everyone in this situation could potentially help one another and the group was born. It has become super successful and helped a lot of people with IBD. People generally post clothes I they no longer want or fit in and other people can ask for them, paying just postage for the items. They also accept donations from people wanting to for the Get Your Belly Out charity. If you have IBD and would like to check out the group I’ve posted the link below.