An Interview With… Jamie Pearson

Through blogging I have met some incredible and brave people.  During the course of me appearing on The IBD & Ostomy Support Show, I met Jamie.  He lives not far from me which was an obvious starting point for a conversation.  He has become a good friend and is always there for a chat and check in.  I asked Jamie if he would answer some questions about himself and his diagnosis/surgery from a male perspective.  He kindly agreed and so here we go!

screenshot_20180416-185354.png

Can you introduce yourself and tell us about your diagnosis?

My name is Jamie & I am living in Derby. I am a massive football fan & love teaching it and playing. I an a laid back person who is ambitious. I was told I have Ulcerative Colitis over 8 years ago.  All the symptoms started with me injuring my toe nail & being on a long course of antibiotics. The bleeding & constant toilet trips all happened a few weeks after my toe nail surgery.

What surgery have you had as a result of your IBD?

I had my surgery October 5th 2016 for my stoma & left my rectal stump in, in case I wanted a j-pouch created. My surgery was planned after all medications were tried & failed. I was at the stage where I couldn’t go on with the pain and was bed bound.

jamie

How did you feel when you were told you would need a stoma formed?

That first moment I was told I would be having a stoma, I just didn’t take it all in & I felt so scared.  I was thinking does it stink and how will I live a normal life? Then the stoma nurse explained everything and I felt so much better.  Of course I was still scared but at the same time I was now prepared for a new life with my stoma.

Do you suffer with nay other health problems connected to your IBD?

I suffer with depression from IBD & surgery for my stoma. A month in hospital with 2 operations & not getting answers just really knocked me down.  I am now on anti-depressants which are helping.

What do you think are some of the issues men face when dealing with this illness/surgery?

The issues I feel for myself & other men with a stoma or illness is confidence in going out places.  For example  – can anyone see my bag & what do I wear? Also dating is scary. Explaining you have an illness or a stoma & getting into a sexual relationship is difficult to navigate.  The first time you have sex after surgery is a big step.

Screenshot_20180416-185325

What advice would you give to others facing ostomy surgery?

Advice I would give for anyone having surgery is it isn’t the end of the world having a bag. You still can be normal & achieve anything in life. It won’t be easy, but in my case I have become a much stronger person & my confidence is so much better. Also, good support groups are around online. The IBD & Ostomy Support Show I think is amazing on YouTube, as well as the group on Facebook.

You have more surgery planned.  What is next for you?

I have surgery planned for June which is the rectal stump removal to make my bag permanent.  I have been told if I have a J-pouch made it would just collapse.

Have you continued doing the things you did before surgery since having your stoma?

Since my first surgery it took some time but I’m basically doing most of the stuff I did before.  Playing football was a big one but I did that & was so happy.  I would advise whatever you do just rest after you have done it. But yeah, I can do anything I used to do since surgery. I started my blog from seeing yourself & others share their stories. I just wanted to share my experiences and what I went through & if it helps just one person then I am happy.

jamie2

Thank you for answering these questions Jamie, I am so grateful!  Jamie can be found on Instagram and he has started documenting his journey through his blog – The Stoma Guy Blog

Please get in touch if you have a story to tell.  I would love to share other Spoonies and parents stories over the coming months, just fill out the form and I will email you back as soon as I can

NatalieThe Spoonie Mummy

Blog Series – Conditions Associated With IBD – Fatigue

Welcome to my new blog series which is all about conditions associated with IBD.  Many people see Crohns and Colitis as ‘pooing’ diseases, which is actually only part of the problem.  IBD can cause many other symptoms and conditions which may need treating with more medication, surgery, or may just have to be tolerated by the person suffering.  I have been very grateful to the many members of the IBD community who have shared their problems and experiences with me.  You will see interviews and quotes with these people throughout the posts to help show what effect these extra conditions and symptoms have on people.

Fatigue

fatigue2.jpg

The first symptom I have chosen to write about is fatigue.  Not only does IBD itself cause fatigue, but so do many other related IBD conditions including anaemia, anxiety and depression.  Regular blood tests should be carried out to check levels of nutrients including iron and B12, especially when you have an ileostomy, as they can drop easily and you may need supplements or infusions.

I have to have vitamins A, D, K and B12 checked every twelve months because the Colesevelam tablets can lower the vitamins in the body.  I have B12 injections every 12 weeks because after having my first ileostomy and having 80% of my colon removed I stopped producing B12

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

I find fatigue one of the most difficult symptoms of my disease to cope with.  Fatigue is not the same as tiredness.  When you have fatigue, you wake up still tired.  Taking a shower zaps you of all your energy.  Sometimes you sleep for hours and doze the day away, but it doesn’t seem to make a difference.  I desperately want to do more at times, but my body just won’t let me.

Fatigue affects me mostly through work and travel.  I had to quit a job I loved because the travelling was taking it out of me.  I’m now working close to home but they are not so understanding of my needing more toilet breaks or my fatigue or how sometimes I just can’t function.  I have no social life whatsoever because after a full days work I almost physically can’t move and at weekends I am still recovering

Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole

Having an ostomy can also affect your sleep, something they don’t warn you about before surgery.  I struggled at first as the disturbed sleep was hard to get used to.  I generally need to empty my bag at least once during the night and often need to ‘burp’ my bag multiple times, as I seem to get terrible wind at night time!  This does get easier the longer you have your ileostomy and is something you do get a bit more used to, but some people still struggle immensely with this.

I don’t get a good night’s sleep because I wake after 5-6 hours to check my ileostomy bag doesn’t need emptying

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

Fatigue affects every area of your life, including work, social life and even the everyday tasks like shopping and cleaning you have to do.

Fatigue has been affecting me every day for the past month.  I can only just manage to go to work and do what I need to do

Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More

Things That Can Help

Unfortunately, there is no magic remedy for fatigue.  Rest helps, but often after a good night’s sleep you can still wake feeling exhausted.

I don’t know what could be done to help except sleep but that can be hard especially if I am at work.  I find it is one of the hardest symptoms to overcome

Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)

The NHS Choices website has some great self-help tips for fighting fatigue here.

They suggest

  • Eat more regularly, smaller and healthy meals and snacks
  • Exercise
  • Lose weight if overweight
  • Sleep well
  • Reduce stress
  • Talking therapies (counselling, CBT)
  • Cut out caffeine
  • Drink less alcohol
  • Drink more water

I try and rest as often as I can and do things little and often.  It’s important I don’t over do it as it set’s me back to the start and I find myself worse off than I originally was

Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More

Ensuring you have had up to date blood tests is also a good idea, so deficiencies and problems like an under-active thyroid can be ruled out if the fatigue is severe.

There isn’t much that helps I’m afraid.  Drinking plenty of water, listening to your body and getting checked for anaemia/vitamin deficiencies.  Taking iron supplements has helped a little

Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole

Personally, I try and plan my weeks so I have plenty of rest time, especially when I have a busy or full on day coming up.  Daily, I have lists of jobs that need doing, and ones that I would like to get done.  Routine is very helpful.  If I push myself too hard, I know the next day I would really struggle to even get out of bed so it really is not worth it.  I find setting an alarm (NOT snoozing it) and getting out of bed at the same time every morning helps me feel more awake, as does doing a bit of exercise first thing.  If I let myself slouch on the sofa I find myself feeling worse, and after that initial feeling of grottiness goes away, keeping busy does tend to help.

fatigue1

A good night time routine is also key.  Switching off in this digital world is hard but really helps me unwind and get ready for sleep.  I love to read or will possibly watch something on Netflix in bed.  I have a ‘do not disturb’ setting on my phone which turns off my notifications which is easy to do and makes sure I am not distracted while winding down.  Lavender candles and pillow spray, a relaxing bath or shower and sometimes a nice pampering face mask also help me to relax.

As has been said, by me and the people I spoke to – fatigue is one of the most challenging symptoms that affects all aspects of your every day life and there is no easy fix.  Hopefully, you will have read some tips and tricks that you haven’t tried that will help here.  Please comment below with how you try and tackle fatigue, I would love to read some more ideas and share them with my readers

 

 

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 – Jasmine Stacey Collection

Well, where does any good outfit start…with the underwear of course!  Jasmine Stacey has Crohn’s disease and aged 20 was operated on giving her a permanent ileostomy.  After her operation she tried to seek out sexy, pretty underwear that she used to wear prior to her surgery and struggled.  She was determined to help other women in her situation.  Jasmine was accredited by the London College of Fashion in 2011 and designed her first underwear collection in 2013.

 

Her vision for her brand on the Jasmine Stacey website sums up her brand completely –

Flattering while being sexy, provocative without being flimsy – Jasmine Stacey is the
ultimate lingerie for those who need a little more confidence in their underwear. 

Whether they have the challenge of scars; ileostomy, colostomy or stretch marks; or simply prefer
more tummy control, our stunning collections empower women to be who they want to be.

 

Following my ileostomy surgery in April 2016 I was lucky enough to be visited by Lauren from Purple Wings Charity (https://www.facebook.com/Purple-Wings-Charity-1395856707348227/).  Her charity aims to support people with stomas through IBD regain their confidence.  They offer grants to help people accomplish this.  I was lucky enough to be the recipient of one and was given a Jasmine Stacey Collection voucher.  Lauren knew one of my biggest fears surrounded clothes and what I could and couldn’t wear with the bag and having come out of a marriage only a few months before was pretty newly single, so this was perfect for me.  It also gave me something to do while I was recovering in hospital, perusing the website for what I wanted to order!  I settled on two sets of bras and knickers and when they arrived I was absolutely thrilled with how beautiful and what good quality they are.  This is me just under two months post surgery in my Black Classic Highwaisted Briefs and I also ordered the Ivory Classic High Waisted Suspender Brief too.  The ivory pair are crotchless so perfect for intimate moments if you are still feeling a bit worried about having your bag on show.

 

The underwear offers amazing support without feeling too restrictive.  It flattens out your tummy so you can wear dresses and things much more confidently without feeling like your bag is sticking out.  I feel absolutely amazing when I wear mine, they make me feel beautiful and confident for any occasion.  I was lucky enough to get a grant as I said, otherwise the range is a little on the pricier side.  I do think the price reflects the quality and design of this underwear though, and if you purchased just one or two pieces they would be well worth the money.  It’s probably not something you would want for every day but is perfect for special occasions or perhaps date night!

 

You can check out the Jasmine Stacey collection website at

https://www.jasminestaceycollection.co/

and on Facebook at

https://www.facebook.com/JasmineStaceyCollection/

Feel free to message them too as they are extremely helpful with sizing and other available options.  Happy sexy shopping!