My Periods and IBD by Guest Blogger Louise A.K.A. Crohnsfighting

This week I wanted to do a series of posts about periods and contraception.  Often, our chronic illnesses can affect these but it isn’t an area that has been looked into and a lot of doctors do not understand how much our lives can be affected by them.  I asked for people who could share their stories and the lovely Louise offered to share her experiences with you all.  Louise is an amazing friend and fellow host of The IBD & Ostomy Support Show.  You can visit her blog here and it is worth checking out her honest and informative posts.

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Hi, I’m Louise aka Crohnsfighting and have been asked by the lovely Natalie aka The Spoonie Mummy to write a guest blog to talk about the impact my periods have on me and my daily life.

I will also be writing about contraception methods used over the years to try and help me with what I call PMT week once a month.

I was a late starter with developing and periods. I didn’t gain boobs or periods until after I turned 14. Now this may have been a late start but until the age of 18/19 I never had an issue with them. They were fairly light but lasted the full 7 days and from the age of 15/16 I was on an oral contraceptive which was oestrogen based and I never had a problem with that. Apart from forgetting to take the blasted thing, it wasn’t an issue and because I was not sexually active until 17, the pill was just controlling my periods and not a lot else.

Contraceptives used

When I turned 18 I was in a long term serious relationship and to protect myself I was placed on the depo-provera injection. This was administered every 12 weeks so I didn’t get unwanted babies. This is when the fun and games started, it caused havoc with my cycles and periods. I would spot on and off for six weeks at a time and then have a full-on flood. The floods tended to happen at the most inappropriate of times and one of them happened whilst having “adult shenanigans” in a car.  I flooded the seat and his jeans and he spent the best part of 5 hours trying to get menstrual flow out of the car seat and had to throw the jeans he was half wearing at the time. The problem I had with the shot was that it caused huge weight gain and mood swings. I gained a stone and a half in a year and my moods were erratic.  The mood swings were caused by a hormonal imbalance but I wouldn’t discover this until 7 years later. Once coming off of the shot my weight returned to normal within a year, my mood swings stopped and my normal cycle resumed.

I was diagnosed with Crohns disease in 2003 and due to the extent of this I was unable to take oral contraception to help with the heavy periods as it was advised it wouldn’t work. I either had to have the implant or practice safe sex.

In 2009, I had my daughter Maisie and six months after having her I had the implant put in. The implant was a godsend as it stopped my periods completely but yet again 18 months later I had to have this removed. The reason being for this is because I punched my then partner in the face in bed because he pissed me off, and I couldn’t control my moods. He frog marched me down to the GP’S and said I had to have this removed as he couldn’t handle the moods I would suffer from. I would go from happy to black moods in the flick of a switch. Now this may have been because he was a total arse but hey, who am I to judge?

Due the reactions I had with these types of hormone contraception’s I was tested for hormonal imbalances and both the implant and the shot stop your bodies progesterone hormone and means your body thinks it’s in menopause and my body doesn’t like it. It was decided after that that I would no longer be allowed to have these due to the mood swings. At the time, I didn’t qualify for the coil and I needed to be safe. I finally, after much fighting, got the copper coil placed in 2014 as the mirena coil may have resulted in my falling pregnant.

My periods

My periods have always been pretty horrendous since the Crohns diagnosis. A week before my period I always feel like my tummy and uterus are going to blow up. The pain is excruciating and not to mention the swollen, sore boobs and the joint pain I get with it. My mood is rather testy as well and I want to sleep more. The diagnosis from my boyfriend and daughter is Mummy is being a bit short and please do your best to not piss her off.

I’ve been banned from using a hot water bottle as due to the amount of surgery I have had done, I burn my stomach as I can’t feel it on a regular basis.

I go through 6-7 packs of the always night ultra in a week. So, I average anything up to 80 sanitary towels in that week.

I have tried tampons but they make me feel sick and make the period pain worse. They also are not man enough to handle the monsoon that is my monthly period.

On average, I can flood my jeans 3-4 times in a day during the heavy period of that week. I make sure I stay close to home and wear dark colours.

Do I feel that IBD has affected my periods?

I can honestly say that yes, they have affected my periods. Due to the amount of scar tissue and adhesions in my womb and on my fallopian tubes, I have had consistent heavy periods since 2009 and they drive me insane. I feel women get it slightly worse, especially with IBD, as the hormones and the swellings impact our insides even more than if I was without the Crohns disease. Especially when your sat there wondering if it’s your period coming or a major flare up.

I have had some respite since November of last year as I had most of the scar tissue removed. However, the last month or so the periods are yet again becoming more like Niagara Falls and that normally means the scar tissue is making itself known again.

So this is way too much information to read on a guest blog but it’s something that isn’t commonly discussed and I feel that IBD does impact periods for those of us diagnosed .

Many thanks for reading

Louise xx

You can also follow Louise on Facebook, Instagram, Twitter and Pinterest.  Be sure to check out her delicious Thai Tuesday recipes over there too!

My Guest Blog for Rocking2Stomas

Check out the post I wrote for Rachel over at Rocking2Stomas about my youngest son Riley’s urology condition, hydronephrosis. This month is #urologyawarenessmonth so please help spread the word about these often invisible conditions

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http://rocking2stomas.co.uk/blog/51-guest-post-for-urology-awareness-month-riley-s-hydronephrosis-story-by-the-spoonie-mummy

Burnished Chaos

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.

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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.

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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

An Interview With Laura Zappula (a.k.a Stomalicious)

This week I had the pleasure of talking to Laura, who writes a blog called Stomalicious.  She appeared on The IBD and Ostomy Support Show at the end of August, talking about travelling with a stoma.  As we are discussing food this month I wanted to ask her about what she eats on her travels, how this affects her stoma and what weird and wonderful delicacies she has tried!

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1) Roughly how many countries have you visited and what would you say are your top three (I know you struggled with this the other night but I won’t hold you to your answers ha ha)

I am blessed to have travelled to around 46 countries in total in my life (so far!). Around 18 of those were with an ostomy! I love going back to places I’ve been before so several countries I’ve been to multiple times. I used to be a travel consultant and worked in the industry for over 10 years, so I have been lucky to have had some amazing trips tied in with that. It’s really hard to pick my favourites as I honestly love everywhere and each place is unique and has different things that draw me to it!

My last big trip before being diagnosed with Crohn’s disease was in 2009, and that will always be memorable for me for a number of reasons. I spent a month travelling through the Middle East before all the trouble really started in that region. Syria in particular will always stand out. It saddens me greatly to see the horror that has happened there. It is such a beautiful place and the people are so gentle and lovely. I remember an old Syrian man showing us around the market in Aleppo which is now nothing more than ruins. The fact that it was the last overseas trip I could take for a long time due to my health will always mean a lot to me too.

In the 10 months I spent travelling the world after my ostomy surgery, Turkey is another place I will never forget. Hot Air Ballooning above the fairy chimney landscape of Cappadocia at sunrise was a once in a lifetime experience. Incredible!

If I had to pick a third, it would either be somewhere in South East Asia, Southern Africa or Italy! I absolutely loved Vietnam especially trekking through the muddy hill tribes in Sapa with an ostomy, but I am equally enamored with Thailand where I have been multiple times both pre and post ostomy, including getting married on the beach in Koh Lanta! South Africa is another place I have been to both pre and post ostomy because my husband Michael has relatives there. There is nowhere else quite like Southern Africa especially when you’re out in the bush on a safari with wild elephants, lions, rhino, and hippo to spot. It becomes quite an addiction. On our last trip there we went to Namibia where we had quite an adventure at a watering hole when our cat battery went flat just after some lion had made a kill! I also can’t help but hold a soft spot for Italy! Again, I have been there both before and after my surgery, but travelling to Sicily with my dad earlier this year to the home town where he was born and grew up before moving to Australia, means that Italy will always hold a special place in my heart!

Carnival in Rio, an orangutan sanctuary in Kota Kinabalu, paragliding and ziplining in Cape Town, seeing my favourite band play live in Amsterdam, game drives in the African dessert, Macchu Pichu, the Taj Mahal, the Pyramids of Giza, seeing the Eiffel Tower, Central Park, the Colosseum, and Big Ben for the first time, all those iconic sights – I am truly blessed to have been to so many amazing places!

2) What were your top three worries about travelling with a stoma? Are any of these still worries now?

My biggest concern when I took my first overseas trip after ostomy surgery (a 10 month world trip – I don’t do things in halves!!!) was being away from my support network of family and doctors. I was relatively new to my ostomy, so leaks were also a bit of a concern. I am also a huge foodie so was a bit worried about being able to try all the amazing delicacies on offer around the world. I can honestly say that I needn’t have been concerned about any of these things, and none are worries for me now.

3) What were the top three foods you have tried from other countries that you wouldn’t get in the UK?

Living in London we are lucky to have SO many different cuisines at our doorstep. I think we’re pretty fortunate here in that most cuisines are fairly readily available. I’m yet to find really good/authentic Thai food in London though. Sushi is another fave of mine, but compared to the quality and price of a nice tuna or salmon and avocado sushi roll back in Sydney, I’m sorry but London doesn’t quite cut it! I’ve also tried some of the game meats (don’t judge me!!) in Southern Africa like warthog, kudu, ostrich, and biltong, all of which were surprisingly really good, and I don’t think you’d get them in the UK!!

4) What have been the worst dishes you have tried abroad?

I tried guinea pig in South America. It kind of tasted like chicken, but I couldn’t get the image of my friend’s pet guinea pig out of my head!!!

5) What is the strangest thing you have eaten on your travels?

I ate deep fried crickets in Thailand once. Thais eat fried bugs like a snack (like we would eat chips/crisps)!! It’s more just knowing what you’re eating that puts you off. If you didn’t know and had a blindfold on …. Okay well I reckon it would still be a bit strange, but I’m willing to try anything once!!!

6) We get warned about things like sweetcorn and popcorn causing stoma blockages. Have you had any issues with any foreign foods doing this that you weren’t prepared for?

Nope. I am very lucky with blockages and all those foods that we are warned about. I haven’t had a proper blockage in my 4+ years with a stoma. I just make sure I chew extra carefully when eating any problem foods, but I’ve eaten corn, popcorn, nuts, dried fruits and all sorts of foreign foods and have not had any problems. I did get a bout of food poisoning in Thailand once (I think it was from eating some bad chicken). I didn’t get a blockage, but had liquid output and couldn’t keep anything down for 48 hours. It’s quite strange having diarrhea when you have an ostomy bag!!!

7) If you had to pick the food from one country to eat for the rest of your life where would you choose and why?

It would have to be Italian. Italian food is always so fresh and tasty. You get delicious salads (I love a good Caprese with fresh tomato and mozzarella), plus pizza and pasta of course!!! Italians also know how to cook a good piece of meat with a side of delicious green vegetables, and of course Italian desserts like cannoli, pannacotta and gelato. TDF!!!!! Whenever we travel to Italy we have a policy of 1 x gelato every day (even if it’s for breakfast)!!! The secret is simple, fresh and uncomplicated. The fewer ingredients the better!

8) What is your favourite Australian vs your favourite English dish

We are very lucky in Australia that it’s incredibly multicultural so you get a lot of first class cuisine from around the world. Apart from the typical meat pie or pavlova, there really aren’t that many typical “Aussie” dishes. We have been trying to find the perfect chicken parmy in London (to no avail) but to be honest I never really ate them back in Sydney anyway. We did bring a jar of vegemite with us (but you can buy it here at Asda nowadays)!! I would have to say my favourite Aussie dish is vegemite toast, and you can’t go past a good old Sunday roast in the UK!

9) What is your favourite thing to cook at home?

Whilst I love to eat, I am not the world’s greatest chef, and I am happy to admit that my husband does the majority of the cooking in our household!!! I make a pretty good salad, and if I had to cook something hot it would probably be a vegetable quiche.

10) What is your go to comfort food?

I’m a bit of a sucker for pizza, or anything with white chocolate, coconut and/or salted caramel!!!

11) What is your favourite breakfast food?

Museli and yoghurt. I didn’t eat muesli for several years when my Crohn’s was really bad (for obvious reasons) but I am now back to my regular week day morning ritual of natural muesli (including dried fruit, coconut etc) with a nice dollop of full fat Greek yoghurt. Delish!!! Once again, as long as I chew extra carefully, my stoma has no problems processing all that fibre and dried fruit goodness!!!

12) If you were taking part in The Ostomy & IBD Support Show #maSTOMAchef challenge what is the one ingredient you would pick for us to try/cook with that you haven’t eaten or cooked with before?

There aren’t many ingredients that I want to try/cook with that I haven’t already, but for the purpose of this challenge, I will say fennel. I love raw fennel, fresh, cut up through a salad with some nice orange wedges or just as a snack on its own. I’ve also tried a few different variations of cooked fennel, but I am yet to find a recipe with cooked fennel that I enjoy as much as raw fennel. Challenge on!!!

This lady has given me a serious case of wanderlust!  My mouth is watering too!  I am taking up Laura’s challenge and will post the results in an extra #maSTOMAchef post.  Thankyou for taking the time to talk to me Laura, it was such a pleasure to hear about your adventures.

You can visit the Stoma-licious Facebook page here

Watch Laura on The IBD & Ostomy Support Show here

Pregnancy With An Ostomy By Guest Blogger Stephie from Colitis To Ostomy

The lovely Stephie over at Colitis To Ostomy and I have written posts for each other’s blogs today.  She has written about pregnancy with an ostomy as it is something I wanted to talk about but is not something I have experienced!  Many people worry that having an ostomy means they will not be able to have children, which is not the case, as Stephie proves!  Let me know what you think and pop over to Stephie’s blog to check out my post over there!

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Pregnancy with an ostomy means momostomy

I find a lot of women ask about whether they can still fall pregnant with an ostomy. I am living proof that you can! With any surgery however can come risks; especially if you have abdominal or pelvic surgery as everything is somewhat linked. However unless you have been told by your surgical team that your fertility has been affected whether by adhesions or other complications/reasons, you should be able to conceive. Stress has to be in my opinion the biggest fertility killer, it took 2 years for me to conceive with Lyra-Beth (Ra-Ra) my eldest daughter who I fell pregnant with whilst having a jpouch. I used to track my ovulation, basal temperature and cried every time my period came so clearly that was a big factor for me.

Just before I became sick again with Pouchitis we had decided to try again for another baby, I had the implant removed and just decided to roll with it rather than stress over whether we could fall pregnant again or not. I guess already having Ra-Ra made it less stressful in a way because all my time when not at work was devoted to her.

I ended up becoming so sick I had to make the decision to hold off on falling pregnant so I could have my end ileostomy formed. It was quite worrying at the time because we weren’t very careful with contraception and I really needed my surgery. However we got to my surgery date and weren’t pregnant so I could breathe a small sigh of relief.

We were quite shocked to find out we fell pregnant within two months of my surgery, sadly that pregnancy ended in early miscarriage in the August and was probably the hardest thing I have ever had to deal with. In all honesty I probably am still dealing with it but as they say time is a great healer.

We were told to leave trying again until I had had a period and by the October we were pregnant again! I was really anxious that this was also going to end in miscarriage but thankfully on our 12 week scan we were blessed with a healthy looking baby on the monitor. I was able to breathe another sigh of relief and begin to feel positive about my family growing from 3 to 4.

I was looking forward to having a natural birth this time, as with Ra-Ra we were told that due to not having a temporary ileostomy with my jpouch (I do NOT recommend that) it was a bit risky as my pouch never really healed properly I had to have a caesarean. With both a jpouch and an ileostomy there is no generic reason why you can’t have a natural birth and be monitored a bit more.

You may experience more blockages as you progress through your pregnancy as I found that babies find intestines quite a comfy pillow! But as uncomfortable as they are I found once baby shifts position they quickly pass but just be wary of that fact. I didn’t have many issues with my stoma during pregnancy except my output went a bit crazy and because a lot of obstetric consultants and midwives don’t know about stomas I was limited on my loperamide but you can to an extent manage your consistency through diet such as starchy foods like potato, white pasta etc.

Other issues to be aware of are that as your bump stretches so does your stoma, so frequent sizing or seeing your stoma nurse is definitely advised. If you have had open surgery it can affect how your bump stretches and can be fairly painful, plus and scar tissue or adhesions in general can make your pregnancy pretty uncomfortable at times but heck the baby at the end of it is most definitely worth it! Also your intestines can contract (you know when your stoma moves? Yeah that’s contracting)

normally that isn’t an issue but when you’re pregnant because the space is being taken up by a baby everything obviously becomes squished so you sometimes can notice it more. If people told me that when I was pregnant with Ra-Ra I don’t think I would have been quite as paranoid (first time mums always are and it’s nothing to be ashamed of as it’s the unknown!)

My scar tissue etc pains didn’t affect me till I was about 27 weeks and by that point I had had enough, you are pretty limited to pain relief when pregnant plus some people with ostomies can’t have certain types of pain relief due to coatings etc. So I in the end opted for a caesarean because I was becoming quite low in myself and just wanted it to be over in reality, I don’t cope well during pregnancy. Some women do and some don’t but it all depends on you really.

All of my scans went well and showed we were having a boy which Ra-Ra finally had warmed up to the idea she may not be having a sister. As she had been saying “I don’t want a poo poo brudder” typical 3 year old mindset there! I was literally pouring over the apps to find out silly things like how big his feet might be and what stage of his development he was at.

Throughout my pregnancy we tried to involve Ra-Ra as much as we could; she came to the first two scans, helped clean/build nursery furniture, and picked his first blanket and teddy, sung/spoke/read to my bump. I think that they really helped her feel involved and allowed her to bond with Button before he arrived.

Unfortunately for me I was admitted into hospital the week before he was due; we thought I was in early labour as I had dilated a little bit and was having contractions. My parents took Ra-Ra pretty much for the whole week I was in. I went from maternity assessment to labour ward to maternity in the space of a few hours which was a thorough pain in my permanently out of order butt! Even more so when I was kept in because of “hypersensitivity to pain” what kind of BS is that? I still had to wait till the scheduled date as well which in my opinion if they just brought it forward they would have had a bed free!

So fast forward to his birth, I’m not going to go into the full details as it was pretty traumatic for me due to unprofessionalism but there is a post on it on my blog under the category “momostomy” which is where I post all my parenting/pregnancy stuff. But he was born happy and healthy to +44 – When Your Heart Stops Beating, which to anyone who doesn’t know the song it’s much nicer than the title suggests!! 00Steve (my husband) got the first cuddle and placed him on my chest just like he did with our daughter. He weighed 6lbs 15oz and looked just like his big sister, Jacob Terrence was the perfect fit for us and when Ra-Ra came to meet him his eyes opened and his head snapped round looking for her. Clearly love has no boundaries it just knows.

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If you are having a caesarean make sure you take a spare bag in with you and tell the midwife or one of the surgical team. They removed mine and put on a flat bag they cut to 40mm which is a bit risky if you nothing about ostomies, because I need a convex bag and not to mention my stoma was only 30mm maximum! Thankfully when we got back to the labour ward I rang my stoma nurse as she sometimes works at the hospital I was at, even though she wasn’t there that day she rang the team there who came down and sized my stoma, even put the bag on for me and put my mind at ease.

Communication is definitely key when you are being seen by a different department because let’s face it even though it’s annoying, people can’t know everything and they are in a specialist area for a reason. So my advice on that is to ask questions, write them down and the answers go back to the other team and do the same so you have a better overview of your care and situation.

I am currently 14 weeks post partum and even though I have been lucky to have lost my baby weight and then some (!) my belly is still pretty wobbly and I’m struggling with leaks, after discussing with my stoma nurses we have decided to just plod on until my body settles down because rings and paste isn’t making a great deal of difference.

If you have any questions you can either read my blog (colitistoostomy.com) drop me a message on Facebook, Instagram or Twitter, or watch some of the videos I have posted on YouTube. If you are trying or thinking about having a baby, ostomy or not, I wish you all the “baby dust” and luck.