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!

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

A New Opportunity!

So yesterday I told you that I had some exciting news to share and here it is!

I’ve been offered an amazing opportunity to appear on a new, weekly, online chat show dealing with issues surrounding IBD and ostomies. I’m joining 3 other fab ladies with ostomies, who all also write blogs.

The IBD and Ostomy Show will begin Thursday night at 8pm and you can tune in live on Facebook and YouTube!

We will also be encouraging feedback and questions from people watching so would encourage you to like the show’s Facebook page

( https://www.facebook.com/theibdandostomyshow/ )

so you can see what’s happening, post your feedback and ask questions. You can do this on the wall or by inbox if you would rather it remain anonymous.

I hope to see some of you tuning in and would love to hear what you think!

💜

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