Once upon a time I…

In a previous post I spoke about The Fear of being stuck in public and desperately needing the toilet.

I very briefly touched on the times that my worst fear did indeed come true and I didn’t make it to the toilet in time.

When I wrote this blog, I promised to write about everything, the good, the bad and the not very pleasant and so, I am about to tell you about one of the times, that I unfortunately didn’t make it to the toilet.

I’m telling you this because you may have IBD and have also experienced this first hand, and it might help you to know that there are other people out there who it has happened to. Or you may not have IBD and by telling you this, you can begin to understand some of the debilitating things that happen to those of us with the disease.

I had spent the day out, no dramas. I can’t remember what I was doing that day, only that I had been out and about. Clearly if I had needed the toilet, there were ones within my reach and so I had no problems.

On the way back home I started to get the tale tale signs of needing the loo urgently and so I attempted, as best as I could, to try and get home quicker.

As some of you may know, doing the “butt clench” and trying to walk fast without looking like a penguin is damn near impossible.

Running, is also impossible.

The spasms, pain and rumbles were not just coming in waves now, it was one giant force that was wreaking havoc with my body.

I made it to my front door and lo and behold, I couldn’t find my keys. I was nearly in tears at this point.

Finally finding my keys, I somehow managed to get up the stairs. My powers of butt clench are outstanding and I made it into the bathroom.

I was shaking so badly from all the adrenaline that I couldn’t undo the button of my jeans and that’s when it happened.

I pooped my pants.

Immediately I burst into tears and ripped the jeans off me.

I can’t believe I was so freakin’ close to the toilet. As I scrubbed my jeans before I put them into the wash, waves of disgust came over me.

I’m 21 years old. How the hell can this happen to me?

IBD doesn’t care about your age. If you’re going to poop your pants, its going to happen, regardless of how old you are.

I was lucky that this time I wasn’t outside, or miles away from home and had to get back with soiled underwear.

Day to day living with this disease can be so tricky and its understandable that people stop going outside for long periods of time in case this happens to them.

But what can also be heartbreaking is that people don’t talk about this because lets face it, how the hell are you going to strike up a conversation about how you pooped yourself that day and you want to talk to someone because its really getting you down.

It’s just not going to happen. Having IBD can be such a lonely disease because we just don’t want people to know the intricate details of our lives, especially if they are embarrassing.

Unless of course you are me and clearly have no problem telling the world you have sh*t yourself.

Let it be known though that there are support groups out there, so if you are feeling down about it, reach out to people who know what you’re going through. You don’t have to talk to your friends and family, but at least try and talk to someone because its tough going through this. You have enough on your plate dealing with IBD, lets not welcome self hate or depression into the equation too.

If you do need someone to talk to, try calling NACC, the link I’ve posted is to their National Support Line. Don’t suffer in silence. There are people out there going/have been through what you’re experiencing. and its okay to reach out to them to let it all off your chest.

My first guest post!

I am so chuffed its unreal.

Why?

Because this amazing site http://www.meandibd.org/ asked me to write a guest post for them on their blog.

You can read it here:

http://meandibd.blogspot.co.uk/2013/05/guest-writer-steph.html

Me and Ibd is such an awesome site for young people. I know that when I was diagnosed there was such a lack of information and support available to me and I felt pretty lonely.

Me and Ibd is a site that offers support and information for young people living with the disease. Once you’ve checked out my post, you should have a look at the site too, there’s some fantastic information on there!

Lean on me

I am so  very lucky, so incredibly grateful that I have had so much support on my journey. The friends and family that have helped me through some rough times, have stuck by me through some horrible days.

It makes going through this a little bit easier when you know you have so many people that have your back.

However it’s not just from my friends or family that I have been supported by but also there have been strangers that have supported me.

When I was diagnosed, I thought there was something really wrong with me. How could I be 19 and get a bowel disease? Surely I should have got this when I was a bit older?

It wasn’t until I went to an education session that the hospital put on that I found that it could affect my age group. IBD doesn’t care how old you are, it can affect any age but you are most likely to be diagnosed between the ages of 15-30.

It was here I first met people who had the disease and it was such a relief to know that I was not alone. We spoke about all of our past experiences, what foods affect us, how we felt and I made a good friend out of it too, who I still keep in contact with till this day.

I didn’t reach out of the support group of my friends and family again until I had a stoma and the community I found saved my sanity.

My stoma nurse, who by the way, was an amazing lady who I will have to blog about at a later date, gave me this website www.iasupport.org.

There is only so much that your stoma nurse can help you with and the forum on IA support was legendary. There were people talking about their experiences with their stoma, others asked questions, some used it as a place to vent frustrations because sometimes it helps to talk to people who are going through the same thing as you.

I found the site so reassuring, so when TinTin had one of his dicky fits and I started to panic, I’d ask a question on the forum and would get advice from people who have experienced it themselves.

In the early stages of my loop ileostomy I found it so hard to empty the bag because it absolutely stank. Maybe it’s because the stoma is higher up in the intestine so more bile and acid gets through, I don’t know, but I do know that every time I had to empty it my eyes watered, I gagged and felt like I had unleashed hell within my toilet.

One quick post to the site and people gave me their suggestions on how they dealt with it, such a putting charcoal tablets in the bag or peppermint drops. In time it became easier to empty the bag, perhaps my intestine became used to the task that it now had thrust upon it, but there was a time when I opened the bag only dry heave so badly that I thought I was about to be sick which is never good when you’re on the toilet, where the hell will the sick go?!

Something that I took away from using the site is that I am not alone, that there are other people going through this too and sometimes their battle is far worse than mine.

The beautiful community at IA support really did help me and through meetings that IA run I found another great friend of mine.  It definitely made the experience of having a stoma easier, knowing that I could call upon some very knowledgeable people and get advice.

Sometimes it is hard to talk to people about what you’re going through but I do believe it is beneficial to have some kind of support system be it your friends and family, or if you feel uncomfortable talking to them, perhaps an outside community will make you feel more at ease.

Having to go through a stoma is hard enough to do by yourself, but please take comfort in the fact that you are not alone, that there are people out there that are going through this too and that their experiences can help you. One thing that I have noticed is that whether you have a stoma or a jpouch, have Crohns or Ulcerative Colitis, we all want to help each other. We all know how horrible it is and if our experiences can help others then we gladly share, even if they are horrific because we don’t want to see others suffer the way that we have.

We build these support systems around us to help get through rough times, but we also build them to help others, so that we can support them in their times of need.

So remember when you’re feeling low, and you’re having a “why me?” moment or a moment of sheer panic because your stoma is doing something it’s never done before, take a deep breath. Talk to someone about it, we’re all here to support each other through this.