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.