Hello there lovely people!
I thought I would start this blog, as I thought it might help some other people also going through IBD (inflammatory bowel disease). I also thought it would help to write down a bit about my life, sort of like a diary.
So my crohns disease started when I was 13. I started to get horrible gut pains all the time, along with diarrhea and sometimes vomiting. I also lost a lot of weight and 3/5 days of the week I would either miss school or I would go to the sick bay by lunch. I had many tests done to see what I had, but due to the lack of knowledge and skill in my town, they were never successful in diagnosing my crohns. I always knew I had crohns, but it was bloody hard convincing my doctors I did... They just seemed to think it was in my head, and because I wasn't annorexic or even skinny that I couldn't have crohns. Anyway, nearly two years later, minus 20 kg, and a lot of school days, I still hadn't been diagnosed. I at that point had decided to go to boarding school as the school I chose supposedly had a great art program. That went pear shaped and I definitely wasn't ready for boarding school, shared loos, or the snobbiness! Also being away from home was just too much for me at that stage. My crohns progressively got worse and by June we were finally through with the crappy doctors in Blenheim and decided to find a proper gastroenteroligist ! As soon as I met him and explained the situation he was sure I had crohns, and a biopsy via colonoscopy confirmed this. Hallelujah! Since then I have had on and off years, had a few surgeries done - mostly on fistulae. I also Tried lots of different meds, but my bloody stubborn crohns broke thru all of them. (pentasa, azathioprine, methotrexate LDN and finally humira - which I have been taking double the normal amount of.)
A few days ago I was scheduled for fistula surgery again, as I have been having a crap load of trouble with my bum (scuse the pun :D). I had been thinking a lot recently about getting surgery, and asked my surgeon (highly drugged on pain killers after the op) what he thought. He thought it was a good idea, he also mentioned I would get it all out... This scared me as I knew he meant my large bowel, as well. Meaning I would have a stoma and ostomy bag. I burst out crying, as for some strange reason I never added a bag into the equation.. After an hour or two I had come around to the fact i would need a bag, I mean you could let it get worse and let the fistula eat ten holes in your arse, and the crohns get more painful and inflamed... but what's the point in that.. Longer agony?
It's actually sounding pretty sweet at the moment... Having a stoma. Not having to rush to the bathroom every 20 mins... Not having a bum! Seriously, that for me will be such a plus. I have nothing but bloody trouble with my ass. Its been feeling like its going to prolapse lately too.
I will however miss the ability to fart and clear a room. Though I have heard you can do this with a stoma, you just can't pre meditate it. Haha.
So I will be getting My large intestine, rectum, anus and part of my ileum removed on the 25th of may. The official name of this is a panproctocolectomy and ileostomy ! What a mouthful!
Anyway, leading up to my surgery (25th may) I am going to be writing on here, with questions, worries and whatever really. I would love to hear from anyone else who has crohns or ibd or has a stoma.
If you are about to get or have just gotten a stoma, I have found an amazing site called www.stomaatje.com. It has sooo much info on everything to do with stomas
Anyways have a nice day!
- Lotte x
No comments:
Post a Comment