Eeep!

Hellooo

just a quick one tonight. I have lame-o period pain, but its not normal period pain its PILL period pain. so its tummy, arm and leg pain! What the heck? naw weelll! I am getting yummy pizza for tea (the nice italian kind not the stodgy sit on the toilet all night afterwards kind...). Its kind of becoming a monday ritual as they have free delivery on mondays and tuesdays.

On another note, I just sold a crapload of jewellery which is great! As i bought myself a wee before-op-present... well not wee, its a bloody huge handbag!(pictured above :P) from www.vliegervandam.com. I so can't wait to get it! (I justified it also by telling myself its a good size for all my ostomy supplies i will have :P haha!).

I am also frantically trying to get my crap together for my trip to vancouver in 46 hours! EEEEEPPPP! So exciting. I have to make my andy a few lasagne's as he isn't the best of cooks, poor thing :)

On a crohnsy note: been feeling okay, body feeling pretty worn out lately but i think the antibiotics are keeping the crohns at bay a bit phew. Lets hope they keep working a few more weeks. I saw the ostomy nurse the other day. Was a little shocked at how different they do things here compared to the US and australia. EG aus get 1 bag per day for thier stoma, whereas NZ gives you 2 bags a week... Now that sounds pretty stingey to me, but i am sure i can coax more from them. Also they Prefer using one piece bags instead of two piece which i find kind of worrisome as i think the two pieces would be safer, and also more hygenic? (Being able to see your stoma when you put it on etc.). Anyway again i am sure they wont force me into anything and i certainly wont let them! lol.

I tried on a bag the other day to get the feel of it, and filled it with water. It was surprisingly unnoticable - seriously! and being a big girl helps :P. I followed the instructions to the T but after sleeping with it noticed it had peeled away a bit. I dont know how i would survive on 2 a week i would be so paranoid ! lol.

Anyway i hope you are well xxx Thanks for reading

Lotte

Stoma

Since learning about getting a stoma, I have had a ton of support! People are so caring about it. I am not going to be disabled tho - I won't let it. I feel really positive about it, because I am so sick of running to the toilet and feeling the horrible bubbling sensation in my rectum. I am going to be so happy to get rid of the fistulas too.. They really slow down life a lot. In the end it's down to this : a stoma is a hole I can have control over. You never know what fistulas are going to do or say (lol, I really mean that... It is the funniest voice ever :D).

I have so many questions though! The one I am most worried about is will I be able to sleep or lie on my tummy?! How tiny does that seem compared to "how many times do I need to rush to the loo each night and hope I haven't sharted?".

I am also a little worried that new zealand won't be so up to par with all the new bags and flanges and stuff... And where do they come from?
Can u buy them on the net?

Are those ostomy undies worth the money?

Do the ostomy silencers actually work?

How many times a day do I need to empty my bag?

Does it make it harder having a bag, if you have a larger belly?

I don't know... It would be nice to have some answers.

I am actually going to see the stoma nurse on Friday, then I am meeting up with a lady who has one so I can ask questions.

In other news, I am going to vancouver for two weeks in 9 days ! Mum and I were going to go later this year but thought it would be better before my op. My sister lives over there so we will stay with her. So excited! Just a little scared I will get sick.. As I am completely off my humira from now till the op, and it does cover some of the pain.

Ah well. Pain killers I guess :)

Anyway would love to hear from you if you have a bag!

Xxxx



- Lotte x

A bit about me and my crohns

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