vickyoddsocks
wears odd socks
- Joined
- Apr 23, 2007
- Messages
- 240
Hi guys,
Sorry i havnt been on for a while, I've still been reading most of the posts though! I sometimes tend to avoid spending too long reading and posting (obviously nothing personal!) just some days i dont feel i can cope with paying thatc much 'attention' to my crohns, and i suppose i like to pretend its not there. So i tend to go a few days without going on the forum. But im back....and ill fill you all in
I finally saw my surgeon on Friday, I wasnt expecting him to tell me anything i didnt already know. He basically said that I dont really have any other options left for me now....ileostomy is definate.
We questioned a 'sub total collectomy' but he said that with the problems ive had in the past with my bottom (i had a horrendous abcess when i was 17 - they drained 500mls of puss in emergency surgery! And its never healed properly) he said that we would just be asking for trouble from it. And although its relatively healed at the moment, as soon as i reintroduce food it would almost certainly become infected again. So, like i said, my only viable option in permanent ileostomy.
I'm not suprised, because ive been preparing myself for a few weeks, but I did think we may have had a least a few goes at other options. But i 100% trust my surgeon, hes known me since i was 17 - so thats 8 years - and he said in all that time he'd never seen me like this. My latest blood test are worse, my Haemoglobin is now 8.0. he said my platelets are through the roof. We also looked at the results of my MRI, and that showed that the areas not affected by the strictures, are infact active disease, and not in good shape atall, therefore my entire colon needs to come out.
He also thinks it much better to do it now than have to be an emergency case, or let my health deteriorate further.
My surgeon is on leave this week, so he (or his secretary) is going to ring me next monday to let me know when im coming in for the surgery (i cant imagine it will be long after) I'm also being put in touch with Stoma care nurses this week.
I've had a good old cry over the weekend, and still find myself crying almost randomly. But today has been my most positive day! My mum got hold of some information from a stoma care nurse she knows from work, and me and my boyfriend sat down today and read through it all (much like we do with the forum!
It has 2 practice bags in it; if im correct in thinking, they are one piece drainable ones. Im not sure what size they are, i think they may be fairly small but had nothing to compare to so not sure. One was transparent on one side, and the other opaque on both. (I didnt realise they would be soft!)
The pack came with a 'tester kit' you get a pretend stoma that you stick on yourself and then can practice with the bag in different places. (I might ask you all about preferable 'sites') I was really impressed with it all actually. And didnt find it half as scary as i thought i would! I feel lots better having 'met' my future body part! lol!
To be honest, i can completely understand how and why you can appreciate an ileostomy. Even reading about it, the thought of just having to empty the bag a few times a day, seems so much more appealing then my normal daily routine. Today for example, i must have been to the loo about 15x. I get tummy ache, sore bum, bloody itching (which is the bane of my existance!) NO energy, sore joints, im not working, im not eating food. I just sit and 'exist' day to day.
I cannot wait to be able to live a normal life! I'm not under-estimating how difficult its going to be, and the surgery i know from my surgery before. But i actually think i may be able to cope. (Give it a few weeks and i may be saying the exact oposite!! LOL!) But for now im feeling fairly positive, so im going to roll with it!! And most importantly........I CANNOT WAIT TO EAT!!!!!!
Thank you all for your support, and im sure ill keep posting with questions and quieries, and of course ill try and be better at keeping you updated!
Vicky
Sorry i havnt been on for a while, I've still been reading most of the posts though! I sometimes tend to avoid spending too long reading and posting (obviously nothing personal!) just some days i dont feel i can cope with paying thatc much 'attention' to my crohns, and i suppose i like to pretend its not there. So i tend to go a few days without going on the forum. But im back....and ill fill you all in
I finally saw my surgeon on Friday, I wasnt expecting him to tell me anything i didnt already know. He basically said that I dont really have any other options left for me now....ileostomy is definate.
We questioned a 'sub total collectomy' but he said that with the problems ive had in the past with my bottom (i had a horrendous abcess when i was 17 - they drained 500mls of puss in emergency surgery! And its never healed properly) he said that we would just be asking for trouble from it. And although its relatively healed at the moment, as soon as i reintroduce food it would almost certainly become infected again. So, like i said, my only viable option in permanent ileostomy.
I'm not suprised, because ive been preparing myself for a few weeks, but I did think we may have had a least a few goes at other options. But i 100% trust my surgeon, hes known me since i was 17 - so thats 8 years - and he said in all that time he'd never seen me like this. My latest blood test are worse, my Haemoglobin is now 8.0. he said my platelets are through the roof. We also looked at the results of my MRI, and that showed that the areas not affected by the strictures, are infact active disease, and not in good shape atall, therefore my entire colon needs to come out.
He also thinks it much better to do it now than have to be an emergency case, or let my health deteriorate further.
My surgeon is on leave this week, so he (or his secretary) is going to ring me next monday to let me know when im coming in for the surgery (i cant imagine it will be long after) I'm also being put in touch with Stoma care nurses this week.
I've had a good old cry over the weekend, and still find myself crying almost randomly. But today has been my most positive day! My mum got hold of some information from a stoma care nurse she knows from work, and me and my boyfriend sat down today and read through it all (much like we do with the forum!
It has 2 practice bags in it; if im correct in thinking, they are one piece drainable ones. Im not sure what size they are, i think they may be fairly small but had nothing to compare to so not sure. One was transparent on one side, and the other opaque on both. (I didnt realise they would be soft!)
The pack came with a 'tester kit' you get a pretend stoma that you stick on yourself and then can practice with the bag in different places. (I might ask you all about preferable 'sites') I was really impressed with it all actually. And didnt find it half as scary as i thought i would! I feel lots better having 'met' my future body part! lol!
To be honest, i can completely understand how and why you can appreciate an ileostomy. Even reading about it, the thought of just having to empty the bag a few times a day, seems so much more appealing then my normal daily routine. Today for example, i must have been to the loo about 15x. I get tummy ache, sore bum, bloody itching (which is the bane of my existance!) NO energy, sore joints, im not working, im not eating food. I just sit and 'exist' day to day.
I cannot wait to be able to live a normal life! I'm not under-estimating how difficult its going to be, and the surgery i know from my surgery before. But i actually think i may be able to cope. (Give it a few weeks and i may be saying the exact oposite!! LOL!) But for now im feeling fairly positive, so im going to roll with it!!
And most importantly........I CANNOT WAIT TO EAT!!!!!!Thank you all for your support, and im sure ill keep posting with questions and quieries, and of course ill try and be better at keeping you updated!
Vicky
