i was diagnosed with crohns in 2004 and i thought my life had ended, and unfortunatly it does still kinda feel like that. ive had surgery on my small bowl already and was told id proberly get 10-15yrs symptom free, im still waiting for any time at all free from it. ive had pentasa, steroids ( on more than a few occasions) aziaprine , remicade, methortrexate, and there just the drugs i can remember, and thats without the herbal attempts and acure puncture, im now left with two options theres the possible option of stem cell theropy ( ive yet to find out what that entails) or surgery which will leave me with a perminate ileostomy. im really frightend i dont want the surgery because i dont want the bag, i know i'll be so self conciouse of it, and i just carn't imagine life with it, the thought of having makes me want to break down an cry , ive heard from my ibd nurse an she said theres no garentee i'll qualify for the stem cell treatment as its still in test phases, and its apparently painful. im in knotts over what i should do, however on the other hand im sick of the pain , im sick of the joint pain which im hoping will go if IF i hav the surgery , all my friends keep saying i shud have the surgery as it would apparently improve my quality of life, i just dont see it.

You have to wear your heart on your sleeve and if you haven't already told them exactly how you feel about it, then you need to tell them, someone there should listen to you, if you can't tell them print off your message above and hand it to them, let them know anyway you can.

I'm sure you should be able to research the stem cell therapy on line so find out fast as much as you can so that you understand what they are talking about when you talk to them about it next so that you have questions ready, do you have an IBD help line?

If you have the surgery and no doubt the upset and heartbreak of the ileostomy, can they guarantee you will be pain free?  If they can, you have to consider it as a very serious option, to be pain free is ultimtely what we are all trying to achieve, we all get sick and tired of being 'ill'.  Again talk to the IBD help line and there may be people near you who can tell you what it's like in real life and not how you imagine it.  I'm sure there must be members in this forum who can help you.

Also make sure you have exhausted all the drugs that are out there, only the other day someone here told me of thalidomide.   I searched the internet and found someone who has been on it for 4 years and had been free of crohn's since, not everything works for everyone, I've just had my second inflximab infusion so my own fingers are crossed.

My thoughts are with you.

thanks julie, yur words are encouraging , ive had so many different drugs that i carnt remember them all, but i think the one u mentioned is yet another one ive tried, i sincerly hope the remicade works better for you than i did for me, i really do feel rock bottom atm. my thoughts are with you to x

Had a quick look on the web and found this:

http://www.sciencedaily.com/releases/2007/11/071130223834.htm

Its all about the University of Nottingham's stem cell research. You might like to read it.

My Son is 12 and was diagnosed back in March. We are on our 3rd lot of different treatment trying to get a stable remission.

Lynn

chezzy thinking of you hunni, at this very bad time, stay strong, and make it happen for you, decide whats best for you, and go with that option, (when youve done your research that is,)has for freinds/family god they so annoy me, they dont understand, i know sometimes they mean well, but if they dont have this dreadful disease they cant and wont understand. so therefore they should listen to what were telling them and go along with us, after all were the ones thats goin through it, ive been sent a fact sheet from the nacc reguarding family and freinds of people with crohns, its basically telling them how they deal with have freinds/family with crohns, take alook at it you can download it and pass it to them its very helpful. tc xxxsuexxx
the website is http://www.nacc.org.uk/content/home.asp

hey purple linzee, thanks for the link , i'll check it out asap, im sorry for your son , bloody hell im 27 and struggle to cope with it, id have hated to have got it any younger, i hope they caught it early enough to hit it hard and keep it well controlled.

hey tattyteds (sue) thanks you so much for your kind words, and thank you for the link , i will certainly down load that fact sheet, and hand more than a few copies out, i'll keep you informed on my progress, its certainly helping talking to people that understand, it really does get me down so much, i try so hard to keep my chin up , and i dont really talk to people close about how i feel because it falls of deaf ears, i might aswell bang my head against the wall. my girlfreind even fell asleep on me the other night when i was trying to talk to her about how im feeling about the op etc. thanks again , tcxx

Hi all, please visit the following website and read about LDN (Low Dose Naltrexone), which can be used to treat Crohn's: http://www.ldnnow.co.uk

xx

Hi new here
Had a hell of a year n a bit started offshore with appendix took 5 days to get me back which in this day and age is unbelievable after serving 18 years as marine with out a scratch lol I had the appendix removed but still in pain so after bevvy of scans etc they found a constriction in the bowel I was then sent home to get strength back for 2 weeks then back in to hospital for Right hemi  after the op was hell vomitting facel matter and feeling that was it this carried on for 12 days Istarted slowly feeling better was in for further 18 days due to complication which set me back  Ithen returned home weak and 3 stone lighter which being gym nut was hell its self lol Iwas offwork for 5months feeling guilty as hell then returned on pt time basis which to say the least was tiring started getting back to fitness passed offshore medical ready to go make the money again  then BBBBOOM  another damn attack more tests more being starved another 2 ops to see if anything and again the post op vomitting and pooing bed which I felt disgusted with self Ieven changed it myself as so disgusted with self  kept in for 3 weeks home for xmas right here we go again stated back at work Feb getting on great tired but happy  till bbbbbbbboom again 3 weeks ago ended back in to be practically be told nothing wrong ust constipated enemas etc nothing so sent home now in utter agony after eating starting to lose weight again off work acid n stomach noises along with nausea  saw GI doc hes recommended scopes n biopsies was speaking admitting me again I am getting to end of teather Icant sleep or nothing   some one help !!!!!!!!!!!!!!!!!!!!!!!!!

Hey Chez, hows it going,just read your message,its a shame you cant find someone
close to talk to about your feelings,if i was closer i would get you round for a chat
iam a good listener.
The thing is,unless you have this condition,you dont know how and what you feel.
And although your 27,you are already coming in contact with people younger than
yourself and seeing what they are going through.
I was , like you diagnosed in 2004,had to give up work,and felt like my life had ended.
It takes time,you need good solid friends / family to support you emotionly,take
time out to access your life,adapt,and get on with it.sorry to be blunt,but if you have
a good spirit,sense of fun,humour,laugh at yourself,it helps,i can tell you.


Think it through whats best for you,then be positive and act now.


regards David