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I thought my disease had been removed

i thought my disease had been removed

Hi everyone,my name is cheryl,im 37 years old,my problems started when i was 20,my disease started with little problems such as needing the loo more than usual',i remember sitting in the park on a hot day and needing to run home to go to the toilet<after that i remember my knees swelling and hurting like mad so i went to a+e ,i was told that it was reactive arthritis to something else,i was given steriods and sent to my gp,a few days later i had rectal bleeding but a lot and by this time all my joints had swollen and i could hardly get out of bed ,a gp refered to a gastro consultant and i was diagnosed with u/c,once i was on the right meds i was ok for a few years with the odd occasional problem,i had my first son and all was still ok,it was when i was pregnant with my youngest son 2 years later that i started feelng ill again,bleeding,pain ect,i held it out until i had had my son and then i dicovered that the meds(sulphasalazine,foams)lost atect ,, next option was tog:poo: on steriods which after a year or so i seemed that i had also lost affect,i woul end up in hospital and eachtime became longer,the worst time was when i was in for 3 weeks ,nothing was working and i lost so much weight<i was at 5 stone and my surgeon said if they didnt remove my colon i would die<i was in denial and i said i didnt want to have it done,looking back i was so ill and cant understand myself,i was allowed home and recovered a bit<but a few weeks later i was back in clinic asking for them to remove it<once i had built up my weight i was in hospital ,had a proctocolectomy and a j pouch done,i had a stoma for 5 month while my new pouch was healing,i had my takedown done in jan 2006,i knew straight waay that i still wasnt right,i still had pain in my anus ,and loads of over problems,i just thought it was getting used to things,my surgeon would just say thats how it is with a pouch,in october 2010 i decided to be refered somewhere else,i went to see someone at barts and thay have been brilliant,they sent me for every test possible and they have found that i have an ulcerated small intestine,ulcerated pouch and cuffitis along with malnuritain etc,they have tryed a few things which have not worked and we are talking about going back on immunosupressants again,i hope this works so i can keep my pouch for a bit longer,its been a long journey but i hope the next treatment works,ive found that antidepressants have been my rock to keep me smiling through it all!
 
The immunosupresants are the lesser of the two evils. I'd much rather try and keep from catching bugs than having my bag put back. I dont know about the colectomy, I had the first 6 feet of my small bowel removed and I needed a bolis of water every other day just to keep hydrated. Food literally took 5 mins from eating til into the pouch. It becme clear really fast that they needed to reverse my ostomy much sooner than they wanted. I was losing weight about 10 lbs. a week. Good luck
 
hi ,aw so do u have a pouch now then ?i cant really stand the thought of having the bag back yet but if i went down hill faster than i have already then i supose it would have to happen,i was fine on the immunosupressants before the opperation but never thought id be back on them !
 
Thank god no puuch anymore. But youll prob have the imuno's for the remainder of your life or until theres been an extended period of remission and you dont want them anymore, sorry
 

xJillx

Your Story Forum Monitor
Hi Cheryl and welcome! Boy, you have been through so much! What is next as far as treatment for you? Be sure to check out the Treatment forum and do some homework. It always helps to get some background knowledge before discussing the different options with your GI. I sure hope whatever you try next does the trick, and you start to feel better very soon.
 
hello jill,aw thankyou for your message,hows things with your crohns ?if i get a few more years from my pouch i will be very happy

cheryl :)
 

Astra

Moderator
Hiya Cheryl
and welcome fellow Brit

Can't help you regarding your ops etc, but wanted to welcome you to our community of friends!
Enjoy!
lotsa luv
Joan xxx
 
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