Surgery and still unsure

[smithy86]

surgery and still unsure

hi there im steve 24 year old from leeds in november 2009 i had been suffering with diahrea for a few days with a slight amount of blood was working 8 hours a day but feeling tierd but still eating great went to the gp who gave me some anti biotics then recieved a call from him a few days later asking me to go in to hospital still working and unsure why as i had given no samples of anything i went to the hospital and had various tests colonoscopy bloods etc i was started on pentase and the asacol enemas and some type of steriod all good went home then started suffering really bad after 3 days toilet non stop previous was only 3 times a day now up to 8 times on the tablets so went to the doctor again back in hospital and was put on iv steriods back to normal again and about to go home they took me off iv and back on oral before i got away from hospital i was bad again going upto 15 times a day more tests and 3 weeks of constant toilet the consultant said i had ulcerative colitis and they then tried as a last attempt before surgery infliximab normally given to chrones patients another 7 days passed still no better still taking all types of medication and now going 24 times in the day not eating or anything on the 20th of december i went in to surgery and had a subtotal collectomy so now have an illeostomy "gutted" at my age this was a real change for me anyways i was still in hospital caught all kinds of infections which nearly killed me after 4 months in hospital and loosing 4 stone feeding on tpn i managed to get home im on no medication what so ever and have managed to put 3 stone back on there have been biopsys taken and nothing other than inflammation has been found!! my consultant is now saying he is 80% sure its chrones but im not taking medication and have got better by myself only thing is i now have no colon and cant eat some things i had never had any pain was working everyday prior to all this now i have only just got back to work and the consultant says i probably wont ever be able to have a reversal so im absolutley distraught has anybody got any ideas on my story that would be great many thanks steven

 

[Astra]

Hiya Steve
and welcome fellow Brit

Wow, that's quite a story! There are a lot on here who can relate!

check out the Stoma Subforum here on the forum, all your questions should be answered there.
lotsa luv
Joan xxx

 

[DustyKat]

Hi Steve and :welcome:

I'm so sorry to hear you have been through so much in such a short time, your head must be spinning! Since you had a sub total colectomy did the surgeon explain why it can't be reversed?

Perhaps the surgery has put you into remission and that is why you have no symptoms at this point. My concern would be, if this is the case, that nothing is being done to maintain it.

You will find others here that have been diagnosed as UC only the have it changed to CD down the track. As Joan has suggested, check out the Stoma Subforum.

Please stick around as we would love to have you here plus there's is loads of info and support. If you have any questions don't hesitate to ask and nothing is TMI. I look forward to seeing you around the forums. Good luck and welcome aboard!

Take care,
Dusty

 

[CDDad]

Hi Steve,
Sorry about the tough time you had! Maybe your consultant is saying you can't have a reveral because of the high chance of recurrance with Crohn's.

I have a perm ileostomy and it is working out very good for me so far. Sure, I'm 43 and married so I don't have to worry about dating, etc, but my life is so much better now. I'm in complete remission and maybe knowing my ostomy is permanent helped with acceptance. No rectum or anus, so nothing to ever reconnect to!

Check out the Stoma sub forum here, and another great Ostomy forum is the UOAA at http://www.ostomy.org/forum/viewforum.php?f=20
Many people from the UK on there too.

 

[Nyx]

Like Joe, I have a permanent ostomy too. It's not really that bad! It's given me my life back..it just takes some getting used to.

Good luck..and definitely check out the stoma subforum.

 

[smithy86]

hey all thanks for your reply the consultant says i cant have reversal as they dont like to carry out this procedure with chrones patients as it may come back but like i say i have never had any problems previous do you think they were a little "trigger happy" with the surgory as i was perfectly fit before takin any medication it just seemed to make me worse. does anyone know a good person to see for a second opinion maybe as you can probably tell im not best impressed and taking it really quite hard.