I have now been advised to have full colon removal

Darasdad thanks for your message and info, i to am somewhat nervouse but the end result is i will only have to worry about one illness i wish you luck for the future take care john 

Fingers crossed for the best outcome for you John.

Many thanks

Hi Darasdad1

How are you doing did you end up going for the permanent stoma ? Forgive me for not remembering just wanted to know how things are ? Baby number 2 is being delivered by c section in 3 weeks after my stint of emergency bowel surgery in February everything so far has been well thank god !! Long may it continue hope to hear from you soon take care Rachelle x

Hi Rachelle - good to hear from you. I was thinking recently about contacting the handful of people who'd been in contact with each other through their treatment. You'll be looking forward to the new arrival, how Wonderful & Beautiful! Everything here is fine. The Stump was removed in March, my recovery was quick and physically I am able to do anything. The Stoma is permanent. I don't even think about it except that sometimes it saved my life. Good luck with the Happy Event. Xx

Yes it would be nice to stay in touch thank you 😊 I will keep you posted!! Oh that is brilliant news I am so happy things have worked out well for you speak soon take care Rachelle x

Hi there, we talked before, are you still contemplating the pouch? As long as you have healed well it should be an option. Keep in touch.

Good Luck, Sheila

Sheila - I'm still putting the decision off. I'm in good health now and can do almost everything I did before. However, my appointment with the Surgeon is on Wednesday and that has concentrated my mind. I am worried about what comes next.

Hi, Don't worry, be glad you have choices. We have no negatives about the reversal but you have to go through the process yourself and decide. I know last year it helped us to hear from others who had made the decision. Our final help was the discussion that the pouch op still allows you to go back to stoma, after 6 months or 10 years if things don't work out. Every day is good, really grateful that he is so healthy and looks fit like he did before this all started. Take Care.

Sheila

Hi Carly

the reason behind this is because i am antiretroviral drugs, and the masalzine and predisilone are not effextive and as i am on the hiv drugs i cannot go on immune suppresent drugs hence the option of surgery, thanks John

Hi Sheila yes i remeber before, and i am going to go for the pouch as i am constantly having to go to the loo all nasty as well and really going down with this all, and it doesnt help having to be a medication to keep my immune system intact any way thanks 

Good luck for your appointment with your surgeon darasdad keep us posted 👍

hi sheila, yes I really want the reversal, I am chasing up my local hospital - I am waiting for an appointment to see the surgeon as I have not met him yet. I understand you have to heal for a year so that should be the end of april. I know its not all going to be plain sailing tho but I cannot wait for the day where I dont have a bag attatched to me, I havent a relashionship or given my stoma a name like some people have! 

bye for now

Hi, I understand what you are saying about the stoma. My son loves his J pouch more! it has worked very well and he is fully in control and he can delay his output if required. He is so active and sporty it was hard to run around and have to keep emptying and worrying about leaking. His new normal is just fine and as he is young and in a relationship he finds life a lot easier. He can wear jeans again and close fitting clothes. He goes to the gym now and swims and actually has a 6 pack. The scar where the stoma was is small and fading and the mucous fistula scar has been incorporated into his main scar and looks good.

He went to John Radcliffe Oxford, could not fault them, they do reversals every day so are really experienced. His surgeon Prof Mortenson is world famous and so caring.

Good luck, let us know how you get on.

Sheila.

hi sheila, sorry to bother you again I just wondered if your son had to have more steroids or cortizone whilst he was in hospital if so how long was the course and did he have to take them? when having the reversal I mean.

many thanks carly

Hi, no worries, after the ileostomy he took Asacol suppositories for the stump output and I think Mesalazine for the mucous fistula output, to slow them down. The first reversal op removed the stump and therefore closed up the mucous fistula into a neat scar. So at that point no disease no meds just the stoma left to show that the UC had been there. Great relief, 6 weeks later keyhole surgery to join up pouch and remove stoma. Hopefully last op.

Stay in touch. Sheila