Hi Grace
Must have been really hard for you only having had a short duration of UC prior to your sugery. I had a terrible run after my single stage surgery and developed sepsis which resulted in my the having to have a temp ileostomy. I feared the reversal as like you I just did not want to go through the surgery again. However, I did eventually decide that I should go ahead on the basis that I had nothing to loose and if the worst came to the worst I could always have an end ileo. Felt if I didn't have it, I would always wonder what would have happened. I am so very glad I did. It is definately not easy or pleasant, adaption takes a long time and I still have bad days, but for me it is so worth it as my life with my J-Pouch is far better than having an ileostomy.
Caroline

Caroline this is so good to hear I think it would be so much easier if my first ever stint in hospital didn't result in me nearly dying. I'm terrified that things will be bad during my op again and the thought of being back to almost square one isnt nice. I think today hit home the enormity of what I've already been through aswell as what is still left. I'm 26 and moved to London last year to do supply teaching I got a maternity cover in a school i really liked but because I was still seen as a temp I had to quit. It was my first sort of permanent post and the school were going to keep me on the following September I just feel really cheated out of this and my surgeon said it will probably take good 9 months to get over the two stages of the jpouch surgery. I know this is realistic but I had silly notion in my head that I'd be back at work in September.My surgeon said because rectum is removed I'll probably go between 8-10 times which shocked me a bit I was expecting 8 at most. Just feeling so upset about everything.

I'm glad to hear yours was successful needed some positivity after hearing doom and gloom all morning. I'm prepared for it to be bad at the begining I remember the pain in my bum and lower back the last time and that was without my rectum removed. I know I'm probably making the right choice to have it but I'm just beginning To process everything that was said today

Grace, my story is very similar to yours. I had UC only a little over a month before my colon had to be removed via emergency surgery (it was removed only 3 weeks after I was diagnosed). I almost died. I was hypokalemic and severely underweight. I needed two blood transfusions. I also had other complications including paralytic ileus and full obstruction. I was in the hospital for 5 weeks. Because my surgery was an emergency, initially the doctors weren't sure I would be a candidate for a j-pouch and I was told to wait 6 months. At that point, my surgeon felt I was a good candidate and recommended the pouch. But like you, after the ordeal I had already been through, for a while I wasn't sure I even wanted to go through with the pouch, but my rectum never went into remission and it had to come out regardless, as I was bleeding constantly and having other intraintestinal manifestations of UC. My surgeon was kind and patient enough to send me for a second opinion. Ultimately, after much soul searching and the two surgical opinions, I decided to go for the pouch and I have never looked back. My quality of life is vastly improved. My only regret is that I wish I had done this sooner. But basically, I felt I owed it to myself to give it a try. I am so happy I did! Today, I am active, I work out, jog, horse ride regularly and eat almost everything I want. I know it all seems so much simplier in hindsight, but getting the pouch was the best decision I ever made.

I don't have any other advice to give other than you need to do what is right for you. But I hope that hearing something positive will give you some hope! Feel free to PM me if you want to chat or have any questions.

I understand how frightening and awful it is. To be so ill that you cannot move or speak and you do really feel that you cannot go on anymore. To see your friends and family in tears as they are so scared you aren't going to make it. I don't think anyone who hasn't gone through it can really understand.

When I first came home after my first surgeries, every time I closed my eyes I had flashbacks and I was an absolute wreck. Because of the sepsis and paralytic ileus, when they anaethatised me for my second surgery they had to keep me awake whilst they re-suction my stomach and put the breathing tube in and likewise I woke up with the breathing tube still in. I had to be physically held down to stop me pulling the tubes out. For months after I was so claustraphobic and went in to blind panic even if my husband went to hug me which did have a negative effect on our relationship.

But time does heal and the memories get less. I did have paralyitic ilius again after my takedown, but although it was unpleasant, I knew it would sort itself out which it did.

I saw my surgeon a couple of weeks ago and said that despite the complications I had no regrets and he said, "unfortunately complications sometimes happen, but they are all things we know about, can deal with and make better." This sort of sums it up really.

Just on the frequency thing, for me I still go 6-8 times a day, but it is totally controllable. I never had an accident or need go at night or have seepage, which is way better than the incontinece and urgency of UC.

My surgeon told me that the reason that I have had such a fantastic control outcome is because I was sadly never able to have children so my pelvic floor and muscles are still strong and intact. Not sure if you have had children, but it is a definate positive to bear in mind if you haven't.

Hope this helps. Caroline

Sorry Grace, also meant to say that to me 9 months + does sound realistic. I am fortunate that I have a farm so we are fairly self-sufficient but if I were working I don't think I would be going back just yet. I was told in hospital that for every hour your are under anaethetic you should allow one month's recovery, so first op was 8.5 hrs, second 2.5 third FREE!! so there's 11 months!

My timescale is

17 May 12 Single stage operation.
28 May 12 Temp Ileo due to sepsis
August 12 Take down.

Spooky your story is exactly like mine which pardon the pun is spooky. It's so good to hear positive feed back I spent last night having nightmares all night so bad my mum had to wake me up. It's good to know you were afraid too but it turned out right I think I needed to hear this

Kiwi thanks for sharing your story. Also good to hear its working out with you I'm so sorry you had to go through that but glad it all worked out ok. Good to know your rectim never went into remission either and all control is still good with you. I'm sorry about the whole not being able to have children. I don't have a boyfriend/partner at this stage so no don't have any children because call me old fashioned I want children with someone who I envisage being with forever. This is another thing that upsets me is the thought of not being able to have children. However my health is more important at this stage and I have to get the rectum removed

Like both of you I am of te thought process well you have to get the big part done anyway why not get the other part. It's so nice after such a bad night to see such positive outcomes is great thankyou

It sounds like you're dealing with Post Traumatic Stress Disorder or anxiety. Your doctor should be able to prescribe something for that or you could try talk therapy with a professional who is versed in this type of thing.

You don't have to make a decision right away about surgery. You could give yourself a 'time out' and just enjoy life for awhile. Many people have waited quite a bit of time before deciding on when or whether to go forward. Even IF you schedule surgery, you can always cancel right up to the moment they put you under. I think this monumental surgery leaves some of us with a sense of total lack of control over our bodies. If you know you can cancel surgery at any time, it puts you back in control.

I also had a very fast and very furious bout of UC. The first surgery was absolutely brutal. Like you, my colon 'exploded' [toxic megacolon]. I was in the hospital for a month. And like you, I had to make the decision about further surgeries. ! !!! I totally understand how daunting that is. The next two surgeries were nothing like the first. And I was only in the hospital for two days when I had takedown surgery. I know that my experience doesn't guarantee that YOU will have the same outcome but it does seems like the odds are definitely in your favor.

I hope the stress, worry, and nightmares go away very soon!

kathy

Aww kath thanks yeah I just want my life back as My rectum is t in remission I still feel constantly what I felt like with UC always feel as if I'm going to be sick etc. just want rid of it now. Bit better today cried for ages phoned a support group and had good chat with my stoma nurse. It's great to know that even with the first stage of the jpouch wasn't just as bad as the first op. I know I still have the option to cancel the op but both my gastroenterologist and surgeon said rectum had to go and for me the sooner it's done the better especially if im thinking of reversal.In some way I'm glad it's sooner as don't think could go on much longer with the though of surgery lookig over me. I usually have nightmares before something big it'll only last a couple of nights but this was the most vivid one I've had. My doctor did mention taking sleeping tablets but i don't want to to that route so I'm trying relaxing music etc store sleep. Thanks for all the reasurrance it's just what I need. I think I just see the bad that can go wrong and not the good.