I am at exactly the same stage as you, I had my first operation 3 weeks ago and now have an Ileostomy. Likewise, I want to go for the second stage surgery which my surgeon advises can be done within 3-6 months. I don't know much about complications with the j-pouch, but they did tell me in hospital that it is quite a "rigorous" operation.
I am going to attempt the reconstruction surgery to get things back to as normal as possible.
The only things I have heard about the j-pouch is that you can develop things like Pouchitis and Cuffitis - I think, but don't quote me (maybe someone can help out here) these can be treated with medication.
Liam, I can relate to everything you have said in your message, bless you, keep your chin up. I know it's not easy and really hope things work out for you.
I understand what you're going through. I also had total colectomy, had the stoma for about 4 months and had two more surgeries to get back to "normal". I hated having stoma so I'm relieved that I had the j-pouch surgery. I had many complications for the first two surgeries so I had to be hospitalized for about a month each time -- as you said, they were the worst time of my life as well. But after the third and final surgery (it's been more than 7 months now), I haven't had any complications yet. I would strongly recommend that you touch base with your surgeon about possible complications. Each case is different so some people may do better than others. Ask the surgeon all the questions you're asking here and also find out who will be operating on you (i.e. how much experience does this surgeon have on performing this). I think the fact that you're still very young will be to your advantage in terms of healing and getting back to normal. I know this is a very trying time for you but you'll eventually get through it and be a stronger person overall once you go through it. So for me, having the second and third surgeries were worth it but again, talk with your docs first and with your family members. Also, ask what to expect after going through all the surgeries. I wish you all the best.
Got your message and hope you are doing ok. In answer to your questions, it is all a bit trial and error. What appliance (pouch) are you using? I am using the Welland Freestyle Drainable which I must say is very good, the flange does stick however I do get a leakage directly around the stoma area. I have just spoken to someone at Clinimed about this as they make a Convex version - I'm going to speak to my Stoma Nurse about this. I do have a bit of a moat around my Stoma like it dips inwards. I trialed this week the latest Coloplast pouch that folds up and has two vents that is supposed illiminate air in the pouch. Can't say it did. The first one I used leaked. The second one I used caused an itchy rash around the flange area. So I have gone back to my trusty Welland products! Reading through some of the messages on this forum, Coloplast tends to come up as a non-sticking appliance quite regularly. I guess though it does depend on your skin. I'm sure there are many people that use Coloplast with no problems. I also use every other day Cavilon - which is a barrier film that protects the skin. I find this helps.
Have you joined the IA? If not, do, if you want the address details let me know. I recieved this morning my first batch of information from them. There is a great journal included which gives loads of advice and also advertisments for different appliances. Also talk to your Stoma Nurse about trying different things until you find what's right for you.
I'm 35 by the way! I am a single mum to a 3 nearly 4 year old - I don't always get a chance to log on as it's a full time job looking after him. Hence the delay in responding to you!
Am I scared of the next operations - not really, I guess I just want all this to come to an end, so the sooner the better for operation number 2. I am seeing my surgeon at the end of April and going to try and commit him to a date when we can operate and build the pouch. I'm kind of hoping on July. Not looking forward to the operation itself as had a nightmare with the first one - my epidural only worked on one side so I had full feeling on my right hand side where they had operated and around the Stoma, etc. I'm not sure how I coped with the pain, it's all a bit of a blur but I'm here today to tell the tale! My only really worry is what if the j-pouch doesn't work? I try always to look on the positive side of everything, but I do worry about this as I've read so many bad reports. However, no-one really ever talks about the good things do they?
I had the J-pouch procedure done in 11/07 for UC ( a flare of 2 1/4 yrs that I couldn't get under control). I didn't mind the ileostomy that much b/c I didn't have to do the "rush to the bathroom" thing or all the belly pain issues.
I had the ileostomy for 9 wks and had the reversal done in 1/07. It has been almost 4 mon already. The major issues I have (easy compared to the issues with UC) are some minor leaking at night, and some itching from internal hemorrhoids. It is the best thing I ever did. My stoma site is a little tender but not too bad. I am able to do anything I want. I even started running and am up to 2 miles 4 times/wk. I haven't run in about 3 yrs! I feel great. My surgeon said the 1st year is the most difficult and the 1st months are the hardest of it all. By the end of the year, I should be down to about 4-6 BM's per day. You can also take Imodium or Lomotil to help with the frequency as you are adjusting to the pouch.
I hope this helps. You tend to only hear bad things about surgery. It is soooo much better than all the hell I went through for 2 yrs!