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Posted 3/23/2007 3:43 PM (GMT 0)
Hi, ive recently had stage one (ileostomy surgery) out of three. I know now i am complication free and cant get any other disease like the UC i had. But i hate havin a stoma, i want the j-pouch surgery but im worried sick that after i will get complications or that the surgery wont work out. My first operation was a success but my experience in hospital was terrible, i was treated really bad and can easily say that the 2weeks i spent in hospital was hell, the worst 2weeks of my life. Isit worth having the second and third stage operations? Are there any complications with the j-pouch? I havent really been able to ask these questions and i dont know who to ask.   Please leave a comment, many thanks      Liam.
Posted 3/24/2007 2:53 PM (GMT 0)

Hello Liam

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.

Amanda x

Posted 3/25/2007 4:30 PM (GMT 0)

Hi Liam,

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.  

Posted 3/25/2007 6:14 PM (GMT 0)
Hey, I'm also awaiting two more surgeries. Having an ileostomy is definately not easy, but I'm very thankful I won't need it forever. Its also very hard going through such huge changes. I wish you luck in your upcoming surgeries and hope your hospital stays are better!

Also Bostonman, do you think since you had such complications during your first couple surgeries thats playing a part in your current situation?
Posted 3/27/2007 12:53 PM (GMT 0)

Hi Liam

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 wouldn't wish this situation on anybody, I can't imagine being 17 and having to deal with this.  Yes it is a nightmare and I sympathise greatly.  However, you are young and you should do well.  I do hope things improve for you, keep in touch and if you want to ask anything, just mail me!

Take care Liam

Amanda x  

Posted 4/29/2007 9:47 PM (GMT 0)

Hi everyone,

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!

jamie

Posted 8/10/2007 5:29 PM (GMT 0)
I just read through all of these posts and they have been quite a blessing. I am in the hospital waiting to see my surgeon and I am not sure if I am going to end up with a J-Pouch or a permanent ileostomy. After reading these posts, I feel nervous about having a bag at all - even for a short time. This lingo is so new to me and I do not understand words like stoma and flange? I guess having a bag is a learn-as-you-go process but none of it sounds appealing to me.

Having muliple surgeries is going to be a challenge, but I look forward to be healthy again.

I hope you all have a quick recoveries..thank you for your comments.

Any ideas on what I should expect after surgery?
Posted 9/17/2007 1:06 AM (GMT 0)
Hello,

I had step 1 in a 2 step Jpouch surgery. They took out my whole colon and created the jpouch in my first surgery 8/21/07. Now I'm suppose to have my 2nd surgery in Nov sometime to reconnect the pipes.
The only problem I'm having so far is the loop ileostomy. It's hard to get it not to leak, because it is pretty much flush with the skin. But that's a small price to pay for a bit of being normal again!!

Jessica
Posted 9/17/2007 3:19 AM (GMT 0)
hopefully suebear will come in here and answer this, cause she has one and knows lots about them. I chose not to have one, cause i was worried that it might fail later, and then i would have to have yet another surgery,but lots of people are very happy with them
good luck
Posted 9/17/2007 3:32 AM (GMT 0)
There is a web site jpouch.org that gives a lot of information about the surgery and also a forum to post questions. I too have had step one of a three step process 5 weeks ago, my surgeon wants me to have the second surgery in November, but I am opting to wait until after the holidays. I am curious as to how long the recovery process is for the second surgery. I have been off work since July and have to go back in October ( during my UC flare, I lost 30 lbs and am having a heck of a time getting to 100 lbs and getting the strength back in my legs!!) I know that I had no choice in having the first surgery and am not thrilled with the idea of having to wear a bag, but it sure beats the meds, running to the bathroom and not making it, abdominal pain, weakness, not being able to work or take care of my family, being in the hospital for 3 weeks etc. If I am unable to have the second surgery the only thing I will be upset about is that I will have to have surgery to remove the rectum!

I currently found out that girls in my department are going around telling everyone about my surgery and I am really pissed off that they think that it's their business to inform anyone! The worst thing is that I work in a hospital and it is a huge HIPPA violation! Now I have to go back to work in October and explain the entire process to people who just want to hear gossip. I didn't want everyone I work with to know. This is not the most pleasant surgery and recovery-- I'm sure people at work do not want to hear about how thick my stools are and how I change my bag or see pictures of my stoma!! I think that I am going to call my boss tomorrow and let her know that if I wanted to, there could be a big lawsuit regarding this situation.
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