1st operation of a 3 part J pouch...info?

Hi. I am new to this forum but have been on the UC page for a while. My son, who is 18, is very ill. He has tried just about all the meds and both he and his doctors have decided enough is enough and it is time to move forward with his life. He was scheduled for Oct7, for the first (of a 3 part J pouch) operation, but it has now been moved up to Sept 2nd. I really thought we were ready for this, but now that it is just around the corner we are both very nervous. I think, as a family, we are all pretty level headed and know that this will not be a walk in the park and know that just about all complications can be dealt with...but the uncertainty of things is terrifying at times. We are very fortunate to live in Toronto and have access to the best GI and more importantly the best colo-rectal surgeon in Canada. I am sorry to be rambling on...I guess I am just looking for some insight from your wealth of information as to what lays ahead.

Hello Collicat.

I'm very sorry your son is going through so much. Especially at such a young age. I've been through step 1 of a 3 part j-pouch plan, I wasn't sure, at first, if I was going to go through with a j-pouch, of just keep my ostomy. But now I know I will want to get it all done.

I feel soo much better after having my colon removed. I even had some major complications, and don't regret anything. For the most part, I feel great and can do things I haven't been able to do in years.

Since I've only had the colectomy, I can only offer advice for that. But, there are many on this site who've had everything done, and anyone would be happy to help out.

Ask any questions you may have. We can help you get through this.

To answer your first question, YES, he was feeling very good going into the 2nd surgery. His energy was back, as was his weight and his nuitrition. I won't lie and tell you that the 2nd one isn't tough, because it is. However, the trauma of dealing with a bag is much diminished and it's mostly the pain issue to work through. However, now, 12 days later, the pain is much reduced and the biggest issue he is facing is a near constant urge to go to the bathroom through the little bit of colon and rectum he has left. I am told that this is the intestine still draining, and though it isn't painful like the UC bathroom visits, it is still a nuisance to be in and out the the bathroom all day long. I think if it wasn't for that, he might be feeling quite happy right now. We have been told that this will, in time, settle down.

Anyway, following the 1st surgery, every day got a little better. It did take him a while to adjust to the bag - to be honest, at first it traumatized him to look at the stoma. but in time, he got over it for the most part and really had very little trouble with it. He had home healthcare visits and that helped a lot. After that, my husband became an expert at changing it (every 5-7 days) and they were able to get it done in a matter of minutes. I recommend getting a visiting nurse if at all possible in the beginning because it can be stressful at first. there are ups and downs and sometimes you might get very down, but suddenly the issue you were so concerned about gets resolved somehow. the body is pretty amazing. as long as you have confidence in your surgeon and have good access to him/her and to your GI doc, it will be fine.

This is not easy surgery, but youth is definitely in your son's favor as it is in anthony's. the bounceback is pretty extraordinary. his home healthcare stoma nurse today told me that she couldn't believe how well he was actually doing.

other info - both surgeries took around 4 hours. he will need pain meds and hopefully will be offered them for at least a week. the first surgery Anthony was in for 5 days, the second for 6 days both of his surgeries were laproscopic. make sure to have paper towels in your home when he gets home from the hospital - you will need a lot of them when changing the bag - for cleaning, wiping and for holding over the stoma when you take the bag off. one of the things you have to get used to is that the stoma will continue to work all the time and can easily spurt out when uncovered, covering it with paper towels totally takes care of that! Keep in mind that for some, looking at the stoma in the beginning can be very difficult. If your son gets upset, don't get yourself too upset. It is so normal and it will get better. The biggest lesson my husband and I have learned is the calmer we are able to stay, the smoother things go.

And lastly, none of this is nearly as awful as watching your kid go through the agony of UC. Keep that in mind and keep reminding your son when doubts arise! Good luck - we will all be thinking about you. If your son wants, I can have Anthony reach out to him on this site

Maria

that's all i can think of now

hi ladies, hope u dont mind me eavesdropping, but this info is really helpful!! my name is isaac, i am getting part 1 of 2 jpouch surgery september 11...i am not too worried about it, but my wife is nervous about the surgery part...just the surgery...the 3-4 hour wait she said makes her really nervous. what did you moms do during that time? all of my and her family will be there so i think she will be ok.

im 24 and i have had uc since i was 17..my mom was much like u guys, she was with me thru the whole thing, now its my wife who is my sidekick, although we have had my mom also come to all my surgeon appts with us so she can be a support too..

i dont think i am completely prepared with how major a surgery this will be..some have said they were up walking around the day after part 1, but my surgeon said i will be off work for 3 months for the two surgeries, if all goes well i should have part two in the first of november. so basically i will be at home for two months after part one and then go for part two, do you think i will really be in bed that whole time, healing, or will i feel like being up and doing things? i know that part 2 will have its hard times too, because of getting used to going the "natural" way again but i just cant get my head wrapped around what the next few months are going to b like, hopefully i get lots of drugs and maybe they will just fly by.

also we were discussing where my wife will sleep during my 6 day hospital stay, we have been married for almost 2 years and have never slept in seperate beds, i wonder if the hospital will make it extra comfortable since she is pregnant. we are having our first baby, she is 22 and the baby is due in january..sorry for my rambling, but you guys seem nice and like you might be interested in talkin with me...i hope to get to know some on this site, maybe i can give updates while i am in the hospital...

I forgot to add "congrats" on the baby....how exciting that is and by January you should be feeling so much better!

Hi Collicat (and everyone else on this thread),

I had the first of three surgeries at the end of May. I was really sick going into surgery due to an uncontrolable UC flare-up. As my surgeon put it, I "barely crossed the finish line" when I went in for surgery. I had lost over 30 lbs beforehand and even had to stop working a couple weeks before surgery because I did not have any energy and I was constantly running to the bathroom.

The surgery took about 5 hours. And I had trouble waking up from surgery because of how much anesthetics they gave me (I'm sure they weren't used to operating on someone 5'6" weighing less than 90 lbs and deathly ill). After 5 hours in the recovery room, I was finally brought to my room. The next morning, when I woke up, I felt a difference right away. Yes, I was still weak, tired, sore, etc. But I could immediately tell that the disease was gone! I had read other people's postings before surgery and they told me that would happen. But I didn't fully comprehend what they meant until that moment. It was a great feeling! 6 days later, I was home and being waited on hand and foot by my boyfriend (thank goodness he was around because I couldn't do much for myself during the first few weeks home).

Recovery has been a long process for me. I spent a lot of time on the couch watching TV. I initially had a lot of swelling (my lower trunk area, legs and feet really ballooned up!). The swelling went down over the first couple weeks. The pain wasn't too bad (I have a high pain tollerance), but I did rely on pain meds. And I still do actually. After a month or so, my back started really hurting (most likely due to not using the muscles for so long). That took a month or so to calm down, and now I'm having pain in my abdominal muscles (perhaps they are "re-activating" now that I am more active? I'm not sure). So yeah, I am still relying on pain meds. But I have been able to take Advil instead of the perscription meds.

I also had issues with drainage. I had pockets of stuff throughout my abdomin, and my body decided to use the laproscopic incisions as exit points to drain these pockets. It got to a point where it was quite painful and a bit infected (the liquid turned greenish). So my dr put me on antibiotics for a short while. That finally cleared up maybe two months after the surgery. I still have an open wound though. They did most of it laproscopic, but they had to do one incision in my lower abdomin, and that is still healing. Again, I had issues with infection and my body was so weak going into it that it's taking forever for my body to heal.

I was out of work for 2 months. Then I worked part time for a couple of weeks, then went to full time. I've been back to work for a month now, and I'm still exhausted by the end of the day. I typically go home, get back on the couch and nap. Like I mentioned, recovery has been a long process for me. I still need to gain about 25+ lbs before they will even discuss the next surgery. So my main goal right now is to put on weight and regain strength.

Sorry for the long posting. I wanted to share my story with you, and didn't realize how long I rambled on for, lol. I wish your son the best of luck. Despite the long road to recovery, I do not regret the surgery at all. Nothing is worse than fighting a UC flare up.

For me, it was about a month before my boyfriend could leave me for extended periods of time. Before then, anything more than a couple hours required us to make arangements to have a family member or friend be there with me. Mainly because I couldn't get up from the couch very easily on my own. I was extremely weak though, so maybe it'll be shorter for others.

Hi Canadian Chick!  I just noticed your post and that u r from GTA!  Me too! (or I was).  I was referred to Kingston General for surgery (Sept/08) by a super colo-rectal specialist...Dr Paul Belliveau.  Honestly, if you can get referred there, his credentials are awesome.  Just google and you will find out so much about his reputation not only as a surgeon but as a compassionate human being as well.  Good luck with this!

Cheryl

Hey Canadian Girl. My son has been at Sick Kids until the last month at which point he turned 18 and they moved us across the road to Mount Sinai. His new GI is Gord Greenberg whom we really like. I have heard that some people find him "gruff"...he calls a spade a spade but does so with humor and my son really likes him. The people at Sick Kids told us that they value his opinion more than any other doctor's. His surgeon is Helen MacRae. She is supposedly the best and does the proceedure laproscopically. However, she did come across very cold and calculating which really turned my son off. After speaking with many doctors, including those at Sick Kids who Dillon loves, we have come to the conclusion that those are exactly the personality traits that make for a good surgeon and that it is their hands and capability that are so important and not their smile.

Thanks Collicat... I appreciate the info. I wonder if I'll be able to do the surgery through Mt. Sinai, because it's all part of the same Hospital Network.

Good luck to your son, I will be thinking of him.

Wow that's great that his surgery went well! I amreally happy for u guys... My surgery is in one week, nex Friday. I am starting to get nervous/freaked out at times but then. Just distract myself.. Question, did they do the surg laproscopically? What do his scars look like? Big? This whole time I was thinkin my surg is laproscopically, but just found out it's not.. Thank u so much for posting, it's really helping me know what to expect... I will be in hospital for six days, same withdillon?

I'm so glad to hear Dillons surgery went well! Since he has a morphine pump, I'm assuming it was open surgery? Kudos to him for getting up and walking twice! I remember that was the LAST thing I wanted to do in the days right after surgery, but it is so necessary. My fingers are crossed that he'll get to have clear liquids soon. And best wishes for a speedy recovery!

Hurray. Glad to hear things are going well so far for Dillon. I pray things only get better for him.