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

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Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/24/2009 6:49 AM (GMT -7)   
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.

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 8/24/2009 7:27 AM (GMT -7)   
Hi Collicat

Sorry to see you back on this forum - I was beginning to hope that things were looking up for you. My son Anthony finished stage two of the 3 stage j pouch almost two weeks ago. There is so much information that it would be impossible to put it into a post, but I'm more than happy to share what we've experienced so far. My email is mariamarchigiano@gmail.com. If you want to contact me and give me a phone number to call you, I am most happy to fill you in on our side of things. If not, if you have specific questions, I am all ears. Good luck and hope to hear from you. Maria

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/24/2009 8:59 AM (GMT -7)   
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.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/24/2009 12:11 PM (GMT -7)   
Hi Mamaluke an Chasblah. Thank you both for replying. Mamaluke, I was actually looking for you on the UC forum, but I guess you moved over to here which makes sense. I am wondering how long it took, for both of you, to actually start to feel good after surgery? Mamaluke, as I remember it was 3 months between Anthony's surgeries? Did he feel really good when he headed into the second surgery and was it a real setback to have to go through surgery again? Chasblah, what made you change your mind and decide on the j pouch? I am so glad that even with the complications that you had that things have turned out well. Do either of you have any tid bits of information concerning the time right after surgery...things that you wish you had known before hand? Mamaluke, I really appreciate the offer of direct communication and I may take you up on that if we find we are having issues after surgery. Thank you both for your time in replying. Cathy

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 8/24/2009 1:16 PM (GMT -7)   
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

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/24/2009 6:50 PM (GMT -7)   
Well,
It took me about 3 months to really start feeling good. I felt better right away, because I wasn't running to the bathroom all the time and nauseated and I could finally really eat.
But the recovery from actual surgery was long. I think it would not have been as long if my original surgery didn't have complications. The first was laproscopic and I was up and walking a day later. But The second was open, and I was dealing with a bit more. It was hard and emotional. I had ups and downs, but everyone does and we get through it. Especially when I started eating food I hadn't eaten in years (pizza, ice cream, etc.).
Plus, I got to get off my meds and boy does that help your outlook on things.

Dealing with your bag and ileostomy is so weird at first. But not dealing with cramping and bloody diarrhea was a relief. I would recommend looking at as many pics of stomas as you can through the internet. They are weird look and kind of gross. But you get used to it. The first time I ever saw one, i cried and gagged at the same time. But that exposure helped to desensitize me. If your son won't look at them, then at least you should. Esp. since you will probably be the one doing the changing at first. Even if you are grossed out, tell him you don't think it looks that bad. It'll make him feel better, even if he doesn't believe you. Make it sound believable.
I would encourage him to try his own changing after a few weeks. When he feels good enough to stand/lay down and look at his abdomen. It is very liberating when you can change all by yourself.
Until then, wait on him Hand and Foot! Do everything for him. Just be in mommy mode!

For me, I didn't find the home health nurses as helpful as the nurses in the hospital. Have them help you learn to do a changing. And the help, support, and advice of the people on this site.
Also, for me, I prefer toilet paper to paper towels on the stoma area to clean up the spurts. At first, I needed rubber gloves to do it all, but then I got over it and go bare handed :)
But most of all, be soo patient with him. If he cries, or is mad, or depressed, just encourage him and be patient. Even if he's not open to you, he'll still need to hear it. Things to say: 'It doesn't look as bad as I thought' 'I don't think it smells bad' 'I can't see it under your clothing at all'

Things I wish i would've known b4:
That I would have a butt tube when I woke up.
That I would have an NG tube when I woke up.
That I would have to wear loose clothing for a long time. - no jeans for a few months.
That I would be able to go swimming/be active/not have joint pain.
All the appliance lingo.

One of the best pieces of advice I got was to try as many samples of appliances you can get. Ask everyone (mostly convatec, coloplast, and hollister-the big three) and ask again if your not sure. (for paste, rings, one/two pieces)

I decide that I will have the j-pouch surgery, because, I just gotta try. It's not fun to have an ostomy. It is far better than u/c, but still not fun. So, if I have the option, I gotta try. If it fails for whatever reason, I'll be sad, but manage. I know that having an ileostomy is really not so bad.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/24/2009 10:29 PM (GMT -7)   
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...
my name is Isaac, 24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
ALWAYS sick with something either mild or serious, all related to UC and the medication
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
j pouch surgery is scheulded for sept 11, 2009! soon i will be med-free!


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/25/2009 6:35 AM (GMT -7)   
Nice to "meet" you Ruissarr. Boy you have had a long haul from 17 to 24! As you said it is so hard to get our heads wrapped around what the upcoming months will be like. I keep going back to the fact that I have not heard one person say that they have regretted this surgery...so we just need to look down the road, even if it is a year away, and picture what life will be like. I am sure that helps get you through some of the tough times. Since my son, Dillon, will be having his surgery by next Wednesday, at the lastest, we will be able to give you some more insight. Try to keep upbeat as much as possible. I hope that you are actually feeling okay at the moment. Although, I could understand how that would make it possibly harder to go through the surgery. Dillon is actually very ill, so the decision has been taken out of our hands, which in some ways makes it easier. Again, nice to have you to chat with and we will keep in touch. Cathy

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/25/2009 6:38 AM (GMT -7)   
I forgot to add "congrats" on the baby....how exciting that is and by January you should be feeling so much better!

ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/25/2009 7:47 AM (GMT -7)   
ya thanks!! we can definately keep in touch, sorry to hear dillon i so sick, thankfully i am feeling almost ok, i have blood, and D about 10 times per day and it hurts, but only when i am in the restroom,, its funny tho, to type that, it sounds pretty bad, i think i am just used to it.
i have been very sick many times tho, last year this time, i missed 2 months of work and lost about 30 lbs in a few weeks.. i am actually a little overweight now, i guess thats a good thing for a UC patient...i think this surgery will be a livechanging/saving thing and i am very positive and excited about it...just wish it were here today! our whole dept here at the company i work found out we are all getting laid off, thankfully we are working till march so they can hire replacements in the texas office, so it works out perfectly to pay for the surgery and the baby.. but man is it hard to sit here and work, i take phone calls for blue cross blue sheild of oklahoma, i live in tulsa.. i am ready for the surgery, oh also, we get to find out the sex of our baby 2 days before the surgery! so i have some happy thoughts to think about while i am in...
oh also, i dont know if i will have a computer in the hospital, but i always have my iphone, you can email me if u want, if ur son wants to talk, thats cool also, i was 18 a few years ago myself LOL, email is It's best not to put your email addy in a public forum - you leave it open for spammers to harvest. You can put it in your profile if you want people to contact you, it's much safer!... Shaz

Post Edited By Moderator (Shaz032) : 8/26/2009 6:03:45 AM (GMT-6)


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 8/25/2009 7:59 AM (GMT -7)   
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.
GeminiSunset
Diagnosed w/IBS: Oct. 2006  Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
1st Surgery for J-Pouch: May 22, 2009 - need 2 more surgeries, dates TBD
Medications: Canasa Rowasa enemas; Lialda; Prednisone; Protonix; Remicade; Zyrtec-D; Toprolvarious pain meds post-surgery;
Supplements: Women's One-a-day multi-vitamin; Super B-complex
Current Status: Aug, 2009 - Recovering from the 1st stage of J-Pouch surgery; temp ileostomy; 2 more surgeries to go as there was too much damage to create a J-pouch


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/25/2009 8:22 AM (GMT -7)   
Thank you all for your time spent in replying. You really are a wealth of information! Mamaluke and Chasblah...thank you for bringing home the point, for those of us around Dillon, to remain calm and upbeat and patient and encouraging. I know we need to do those things but I am sure there will be times when I need that little voice in my head reminding me! Geminisunset...I am so glad to hear that you are starting to feel better after being so sick. Another question for all of you....approx how long do you think I will need to be off of work to stay home with Dillon? I am sort of thinking a couple of weeks and then if needed going back for shortened days for a little while. I guess the question is how long (and I know everyone is different) until the patient can be alone for the day but have family around in the evening?

geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 8/25/2009 9:37 AM (GMT -7)   
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.
GeminiSunset
Diagnosed w/IBS: Oct. 2006  Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
1st Surgery for J-Pouch: May 22, 2009 - need 2 more surgeries, dates TBD
Medications: Canasa Rowasa enemas; Lialda; Prednisone; Protonix; Remicade; Zyrtec-D; Toprolvarious pain meds post-surgery;
Supplements: Women's One-a-day multi-vitamin; Super B-complex
Current Status: Aug, 2009 - Recovering from the 1st stage of J-Pouch surgery; temp ileostomy; 2 more surgeries to go as there was too much damage to create a J-pouch


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 8/25/2009 10:26 AM (GMT -7)   
I'm sorry, I don't mean to get a bit off topic, but Collicat, can you tell me what surgeon you will be seeing? I am from the GTA and I'm just starting this whole process of finding a surgeon. My GI will probably want me to go through his hospital - Toronto General - but I don't know enough to know if a good surgeon is there or not. Do you mind telling me where your son is being taken care of?
Thank you... this whole process is a bit overwhelming.

Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 8/25/2009 10:42 AM (GMT -7)   
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
 
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 Ileostomy Reversal March 9/09


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 8/25/2009 10:49 AM (GMT -7)   
Thank you Cheryl - I appreciate the info. I will google him for sure!

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/25/2009 11:07 AM (GMT -7)   
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.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 8/25/2009 8:53 PM (GMT -7)   
Collicat,
I too would recommend taking a month off. I needed help for that long. There are things you just can't do alone (and aren't supposed to do). If your work would allow it, I think that is the right amount of time. If you can't take that much time off, maybe another family member could take over.

GeminiSunset,
I forgot about the backaches! and I forgot about alot of the stuff you just reminded me of. lol.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 8/26/2009 5:28 AM (GMT -7)   
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.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 9/3/2009 9:29 PM (GMT -7)   
Hello to you all. Dillon had his surgery yesterday and all is as well as can be expected. Actually better than I expected. The surgeon told us that Dillon's colon was one of the worst that she had seen and that it absolutely had to come out. I cannot explain to you the sense of calm that I have now. I know that there is still a long road to travel and that there will be bumps in the road but I truly feel, in the end, this will all be history and he will finally be able to move on with his life. To those of you heading in this direction, so far things are easier than either of us imagined. Surgery was three hours but he did spend five hours in recovery due to a low respiration rate, but only time was needed to fix that. He was in a fair amount of pain yesterday, but he has a morphine pump that handled that pretty well. The pain is actually much better today (he is still using the pump but much less) and he has been up walking twice today. The first time was pretty overwhelming, but I truly believe most of it was due to his worrying ahead of time about how awful it was going to be...the reality was that it was much easier than he thought. I am not saying that it has been a walk in the park...far from it...but things have been MUCH easier that we had feared. He still can only have ice chips to suck on and that, for him, has been the worst part of the whole thing. He so badly wants a drink of something. His stoma has started to "fart" so hopefully tomorrow they will start him on some clear fluids. The surgeon has warned us that day 4/5 are very often the worse and not to get discouraged if he seems to start going backward. At least we know this ahead of time.

ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 9/4/2009 5:30 AM (GMT -7)   
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?
my name is Isaac, 24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
ALWAYS sick with something either mild or serious, all related to UC and the medication
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred

we will have our new baby January 25, 2010 :)


1st stepj pouch surgery is scheulded for sept 11, 2009! soon i will be med-free! Will have part two around November 11 if all goes well, dr said I will stay home from work for three months, oh and I'm getting laid off, last day of work is march 26, 2010, just enough time...


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 9/4/2009 6:18 AM (GMT -7)   
Collicat - so happy you posted to let us know that Dillon did so well. We have been checking frequently to see if you had had a chance to post. The thirst is amazing, but soon he will be able to get something to help that. It's great that his stoma has already started to work. That is really a great sign. Day 4 or 5 might be tough but mostly because the reality begins to set in, but I think you're prepared for that.
 
to update you on anthony so you can look forward a bit. He is now 23 days post 2nd stage. It has been a journey because one thing he didn't epect was a need to evacuate (through the little bit of colon he has left) a lot of drainage. He feels a frequent urge to go, even though he passes a minimal amount. Though frustrating, his surgeon says it's actually very encouraging becaus it means his sphincter muscles are still working well. But this symptom is slowly slowing down and the good news is that he is now at the beach with his girlfriend for 5 days....................so...............it gets better. Good luck and PLEASe keep us all posted.

geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 9/4/2009 6:20 AM (GMT -7)   
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!
GeminiSunset
Diagnosed w/IBS: Oct. 2006  Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
1st Surgery for J-Pouch: May 22, 2009 - need 2 more surgeries, dates TBD
Medications: Canasa Rowasa enemas; Lialda; Prednisone; Protonix; Remicade; Zyrtec-D; Toprolvarious pain meds post-surgery;
Supplements: Women's One-a-day multi-vitamin; Super B-complex
Current Status: Aug, 2009 - Recovering from the 1st stage of J-Pouch surgery; temp ileostomy; 2 more surgeries to go as there was too much damage to create a J-pouch


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 9/4/2009 6:20 AM (GMT -7)   
Hey Ruissarr. Please don't get too nervous. You can see from my posts that that is exactly how we were feeling last week and surgery was so the right thing to do. Dillon's surgery started out laproscopically but at the end when they were taking the bowel out the surgeon was concerned due to how inflamed the colon was and she made about a three inch incision. He has two tiny holes, two stapled incisions about 2-3 inches each and the stoma. He was very worried to see his belly the first time but both he and I again think that it is not near as bad as we had thought it might be. The stoma is going to take a little getting used to but again not a really big deal. I cannot stress enough the improvement over Tuesday when he was having bloody D every 45 min. The surgeon was just in and said that she would see us Tuesday after the long weekend so that means we are at least here until then...that would be 6 days. Ask anything and we will try to answer. I will try to get Dillon on to talk to you if you would like. All the best, Cathy

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 9/4/2009 8:44 PM (GMT -7)   
Hurray. Glad to hear things are going well so far for Dillon. I pray things only get better for him.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."

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