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Hi, I'm Chase and I'm 14. Up until recently I suffered from UC. I'd been having symptoms for about 5 months and didn't say anything, before I had to be hospitalized on account of my heart rate being 230 bpm (this was unrelated to my UC, I had a heart condition that they discovered at this time as well). It was then that I told doctors about my symptoms. I got 2 units of blood in the ER (my rbc count was at 5.8, normal levels are about 15) and spent a few days in the hospital before they sent me home on Prednisone. Steroids didn't help me, so I had to go back to the hospital. They tried giving me a biologic, Remicaid, and it seemed to work, so they sent me home. I got worse and again and ended up having to go back a third time. They tried Remicaid again, but it had no effect on me (this is all in the time period of about a month and a half). I was told that there weren't a lot of options left other than surgery. So the Peds surgeons took me in for surgery later that week. It was the first of three operations. The first would be to remove my colon, the next to contruct a J-Pouch, and the final to take down the ileostomy. 

I'm about six weeks post-op from the first surgery, and I feel great. But I remember that it took a good couple weeks at first for me to not be in pain, and I only had one little incision in my belly button! It's only about a week until my second operation. The doctors told me this time there are going to more incisions, and that this surgery is the biggest of all three. Does anyone know what kind of recovery time I can be expecting from this surgery? What kind of pain? 

Tags: J-Pouch, surgery

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Sounds like you had laproscopic surgery , not open which is harder on you.. I don't see the recovery time being much different , same for the pain . I believe the surgery is a little longer, but the difference was mainly LOOSER STOOLS ,because u aren't using your whole small  intestine  after 2nd surgery.

 I found the recovery a little bit easier because I knew what to expect from after the 1st one..

 Good Luck TO YOU  BOTH.. All the Best.

  Bev

 

bev 69

I had a similar experience with UC and some of the same meds! I'm currently in between surgeries 2 and 3, same process as you.

I had my second surgery (ileoanal anastomosis) February 8. My surgery was done robotically. As far as the recovery, it was a little more difficult this time. I believe this is because the first surgery was just colon removal, but during the second the surgeon was actually "building" the j-pouch, stitching and stapling things together. I spent 5 days in the hospital (it was 6 days the after the first surgery) and felt like myself 2 weeks afterward.

Less than a month out, I'm feeling great now! I think the key for me has been giving myself time to rest and recover.

Good luck and hope everything goes well!

 

Sarah Phillips

Chase,

Glad you are feeling better.  Your situation makes me worried as I have two boys, one of which is 12 and I fear that someday one or both of them will develop UC like their mother and I.

I had my second surgery one year ago this week.  For me the second surgery had a more painful recovery but was a quicker recovery than my first surgery.  This was due to being healthier going into the second surgery.  My biggest issue was learning a new stoma and what made it happy.  My stoma after the second surgery didn't stick out as far and I had a hard time getting a good seal.  I ended up using a belt to keep my bag and seal tight around my stoma.  Once I started using the belt I had far less issues.

3rd surgery was in July of last year and other than some issues right after surgery it has been well worth the pain.  You'll get there, best of luck.

Ryan

DolphinFan

Chase,

Good luck to you buddy  I am 37 and experiencing this and having a hard time with it.  Being a teenager is hard enough without having something this thrown at you.  The recovery from the second surgery is probably a little bit tougher than the first.  This surgery is a lot more invasive than the first. It will probably be a little bit easier on you because you do know what to expect.  For me the worst part of it was passing the mucosis I was running to the bathroom 15or so times a day.   My pain levels from the second were the lowest of all three surgeries.  I just had the third surgery three weeks ago and it was a breeze.  I was out of my hospital bed and walking nearly as soon as they put me in it.  Getting use to the new plumbing is the hard part now and the pain from "butt burn is debilitating.  I would highly recommend buying a portable bidet from amazon and using this to cleanse instead of toilet paper also have a jar of Ilex cream handy.  Make sure the docs. manage your pain properly and dont be afraid to ask for more pain killers if needed.  This whole process is hard enough no need to suffer more.  One of the worst things about this is the time spent healing only to be cut on again and start the process all over.  I am glad all of this is in the rear view mirror now and I can finally start healing for good.

Good luck to you buddy and if you handled the first surgery you can handle the rest.  The next two surgeries are just milestones and not nearly as psychologically trying.

KO

Thank you all for your encouraging comments, I can't wait to lose this bag,at almost 52  years old, I love kick box and play multi sports several times a week the South Texas weather is beautiful,from biking to swimming ,I hate for anything to hold me back,even my own body,being an Aries,it's hard for me to not push  myself. Again everyone take care and keep the great advise coming!.

NewJersey64

Chase.....you sound like a very, very bright 14 year old!  Consider what you're going through as a journey.  You might even want to keep a journal so you can look back at all of this when it is well behind you.  You are going to learn so much about your body and its new "plumbing".  Much of everything you'll experience is brought about by trial and error on your part.  What doesn't seem to work for you one day, one week or one month may turn right around and be the answer you were looking for!  I found I don't have to avoid any food or drink I want.  For some I need to be prepared.....such as using a barrier cream when I want to eat very spicy foods.  You'll experiment and find answers for yourself.  Do give yourself time to heal.  I was quite a bit older than you when I had this surgery and it took me awhile to regain the energy I was used to having.  For instance, in the early stages of healing, sleep when your body tells you to do so.  With the attitude you seem to have, I'm sure you will do very well!  Best wishes!

C

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