Take-down question for J-pouchers

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Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 8/10/2011 10:05 AM (GMT -6)   
My daughter (ElddiReMsihT) is having her take-down surgery in two weeks on August 24. Our concern is how much pain there is initially? Everyone mentions gas pain - is it intense? A few times since her second surgery she has had her bag get very full during the night and has had output get past the loop ileo which has caused severe cramping. She's worried that she's going to experience that kind of cramping with take-down. Any insight? Would also like to hear about recovery - how often did you have to go and how many weeks before things began to settle. She had such a rough time recovering from the second surgery and is finally doing well and putting on weight. We're hoping things go more smoothly this time around. Thanks so much for any input!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 8/10/2011 7:26 PM (GMT -6)   

 

Hi Rachel'smom

I am glad to hear she is doing better, have been thinking about her.  My daughter had an epidural and a pain pump with hers.  Her surgeon had told her to be ready to go between 10-15times a day.  She was only going 6 times at the most.  Getting up once a night, but not every night.  She really hasn't had the gas pains as some of talked about.  She was in the hospital 4 days.  I don't think she took all the pain medicine they gave her.  Maybe about a week after she got home she started feeling better and wanted to do things.  Have had a little problems with pouchi*** and her loosing some weight down to 85lbs again.   Also having  problems with a striture.  She is 4 months post-op seems to be doing well .  Her GI had put her on vsl#3 they say that is good for pouchi***.  Can't really say how many times she has been going now.  Counting trips to the bathroom isn't a good thing (lol).  I don't notice her going a whole lot.  She is planning on returning to school when it starts.  I hope her last surgery goes well for her and she has a better recovery.  I will be thinking of her on the 24th


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/11/2011 3:41 AM (GMT -6)   
Rachel's mom, i'm so glad to hear she's doing better. i never went through a take down, but just wanted to wish her best of luck!! and an easy and smooth recovery! hope it all works out best! keep us posted!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 8/11/2011 2:17 PM (GMT -6)   
I had some pretty intense pain in my upper right rib area for about 9 days after surgery. It may have been from the inleus (sp?) that surgery causes because it kicked in after I started having BMs again, and was pretty constant, so i don't think it was gas pain alone. But it wasn't so horrible that one pain pill did help a lot and it dissipated and disappeared fairly quickly. It was helped by heat as well. But gas pain during the first week or two is normal. Other than that, i didn't have any pain. No incision pain from the actual ostomy site take-down and no pain when going to the bathroom. I would however suggest that you go ahead and get some calmoseptine to have on hand if she gets any butt burn irritation. I use it every now and then cause sometimes I get itchy and its great! you have to ask a pharmacist for it because it's kept behind the counter (No prescription needed though) and of course, only use baby wipes from now on. I bought an electrical bidet seat and I LOVE it. it has totally been a wonderful investment. I still have some overnight seeping, so i wear a large feminine pad when sleeping, but its nothing like the first week, where I completely lost control one night in the hospital and the pad was soaked! just a spot here or there, but I'd rather be safe than cleaning my sheets and undies. I'm 2 months out going 7 or 8 times a day including once at night so i'm right on schedule. I had a difficult go through my ileo and the j-pouch was and is much easier for me to handle. I left the hospital on day 3, (surgery was monday, left on Wed.) The hardest part is the gas, because often you will feel like you need to have a BM, but its just gas and for the first few weeks at least, you won't be able to differentiate between the two. Plus it takes time to learn how to, erm, fart, without you know, having an accident. lots of feeling like you need to go 5 minutes after getting out of the bathroom while you adjust to emptying. It can take a while to empty at first, like 10 mins. But it improves rather quickly. one week after she will feel much different as well as 2 weeks and 3. But for me, i was pretty good to go at 3 weeks, all in all, the easiest of my 3 surgeries. Good luck to her and you!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/11/2011 3:15 PM (GMT -6)   
Some experience severe gas pain at the reversal. Mine wasn't bad. The best things to do are to walk, and continue walking. Also chew gum. Pain medication won't touch gas pain. But the good news; although awful, it's not like incision pain which tends to linger.

Sue

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 8/11/2011 8:56 PM (GMT -6)   
I didn't have hardly any pain after takedown and it was nothing like my first two surgeries - had the 3-step. It's been about nine months since mine but I don't remember having much gas pain. There is definitely a learning curve with the j-pouch - wasn't quite prepared for that. I had lots of urgency in the beginning. Still trying to figure out how certain foods affect me but overall I'm doing great. I second the bidet seat. I hadn't even heard of them until I was on a jpouch.org board one day. It's definitely the best purchase I've ever made in my life. Good luck!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/12/2011 4:05 PM (GMT -6)   
Yay! Glad to hear it's in the near future:)

Sorry, I don't have any first hand experience...just make sure you've got some calmoseptine lotion and moistened wipes instead of tp!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4544
   Posted 8/12/2011 5:51 PM (GMT -6)   
For me the gas pain was uncomfortable but it was managable. I didn't have it until I got home from the hospital and then it only lasted about 3 days and then I was feeling better. Takedown was so much easier compared to the first surgery so I really breezed thru it. Two weeks after takedown I was enjoying a cheeseburger and a milkshake and I was totally fine with it!

Best wishes to your daughter! :)
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-Tried diets-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC!!! Very happy with my results of this surgery!

ctrysinger
Regular Member


Date Joined Oct 2008
Total Posts : 30
   Posted 8/14/2011 1:03 PM (GMT -6)   
Good luck to Rachel!! I will be thinking about you both during her procedure. I just had my take-down on July 28 so I'm not too far along in the recovery process, but can tell you what I've experienced so far. I had very little pain. The gas pain that I had was all over my body. It was uncomfortable, but tolerable. My biggest recommendation when in the hospital is to WALK WALK WALK. That will help move the gas along. I took pain medicine occasionally, but not constantly. When I had my bag, I had to dump it a couple times during the night. I had the 3 steps and after the j-pouch surgery, I had difficulty with things moving through me too quickly. I took Lomotil and Metamucil to slow things down. After this surgery, I've had the same problem. I'm now taking Lomotil, Metamucil, and Imodium. I was in the hospital 5 days and once I got home, my bm's picked up speed. I was going around 40x daily. Now I'm down to under 20. I have a lot of spasming in my rectum which is probably the most painful part. I do have some gas pains, but the Imodium helps to move the gas along (I've also tried Gas-x which helps). The muscles in my bottom are sore, and when I stand up it's as if things go straight down to my rectum and I have to poop immediately. I'm going for a check-up this week so I'm hoping they can give me more tips for what to do. It's been 2.5 weeks since surgery and I'm still not eating too well. I'm not hungry. I was told that it will take a while to get my appetite back. In the meantime, I've lost some weight - probably about 10 pounds with this surgery. I'm little to begin with so 95 pounds is not great. I can't put the weight back on because the calories don't stay in me long enough since everything shoots right through. I've had a hard time adjusting. I hated the ostomy bag, but at this point, I'm still wishing I had it. I've only left the house a few times since getting home from the hospital. I wear Depends all the time because I occasionally have accidents. Sometimes I think I just need to pass gas and it's not. I recommend wipes and butt creams (Desitin, SensiCare, etc). I don't want this to scare you because everyone recovers differently. I have done pretty well, just have been going to the bathroom probably more than most people with the reversal. I've been told it may take some time for my body to readjust, but it will get there. This surgery was by far the easiest of the 3!! I'll be praying for you both during her time of surgery and recovery!! Best wishes!
 
 
25 year old female
-October 2007 Crohn's diagnosis
-Tried Asacol, Lialda, Remicade (anaphylaxis during 5th infusion), 6mp (liver toxicity), Imuran, Cimzia, suppositories, enemas, and Prednisone
-June 2010 Multiple Blood Clots (DVT, PE, portal vein clots)
-October 2010 Emergency Total Colectomy - diagnosis changed to Ulcerative Colitis
-May 2011 J-pouch surgery
-July 2011 Ileostomy Reversal
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