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Trying to recover from j-pouch

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Posted 4/28/2014 10:07 PM (GMT 0)
Yes this was the hardest surgery I've ever had. Most painful. Well didn't help they had to cut out a lot of scar tissue. I had to have a drain tube in and it hurt like hell when they yanked it out. The nurse didn't wait for them to get the morphine on board first. So not a great experience.

So I've been trying to recover emotionally and physically.

Is it normal to have pain in the rectum?

What do you do to thicken up the stool? Having the loop ileostomy really let's things flow through fast.
Posted 4/29/2014 12:19 AM (GMT 0)
Definitely a rough surgery. I had the proctocolectomy and j pouch created at the same time so I feel your pain. Since they removed your rectum with his step, it's normal to feel pain there. You'll be sore all over for a while. Take the pain meds.

The nature of the loop is fast flowing and liquid. I tried taking Imodium to thicken things up and it worked but then my output was really pasty thick and tough to empty out of the bag so I stopped taking it. I actually preferred it more on the liquid side. But always ask your doctor first before taking a bowel slower/thickener. Metamucil wafers worked pretty good for me now that I'm remembering (was almost four years ago so I forget a lot of this stuff).

Hope you feel better soon!
Posted 4/29/2014 12:29 AM (GMT 0)
It's a super hard surgery. It is completely normal to have pain in the rectum (or, more accurately, where your rectum used to be).

I had tons of liquid output from my loop ileostomy so my surgeon had me gradually increase my dosage until I was taking six tablets of Imodium per day -- I did two at breakfast, one at lunch, two at dinner, and one before bed. It was a learning process though, because originally I went all the way up to the max dose (eight per day) and had a few partial blockages. Some other tips would be to avoid caffeine, hot liquids (soup, tea, etc), and sugar (especially juice). Rice, bananas, cheese, yogurt, potato chips, pretzels, marshmallows, and smooth peanut butter are really good thickeners. If you want a "treat" that won't give you diarrhea like most sugary things, rice krispie treats are good for once in a while since they have both rice and marshmallows.
Posted 4/29/2014 2:51 PM (GMT 0)
I had surgery March 14th and it brutally tough. I spent a total of 24 days in the hospital, 9 of them were for a blockage in my small intestine, they think that I got a "kink" near the loop that resolved itself; it was very painful. In the end I know that the surgery is worth it.

halo52208 said...
What do you do to thicken up the stool? Having the loop ileostomy really let's things flow through fast.

Let me know if you find the answer to this question because I nothing has seemed to work for me. I'm on Lopermide 8 pills a day, Lomotil 8 pills a day, Tincture of Opium 4 times a day and Metamucil 3 times a day. It's not helping and I can't stop losing weight, I'm down about 30 lbs since the surgery.

I'm wearing a high-output magnum bag from Coloplast so I don't have to empty it so often, especially at night.

The surgeon offered to reconnect me after 12 days because my output was so high and nothing was seeming to help. I'm trying to hold out the 3 months so my pouch has the time to heal properly.

Like I said above, I know that in the end it will be worth it. Hang in there.
Posted 4/29/2014 4:26 PM (GMT 0)
Is the loop reversal a big surgery? Do they have to open you up again? Or do they do it all through the stoma hole? Have any of you used the gel to put in the bag to thicken it up?
Posted 4/29/2014 4:28 PM (GMT 0)
It is almost always done through the stoma hole. It is the smallest of the three surgeries -- still a real abdominal surgery with all the issues that go along with that (ileus, lots of swelling, gas, etc) but usually the easiest of the three.
Posted 4/29/2014 5:03 PM (GMT 0)

halo52208 said...
Is the loop reversal a big surgery? Do they have to open you up again? Or do they do it all through the stoma hole? Have any of you used the gel to put in the bag to thicken it up?

the reversal itself is a simple procedure. They do not need to open you up and they will go through the stoma. I was in and out if the OR in 30 minutes. I was coming out of the anesthesia while being wheeled to the recovery room and within an hour I was back in my room. I had minimal pain at the stoma site where it was loosely sutured closed. Some surgeons leave it open to heal. You'll have to ask your surgeon on how he/she plans to do it.

I'm not familiar with a gel that goes in the bag.
Posted 4/29/2014 7:22 PM (GMT 0)
Hi, just wanted to say I used the gel sachets when I had a loop ileo they worked great at soaking up some of the liquid especially at night. I still use them as I have an end ileo now. wishing you a speedy recovery x
Posted 4/29/2014 8:01 PM (GMT 0)
Thank you guys, your the best.
Posted 4/29/2014 11:44 PM (GMT 0)
Looks like you've gotten a lot of great advice above. Just wanted to let you know, you are doing the best thing for yourself by asking questions and that means you are going to do great with this whole process!
Posted 4/30/2014 2:41 AM (GMT 0)
I gave up on the gels they worked great for my end-ileo but my output has been so high and liquid with the Loop-ileo that I went to the magnum bags from Coloplast. They will hold up to 1100ccs where the regular bags hold 600ccs.
www.coloplast.us/sensura-magnum-pouch-en-us.aspx

The magnum bags allow me to sleep through the night which I couldn't even do with my end-ileo, I would have to get up usually once a night to empty. When I don't want the larger bag then I switch the regular size bag and use gels.
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