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Posted 5/16/2015 2:32 AM (GMT 0)
Hey everyone! Is there anyone here who has a j pouch?

I am having surgery next Friday May 22. 2 steps.

My surgeon thinks I can have my takedown surgery as soon as 6 weeks post op. From other things I have read, it doesn't sound very typical. Is it realistic to expect surgery # 2 to be completed that soon? That is very important to me. I want this done and over.

Anyone please share your story or opinions. Also, if you have tips or things I should know that they don't tell you, please share!
Posted 5/16/2015 11:19 AM (GMT 0)
I had j pouch surgery five years ago. It's definitely possible to have takedown 6 weeks after your first surgery if it all goes off without a hitch. People have it like that all the time. My takedown was 4 months after because I developed an abscess/infection after my step 1. So I had to wait for all that to be resolved.

The one thing I'll tell you is after takedown things may be a little crazy for a while. Some surgeons don't warn their patients adequately I think. It takes time for your body to adjust. It gets better with time. I'm so grateful for my j pouch. It gave me my life back and I say that literally! Good luck!
Posted 5/16/2015 1:02 PM (GMT 0)
Thanks! My surgeon says I may be going #2 several times a day, but thats really all he said. I tried to get an idea what that meant, but I am not sure I'm prepared for that as I haven't been SUPER sick until very recently. So the adjustment period REALLY scares me. Will I be able to hold it? 10 times a day? 20? haha.
Posted 5/16/2015 1:26 PM (GMT 0)
Well, it's all very individual really. Some people may be going 20x a day right after while others will only have a few bm's a day. I was around 10 or 12x a day right after. about three weeks later I was down to 6-8x and a couple of months later it was down to 4-6x a day. I've been holding at an average of 4x a day now. I never had an issue holding it. Even immediately after. It's so much different from a UC feeling when you have to go. I have learned that everyone is SO different with this procedure. Just keep a positive attitude. There are a few j pouchers here that stick around here to offer help so don't hesitate to ask. Jpouch.org is a great web site too. :)
Posted 5/16/2015 3:30 PM (GMT 0)
Thanks for the encouragement! I went to jpouch.org, but honestly a lot of stories that I happened to first read were not so positive and I wanted to stop reading. hah!
Posted 5/16/2015 4:05 PM (GMT 0)
I know what you mean and I understand! Just remember these are support sites so the people here are having issues and seeking support. The majority of j pouchers (and people with UC for that matter) are out living their lives and not posting on support sites. I just stick around because I remember how scared I was and I just want to give back when I can.
Posted 5/16/2015 6:52 PM (GMT 0)
I had my J-Pouch surgery this past Oct and takedown in Jan (4 months ago). My surgeon would not schedule takedown until 3 months had passed...he felt that was the time needed to heal. I can honestly say that I did not feel like I had all my post-surgery energy back until about a week before takedown. But after that step I had full energy back within a week. My surgeon also told me I would probably curse him for the first 3-6 months! He did not sugar coat what the post-takedown period would be like and I appreciated his honesty. 4 months out and things are definitely settling down. There is a lot of trial and error during this period figuring out what works for you (fiber supplements, immodium, probiotics, etc. etc.). I still have a problem with salads, raw veggies and fruit with skins (just irritating on the way out). However lucky for me my pouch has no problem with beer, pizza or martinis! Go figure! When I tell friends/family about the procedure I explain that the pouch functions more like a bladder than a colon (and most of the time is just as easy to empty).

You may also want to check out the ostomy forum here on HW...lots of j-pouchers out there...just search for whatever topic you are interested/concerned about. Good luck! I'm thrilled with my J-Pouch so far.

Vicki
Posted 5/18/2015 5:30 PM (GMT 0)
My take down (which was done 3 weeks ago) was 6 weeks after the 1st surgery. I've had no problems at all. The stoma site wound has been slow to heal, but never any infection or complications with it. I'm going 5x/24 hrs., and have been since just a couple days after coming home. The "up inside" itch is pretty much gone now unless I eat spicy stuff, but even then it's not significant. So far I'm considering it a great success.
Posted 5/18/2015 7:42 PM (GMT 0)
There is no standard time for take down. It's dependent upon patient health, patient history of medications, and surgeon preference. Some have had reversal within a few days; others up to a year. My reversal was supposed to be at six weeks but my surgeon was traveling so it was done in week 8.

Sue
Posted 5/19/2015 1:58 AM (GMT 0)
My reversal was 13 weeks later, but I had three steps because of my poor health at the time of my colectomy (lots of steroids, Remicade, malnutrition, etc). 6 weeks is definitely not unheard of, especially if you're relatively stable now.

My frequency has always been around six times per day. It went up to more like 8-10 when I started introducing more variety into my diet, but it's settled back to about six and stayed there pretty consistently. It took a long time for me to sleep through the night, but now I sleep through about half the time (otherwise I get up once).

The tip I give everyone is to get a bidet attachment for your toilet, preferably one that spits out warm water -- it's very easy to install and only a couple hundred dollars. It's just a luxury for me now, but during my recovery period I think it helped me avoid a lot of the butt burn issues that others deal with. Anal irritation is MUCH easier to prevent than to treat, so stay ahead of it and treat your perianal skin delicately. Barrier cream (e.g. A&D ointment) will help keep output off your skin and keep it from getting irritated, but once your skin is irritated it has to heal on its own and it's hard to speed that process up.

Be careful about introducing probiotics and fiber supplements to your diet. For every j-poucher that swears by something like that, there's someone else whose pouch is irritated by the same thing. Change things one at a time so you can tell what's going on.

Don't get discouraged and good luck! I am very happy with my j-pouch.
Posted 5/19/2015 10:18 AM (GMT 0)

Pluot said...
The tip I give everyone is to get a bidet attachment for your toilet, preferably one that spits out warm water -- it's very easy to install and only a couple hundred dollars.

That "only" couple of hundred of dollars is an awful lot of money to me right now (and probably for the rest of my life cry)

Do you think a container with a spray nozzle filled with warm water would work as well? This is an issue I'm quite worried about, given that I had the most agonising butt burn possible before surgery. (Think it was a fissure just outside of the butthole. How can one miniscule cut be that painful, it's ridiculous!)
Posted 5/19/2015 12:53 PM (GMT 0)
NCOT...the bottles work fine (got one on Amazon for under $10 and used that when traveling). I got a sprayer attachment (looks like the kind on a kitchen sink) for the toilet at HomeDepot for $35. It does just come out with cold water but that works for me. I did not have electricity near the toilets so the "heated" water was not an option unless I was willing to get in an electrician, etc.

Vicki
Posted 5/19/2015 2:12 PM (GMT 0)
I'll look into the sprayer attachment, but it might be easier and cheaper to fill up a bottle with warm water heated in the microwave. Cheers for the suggestion, ladygolfer.
Posted 5/19/2015 4:49 PM (GMT 0)
Ncot,
I personally wouldn't waste money on a bidet. A squirt bottle will help the same and you probably wouldn't even need it for long.
Posted 5/19/2015 5:03 PM (GMT 0)
Squirt bottle - I knew there was a simpler term for it >_>.

Yeah, I think I'll just go for that, as I really am trying hard to save money or, at least, not waste the little I've got left. Cheers, ByeBye.
Posted 5/20/2015 12:29 AM (GMT 0)

ByeByeUC said...
I had j pouch surgery five years ago. It's definitely possible to have takedown 6 weeks after your first surgery if it all goes off without a hitch. People have it like that all the time. My takedown was 4 months after because I developed an abscess/infection after my step 1. So I had to wait for all that to be resolved.

The one thing I'll tell you is after takedown things may be a little crazy for a while. Some surgeons don't warn their patients adequately I think. It takes time for your body to adjust. It gets better with time. I'm so grateful for my j pouch. It gave me my life back and I say that literally! Good luck!

I had my reversal last Thursday and have been home a couple days now. Things are really crazy!! Constantly running to bathroom and having major pain while going. Did you experience this? Feels like my stool doesn't want to come out with ease, I start tensing up and everything gets tight.

Thanks
Posted 5/20/2015 10:24 AM (GMT 0)
Yes the first couple weeks were pretty crazy for me but it quickly calmed down after that. If it anytime you feel something isn't right don't hesitate to call your surgeon. The tensing up feeling are spasms and I hated those! They will stop soon. I had those for a few weeks. Make a list of concerns for your surgeon for when you have your follow up apt.
Posted 5/20/2015 2:40 PM (GMT 0)
Thanks Marianne. The spasms are horrible and the surgeon situation sucks too. I had my 3rd surgery in Boston. At the time of my first two I lived close by. Between the 2nd and 3rd though I moved to Colorado. I flew back to Boston for my 3rd then went back to Colorado after getting discharged. My surgeon knew of all this and said it would be fine. Now Im having these intense spasms to the point urine is coming out unintentionally. I had a feeling I was discharged to early. Im going to stick out though and see how the next couple days go, if they dont calm down Ill contact him.
Posted 5/20/2015 4:18 PM (GMT 0)
Oh wow....that's a tough situation with your surgeon being all the way back in Boston. You're not feeling well right now so could you delegate someone to research colorectal surgeons (with j pouch experience) in your area? In case you need to see someone right away. Or even GI doctors who have j pouch experience. You're going to need someone knowledgeable for the future. (For routine scopes and such) Hope it calms down soon but expect at least a few more weeks of being unsettled. Hang in there.
Posted 5/21/2015 1:23 AM (GMT 0)
I have used an antispasmodic medication (hyoscyamine) in the past, it really helped me with spasms in my Jpouch.

My surgeon is too busy to see me, I use a GI/IBD specialist who is very familiar with Jpouches and has lots of Jpouch patients. You might be well served by using a GI who has experience treating jpouches.
Posted 5/21/2015 2:03 AM (GMT 0)
Backing up a bit, I too just try to help now and them . My daughter is at wk 8, post takedown. She had a 3 step, and she could not have handled much more than the 3 month intervals--BUT, she was quite sick and. needed to flush biologics and steroids from her system. I think the experienced surgeon is key, heck what do we know until we are in over our heads? If they have seen hundreds or even thousands, they know what intervals work. BTW, she is so very happy right now. Pouch working fine, energy coming back, no pills, no pain, no mom nagging to take crazy alternatives, no more self blaming and daily fear. Come to the Ostomy forum as you get closer. It is a long road, you will need a posse. Best
Posted 5/21/2015 6:25 PM (GMT 0)

ByeByeUC said...
Oh wow....that's a tough situation with your surgeon being all the way back in Boston. You're not feeling well right now so could you delegate someone to research colorectal surgeons (with j pouch experience) in your area? In case you need to see someone right away. Or even GI doctors who have j pouch experience. You're going to need someone knowledgeable for the future. (For routine scopes and such) Hope it calms down soon but expect at least a few more weeks of being unsettled. Hang in there.

My surgeon being in Boston really sucks be he is awesome at keeping in contact with me. I spoke with him yesterday explaining the intensity of the spasms and bathroom frequency. He asked me to go to a liquid diet for two days and then contact him with an update. I started this today and the bowel movement have hopefully ended to give things a rest and hopefully for my poor butt skin to heal up a bit. Thanks for your replies.
Posted 5/21/2015 6:30 PM (GMT 0)

ks1905 said...
I have used an antispasmodic medication (hyoscyamine) in the past, it really helped me with spasms in my Jpouch.

My surgeon is too busy to see me, I use a GI/IBD specialist who is very familiar with Jpouches and has lots of Jpouch patients. You might be well served by using a GI who has experience treating jpouches.


Thanks! I will bring this up with my surgeon. Right now I have two pains pills they have given me, hyrdromorphone and oxycodone. They both seem to help to deal with pain until I'm actually in the process of going to the bathroom. While that is happening it's almost unbearable until I'm finished. I try to relax myself but find myself grabbing whatever is close by to squeeze and getting very worked up. Maybe your suggested med will help me chill and be able to relax while going. Thank you again.
Posted 5/22/2015 12:06 AM (GMT 0)
Angela, I'll be right behind you--I'm having my j-pouch surgery the 27th. I'm excited and nervous about it--can't wait to start healing, but hope I don't have complications. My surgeon and GI say six weeks till the takedown, barring complications.

For what it's worth, I have a bidet attachment that I got from Rinse Works for $49. It's cold water, but it's been a butt-saver for my UC and will be after the takedown. I'm eyeing those pricey bidet seats with warm water, but haven't taken the plunge yet.

Good luck to us!
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