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Cramping with disconnected J pouch question - can you advise?

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Posted 10/29/2014 1:46 PM (GMT 0)
Hi all,

For those of you on this forum and the jpouch forum, please excuse the duplicate posts. I am trying to reach the broadest group for this question.

My jpouch is still unconnected (have loop ileo), but I am scheduled for takedown surgery on Jan. 7th. Normally, I do not have any trouble emptying my jpouch of it's mucous and little bit of stool that gets down there. However, on 3 occasions, I have had trouble. Here's what happens. My ileostomy bag gets overly full for whatever reason (twice at night with gas and once when I was just super busy) and then I feel a strong cramping low in my abdomen. Feels like I need to go empty my jpouch. Most of the time, by the time I get to the bathroom, the cramping has stopped (it only lasts a minute or so) and I cannot empty the pouch. I don't strain because I have heard you are not supposed to. So, I get off the toilet and go about my day. about 15 minutes, it will happen again. If I am quick enough to get to the restroom while the cramping is happening, then I can empty the pouch. On these occasions, the jpouch has been way fuller than normal. The first time it happened, it happened at night and I got up 3 times that night and tried to empty, but couldn't. I could only empty when I ran to the toilet in the morning to catch it when it was cramping.

Do any of you all know what this is? My surgeon does not have an answer. My concern is that if this is how my jpouch acts when it is fuller, then when I have the takedown surgery, will I only be able to empty when it is cramping and I have to run to the bathroom quick in order to do it? I don't understand why I cannot empty it during these times when it is not cramping... confused Any ideas?
Posted 10/29/2014 1:51 PM (GMT 0)
I just changed my signature but it won't change on my post. My first Jpouch surgery was in Sept., 2013, not 2014. So I have had my disconnected j pouch and loop ileo for over a year.
Posted 10/29/2014 7:18 PM (GMT 0)
I wish I could offer some help here but I just don't know what that could be about. While I had my loop ileo I would have to sit and let mucus out several times a day but I never had any cramping. Just a slight pressure down bottom that let me know that some mucus was there.

The only thing I can think of is that you can have a bout of pouchitis even though you're not hooked up yet. Do you have a good GI doctor who is familiar with you and your surgery? Sometimes it's tough to get an answer from your surgeon. Hope you can get it figured out soon!
Posted 10/30/2014 4:26 AM (GMT 0)
Yeah, I don't understand the cramping part either. Is it up in your abdominal area? I remember having some spasms and discomfort occasionally before my takedown, but it was really low - down around the pelvis area, I guess in an area between my hips. I wouldn't call what I had cramps though. I also only had my loop for 3 months so I attributed it all to the nerves regenerating in the area and my jpouch healing.

There were also times when I'd be passing mucous that it wouldn't come out when I'd try but then ten/fifteen minutes later I'd be rushing back to the bathroom and it was as if some type of proverbial dam had broken.

I never had any issue with stool bypassing my stoma, so I can't really offer any advice on the function of the disconnected jpouch other then to say that since it's not being fully used all the time the organ/muscles have all still stopped working the way they normally would once in use. I can't believe your surgeon has no explanations for you. Has he/she at least offered any suggestions??
Posted 10/30/2014 6:46 PM (GMT 0)
No, my surgeon has not offered any suggestions. :( I have another appointment scheduled on Dec. 2 with him to discuss some last questions before takedown and I will try and talk with him about it again. Just don't want that to be how I have to empty all the time after takedown...you know what I mean? I would rather have the bag if that is what it's going to be like.

Marianne - Thanks for the well wishes. Talking to a GI is a good idea. I have a GI I like but she is very difficult to get into (only has office hours 1 day/week). I did just make an appointment with her on Dec. 3. Not sure how much she knows about J pouches. My surgeon said all my after care would be with him through his office, but I have had difficult getting answers through his office. I will try my GI. Thanks for the suggestion.

Ryan - have you had any trouble with not being able to empty, since your takedown, like you had at times prior to takedown? Oh, and the cramping is more like where you described it, low between the pelvis bones. How have things been going since takedown?

Oh, and something else I forgot to mention, this all started happening about 2 weeks after I had my pouchogram. Never had a problem with this for the year before that.
Posted 11/3/2014 4:51 AM (GMT 0)
Sorry, I thought I responded to this the other day, but I guess it didn't go through.

I haven't had any significant trouble emptying since takedown. There are still times in the morning where I'll have to go to the bathroom twice within an hour of waking up, but its not something I would call problematic. Immediately after take down it was different, but as my pouch continues to mature it's happening much less often.

I did also have cramping the first few weeks after takedown which has subsided as the weeks have gone on. Again, for me, I think it's all been typical issues that are very normal and it was never anything painful or inconvenient enough to cause me to worry.

It's weird that this all has been happening after the pouchogram. Was there any problem with them inserting the tube for the contrast such as pain, scraping, etc? It still sounds like more waste has been bypassing the stoma than usual which could be the cause for the problems. I wish I could be more help.
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