Having trouble-Any Colonic J-Pouchers out there?

mtforbes · Post by **mtforbes** » 2006-12-22 07:26:05

I just saw my surgeon yesterday for a 6week post ileostomy take down check up, I am now reconnected with a colonic j-pouch. I guess you could say there was good news and bad news. The good news is he said everything looked great; he gave me the ok to ride, run and do anything I wanted physically. The bad news is he wasn’t surprised by my symptoms (frequent small hard stools, constipation, symptoms very much like disuse proctitis and then explosive BMs with throbbing Butt Burn that last for several hours afterwards). He basically said I will have these symptoms and will have to learn to deal with them and perhaps over time they will be less severe. He wasn't convincing that they will lessen that much. He said my pouch (Colonic J-Pouch) is small and thus I will have a lot of small BMs. He pretty much just offered pain medicine to deal with the symptoms. I'm not crazy about using pain meds, they make me tired, don't help the butt burn too much and worry my family. I am not sure how long I can go on like this and miss by bag much of the time. Are there any other Colonic J-Pouchers out there with any suggestions or insights? Or anyone else for that matter? Thanks!

dawn · Post by **dawn** » 2006-12-22 08:43:24

hi, there.

So sorry that things are as they are. I do NOT have any experience with the jpouch, twas never an option for me.
I'm sure that someone with experience will have some insight for you and they'll be along shortly to answer those concerns.

Just a couple of thought, after reading this. Does your diet, and possibly changes therein, help or make this worse? Did the doctor address that issue at all? Have you the possibility of seeing a nutritionist in an effort to find something that would be more consisitent?

Also, I would assume that 6 weeks out is much too early to make a 'never going to be better than this' judgement. While healing has occured by then, you've only now been given the go ahead to return to activities that will no doubt change the way you feel, etc.
It is very possible, in my opinion, that returning to a healthy routine and regular diet, etc, will make significant differences in the way you feel and your body's response to things. MOST of us can probably tell you that over the first 6 months things improved steadily, issues like gas, regularity, learning what foods affect you in which ways. Reserving judgement until you're in a more normal routine would be prudent.

All of these surgeries are not a 'given' quantity. It is easy to see how you would feel like you miss the pouch and it's "known quantity." After you've had more time to adjust and figure out if the new issues are acceptable to you from a standpoint of 'quality of life', then you can re-visit this with your surgeon.

Here's hoping that each day gets easier,
dawn

Mark · Post by **Mark** » 2006-12-22 09:40:32

I do not have a colonic J pouch. I had my rectum removed due to rectal cancer and have a straight colo-anal anastamosis. I found the information on the attached link from MD Anderson Cancer Center very helpful.

http://www3.mdanderson.org/depts/hcc/su ... rticle.htm

Good luck!

Mark

Charles_in_Tx · Post by **Charles_in_Tx** » 2006-12-22 12:02:46

Tou may want to check the Discussion Board on http://www.jpouch.org/

mtforbes · Post by **mtforbes** » 2006-12-23 05:45:45

Thank you so much for your reply. I am still experimenting with my diet and am not sure much makes a big difference. I have learned to stay away from large amounts of roughage and am trying to eat foods that will soften the output. My doctor thinks a softer stool should help some and has suggested Mirilax and Milk of Magnesia which gets things going, but is not very pleasant. I guess I haven’t found the right mix yet, but have started to keep a food/stool journal that hopefully will help. A nutritionist is a good idea, do you know if insurance will pay for one? Yes you are right that it is still early and I need to give it more time. I am just frustrated, this disease keeps going from one horrible phase to another and I guess I set myself up for seeing the light at the end of the tunnel too soon. It just feels like there is something wrong and I had hoped my doctor would have found something he could treat. I am thankful though for where I am compared to where I was a year ago and for having found this board with such caring and compassionate people. Thank you all for the suggestions, I will give them all a try.